My House of Usher

2009-07-23T12:15:00.000-07:00

It seems my last few blogging posts have begun with "I haven't posted in a while....". True again. I find that once I get into something I get sick of it pretty quickly, particularly if it is something negative: like losing my sight and hearing. I had convinced myself to put Usher Syndrome on the back burner for a while and think about other things. Truth be told, I'm still trying to figure out what to do with the rest of my life. Some nights I wake up and it hits me, my job raising kids is more than half done. My eldest is 16, middle child 14 and the youngest will be 11 in a few short months.

Talk about empty nest syndrome. I'm seeing that mile marker show up on the not-so-distant horizon and wondering what the future holds for me. Uncertainty, is the only thing I CAN count on, and hopefully prepare myself for. In my 45 years, it hasn't done me any good to count on anything or make plans, because the unforeseeable has a knack for happening.

A few of my friends have gotten their first guide dogs, and I've read their accounts and talked with them about their experiences. I have no immediate desire to apply for a dog, though I am eligible. I am happy for them, and read and listen with great interest. I suppose my needs will change when the children do leave home eventually, and the need for guidance, and companionship, will be more a priority.

I've experienced major burnout, trying to figure out what to do vocationally with my limitations, how to live on the disability and child support afforded to me and the children and how to just be a good parent with less. My costs of living keep rising and my income does not. This can't continue indefinitely. I made the mistake of accepting an introductory offer to look at a work at home opportunity, and stupidly gave out my credit card number, to which this 'opportunity' has helped themselves to my bank account. Of course I've disputed the charges and taken the matter up with my bank. I was told to basically, call off the dispute inquiry, and the 'opportunity' people would work something out with me. Too little, too late, and I don't respond well to ultimatums, and don't tell me I can't talk to my own bank. The bank has refunded my money.

Add to that I took the kids up to Baltimore, Maryland, after getting sick of watching everyone else take off on travels while we sit at home and feel sorry for ourselves. A good friend gave us a few nights stay at a downtown Baltimore hotel, and we set off for a few days of rest and relaxation. I was suprised as to how tense I was about going and taking this kind of responsibility on the road with my limitations. I had to prove to myself we could manage. I had feared that they too, helped themselves to my credit card when random charges appeared outside of what was notated on my bill when I checked us out. Thankfully, those were authorization and 'incidental' charges automatically taken and any unused sum is to be refunded to my account via my bank. I'm keeping a close eye on that.

Trust. That's something that is lost when you lose any of your senses. You don't trust what you see. You don't trust what you don't see. Hearing is the same way. You question EVERYTHING. You question if you heard something right, saw something correctly and before long you question your own sanity. It makes a nervous wreck of a body. I don't trust people behind counters in banks, in hotels, or anyplace else, and am learning to document, document, document and take an accounting of everything I do. I closed a charge account recently when they sent me 'notification' that my interest rates had been dropped. I was shocked at the rate, and chided myself for not paying attention, because the rate had been hiked, several times, without my noticing it. I've also noticed my bank sneaking in $1.00 charges when I use my debit card in certain places like the gas station.

Now for the mechanics of travelling: I heard some protests about us leaving and hitting the road. The children's father was concerned for our safety driving through the dreaded VA/DC/MD corridor with our daughter being only 16 years of age. I planned our route, and alternate route should the interstate have been too challenging. I gave her the option of cancelling the trip if she didn't want to drive, and she insisted she wanted us all to go. As it turned out, she didn't need the alternate route and sailed right on up north without incident. I got nervous when the concierge asked her to park the car while I checked in, and let hotel staffers know, she was not to enter the parking deck and park without me in the car with her. Our luggage was loaded and delivered to the room and she was allowed to wait until I returned.

Being a 'city' vacation, we parked the car and forgot it and walked where we needed to go. And, being a 'city' vacation, parking is at a premium and normally $21.00 a day, but we were discounted to $ 19.00 a day. I was amused to read the online reviews for this particular hotel and the outrage of some patrons who were suprised at the cost. Parking in the city is always costly, no way around that. I was glad to know it was off the street, and kept safe until we were ready to depart.

The hotel, was very nicely decorated and recently renovated. I found the decor very tasteful, very rich, and dark. The carpet had swirling patterns in it and made for a confusing walk down the corridor. Hence the cane came out, and did my seeing for me. This was particularly true when visiting the large indoor pool. My excited children bolted ahead, anxious to throw off their shoes and towels and take the plunge. I didn't want to plunge trying to catch up with them, and could feel the nervous lifeguard's eyes on my back.

On the streets of the downtown Inner Harbor, my caning skills were put to work to the max, only failing me once: when my cane didn't identify a railing that caught me in the gut, simply because it wasn't anchored to the ground, but the side of a building, and jutted out into the street. A friendly traffic cop got to know me as I passed back and forth over the few days we were staying, recognizing me with my cane, and my kids. At a corner where there was not only automobile traffic to watch out for, but a light rail, he stepped foward and let me know when it was safe to cross. Thumbs up to Baltimore on that one.

As I sat poolside and watched the city rush by in the evenings while my children played, I thought about my choices. Richmond, VA has very little to offer in the way of mobility and employment opportunity for me. Politics and racial issues have slowed progress and collective thinking for change in this city. There was a time when this city was one of the most dangerous ones to live in because of our high percapita murder rate. I cannot imagine a light rail service ever making it here because of the constant bickering between the city and counties, and the lack of good leadership, and the lack of appeal the City of Richmond has in attracting tourism, big business, and even local residents. Here, most everybody wants to live in the surrounding counties to feel safer, and not pay the notoriously high real estate taxes in the city. Much of the tax base of the city falls on home ownership, and a small percentage of private-enterprise businesses. Most of your big tenants taking up square footage in downtown office spaces are govermental offices on all levels.

We lost our minor league baseball team due to the red tape in getting a new stadium built, which did not come to be. We have no light rail, and the rail service we had a century ago down "Broad Street" is just a distant memory and would be costly to replace. We have very unreliable cab services to anything other than the airport. The bus service is dirty and it's paratransit services are something I've vowed never to use again, unless absolutely necessary. The rudeness with which I was treated during my last ride with them had me shaking my head. Hearing my contemporaries complain of the same at the Center for the Blind and Visually Impaired. No, Richmond is not a hospitable place, and the surrounding counties are built for the SUV-minded suburbanites with plenty of disposable income.

Prisoner In My Own House

2009-04-16T05:55:00.000-07:00

I haven't posted in a while, mostly due to other life events and keeping busy. I've found it a relief to stop marinating in my own juices, concerning deaf/blind issues. But here this week, with 3 days rain and no way to get out of my home, still a prison, I've been sorely reminded I am still functionally deaf/blind. This is the time of year my marriage came to an end, ten years ago, and even a decade past, it is still hard to 'forget' the dull pain that never completely goes away. I wrote to a friend 'how much time has to pass' ...

In recent weeks I took to my yard removing old debris, tearing out ivy vines growing on the house and everywhere I look. It was literally choking out some of the trees on the property. I was given plants from my sister and got a pickup load of mulch with my handy ex-husband and loaner truck. He laughed as I got out of the truck to inspect a pile of compost and topsoil mix, remarking that yes, I still get get excited about piles of dirt. As I begun to plan placement of my hostas, I realized that its been ten years since I had a yard to work in. I struggled with seeing the 'whole picture' in planning placement of the plants, as well as searching all over the ground for where I laid the damn shovel, rake or hose nozzle last. Tunnel vision really sucks. I gave up pursuit of my landscaping degree because of it. One trip into the field to start planning the yard of a house under construction had me dodging broken bricks, ditches, construction debris and a very real sense of 'hey, I could really get hurt out here'. I dropped out. Once again a quitter.

On a daytrip to Washington DC's Smithsonian with my children and their dad last week, I found that navigating the inside of the museum was not enjoyable. All the exhibits are dark little caves with little spotlights on factual displays. Julia Child's Kitchen was on display and was a dead-ender. Once you got into it, you had to turn around and fight like a salmon swimming upstream to get out. People are rude and carelessly send their toddlers to play in your path, in spite of my wielding the cane. It was spring break week, and the line to the First Ladies' gown collection was a mile long, so we decided to cut outside and see the city on foot. It was noted that the line to the Holocaust Museum wrapped around the building. That was another 'maybe' on our list.. sigh. We took to the Metro, and headed for the DC Zoo.

There, my daughter spotted a snake wriggling across our path and screamed, and ran. I was walking beside her, and became alarmed at what she was running from. As it turned out, I stepped on it. Had it been a big snake, who knows. The snake was not harmed, by the way, but picked up by a much braver girl behind us, and released into the bamboo brush. Once I got home from that experience, I took a good look at the ivy grown hill bordering my yard and decided.. it needs to come out. It's right at the drainage ditch seperating my house from a neighboring church, and I don't want to step on something later this summer. I'm seriously considering steel toed boots?

I also built two boxes for the beginnings of my raised bed herb gardens, signed up to vend in a local farmer's market and put my pottery wheel together. My daughter and I tripped down to the ceramics supply and I bought my first supply of clay in almost a decade. Now I need to get an electrician out and wire the carport up for my kiln. If the weather would cooperate, I could begin production soon.

With everything that I do I weigh safety issues. Is it safe for me to work in the yard? Will I step on a snake. Will I step on the shovel or spear my foot with it. Will I burn myself on the kiln. Will I hurt myself lifting the 200 lb flywheel into place on my kickwheel frame. Will I injure myself using the lawnmower (I did.. many years ago). Will I bash my head on a rock bending down to spread mulch.

Nothing escapes the db curse.

Flip side. One of my support boards has held up for discussion 'hope' for a cure. The lifted ban on stem cell research throws open the doors for research, development and implementation of treatment and cures for many diseases - including Usher. I've picked up an article that even suggests the strong possibility of hearing being restored. Cell types are being regrown - holding promise for replacing dead and dying retinal cells and the cells making up the auditory nerve that sends sound signals to the brain. Even the hairs within the inner ear have been 'regrown' successfully. It looks like the sky is the limit.

Then come the ethical questions. What is the source of these stem cells? Are embryos being sacrificed for this? Or are we using cells found within the umbilical cord/cord blood. How does the Creator see this? Is it a gift, or are we toying with things we shouldn't? Will this lead to more questionable practices such as 'manufacturing' human embryos for research, organ growth and harvesting? Should we accept our lot and let it be, or embrace medical science? I know I have much more work to do before I can make an informed decision.

For today I am wishing the cold and dampness away, and wishing I could once again drive... and get away to the countryside and just be 'normal' for a change.

Changing Course

2009-03-17T07:32:00.000-07:00

It has been a while since I last posted here. I was in the throes of attending classes recommended to me by the VA Department of the Blind and Visually Impaired. After a week long of back to back classes, we concluded with a round-table discussion, or conference, involving me and most of my instructors, my facility counselor and the program director. My field counselor was not present, and I was told she could not be there.

Whatever, I thought. Wait a minute, wasn't she supposed to know me best, represent me, and serve as an advocate and advisor for me? If this had been an attorney or financial advisor, I'd have suspended the meeting until she could be there to represent me. But, I hadn't seen her in a year at least, and last we communicated I told her I was upset with her for the lack of speed in working on my case. She responded with a 'I'm sorry you are upset', and left it at that. We hadn't talked since.

Today I wonder what the purpose of a field counselor is. In hindsight I wish she had kept up with me, checked in with me when I was on the premises, and collected feedback from me on how the program was going. It took over a year to get into the program and once I was there I found it to be a mix of emotions. After the second week and a snowstorm that rendered us without power, plus without the phone/internet/tv from our move I could not drag myself over there and leave 3 kids at home to rattle around with nothing to do, no adult around, much less home-bound with no way to get out.

It hit me as the snow began to melt, the power lines cleared of debris, and I had stamped my feet loudly enough to get my internet/tv/phone installed regardless... I found the program utterly uninspiring, and depressing. I could not get myself motivated enough to return. I began to re-think. I had been told over and over again - I was 'advanced', 'unique' and still had 'much funtional vision' left, and more experience, education and resourcefulness than most candidates. I had already received a fair amount of mobility training from home, and was on a waiting list at the center. Braille was years off from being a necessity. Handwriting and cooking skills were almost a joke, and for me, a waste of time. Computer class was a quick-pick up and learning keyboard commands was a matter of practice and doing, not being shown how on a continual basis. The thought of sitting in classes, and sitting for hour blocks of time, waiting on classes, depressed me.

I withdrew from classes. The sun came out. The weather warmed, and I took to my yard with my pruning and landscape tools. I trimmed overgrown and neglected American holly bushes. I ordered topsoil for raised herb beds I am planting for summer. I began to plan the steps to getting wiring and placement for my kiln and dug out parts of my pottery studio. I was feeling excited and alive again. I was changing the course and it felt good.

My ex husband and I spent a day or two repairing, sanding and working on a chest of drawers trashed by one child, and lovingly restored for the next. It was brought home and placed in our daughters room and I breathed a big sigh of satisfaction - for her finally having her own room and places to put her clothes and belongings, and for me, for finally having more than one creative outlet. The Center classes were stifling.

I made up my mind, that yes, my vision is going and I was making lifestyle changes. However, I am not giving it up without a fight. Every rod and cone will have to be pried out of my hands and I will go kicking and screaming. I will continue to do all that I can and what I love for as long as I can, and beyond. I'm not resigned to this - yet.

The snow and cold rain fell again, and I 've picked up another project. A flip on the house I was living in for a relative. I was so excited last night I couldn't sleep. I once worked in real estate and loved the investment property work best... seeing years of nicotine washed off walls and fresh paint and flooring, new appliances and fresh landscaping, and all the things that breathe new life into a new home. I would consider myself lucky if I could do this for a living. But, for now, it's a labor of love and I can't wait to make it happen.

I never felt that excited about the prospect of running a food-service business, nor learning Braille (though my instructor did pick up on a little excitement from me - it is very challenging and interesting), computer skills, cooking skills or otherwise. My blind mobility instructor had told me 'go back to the things you love, and work your way back from there'. He's a brilliant man and I do miss seeing him.

Now my field counselor, as sweet as she is, has asked me 'but do you have any marketable skills?" I have yet to respond to her email because I am so dumbfounded by the question. Hello? She's known me nearly two years now, interviewed me, talked at length with me about my skills and vocational goals and questions. We've done this via face to face meeting, email, telephone, and I even sent her my resume. We weren't talking about the weather or sports or anything else, of that I'm sure. I've made it clear my objectives are to be gainfully employed in something I am physically competent in and can continue to do with technology and assistive training. There was no vocational advising to speak of. I was told I was educated, experienced and ' very resourceful'. And she asks me this?

In my next post I will share with you my happenstance meeting in a local business here with another legally blind gentleman who told me more than DBVI did.

Day Four "At the Center"

2009-02-19T16:10:00.000-08:00

Well I've wrapped up my week of evaulations in all areas that the Virginia Center for the Blind and Visually Impaired has to offer. I've run the gambit of emotions from disgust, fear, denial, indecisiveness, anger, and a few positive emotions too. I've been most impressed by the family atmosphere of this center, and the sharp memories that all the instructors have. To walk down a hall you'll not be passed by without a friendly hello and greeted by name. They may not know your face necessarily, but they know your voice, your personality, and why you're here. They know. They've been there, done that and when you hear 'I understand' you know its grounded in sincerity and experience, and not in pity. They have devoted their careers to helping others like themselves, and I admire that.

My morning got off to a rough start and I had to call in and let them know I'd be in later. I signed in and parked myself in the student lounge, which I am now thoroughly sick of. It was 11 o'clock when the lounge emptied of already-enrolled students heading to class. I found myself alone and no instructor in sight to come fetch me, as is customary during evaluation week. It was now a half hour into the time slot so I poked my head out and inquired. I was directed to the office of the VOC (vocational counselor) and found her busy in the midst of a crisis or two. She walked with a crutch, and a walking stick and had some limited vision from what I could tell. I picked up on her wry sense of humor right off. Once she was able to give me her undivided attention we talked for about 20 minutes. She closed the brief meeting with her evaluation that I was an 'unusual' client. I had much experience under my belt than most, was halfway intelligent (no she didn't quite say it that way) and had demonstrated resourcefulness. For the second time I was being advised to return to what I love, and know well, that assistive technology existed that would enable me to keep going even if and when my vision gets worse. I spoke up and snorted, um yes, but taking a keyboarding/typewriting course is a prerequisite I do not want to spend 3 months in. I do not need someone showing me how to type and timing me, much less teaching me to write a business letter, label an envelope and fold and stuffed. She smiled and assured me all they wanted to be sure of is that I could type at least 35 wpm with a 95% rate of accuracy before getting into specialized computers. It was obvious from my experience that I had worked with advanced programs, and she was certain I'd be recommended past rudimentary keyboarding.

It was now lunchtime, and I had already helped myself to the croissants and chicken salad while waiting in my ex-husband's restaurant to get a ride over this morning. Somewhere I had set down my diet Coke, dang it, and I had no recollection where. So I headed off to the cafeteria for their not-so-wonderful iced tea and anything else I could find to compliment the sandwich. Fried chicken, collard greens and cornbread were being served, and I wouldn't be a Southern gal if I didn't have some. I forgot all about the sandwich and had a wonderful meal that reminded me of my grandmother's Sunday dinner. KFC doesn't quite cut it. Still hungry, I ate the sandwich too. I hadn't been able to eat much all week but was making up for it today. After all, I would work it off tomorrow, moving day with my family.

After lunch, my O&M dynamic duo, who I have come to look forward to working with came to fetch the newbies. I have never been so inspired by anyone as I have by these two. Their vision loss is inconsequential, and they have overflowing optimism and skillfullness. We were given new canes, the one piece, lightweight carbonite canes with no leather handles and metal tips. Out into the hallway we went, where I was instructed to grip this in an entirely different manner as my folding cane. To date I have been trained to use a folding cane with a nylon 'marshmallow' tip that rolls back and forth and I have not done much 'tapping'. My first nylon tip was not tapping but in a month I had worn it to a chisel point and had to replace it. This cane was a totally different instrument and much easier on the wrist. The fingers do all the pushing and maneuvering, and the wrist is given a break. We walked, and headed out to the 'Lambourgini' parked in the lot out front to learn how to get in and out of a car with this thing, without making the 'thirty-dollar mistake' as it is coined, of shutting the cane up in a car door. I suppose you're learning not to spear everyone else in the vehicle as well. Having this thing is like having an extra leg, and figuring out where to put it when it's not in use will take some getting used to. Heading back in I marveled out how '"J" could hear what I was doing with it, swinging it too wide, dragging or tapping, and she even detected from several paces behind me that I was not holding the cane as she had instructed. Don't ask me how, but she was right on it.

Next session was recreation, again, groan. This was the third day around and our instructor stopped in and gave us the 'option' to pass, and we were happy to do so. I had an hour to kill before my evaluation meeting, so I did head down to the deserted rec. center, remembering the Coke machine, and figured I'd hang out in a different lounge. I'd mentally plan my move for tomorrow. While there, I figured what the heck, I'll shoot some pool. I laid out the balls, opened the blinds, located the pool sticks after a few minutes of wandering around looking for them. I started to play and after about ten minutes, realized how pathetic I was at it and swept them all into the pockets, replaced the cue, and headed back.

Sometime after 3:15 I was fetched by my center counselor and shown into the evaluation meeting. As promised, almost every one of my instructors for the week sat around a huge conference table and I was seated at the head, with one instructor in a wheelchair in the corner to my left. My counselor sat to my right and the center's Director at the opposing end or foot of the table. I felt a bit intimidated. Even in my 25 years of work experience I'd never sat in a meeting quite this large and been at the center of attention. Nontheless my counselor started the meeting, and typed away on her laptop taking the minutes, as the Zoomtext program recited her notes to her in a low, monotone male voice. Around the table we went, as each instructor recited the notes taken during our time together, and their observations about my vision and its impact on what I was doing while spending time with each of them. Each had his or her own personality and recalled the cracks, jokes and quirks of our meetings. I chided my ABE (Adult Basic Education) teacher about her trick blue moon question and ratting me out for less-than-impressive math scores and swore the room to secrecy.

Once again I think the mobility instructors are mind-readers, because right off I was invited to lean the cane against the wall behind me for the duration of the meeting. I made a joke about having the extra leg, and thanks for telling me what to do with it. On around we went, and as the instructors at the end opposing me began to speak, yes, again, my mobility instructors spoke up and said if I could not hear, or see, adjustments would be made. The director noticed my squinting. I explained that I could pretty much tell what was being said - by pairing lipreading with my memory of what was discussed in class. Any residual auditory or visual information was filler material. The dynamics of being functionally deaf-blind were definitely in overdrive at this moment and it did not go unnoticed.

Wrapping up, and with no differences in opinion or mistaken facts taken down, it was recommended that I enroll part-time as a commuter student and take only those courses that would most benefit me now by shoring up my confidence in my work, my mobility, and a few basic household skills. I would be going in three days a week for 3-6 months total, with a break for the summer to be with my children. The center opens up for children to come and receive training as well for a period of 5 weeks, so there are no adult students at that time anyway. I would be taught non-visual orientation and mobility techniques on campus, and once I mastered those, we would hit the streets and re-introduce the vision. This would give me the confidence I crave, and ensure my safety. I would be learning JAWS and Zoomtext and learning more keyboard commands that I do not already know. For three months I would be taught Braille contractions, and picking back up in the fall learning the alphabet for another 3 months. I was also recommended for a low-vision exam in which low-vision gadgets and devices might be prescribed to help me with some of the more tedious tasks such as reading pill bottles, discerning colors on clothing, etc. I would receive some handwriting techniques to equip me for the long-term when my vision will worsen but my handwriting doesn't have to. Some basic kitchen skills would be taught - and I would learn to slice and dice while under blindfold, as well as remove hot dishes from the oven. I would also receive an hour of counseling from week to week to keep tabs on my progress and bring up any new challenges and concerns I may run into. From there, my counselor walked me out, and briefly gave me the rundown of what would happen next, and what the report to my field counselor would contain. I added that a hearing test and the promise of new hearing aids were still out there. My O&M instructors had cautioned me that just wearing one wasn't doing me much good in picking up information on where traffice was, much less what tapping might reveal to me, if I could hear it. She said she'd get right on it, and gave me a thumbs up.

In all truthfulness, I almost quit today. I almost didn't go in. I begged my ex husband to tell me I didn't have to, and he said it wasn't his decision to make, but wouldn't I at least like to go, and know I finished the week before making a decision. Now I knew I'd be back on Monday to start learning the skills needed to live the next chapter of my life successfully.

As my son often says, "it's all good."

Day Three 'at the Center"

2009-02-18T17:03:00.000-08:00

What a roller coaster week this has been. It has been a grueling one with lots of redundant questions, lots of waiting, lots of test taking and lots of little details. It's been one long orientation week that I could re-invent and make a heck of a lot more efficient. With the State's funds in short supply, hiring freezes and a pall of uncertainty in the air, this program could definitely be executed better. That's just the manager in me coming out. Same goes for GRTC's CARE transit, with which I have just about had it.

Get this scenario: a visually impaired person (that would be me) stands and waits for pickup, at the 'bus stop' in front of the Center, wearing glasses and holding a white cane in hand. The van zooms by, the driver looking wildly around. Now this place is a complex of buildings much like a small community college. The regional office is at 397. The Dormitory might be at 398, the Cafeteria at 399, Library and Resource Center at 400 and the Recreational Facility at 402, all the way to the rear of the classrooms. The main complex where classrooms are housed must be at 401, because I was picked up by a loud-mouthed, abrasive driver who shouted at me, "you Miz. (name)? you'd better call and CHANGE that cuz' yo at 4 0h won, not no free naaan sevun.

I sat down and resisted the urge to snap back at her. Sorry Ma'am, I told her, but that's the address posted on the letter I received telling me I would be participating in this program. I thought to myself, what they choose to number their buildings is not my concern, nor can I see what the buildings are numbered as without getting out and walking the entire campus. Figure it out, lady, you have a normal set of eyes and wheels to ride around on. I would think that the circular drive, the flagpoles, and benches fronting on the main road, with students standing, sitting and waiting would be indication enough that ok, this is where they're waiting for their shuttles. CARE vans trail in and out of there all day long and you cannot tell me drivers are not familiar with this facility. Not only that, one of my drivers HAD called into 'base' and corrected 397 to 401. Why it was not on this driver's clipboard is none of my concern. Sounds like an internal issue to me.

We took off and I was treated to the noisy rough ride in the opposite of my house to downtown and the Medical College of Virginia to pick up another passenger. En route I got to hear the communication between drivers and 'base' at top decibel levels that may very well cost me the remaining 20% of my hearing. I also heard personal conversations between the driver and her friends, relatives, as well as the dish on the family that had moved in on her from out of state, unemployed, and no place to stay. So, they're here to mooch on mama, and she's glad she 'don't got no one cuz' she don't need the headache." I was annoyed, insulted, and nauseous from the filfthy interiof, the smell, the cranked up heat, rattling seatbelts slapping against the sides in the rear, and most of all, by her ungracious attitude. An hour and thirty minutes later, and after her pit-stop to WaWa just two minutes from my house, I was let off not in front of my house, but at the corner. I guess that was my punishment for being at 401 instead of 397, and inconveniencing her. When I got in, I called and canceled my ride for tomorrow. I'll probably call again and file a complaint after I've had a chance to sleep on it.

As for classes and evaluations it was another fun-filled day (not). The first meeting was another videotape and presentation on what the Center offered, as if I didn't know already. That would have been more appropriate to hear on the first day, and definitely before the HIV awareness chat.

Second class was Independent Living Skills. That is, how to sew, mark your clothing, your medicines, foods, etc etc. It was informative enough and I now know if I have a burning desire to sew, that a self-threading needle would be a great way to do that. I know that in the future should I not learn a few common sense things along the way, these folks are there to help, and do have a variety of neat tricks to share with low-vision and blind clients. The instructor was friendly and personable enough, but we agreed I was not at the point of needing his instruction just yet. I would not be recommended for his class. Nuff' said.

Third up. Adult Basic Education. A definite waste of time. The instructor is a nice enough lady who keeps a rather disorganized classroom. She dug through her rubbermaid bins of papers and I chided her for digging around for more "blue moon" trick questions to rattle me with. Instead she produced a math test two pages long, and I groaned. Page two was given to me, and I was told to start on that while she ran to copy page one. I did what I could and marked out the Algebra and whatever problems I couldn't do. If they recommended me for Algebra I would scream. She returned with the 'easy' sheet and told me to start on number 17, and work up from there. I did most of them and told her 'take it or leave it, I never got past Algebra I in school - not my thing. This is why my sister the CPA is making more money than I ever hope to. She laughed and said, no worries, I'm not recommending you for my class because you are beyond high school level. I hold a BFA from Virginia Commonwealth Univesity. Ya think?

After lunch it was back into Orientation and Mobility with blind instructor "J" taking more notes and discussing the different types of canes. We were being asked to switch to the long, lightweight fiberglas canes without the leather handles, the elastic cord in the center, and the nylon tip. Instead the one piece lightweight model held small metal tip, which is an excellent conductor of stimuli - that is, information on what the cane 'sees' on the surfaces you are travelling. The leather handle of the old fold up kind was likened to a boxing glove, masking over any sensitivity to touch whatsoever and causing loss of information or 'non-visual stimuli'. The nylon tip was not an efficient tapping tool, as hearing students are able to distinguish sounds by that metal tip: on carpet, walls, concrete, asphalt and other substrates which register a different response when tapped on. That technique would not work for me most likely, but if it did, it would be in part and combined with other non-visual stimuli. My comrade stated to her that he would like to 'try' blindfolding and walking around the campus only, to which I watched her and could see her smile spreading. I told him 'oh boy, you're in for it now'. Yes she was a heavy believer in blindfold training first, and re-introducing sight, and he had just made her day by wanting to try on the blindfold. She did tell him, they would master techniques on campus, and then venture out onto the streets, bus lines, shopping centers or wherever, and put those skills to work with his remaining vision, if he was willing to try and would trust her. Deal, though I don't think she'll succeed in convincing any one of us that any of this is 'fun', by any means. I have to give her a high five for trying and remaining upbeat, and - young.

Next up was recreation again. We were walked down to the new recreation facility and given the tour of the commons area with pool table and TV and games. A swimming pool. A 2 lane bowling alley and a half-basketball court. We sat and played a few question and answer games designed to get us to disclose our interests. When asked if I would be taking this class, again, my answer was the same. I am a commuter student with three children at home. I'm keeping my time here to a minimum, thanks, and prefer to play at home with them. However, what a great asset to those students boarding from around the state. I know I would go crazy being confined to a dorm room.

Lastly came computers and keyboarding. Two gentleman instructors were tag-teaming for an instructor out having surgery. I was seated, asked the same questions again about my vision and acuity. Do they not have a case file on me that is shared with all instructors? This takes about 15 minutes each time I have been asked. My education and computer knowledge were asked, as well as my vocation history taken and my goals. I was given a typing test. I can type all day and night long using traditional typing methods. However, JAWS was up and each word or number I typed was audibly announced and I found that distracting. During the second test I had a false start, and asked for the sound to be turned off . Put on Stevie Nicks and I'll be fine, but don't talk to me. After hearing a recorded message from the absentee instructor, I did a five minute typing test. I could not get used to the bristly tabbed circles adhered to the 'f' and 'j' keys, for orientation and placement of the fingers by a blind user. The pads were too thick and bristly, and my finger reacted to that, and jerked to the next key.

The two gentlemen proceeded to ask me did I want to work in customer service, or be an administrative assistant, and there was some mention of applying for a position with the Department of Taxation as an unpaid- intern position. (Are they KIDDING.. do I at least get a break on my taxes?) No deal folks, sorry, but this isn't the stuff my dreams are made of. I told them both I was not interested in becoming a secretary. I had managed several businesses in my time, and knew full well how to type business letters and fold and stuff into addressed envelopes. I was not here for that, but I was here to learn what adaptive technologies there would be for me down the road as my vision loss progresses. How would I convince a client or employer I'd still be able to consistently do the work long-term? I was not pleased to learn that the typing/keyboarding would be the prerequisite to going into 'advanced' computers and learning JAWS, Zoomtext, and whatever else there is.

Thanks, but no thanks.

I left there in a foul mood, quite honestly. Being greeted by the bus driver with a bark and bad attitude was the icing on the cake. I'll decide tomorrow if completing day four, and seeing this through to evaluation hour with my field counselor, center counselor and respective instructors is a waste of time, or not. I'm going to sleep on it and do an attitude check in the morning.

Stay tuned.

Day Two "at the Center"

2009-02-17T17:07:00.000-08:00

Thank goodness I have a good relationship with my ex husband and he works in the vicinity of the DBVI's Center. Without the ridiculously early pick up by public transportation, I was able to take the time I needed this morning and prepare three children, and myself for the day's activities. He took me for a quick stop into WaWa for a sandwich and a drink to carry along and then dropped me off at the door before classes. I went back into the fray after a fitful night and lots of visions of eye-less faces and canes, and fearing that I was coming down with something. I had chills and overheating all night long, probably more a result of a late nite spicy dinner from a local cafe rather than my experiences yesterday.

I first want to retract my statements about the 'attitude' from yesterday. In my own ignorance I have overlooked the fact that each individual coming into the center comes from his or her own walk of life, and some have issues besides blindness. I don't know what might be at the core of young man who slouches and refuses to speak audibly, but I know I cannot draw conclusions because I do not know, nor is it my right to know. He has as much right to be there as I do and the professionals have decided on his involvement in the program based on their expertise and familiarity with their client. Rather than delete or edit the previous post, I thought I would leave it up as an illustration of how drawing wrong conclusions is all to easy to do, and just plain wrong.

That said, my day started off in the conference room once again, talking with a licensed nurse over a topic I didn't expect to cover here - HIV. This is a state, and perhaps, federal requirement too for the center, that mandates educating its students and raising awareness of HIV. Being that this school does board students, it is of concern that both privacy and fairness, not to mention caution be expressed to the students to eliminate fear and misconceptions about how HIV is spread. Given the boarding circumstances of both males and females health concerns arise about both casual contact and intimate contact between students. Casual conduct, it was stressed, was not a viable way to contract HIV. Drug use and shared needles, as well as unprotected sex, were.

I learned a few new things. The HIV virus can only survive 5-7 seconds out of its ideal environment. The three conditions needed for it's proliferation are darkness, warmth and moisture. In contrast the Hepatitis B virus can live up to 2 weeks on any inanimate surface. Needless to say I've been washing my hands, frequently, especially in this cold and flu season. I never knew that blindness can be caused by HIV, as well as Hepatitis. The things you learn when you least expect it. I also found it interesting that older folks know very little about HIV, however the younger generation knows more, as this stuff is taught in the schools. It's still a great tragedy that HIV remains on the rise, and is not a 'gay disease' but infects unsuspecting spouses and newborn infants just as it does the drug user and one who throws caution to the wind, even just for 'one time'. One bad choice can reap deadly consequences worse than blindness.

Next came counseling which was probably more productive than any one session I've had with any combination of therapists I've seen in my lifetime. Why? Because it was a PEER. Someone close to my age, and one who also had vision issues of her own. Who better to counsel the disabled than the disabled. We found we knew some of the same contacts, and hatched a plan to meet once a week and explore the issues, as well as online opportunities for expanding my learning of new blind-training skills that I could employ from home.

Third class up was Adult Basic Education. My counselor had already made the statement I would likely not be needing that. Some folks come into the center and need to work on their GED, or hone a skill pertinent to holding down a specific job. But for now, I would have to endure the evaluation process. After a brief introduction I was given a piece of lined paper (oh goody), a cassette and headphones. I had forty words to spell, and I told the instructor, 'you've got to be kidding'. I went on anyway, and have to say one or two of those words were difficult.. not only to spell, but for me to hear. I kept backing up the tape and replaying and the instructor had also goofed once or twice on the verbal numbering. Word number 44 disappeared, but word 45 appeared twice. Oh well - I graded her right back on her numbering and listing skills :)

Next up was sentence completion. John and Mary worked long and hard on the house but for the price they got for the house, the work was well (blank) it. Well duh. The final question DID get me and in my view, was more of a question of logic than fill in the blank with the appropriate word. The phrase 'blue-moon' refers to an event that happens rarely or infrequently. That said, if a full moon appears not just once a month but twice in a month, what is the 'blue moon'? I must've backed up that tape a dozen time before I pulled the headphones and asked her WHAT? My fellow 'student' just laughed out loud because he was struggling with the same one. The teacher had a difficult time explaining the question to me, and blurted out the answer 'second' moon. THAT is a question of logic. If a full moon occurs once a month that is a 'blue moon', presumably because it only comes around once every 30-31 days. However, if the month produces yet a second full moon, then THAT would be the 'blue moon' because of course, that never happens, and if it did, would be more rare an ocurrence than one full moon.

Whatever.

I grabbed my lunch sack from WaWa and headed for the 'hearing-impaired' phone in it's own little room and spread out my portable office of papers, bills, my new lease and phone numbers. I called all my utility companies and made arrangements to have water, power and gas turned on for my move on Friday. That took 45 minutes, and the sandwich was terrible... I'm losing weight this week for sure. I had no time to arrange phone, tv and internet services. There goes my lunch break tomorrow.

Following lunch was another Orientation and Mobility meeting. This time I met the 'other' blind instructor I'll merely mention as 'J' who is completely blind. She is young, spunky and very confident. I had seen her be-bopping around the premises the day before, and she was leading a tour when I met with her also-blind counterpart yesterday. Since I got all the attention yesterday, she and I chatted briefly over the previous days' notes and she moved on to my classmate, who I came to find out, also has RP, but not Usher. Gone are my notions that RP is so very rare, because it certainly isn't. And no two RP sufferers or Usher sufferers' I've met and talked to have taken the same course with their respective sensory losses. There is no time table, no recipe, no guarantees and certainly no death-sentences. I've since learned that my O&M instructors are adamant about freedom and independence, and view vision loss as a character trait, not a flaw. Given their positive attitudes, it's obvious they hold those beliefs near and dear.

After more discussion over cane and blindfold training, I went on to the medical session of my evaulation cirriculum. Meeting with the same nurse I had met with first thing this morning, we went over my medical history: diagnosis, time line, and the usual questions. She was pleased to find I had no other medical conditions nor did I take an prescription drugs. She explained something else I'd never thought of. How does a blind person with diabetes dispense insulin, if they can't see what they're drawing into the syringe, much less inject it into the right place. These kinds of things are offered to students with specific medical needs. Since I had none, I was not being recommended for this program. Thank goodness for my good health in that sense at least. Thank goodness those who do not have the means to learn to care for themselves safely.

Lastly was a general gathering of all the student body for Issues of Blindness. This is a round-table discussion of the issues that blind people face. It started off with a topic I couldn't hear so I tuned out. The girl sat across the room from me, with her back to me so I was lost. After that our director read a 'Dear Abby" question submitted by readers wondering when it was appropriate to 'help' a blind person walking down the street with a cane, when there were obstacles ahead. To help or not to help is the questions. The discussion wore on and I grew restless, as by nature, I can't stand to sit still and talk something to death. Answers varied from "NO, that's what the cane is for.. leave me alone' to "Thanks, but I can manage". The meeting wrapped up with Dear Abby's very accurate answer of explaining it's ok to ask, or to offer an elbow, but not to force, grab or startle and she reminded readers, canes are issued in conjunction with specialized training to deal with obstacles, drops and changes in the terrain. The general public do not understand that, nor the idea that the cane does not always signify 'total' blindness. That said, the director made her final plea for students to join in the Ukrops 10k run in March, and to get out there and raise awareness of blind mobility.

Good idea, but I'll pass. I wish those who participate success and a fun time.

Day One at "The Center"

2009-02-16T15:31:00.000-08:00

Today was the first of four days I've been referred to the VA Department for the Blind and Visually Impaired for evaluations and recommendations on the skill set I will need to cope with my ongoing vision loss for the short, and long-term. It started off with a nerve-wracking trip on the shuttle service that, as usual, took me all over creation before arriving at my destination. I was particularly irritated when we had to wait at another 'client's' house for 20 minutes. I don't relish getting up at 6, and leaving my house @ 7:30, to go sit in someone else's front yard and wait, and watch the driver sit and read the morning newspaper. It's those days I really miss being my own driver.

Nontheless, after being dropped off at the wrong door, I made my way into the unknown. Arriving at the reception area, I was asked if I was Mary (name) and I said, yes, how did you know? Some wisecrack about being psychic was tossed out, and I was shown a mailbox and given a schedule. Boy, talk about going back - I haven't seen a class schedule in many years. This one was huge, with large letters and full of acronyms, of which I only recognized the days of the week. I was told if that did not suffice, I could request one in Braille, or on tape.

After a brief morning meeting, and a welcome to myself and two other new arrivals who were male, I could see why my psychic greeter pinpointed who I was. We were picked up by our prospective instructors for each of our class sessions. We newbies were shown into a conference room to be introduced to our staff members, and make introductions of ourselves. One man was an older gentleman who returns from time to time as his vision loss progresses, to brush up on skills needed to stay in his job. The other, a youth who can be no older than 18, slouched and talked without speaking up or moving his lips. Instructors throughout the day tried in vain to coax him out with praise for being there, humor, and lame attempts at motivation techniques. This 'kid' had more than just an issue with vision loss, but attitude, I surmised. I wanted to shake him and tell him SPEAK UP and LOOK ALIVE.

But, of course I can't do that now can I?

Our brief orientation disbanded and I was shown into my next classroom by a volunteer. This class was labeled "KS" for kitchen skills. I was greeted by a small 60-ish woman who sat in front of a bright window using a Braille machine to take notes during our meeting. I came to learn she had lost all her visual acuity to RP and is only left with light sensitivity. I had asked if we could shut the blinds behind her so I might see her better and now felt a little foolish for blocking her light out. I marveled at what a mish-mash we all are - coming from all walks of life with similar and very different circumstances. I was asked what, if any, problems I had in the kitchen. After some conversation about my sending glasses and plates careening into the floor for not seeing them while cleaning, that I would spend 2-3 weeks under blindfold, learning to handle kitchen tools without injury and taking hot dishes from the oven without incident. I would be shown how to label controls, and eventually, could label spices with Braille labels, if I needed to.

Next up, was BR HW. Braille and Handwriting Class. My instructor was a petite little lady who herself had lost her vision years before and had it restored, functionally, by corneal transplant. She is not 100% but far from totally blind. We found that we both had problems with glare and made the practice of turning blinds, and selecting seats in public places that placed our backs to the window light. She did some handwriting tests on me and there were no issues there, but I was told some have difficulty writing checks and addressing envelopes. I have not progressed to that point yet. She moved on to Braille, and explained to me that learning it was a long and difficult process, no need to sugar-coat... there was no fast way to learn it. What was my level of commitment to learning this?

I was asked if I had a good sense of touch. I thought so, before I handled spices in kitchen skills class, noting how the dots are so tiny and that I'd never be able to keep count of them nor their placement. She taught me to line up the pads of three fingers and feel over the dots with not one, but both hands. Going through the Braille handbook, I was pleasantly surprised that I wasn't intimidated by it, and was able to discern the dots, their size, cluster shapes and similarities and differences. I'm happy her class is being recommended as one in my curriculum. I'd rather read Braille than listen to books, I think. I've committed three months to learning the contractions, that is series of dots that represent a letter or two that in turn represent an entire word. Another three months will be devoted to the study of the alphabet in Braille.

After being shown to the cafeteria and enjoying a surprisingly good lunch of steak, asparagus and potatoes, I was back in the student lounge to start the afternoon session. At promptly one o'clock my two comrades and I were picked up by our instructor for OM, Orientation and Mobility. Our instructor was a completely blind man, who later told us he was the first totally blind O&M instructor hired in this state. Now they have others and using blind O&M instructors no longer controversial. He shared some of his tactics and techniques he uses in the field to protect and guide his client during training. He knew the other two students already, as they had passed through the center before, and spent more time on me. I was tested for visual acuity both with glasses and without, as well as at a distance. How does a blind man do this? Matching Braille cards. I read the lines, and he follows with Braille to see if my answers were right. Who woulda thunk it.

I found him to be fascinating and a quick wit, if not a flirt. A tour passed through, and he kept us all laughing. One would forget he was blind or not even know, if he had glasses on and ditched the cane. We moved on to his philosophy in mobility training and he gave me his long, metal tipped cane that is lightweight and designed to give more information to the handler, as well as being easier on the wrists. At this time, the folding cane with roller ball trip causes my hands to fall asleep and I often have to stop, and shake the feeling back in my hands.

He went on to explain he was another big believer of NFB philosophy of blindfold training, BUT, within the safe confines of the campus we were meeting on. Acknowledging my dual-sensory loss, he stressed that we would 'back up on that' when it came to the real deal - street crossings and being in public. He felt it was important to integrate my existing senses with O&M techniques learned under blindfold. He promised we would 'get creative' and stressed to my younger slouch and bad attitude... this means total independence and freedom for you. I'm going to like this guy.

Next up was REC, which yes, turned out to be recreation. I was greeted by an instructor young enough to be my daughter and shown to the 'crafts room' along with my counterpart with the attitude. I noticed the kickwheel and kiln right off. She went on to explain that she taught classes geared towards relaxation and promoting enjoyment, and giving a break from the other more intensive courses. She taught crafts, and even activities in the gym, pool or bowling alley. Course were held several times a week, with open times during two evenings during the week. I felt silly, frankly, being given a little ball of clay and told to make a pinch pot. She seemed embarrassed when I told her I was a skilled potter, and had a BFA in Art. She asked if I wanted to keep the pinch pot and paint it later. I told her to roll it back into a ball and give it to her next student. When asked the same question, my counterpart could only muster 'naw, I cain' be doin' nuthin' like dat'. Sheesh.

Lastly, and after a 15 minute break, came something I've forgotten the acronym for, was the library and resource center. It offers a variety of free services, as well as peripherals for the blind to be able to read and write, and record information. Helen Keller started this service through the Library of Congress, wanting to make materials available to the blind for research, enjoyment and study. I was shown voice recorders, large print and Braille books, books on tape (including the KJV version of the Bible) and other devices. One little device looked like an iPOD with two orange buttons and four 'folders' to store digital sound recordings in. I found the presentation somewhat dull, but the instructor was not. She was more interested in me and how I got there, and suggested that Zoomtext might make my work with web design work possible long-term. She also asked that I consider teaching her to throw on the wheel when I got set up in my new home. Imagine that.

I rushed out of that meeting to meet my ride, and as I thought on the way home... I recalled her handshake when I was introduced to her. She was limp, and showed no strength in her hands. Vision loss won't stop her form learning to throw on the wheel, but a limp hand and lack of upper body and hand strength will. I'm glad I first suggested to her that her colleague teach her there at the center, and that she use the crafts room to practice. Beyond that, sure, I'd be happy to teach her, if I can.

On that note - will sign off for now and report on day two if I'm still standing tomorrow when I get home. This intensity of information, with waiting periods in between makes a body want to sleep. Stay tuned.

Shifting to The Other Senses

2009-02-08T05:49:00.000-08:00

On one of my support boards we have been busy discussing the compensations that are made for the deaf/blind individual during O & M training (orientation and mobility). I am once again blown away by our similarities and like-minded coping skills. What is it about my nature that causes me to think I am the only one who ever found themselves in a particular situation?

Again I find myself in a group of folks like myself: some have more or less hearing than I do, all have vision loss as well to varying degrees ranging from the beginning tell-tale signs of RP to total blindness. We have much to teach one another and there is comfort in keeping up with one another. Many folks use guide-dogs and sign their posts with their names, and their dog's name. Many of us use canes instead and there are probably a silent few who refuse to use one but keep one in their possession. There have been comparisons between the two methods of mobility and discussions about the pros and cons of each. My issue has been how to proceed with O&M training using the cane, when much of it is based around hearing. Most mobility clients are not dual-sensory loss folks. With hearing compromised, many cues used to teach the blind person to navigate are missed, and I have already found this is a threat to my own personal safety.

What other cues DO we use, someone asked? The answers poured in and stacked against one another, give all similar approaches.

Touch, and intuition. Even taste. You shift to your other senses to help guide you, and it's more automatic than one might think. I have realized through discussion I'm not the lost puppy I thought I was. I do have insight even if I am new to this. I rely heavily on touch. Feeling objects, feeling building lines, feeling differences in textures, door handles, foliage, temperature, etc. During training, I was frequenting a neighborhood market area that faced east so when I felt the sun on my face (early mornings) I knew I was headed in the right direction and towards my target destination. Coolness meant I needed to make a turn or was on the wrong side of the street.

The cane is an extension of our touch, so that tip that rests, taps or rolls across the ground tells a person a lot - slope, grade, texture, depth, direction and so forth. I can feel the difference between the sidewalk and a patch of grass; I can discern when I need to step down and go around. As a blind person, the safest but impractical way to travel would be on your hands and knees, and you would not have as far to fall, with your hands feeling your way. The cane allows you to essentially do this and remain standing and functional. I find it interesting that my mother has fallen several times and having Alzheimer's, still has that inborn fear of falling and despite the ravages of this disease on her brain, her compensation method has been to bend over, and want to stay close to the ground and feel her way around.

If you were bizarre enough and had an iron-clad immune system, then taste would do it too. I'm reminded of the commercial where a girl leaves her home and licks everything in her path as seh be-bops down the street. I imagine the trash can lid would taste vastly different from the wrought iron fence or brick house. Yuck. I prefer to be practical about this and save my tastebuds for mealtimes. There have been times when I can taste perfumes and cleaners when they are heavy in the air or someone has taken a bath in their cologne instead of a gentle spritz. Stick me in an elevator with one of these people and I'll be ill by the time I step off.

I have no doubt my sense of touch and smell are heightened. I can feel a thread or hair on my face or arm. I watch people who have a speck of food on their faces and cringe, (why I hate mayonaaise- gross). I marvel at how they can't feel that. The speck rests on your face and is cooler than your skin temperature and I most definitely FEEL that. My son will whisk by after showering and I can feel a faint spray of droplets from his hair. With two teenagers in the house, mornings nauseate me with the smells of soaps, shampoos, body wash and cologne and body spray all mingling with the smells of breakfast and coffee. Sensory overload people, open the door and give me a breath of fresh air.

During O&M sessions I was taught to open the door of each business establishment and pick up any clues I could while blindfolded. At the same time I was building a mental map for future reference. One place smelled like my old office - a 60+ year old tax and bookkeeping service that never threw anything away. This time, the familiar smell turned out to be a used bookstore, full of old paper no doubt. The next was a coffee shop with the smells of coffee and food cooking. The next, something else. Walk me into a printing company and I'll recognize the smells of offset chemicals used on the presses. In a local mall, I began to identify businesses by their smells: Kirklands (sensory overload on potpourri), Bath and Body Works, Old Navy, Starbucks, Yankee Candle, Subway, ChikfilA, Arby's... every place has it's own distinct scent. There are dyes and fabrics and cleaners and food smells you come to know and identify. I could feel temperature changes when I entered stores, and when the floor substrate changed. Marble floors are colder than carpeted or wood substratres. Air flows through doorways and breezeways and between buildings. Since my home is built on a concrete slab, I can feel the cold rise during winter evenings and almost visualize it being a vapor.

I can feel when someone is close to me. I can sense when I'm being watched. I find movies and tv depictions of someone sneaking up on a blind person, waving something in front of their faces offensive. A hand waving in front of my face is a dead giveaway - it creates a draft and I'm going to pick up on that, and the scent it gives off. Why would anyone pretend to be blind anyway? Not funny. I am equally irritated with the depiction of blind folks with big wide eyed expressions and flawless eyes (Mary, and Adam from Little House) because in reality the eyes of a blind person are strained, eye muscles lose elastic and blood supply may be lost, contributing to that 'look' that blind folks have. My 'look' has been squinting and a permanent frown I've spent a lifetime trying to control and defend myself from. It has earned me the misunderstood notion that I am angry, mean, snooty, yadda yadda yadda.

Finally there is that 'sixth sense'. No I don't see dead people. It's that intuition you have when something isn't right. I marvel at how many times I think of the telephone, look at it, and sure enough it is flashing/ringing. We tend to turn the ringer off at times and forget to turn it back on, so this is a common occurence. How do I know that call is coming in? How do I know someone is going to stop by, or that I need to check on the status of a business matter? How is it sometimes I am dead on as to what another person is thinking or feeling? How do I 'feel' something is getting ready to happen?

These are not fool-proof measures by any means. I still wound up in the middle of a 4-lane - 4 way intersection during a session. In hindsight I realize the cues I missed, and my errors in judgement. I lost my mental focus, I didn't count, and my mind wandered, taking me with it. My instructor and I carefully retraced those steps and I talked her through my thinking. That is when I chided myself that I need to remember to think like a deaf/blind person. I ignored the 'sense' that I had gone too far. A deaf/blind person can no longer absent-mindedly walk down the street and think about what to make for dinner, that date on Friday night, or how much money he or she has in the checking account. We must be alert at all times, counting the blocks, and picking up the cues necessary to get from one point to the next. Most of the retraining involved in O&M is shifting from old habits to the new ones we need to form that afford us mobility and independence.

Realistic Thinking

2009-01-29T07:23:00.000-08:00

This will be a little bit of a gripe post here. I am constantly hearing and reading the statements about RP and Usher Syndrome that are utterly ridiculous. The very idea that you can do anything you want or be anything you want to be with this condition just ain't so, sorry folks. I appreciate positive thinking, having a good outlook and embracing optimism. False hopes are just a clever trap set for disappointment and depression. The idea that Usher doesn't have a profound impact on everything we are and do, is just profound denial.

You cannot be a doctor or a surgeon with RP or Usher. You could not drive a bus or pilot a plane. I doubt you could be a construction worker or operate heavy machinery. I was trained in graphic design, and picking out colors from the Pantone matching system was a challenge - I don't know blues from greens. Add to that, this was just before the age of computer graphics: I was creating simulated printed pages from graphics tape, cut paper and press type, and with the surgical precision of an xacto knife. I was criticized on my 'craft' incessantly, and did wind up with eleven stitches in my hand from a slip of the knife while cutting presentation boards. Now I know why. Doing things the manual way was difficult as it were, much less with failing vision. Reality is reality, if you can't see well enough, it just isn't going to happen.

I am undergoing training soon with the goal of getting back to work. Much to my displeasure, I am being forced to do much of my O&M (orientation and mobility training) under blindfold, as I have previously posted. This is being done under the assumption that I will go totally blind and will wake up tomorrow, needing to know how to catch a bus downtown and find that coffee shop. Personally I think this is DBVI's way of training you once and not having to repeat it later down the road. Once and you're done thinking. However, as a deaf/blind client their thinking is not something I agree with, and fear for my safety (not hearing the traffic, etc.). In fact, I think that thinking about it too much actually encourages more loss. This is just my personal belief. Think about something hurting long enough, and you'll make it start hurting. Blindfold training is NFB philosophy and they have a lot to learn about deaf/blind clients, but that is another topic. I know deaf/blind advocacy is something that exists in my future when I have the energy to speak out. Supposedly vocational evaluation and counseling is in there somewhere and I'll be interested to hear their take on my skill set will be.

I do know that way back when I was in high school I fell in love with pottery, particularly wheel throwing. My teacher was a rookie just out of college and ever the optimist herself. I recall her telling us that even blind folks could throw on the wheel, and if it was a skill you could master, you'd never lose it. Indeed it is something I have not forgotten despite interruption over the years - having kids, divorce, working, etc. I love the feel of the clay between my hands. I have thought something of teaching others who have physical limitations and plan to explore that as an alternative profession. I've taught sighted people before, and come to think of it, the thing that messed them up was 'looking' at what they were doing. I would try to get them to stop looking, and feel instead. My motto was 'it's in the hands - feel it'. Balance, symmetry, consistency, thickness, proportion and contours as well as speed of turning, all define the success of a wheel-thrown vessel.

The same is true with other hand skills I was taught the traditional method of typing, and when you stop and 'look' at what you're typing, you're going to make a mistake. Your fingers learn placement and your mind remembers where the elements are. I can type fast and with my eyes shut. I recall my method of practicing was typing out my thoughts, on any surface, anywhere. Almost like drumming fingers, it's grown into an annoying little habit of mine, but it worked.

The point is, recognizing that you do have limitations is a far better grasp on reality than flitting about chirping about how you can do anything you set your mind to. Idealistic over-optimism is like a sickening sweet dessert, too much of it is nauseating. One has to be realistic. If I were piloting an airplane, I wouldn't want to fly with me. If I were going under the knife with me as the surgeon, I'd be outta there. I wouldn't let me anywhere near a dangerous piece of machinery, including the automobile.

I think of all the things I've done in the workforce over the years: in college I worked in a delicatessen, and used electric slicers and could whip up a pound of any meat or cheese and layer it near-perfectly without hardly looking. I wouldn't let me touch one now. I worked in printing, and handled bindery equipment, including the big electric knife that could trim a ream of paper with one pass. Wouldn't touch it now, even if it does engage both your hands to work it, there's always the danger of someone else's hands darting in the way. I worked in a darkroom developing prints, halftones and galleys of type. Wouldn't venture near that darkroom door now. I've driven from location to location photographing, measuring and doing walk-thru assessments on houses being listed on the MLS. Towards the last, I couldn't find the doorbell half the time, much less keep from falling up and down stairs and wondered what would happen if I inadvertently broke something of the homeowner's. Being real is just being responsible.

The trick is not the all-or-nothing thinking that I'm washed up, it's all over and I should just wait to die. Where do I go from here? I'd like to think I still have a few more good years left.

Stay tuned.

Things That Go Bump in The Night or Day

2009-01-26T18:36:00.000-08:00

Tonight I realized I hadn't locked down the top on the trashcan outside, and Mr. Racoon has been making daily raids. Worthless Albert sleeps in his crate by the back door and will raze us all in the dead of the night when the masked forager begins his work. So, like it or not, I opened the backdoor and headed out into the blackness to do the deed. I have a mental map of my home and the yards and did not take my cane. Right away I ran into my son's bike, left right in front of the back door. 13 year olds can be so thoughtful. Chris not only left his bike parked in my path, but has a pile of bike parts I tossed from the tool shed - frames, rims, tires, seats, tubes, forks, cranks, etc etc. The boy is a regular grease monkey. In a few years it'll be cars I'm sure.

I kicked it over and left it lying. Stumbled past the pile of parts and pieces and toed my way over to the skate ramp that the neighborhood association has banned him from using, which now serves as a ramp to the back deck. I walked step by step past the shed and felt for the can, feeling an occasional tool my boy has failed to put away yet again. Now, try as I might, I have the dickens of a time getting that lid down tight. The handle locks up and supposedly, is critter-proof. I asked myself why I even bother, that little devil can still pry these lids off and demonstrated that to me last time by undoing both my cans side by side as if to say 'see? you're wasting your time, lady'. I'm surprised he doesn't have keys to the house.

I have paver bricks leading the way and can count my way back to the ramp, and up onto the deck. Then I feel my way around the bicycle graveyard clanging my way back in. I can feel when I step on something - tools, trash, the occasional pine cone, leaves and yes, ick, doggie poop. When that soft yeilding feeling gives way under my soles, I think 'oh sh__', and ask myself why I ever got a dog in the first place. He certainly doesn't keep the racoons away.

I often fantasize about having a paint-ball gun, and waiting, and watching, with night vision goggles (might as well be high tech about it) from a second story window until the thief makes his appearance. Then, pop him one and scare the um, crap, out of him. I recall one summer when I would go out back and smoke (something I've quit and started and quit again, as per mandate from my scrutinizing 10 year old). I had gone out, lit up, and was talking on my cellphone at dusk. Out the corner of my eye, while I still had any peripheral vision, I saw the cat, Oliver, who is grey like the coon but sans the mask. I was yacking away and glanced over, and did a double take. It wasn't the CAT, it was the masked critter himself, probably waiting for me to offer him a smoke and a light. I'm no dummy, and didn't want to take a chance on getting bit and contracting some freak case of rabies, so put I the cigarette out and stepped back inside. He was nonplussed, as if to say, 'what's your problem lady?" and walked off. I recall telling my friend I had just thrown a basketball at him, and he was dribbling. My friend asked 'really?"

Wouldn't surprise me if he could. I think I locked my car at night to keep the coons out more than the car theft.

I am not totally blind yet, and hopefully will not be for a long time. I intend to go kicking and screaming all the way. I will enjoy my senses fully and thank God for every day I wake up and still have what I have left. I look around I subconsciously tell myself 'memorize this' and burn it into my mind. Interestingly, I usually recall a piece of music that goes with it. Walking home the other day I was making my way down the winding sidewalk in our community and trying to imagine it as it was before houses were built, as a golfcourse. And before that, it must have been farmland no doubt. Behind my house is a stand of trees with a very old solitary grave there. My kids like to tell people we have a ghost and I tell them it's ridiculous. The person named, died in 1905 and was a member of the Patterson bible class, whatever that was, and surely knew where his or her soul was destined to go after this life.

I crossed a low bridge over the creek that became a raging river during tropical storm Gaston and cut me off from access to my house several years ago. I glanced down the creek that disappears into a stand of woods, meanders down and around my neighbor's houses and eventually empties into a lake in the center of our development. The afternoon sun was low and the shadows long and the trees bare, and there stood a blue heron. I saw him and it was as if the houses around us disappeared and everything returned to pure nature again. I reached in my bag for my digital camera and dang it, had left it at home. I wasn't too far away, and hurried home, wishing I could run but remembering old injuries well enough not to. I thought it was amazing we still have wildlife in urban areas like this. I got the camera and returned, but my son insisted on coming along, and the extra company made the heron move on.

I'll catch up with him again, and when I do I will post his picture, but the masked critter is too sly for me. When he starts bumping around in the night, I might just have to let ole 'worthless' out the door to give chase. Albert can see like a hawk and with his beagle hunting instincts, might just get himself a masked prize one of these days. Yes, I'll be sure he's up to date on his rabies shots at all times. Might as well let an old dog have his fun.

I Hate Post It Notes

2009-01-20T08:44:00.000-08:00

Yet another mobility exercise has come to pass today and has left me in a foul mood, as much as I don't want to be. I really wish my kids had been in school today instead of here pulling on me. I needed the time to recover, as I always do after two things: visiting my mother in the nursing home, and these exercises. In fact, I usually have to sleep it off.

For the mobility exercises, Post-It notes are stuck to the inside of my sunglasses and cut off around the contour of the lens, to block my view and simulate blindness. Nobody knows they're there or sees them, but must figure I am just totally blind. Nothing against 3M or my instructor for using this trick, but I have come to hate the sight of Post-It notes, especially yellow ones.

Off into the cold we went this morning for more 3M blindfold training. I didn't complain about the cold, but I did complain of getting sick of the neighborhood we were frequenting. The instructor maintained I still needed more work on crosswalks. We could try other areas too, she agreed. Oh goody. There is a big difference between the streets there and where I am in the suburbs, but that is inconsequential. Each location has it's own challenges and I can't say one is any easier than the other.

I was given the choice of doing that, or shopping Walmart, of all places. Anyone know knows me knows that I hate Walmart, sighted or blind. It is a broad expanse of chaos and slow checkout lines. When sighted, the white floors and flourescent lighting bother me (called white outs) and cause me to squint and usually I leave with a headache. What she had in mind for me, however, was worse. This exercise would involve total blindfolding, unassisted, and finding my way into the store, while asking for directions. This alone goes against my very grain. I was to approach customer service and ask that someone assist me in shopping, which is just like nails on chalkboard for me. This is getting incredibly personal, and something I usually do alone so I can think. Having another around is like working around a tapping foot and I feel I have to hurry. I know this from having friends take me grocery shopping. I have found I like to block off time and be picked up later at a mutually agreed upon time. Now I am being required to learn to depend on a total stranger to basically do my shopping for me.

I put my hands over my face and told her "I just cannot deal with this - I just can't bring myself to deal ..." I reiterated what I have said before: that I am not going to wake up tomorrow and suddenly find myself completely and totally blind! I've had RP all my life, and deterioration has been gradual. Ok, it sped up there for a while and I'm not sure why. Doctors request I check in once a year now. All I know is when the post it notes come off the glasses, there is return of ample visual information. It's all within a single beam if you will: that is, classic tunnel vision, but still a far cry from a total void. Let me use and work around what I've got, I implored. She reminded me that it is not really known how my vision loss will go, and it is her job to make sure I am prepared in the event of total loss.

Being prepared sucks. I've summoned my comrades - some of who are guide dog users, to set me straight if I am wrong to complain or resist.

We settled for the neighborhood thing again. I can go block after block at a reasonable speed, despite the city's irregular sidewalks. I was given my course and told to find the dry cleaners on the corner, walk in and ask for their hours of operation. Goody goody. Long story short, I veered at the corner and proceeded right into an intersection. There was no moving traffic at that moment, or I wouldn't be writing this now, but a man ran up and took me by the elbow. No, let's rephrase: he grabbed me, by the elbow. When you don't see or expect that coming, it's startling. I'm sure he was panicking seeing me plow right across a four lane intersection. I don't like contact with people I don't know, but I had to listen to what he was saying and resist the impulse to yank away from him and tell him I did NOT need his help. Nontheless, I was in the middle of a usually-busy intersection. The corner ramp was so subtle I hadn't even felt the grade slope down.

Asking me what I was trying to do, he pulled me back around and safely back on the sidewalk and led me to the dry cleaners, which of course, was closed. I cannot shake the feeling of feeling utterly foolish, even at this writing, hours later. He said the door was locked but there was a back door and proceeded to tug me in that direction. This time I resisted and told him no, this was just a mobility exercise, and finding the back door wouldn't be necessary, but thank you very much (for preventing me from becoming road kill). Real or imagined I thought he was irritated and said something to the effect that I hadn't really been going anywhere.

Whatever.

I pulled off the glasses and the instructor was several stores down observing. I was annoyed. I started to ask her if she brought a shovel to clean up after me when I did become road kill. I really wonder what is being done to ensure my safety, because counting on vehicles to stop is risky business and with her a good 1/2 block behind me, I do not feel secure. We retraced my steps, and she pointed out where I veered, and pointed out the objects I had touched, and which I could have used as cues. We discussed the strategy for return had I continued and hit the median. The main thing I should have done was trail the building until I found the correct door. It gets confusing, knowing when to trail and when not to. Last time I was trailing and told not to, but stay centered on the sidewalk.

Whatever.

This is nothing personal against the instructor. She is a vivacious, smart, intelligent and compassionate person who loves what she does. She had broached the subject of my discomfort with blindfold training before and knew I didn't like it. I can't imagine anyone ever liking it. For those who don't know, instructors themselves have to endure this kind of training, and mine just completed 3 days of blindfold training herself. The difference for them of course is choice, and getting to toss the Post-Its in the trash at the end of the day. There are also blind mobility instructors: I've met one and had the chance to observe him briefly, but I often wonder how he would keep his client out of the path of an oncoming car.

I vented my frustrations about the emphasis alone mobility training, which will continue when I am on site at DBVI for courses. They will continue but I will also learn to cook, clean, type (can already do THAT), read (Braille), as well as serve and feed myself, yup you guessed it, blindfolded. Spaghetti is on the menu. This will take a minimum of two months and may lead to more classes after that. Somewhere within that two month period I hope vocational evaluation and counseling is offered.

While I realize this is all geared towards independent living and freedom of mobility, it feels otherwise for me at this point when I am still in part, sighted. It feels almost as though I've been told I'm going to have a stroke, and will have to learn the simplest of tasks to live fully again. It's frightening. My first priority is not theirs, which is getting back to work, and having an income. Disability alone does not cut it for my single-parent status raising three kids. Child support helps, but like disability, is not enough. DBVI maintains this is all part the process of job-readiness, but my housing needs will not wait, my creditors will not wait and my children cannot wait - they are growing and constantly needing things. Just today each child has needs: new jeans, new bookbag, and not enough long pants for this cold.

Tomorrow it'll be groceries, or medicine, or school supplies or something needed for a project: and we begin the cycle again.

In these figuratively dark days I struggle to find things to look forward to. This is Inauguration Day and it holds little joy or hope for me. All the talk of hope and the future and overcoming, yet as I look at my own future, the only promise I see is the promise of the lights going out. Perhaps by my next writing I will have fought my way out of this one, but I realize this is all part of the gambit of emotions entangled with going from sighted to visually impaired and into the unknown.

Driver In, Driver Out

2009-01-17T16:42:00.000-08:00

My oldest child is 15 years and 7 months old and counting. We are just now getting around to working on getting her learner's permit. Virginia laws have changed since I started driving but I know the guidelines are stricter, thank God. A teen has to be 15 years and 6 months to apply for a learner's, must pass a written test and hold a learner's permit for 9 months before taking the driver's license test. If they fail the first learner's test, they must retake it no earlier than 15 days later and continue to do so until they get it right. I'm not in any hurry, realizing we will have plenty to worry about with two teens driving in the next 1-3 years, that is, if their dad and I can afford to put them on the road.

Today was DMV day. My daughter had been studying her DMV handbook, taken the practice tests online and thought she was all ready to go. I had been saving up my paperwork for surrendering my license for a state ID and obtaining a handicap parking placard so I, and whoever is driving me can enjoy the front row seats for a change. Before anyone pounces on me about that, realize that where I once worried about hitting someone, I now worry about being the one hit. If my distance to the front door and out of moving traffic can be shortened, you bet I'm going to take it.

I thought back to 1980-81, when I was learning to drive for the first time. It seems to me that I took a course in high school that was in two parts. First came the classroom instruction where you were told the basics, had driving simulators and hours of films about the evils and consequences of irresponsible (and drunk) driving. From there you went into DMV to take the test for your learner's permit. With that in hand, only then were you were cleared to get into an actual car: learning to put it in drive, reverse, park and to drive in the country, subs, and city. Highway driving was the high point. Parallel parking was everyone's nightmare. You finished that and then headed back to DMV to try it all for real. If you passed, you were licensed to drive by the State, but not necessarily by mom and dad. What my daughter was doing seemed a bit backwards. Driver's ed won't happen for her until summer school, she's booked up on classes already.

Her best friend and her mom were there too. This was going to be interesting. Dad hung around a bit and cracked jokes. But work was calling him and DMV was packed. I told him to go on, we'd call when we were ready to bust out. Random numbers and codes were given out and it was standing room only. A calm female voice over announced in a sing-song, hypnotic tone" "Cee - one- twenty - se-ven is now being served at window ... eight" Repeat three times or more. It was going to be a long wait.

No matter where I stood I was in someone's way. Boy, I sure didn't miss this place. In fact, I don't miss gas prices, my insurance premiums, oil changes, tire rotations, personal property taxes, or my mechanic's endearing face. I gave away my carwash soaps and sponges, my jumper cables to my neighbor to get them started one morning, and forked over my 'moodymb' plates to DMV many months ago. I still had my license in my purse, and was prepared to surrender it today. It's taken me a year to get to this point and I'm surprisingly ok with it.

Now, my daughter is on her way to being a driver. Where did all the years go? Driver out, driver in. I stood and thought ... did I make the right decision selling the car? Can I afford to buy her another one? Do I really want to buy another one? Do I want the hassle and expense? No. But the family has been crippled by our lack of transportation in these parts, and my poor ex-husband is running himself ragged trying to work in town and out of town, and cart the four of us around. Daddy, and his partner, are prime real estate these days. When he's not around his partner takes up the slack. We have friends and neighbors and my sister here in town who offer their time and help, but it would sure be nice to not have to ask.

I watched and listened and smirked at my daughter, who was now feeling nervous and wondering if she studied enough. Her friend was called up first, took the vision test (which is lines and letters now, and not flashing lights on either side), turned in her information and was sent on to wait for a testing station to open up. My kiddo was up next. They needed the driver's license of a parent. Well then, that would be me, and yes, I still have it. I was still waiting in line myself to give it up. My driver-to-be repeated all the things her best friend did and was sent over to wait for a testing station to open up. Hmmmph... my test was a piece of paper and a no.2 pencil. I sat down at a desk and filled in multiple choice dots. Boy did I feel old now. These kids are using computerized tests.

The tests are harder these days, and without benefit of class instruction first, it's not so easy for a 15 year old to pass on the first try. Of course, parents load 'em up with information, which is promptly tuned out. To listen, learn and benefit form your parents' experiences would go against the laws of human nature. Both girls had the same results. Close but not quite, come back in 15 days and they could retest. This is the way most teens go, and I think it's intentional. I'm not sure, but maybe this is DMV's way of making them work a little harder. Nothing makes you want something more than having it held just out of your reach. I was in line myself at this point and the teller and I were snickering. I hugged the girls when they came over wearing their long faces, and told them 'next time'. 15 days feels like an eternity for them, but I know they'll ace it next time. Too bad I couldn't eject a memory card out of my own brain and plug it my daughter's, or better yet, trade my failing aperture and lens for theirs. No, that wouldn't work, since the film that's not holding up. I can't get any more... yet.

My placard was issued, and the rep. told me, why don't you hang onto your license, it hasn't expired yet. You can use it for ID purposes, and ride with your daughter when she starts out on the road and has her learner's, I'm sure she could benefit from your experience. (Snort). Wow. I didn't know I could do that, I told her, thanks. Good deal. Now call the daddy-mobile and let's get out of here.

By next fall, my daughter will be a new driver and this old driver can take a back seat and enjoy the ride.

In the meantime, Daddy can white-knuckle it while she practices.

Mixed Signals

2009-01-13T16:34:00.000-08:00

I have struggled in deciding what purpose writing this blog serves. It gets a little unnerving when I see that search engines put up excerpts for all the world to see, and remind myself, I want to put information out there, without getting overly- personal, about life from the standpoint of the vision/hearing impaired. I may even be able to touch on how the totally deaf/blind cope. Most folks have never heard of Usher Syndrome or Retinitis Pigmentosa, yet it is the second biggest causes of blindness, besides those from injury, in the United States.

In the first few months after I lost my freedom to drive, and lost employment I was in a terrible place. Resisting panic and depression as I have done in other crises in life (seems there is always something) I've scanned the internet looking for answers and soaking up information that would inform and equip me to deal. Thank God for technology and the internet, particulary for the disabled. How surprised was I when one of my first deaf/blind friends was able to email with me, though completely without hearing or sight. Conversation was as normal and real as anyone who was sighted or hearing. Knowing I was not alone with this and finding common ground with others who were old pros at this, and living full productive lives has been inspiring. Having an 'ear' to 'listen' from someone has walked in my shoes and beyond has been a blessing. I hope my words here help the sighted understand the realities of Usher, which definitely cause us to give off mixed signals as a result of having a dual-sensory loss, however mild or severe.

One of the things I benefit most from is comparing notes with others in the same condition. When you make that blunder, the first instinct is to look around and wonder, did anyone see me do this? Other Usherites do the same. Heck, other NORMAL people do the same. It's startling to hear that others use the same coping techniques you thought were all your own. It's amazing some of the tips and tricks you learn from others and wonder why you didn't think of them yourself. There will be more of those I am sure. I begin evaluations and rehabilitation classes and will mingle day to day with others making the same adjustments I am. I don't know whether to anticipate or dread it. I can say that early on, a representative visited me from the Department of Blind and Visually Impaired and interviewed me in my home. He looked around my house asking me if there were any tasks I had difficulty with. No. He noticed a burn on my arm and asked me about it. Oh, I had gotten it from reaching in the oven to remove a tray. Right then and there he stepped over, opened my oven and showed me a coping strategy for feeling down (with an oven mitt of course), locating a rack, finding my dish and removing it without burning myself. I had never thought of it.

Words and actions hurt worse than hot racks I don't see and I acknowledge I need to develop a thicker skin when it comes to blindness. Some of them are unintentional, and some are just plain thoughtless and almost never are any of malicious intent. Some famliar remarks are: you didn't see that? It's right here. It's right over there (over there means nothing to a blind person). Look up. Look down. Are you deaf? Walk much? You are blind as a bat. You're deaf as a post/stone. Have you been out to.. wherever.. and seen this? My son says I'm 'not that deaf', and 'put the cane away, people are looking at us." Another has said I 'hear what I want to hear'. I could go on an on. We've all heard them.

Recently we went to see my mother the nursing home for a post-holiday reception. A gentleman exiting the building passed me and stopped, widely amused with the cane I had just opened and held dangling vertically. I was preparing to enter the building and going from light to dark is a trouble zone. He asked what kind of fishing was I getting ready to do with that fancy pole. I could almost feel my sister gasp, anticipating how I react to him. I smiled, looked at him and the words stuck. I didn't know WHAT to say, much less if he was kidding or serious. This facility had a fishing pond for its residents, maybe he thought I had the real deal. I walked on.

My ex has joked about holding out a tin cup for change. I just told him 'not funny.' Other times, I confuse the poor guy by laughing and making jokes about myself. I'll post sometime about my 'behold, the power of the cane' experiences, and elaborate on that. I get mildly irritated with kids who stare when I pass by in the store. One child yelled out loud to his sister, "that's one of them blind sticks!" I just said under my breath, yes, and someone needs to teach you some manners. However, when another child followed me down an aisle and asked me why I had the cane, I was happy to answer, much the way I used to talk to the inquisitive little ones I taught in Sunday school about my hearing aid. The child's mother was horrified and called him away before I could answer. My son has a neighborhood friend who claimed I was out walking and whacked him with the cane when he passed me on his bike. I corrected my son and told him: Tell Kain (no I'm not joking) I'd know if I hit someone with my cane, nor do I swing it that wide, but it could be arranged."

Next we have the media portrayal of the blind, most recently the SNL skit of NY Governor Paterson. I read the public outcry against it by the AFB and other blind advocacy organizations and went to the NBC website to watch it for myself. I tried to keep an open mind. When it finished, I felt odd about it, and thought to myself, ok, we just came through elections and I laughed at these things. I admired Sarah Palin for being a good sport by her ability to laugh at herself and take unfair characterizations in stride. Should I be able to laugh at myself or fellow blind person? In this case, no, I decided. The difference being: Palin's or anybody else's choice to become a public figure is just that, a choice, and they know this comes with the territory. Being blind is not a choice, and to belittle and poke fun at a legitimate physical limitation is just plain wrong. The actor's contorted facial expressions are what bothered me most. I think the governor should be commended for not letting blindness stop him from being a productive member of society and achieving a leadership role. Thumbs down NBC.

In closing I have secret weapons. I know people are unnerved trying to figure out what I see/hear or not. I can watch tv with the sound off and read lips well enough to know what is going on. Yet, people can talk to me face to face, and I'll miss every bit of what was said. I cannot read close captioning, because my field of vision is so narrow it doesn't allow me to see the picture and the captioning at the same time. I see well during cloudy days, and horribly on sunny days, and have no fear of walking around at night now that I have the caning skills. If I come face to face with someone at handshake's distance, I can see their eyes and nose, but not the mouth. If I lip-read I cannot see the eyes. Confusing stuff for an outsider to figure out. Usherites know.

I caught a volunteer staring at me during a blind function, only he didn't realize I wasn't totally blind. He was studying my eyes and I each time I looked up, he was still staring. I finally looked up and held eye contact with him, as if to say I KNOW YOU ARE LOOKING, so knock it off. He realized that and shortly thereafter excused himself. It was embarrassing to both of us I'm sure.

I pass through doors in public places and people usually stand back, only to feel startled when I look at them and thank them. Blindness isn't all or nothing. When I don't feel like being so friendly, I just ignore them and pass on by, and nobody holds it against me. My children think they can sneak behind me when I'm working on the computer with the headphones on, but if they are not careful, I can feel the breeze as they pass by and tell who they are... by their scent.

To Ask or Not To Ask

2009-01-10T16:49:00.000-08:00

Many years ago I had a lawnmower accident. A downspout concrete splashbox must have caused my mower to kickback over my foot as I was pushing my mower up around the corner of our house. I was wearing Tretorn sneakers that day, and never felt the blow to my right foot, but something made me look down, and I saw my shoe cut open. I ran like hell screaming bloody murder, and that only got the blood going and then the pain announced itself. Thankfully I didn't lose any toes, but had an agonizing couple of months while my shattered toes healed. I started my senior year of high school on a funny looking shoe and crutches, and swore I'd never touch a lawnmower again.

To this day, when I stump that old injury my nerves are super sensitive.

When it comes to my vision loss my nerves are also super sensitive. The kicker hasn't been just losing the vision itself but my freedom as well, and how others perceive me. Helpless. Stupid. Insignificant. Pity case. Handicapped. Folks don't usually call on me for help of any kind, and a few friends just flat out dropped out of my life, I guess not knowing how to act around me. I have been so used to being very active and have considered myself a strong person with a lot of know how when it comes to a variety of things. At this writing, I can't even convince a potential employer to seriously consider me as a viable job candidate. I flew through the social security disability criteria with flying colors, although the determination process was lengthy and arduous.

Being divorced with three minor-aged children in the home is a big undertaking, minus the wheels, man. Nobody really gets that. People are busy and have their own lives just as I had mine, and now I wish I had never complained, not that it would have made a difference. I now understand what the elderly must feel like when the world passes them by, because they feel they are too old and physically unable to keep up. They feel they are a burden to their loved ones and are not 'needed' any longer. Many days I feel like I've gotten old before my time.

My ex has taken up a huge amount of slack where the driving of three kids: ages 15, 13, and 10 is concerned. His partner helps him when he is not able and we are grateful for that. If it were not for them, we'd be totally lost. Public transportation options are limited in my area and of what I do have, there are restrictions that don't really lend themselves to being the single mom of three. I cannot take the whole gang with me. Nor am I allowed to load any more than 2 bags of anything at one time, so grocery shopping is out. Rides must be scheduled a day in advance and to be someplace for an hour requires at least three hours travel time for wait time on pick up before and after. Things like picking up groceries, or just running to the drugstore for a simple box of medication when you've got a nasty virus becomes a monumental chore. Folks tell me they can take us if we plan ahead, and yet again I'll get a knock on the door unexpectedly once in a blue moon, and be asked if I want to go right here and right now. I am not being critical or judgemental, but the adjustment has been brutal. I've been told repeatedly, ask for help. Ask. Ask. Learn to ask.

In an email exchange with out-of-town relatives, I was told not to 'run (name) ragged' and boy did those words sting. Ouch. Was someone now implying we asked TOO much? Oh, what they do not see nor know what they speak of. I felt my face get hot reading it. How many times have I walked to and from the store lugging bags that hurt my fingers and hands, in the heat, and cold and rain. How many times did I drag a child with me, and we made the best of it. Nothing rubs in the inconvenience more than that while your neighbors whizz by enjoying their instant gratification of getting around. It's a fifteen minute walk to the drugstore and such for me and I consider myself lucky at that. Things like the bank, and the post office are out of my immediate reach, much less going to get a sick child out of school during the middle of the day. I didn't ask for this nor want it this way. My children are unwilling, undeserving participants. It was thrust upon them. I struggled to keep driving year after year until I couldn't do it anymore. I knew I had to see a doctor, and stop now, before I killed someone, including my children and myself. I avoided it for as long as I did because of THIS.

Telling me not to run another 'ragged' stings and resonates with me. I know it wasn't meant that way, and the person who wrote it would probably be saddened to know this struck me this way. I would have liked for that person to have known my 15 year old found her own way around today, my 10 year old left to spend the weekend with a friend in the country; one who has two parents in the home who both drive (so who can blame her?) It's just been my son and I today. We haven't called anyone, except a neighbor who offered (we didn't ask) to bring us home from the grocery store this afternoon.

I have problem asking for help in the first place, and to have my hand slapped for when I do ... this.

No More Rabbit Poop!

2009-01-06T17:11:00.000-08:00

Well the gray days of January are setting in and the post-holiday letdown has come and will hopefully, soon be gone. I have taken the week off from mobility training because it is just too much of a mental drain on top of all else this week: letdown, back to school, housecleaning needing to be done, and doctor appointments. This week is focused on getting the kids back onto their regular routines, and tending to some paperwork I've needed to complete with peace and quiet to think. I've asked myself why some tasks seem so huge and so daunting. Some days just making a simple phone call feels and looks like an all-day affair. Some of that is depression and some of it is needing to learn some new coping skills.

As I started to cook dinner tonight I felt myself growing increasingly frustrated and tired very quickly. I knock glasses over on a daily basis and break them off, walk into cabinet doors left open (even by my own little self) and look for things like the butter, salt, pepper and spatula when they are right in front of me. I haven't trained my mind to be logical about placement yet and to 'remember' the layout of my cooking workspace. Dinner takes me twice as long to prepare and I'm usually in a foul mood when I'm done. After the meal then its time for cleanup. For the single mom, there is no hubby in the home to pitch in and help with the dishes, much less round up the troops and supervise them to help. I usually prefer that no one is in the kitchen with me because of the tight space, and the fact that I'm moving about with kitchen tools and hot dishes. The kids have learned to exploit this: placing their dishes in the sink only to scram out of the way for the night.

My son had earlier decided he was hungry for pizza when he got home from school. He had preheated the oven and placed a frozen pizza in for his dinner. This is a battle I choose not to fight any longer: getting him to eat what the rest of the family eats. Most times he makes his own limited menu items: grilled cheese, mac and cheese, cheese pizza, waffles or a bowl of cereal. However, on this night he neglected to take the big bag of cereal off the edge of the stove, and it was covering the oven vent burner. Smelling burned plastic, I tried and tried as I might to look in the oven (which did not come with a light - geez) and find whatever it was. I saw nothing and just turned on fans and cracked open the window. I'd have to deal with that during the day when I could have more light to see by.

Starting the steaks and baked potatoes, I set water on for tea and grabbed the toppled over bag of cocoa puffs, and as I swung it over it left a shower of what I refer to as rabbit turds. The small round brown things rolled everywhere, all over the stove, all under the burners, all over the counters and all over the floor. They rolled under the stove and fridge and undoubtedly under the dishwasher. "Ssssssssssssssssssshhhhhhh................" I said. Those things are the dangdest things to clean up. They are bulky and fill the vacuum cleaner bag in no time. They are air-filled so tossing them in the sink to flush down with water into the disposal is fun too. I had to take a wooden spoon and drown them before they would go down successfully. Crunch crunch under my feet as I search for the broom.

So yessssssssssss... after the rabbit poop fiasco I declared loudly 'NO MORE ROUND CEREAL IN MY HOUSE.' Round cereal forms should be illegal. KIX cereal is the same way.

My evaluation week with the Division for Blind and Visually Impaired in February should be interesting. I'm told it'll be a week-long observation and evaluation of my living, working and coping skills, with a follow-up of classes to sign up for much like taking college classes. My case worker already knows how I respond to frustration, with my whacking the bush tactics. I believe in a lot of prayer to try and deal with this, but I am not always successful. My anger and frustration seep into all the other areas of my life. When trying to fall asleep, my 'little demons' in my mind start replaying the hurts and disappointments of the past. I try to push it out of my mind and pray to God that he take my anger from me, and pry every last one of my fingers from it. It's an exercise in submission and trust.

I have found solace in finding others like myself (yes, you my fishbowl buddies) who feel all the range of emotions that I do. Who walk into doors, and apologize to poles and kick ourselves when we can't find something that was right there all along. You don't know it until you have walked it, and some of the folks I've met have gone further down the path with fewere advantages than I have. I am grateful for their experiences, support and prayers and am priviledged to reciprocate to them.

Life isn't fair and has it's challenges and rewards. I continually strive to take the good with the bad. God has great patience with me and continues to show me the ways in which I need to clean up the rabbit poop in my life.

Remembering Mrs. Bragg

2008-12-17T15:42:00.000-08:00

One thing I've always been thankful for is the ability to lipread and I didn't realize how heavily I depended on it until I was in my teens. In high school, my parents and teachers ganged up on me and decided I should be offered speech therapy. My therapist realized I was lip reading already and asked where had I learned it? I had no idea. My sisters and parents thought about it and realized I had learned this valuable skill unknowingly, from a family friend many years before.

My aunt was a special ed teacher and befriended the mother of one of her former students and they remained close over the years. Mrs. Bragg was a widow, a heavyset affectionate lady who always wore billowy flowery dresses, perfume, and wore her hair in a bun. She mimicks Andy Griffith's 'Aunt B' a bit. She often babysat us and spent a lot of time with my famiy at our house.

Mrs. Bragg would sit down in a swiveling rocking chair my parents had that we kids would whirl around in it until we felt sick. She would place me in her lap facing her and mouth to me words and sentences from a storybook while we rocked and spun. She'd ask me to repeat her, and put my hands to her mouth and let me feel how she was forming the words. She'd place my other hand on my own mouth and have me 'feel' how my mouth was forming the words after her. Of course I thought it was all a game because she laughed and hugged me made it fun. My mother often told the story of the day she came home and found the chair overturned, Mrs. Bragg sprawled out on the floor, and me sitting on top of her. She couldn't get up, and just laid there and laughed until she had tears running down her face.

Eventually I complained so much about the speech therapy sessions. They were redundant and we were doing anything but, just so the school could collect federal funds by offering the program to me. To those who needed it, it was a blessing to have. For me, it was interrupting my elective art classes, and I insisted that therapy sessions be dropped. I happily returned to the potter's wheel... hand me a chunk of clay instead.

Between The Worlds of Sighted and Non-Sighted

2008-12-16T07:04:00.000-08:00

I recently attended my 15 year old daughter's choir peformance in celebration of Christmas season. After a beautiful performance in song, I felt much pride in her and felt thankful she had this place to call her church home, made possible by the kindness of her best friend's parents getting her there and back several times a week. Despite a few teenage flare-ups, she is quite the young lady and has made her dad and I proud. There was concert reception thereafter which wonderfully staged with Christmas lights and tables around a large dimly lit room laden with mouth-watering finger foods, desserts and beverages. I had my cane in hand because I now go into these things expecting to knock over a drink or walk into something or someone. As is my usual coping strategy, I found a safe spot to stay and take in the ambiance. A few people chatted with me in passing if they were able to get close enough to me so I could still lipread and understand. My kids and their dad were all too happy to scout out treats and bring me country ham biscuits (oh my Lawd, those things were goooood), crab dip with crackers, and water with lemon. It's not a bad deal being waited on for a change!

I also attended a Blind Chapter Christmas Party with nearly all-blind folks. I was invited by my fellow Usherite from my area I've been fortunate to meet through an online closed support forum. This was our first face to face meeting and I was a little nervous, wondering to what her degree her vision/hearing loss would stack up to mine, and how we would communicate. I found her to be personable and easy to talk to, and Lord knows, we had enough in common. We would have been fine, except for the overly-loud music. She quipped between song changes, 'quick, let's talk before the music starts!" Even the sighted folks at our table had to laugh at that.

The majority of attendees, I noticed, were totally blind but normal hearing. The blind folks could hear better than the Usher folks like my friend and I. They could recognize each other by their voices alone. I was intimidated and on edge about how to act when they approached or cruised past me looking for a friend or a seat to relax and enjoy. I had so many questions. How do they know where to sit? How long have they been blind and how did blindness occur? How do they know each other? It dawned on me that I was still as ill-fitting with this group than I am with the 'normal' hearing/sighted world. I had the advantage over them in my ability to see, whereas they had the advantage over me with the hearing, and had no trouble talking over the music. Standing in line for the food, I couldn't resist asking my fellow Usherite at close range, "How do these folks manage to serve themselves (buffet style) if they can't see?

She answered very assuredly, "oh, they manage." And yes, they were doing it.

I left the party having learned a lot about myself and the difference between deaf, blind and deaf/blind or impaired. Dual-sensory loss is a double whammy, and I just thank God I still have a some of both left. I think I'd rather have it that way than all of one or the other, not that any of us get to choose. Learning to maximize what I've got and preserve what I have left is crucial for now. I hope and pray that either retinal eye implants are perfected and available to the masses soon, or that gene therapy takes hold and offers hope to all who suffer from vision loss.

Caning on Old Stomping Grounds

2008-12-10T08:06:00.000-08:00

I've had a few days out of the house to travel down to my late father's hometown and birthplace to check on things. We have a farm there that I had spent time working on for the hope of having a weekend retreat. That's been abandoned and each time I am able to get back down with someone I pack up my tools and things that I had taken there to bring back home. My priorities have changed with the advancement of Usher and I've been in an on again - funk, that no doubt is driving my loved ones and friends crazy.

With the recent developments in the area I'm almost glad to be making the break. The land is forever being changed as mining operations begin. The landscape will be stripped, temporarily, and consist of a series of 60 ft deep ponds several acres in size, miles of flexible piping and red mud everywhere. The processing plant is rapidly going up behind our tree-line and violating the sky and the quiet of the countryside for now. Progress is good, but comes at a price. The farm across the road awaits burning of its century old home that has been vacated and stripped. The chimneys have been demolished and lay in pieces on the ground. Grand old trees stand waiting for their execution dates, as they will have to succomb to the machinery needed to get around and underneath of them. The graveyard holds a few characters from years past, such as an ancestor who fought in the Civil War and whose remains rest among his five wives. It was interesting to note that his first wife died the year his fifth wife was born. Poor wives, their husband must have been impossible to live with (smile). Their final resting places will not be disturbed, we're told, but will have a buffer around them, and a fence erected to keep them huddled together in the midst of a changing landscape.

I'm left to wonder how many unmarked, forgotten graves might be unearthed during this process. Talk of the remains of old farm mules and boxes of buried treasure fly.

The good news is that the mining will generate income and industry and give a boost to the otherwise meager economy of this area. There are scores of regulations imposed by every local, state and federal government agency imaginable. The land is to be restored to it's original perimeters or to the specifications of the landowner. Some argue, not in the same condition, because you can't put God's country back the way it was. Nonetheless, the land will be inspected and approved by the state before it can be released back to the landowners years down the road.

In the meantime, the mess and machinery has and will continue to generate a lot of mixed reactions from the locals and families who have land holdings there. There has been that momentary pause and thought of 'what have we done,' with the realization that there is no turning back now. This project has been 20+ years in coming, and those who signed the original land leases and contracts have just about all passed on and the children and grandchildren are bound to see it through. The course has been set and we're on our way, like it or not. My father, and my uncle, both died waiting to see this happen, and Alzheimer's has robbed my mother's ability to witness this as well. I wonder if it isn't better this way, after all.

The day after, I visited the historical Williamsburg district with my sisters and all of our families and realized just how different we all are now years into adulthood. Three different wills, and kids to corral and keep under control. My thoughts were with my mom, who enjoyed the day-trek there to take in the sights, enjoy gingerbread cakes from Raleigh Tavern Bakery and stroll past the historical landmarks and take in their Christmas decorations made of natural elements: pineapples, apples, pomegranates, pine boughs and other cut greens. My favorite stop, as always, is the outdoor kitchen gardens and herb gardens just a few steps from the Magazine. The crunched oyster shell pathways and raised bed herb gardens and composting areas were eye candy for me. I've bought plants there over the years, and enjoyed a raised herb bed garden of my own when I was married. I had scouted all over the state for handmade old bricks that made my paths instead of oyster shells, but my inspiration came from here.

It was a joy to be able to guide myself, and I'm realizing how hard it is on my family not to stress so about 'watching' me, particularly my own children. I have been known to snap and insist that I not be pushed and pulled in and out of people's way, nor do I need to be 'babysat'. I know they feel they're damned if they do, damned if they don't. Orientation and mobility training is almost needed for them as well, to adapt to my reclaiming my freedom with the cane. It is so very hard change past behavior and assume the right of way. That doesn't mean I go in swinging the stick, but people generally are happy to yield. Being a congested tourist area, it was understandable that most weren't looking at me and noticing the cane, and my kids couldn't take the watchful eye off me. I like crowds even less now. While my sisters were content to press into heavily packed shops and stores and enjoy the excitement and bustle of Christmas shopping, I eventually headed for the more open spaces and away from tight places, and told everyone, we have our cellphones. Call me.

My sense of independence is still intact.

Whacking the Bush

2008-12-04T08:43:00.000-08:00

I've been receiving orientation and mobility training for several months sporadically, but since the fall of this year the pace has picked up and I'm going out 'into the field' twice a week to various locations to learn and hone my skills using a cane. The goal is to get me to a point where I can navigate my way around without any sight whatsoever, and on unfamiliar territory or terrain. It's taught on the assumption that God-forbid, I will lose every bit of my remaining vision, but that I will have the skills necessary to remain mobile, and independent.

Nice theory and scary as hell.

I felt a bit afraid this morning when my instructor directed me to walk several blocks, find a drugstore, walk in and make a purchase, and meet her out front when I was done. I was completely blindfolded and without assistance. The going into a store part intimidated me most, not to mention making a selection and paying for it. She handed me a one dollar bill, which I stupidly put in my pocket with a ten dollar bill. How do blind people count money, anyway?

I made some reference to feeling foolish about 'faking it', (blindness) during this exercise and my instructor stopped short and stated emphatically, "Mary Beth, you are NOT faking it, you have lost a lot of vision."

Reality check. Denial is a powerful thing.

I hold on to the hope that I will NOT go completely blind, but the rods and cones are dying and the medical data supports it. Even the Social Security Administration had to agree after putting me through the third degree, literally. Interesting sidenote here: over a period of nine months I saw three ophthalmologists. Two were of my own choice, and agreed on a diagnosis. The third, was one of 'their' doctors, and worked in the same practice with one of them, yet had to see me for himself. When he did, the diagnosis had actually worsened, and I did get my disability approval.

Back to the exercise. I set off, fighting my lifelong habit of rushing everywhere I go, carefully putting my glasses on, sliding on my gloves, and zipping up my jacket before unfolding the cane. I started off north towards Bellevue, found the corner, listened for traffic, and proceeded east on Bellevue towards a small neighborhood strip of stores several blocks away. I did not know the area well enough to have a photographic memory for reference points or be able to recount how many blocks I needed to go to get there. I had been warned before starting off, that there was a wider street I would need to cross that had a separating median strip. I forgot about it, obsessing about how I was going to buy a pack of gum.

I reached a corner, felt down, listened for traffic and crossed. When I hit the curb, my cane felt a hill, grass and some trees instead of the pavement from the sidewalk. There was also a sign post. I stepped back, and trailed the curb, trying to correct any veering I may have done. Still no sidewalk. I felt over and over again, and waited for intervention. None. Finally, in frustration, I whacked a bush with the cane, hard. DAMMIT. I thought I would cry. Yes I want to act like a six year old again.

A car turned and I heard a male voice say "are you alright sweetie?" I felt my cheeks get hot with embarrassment. "I'm trying to find the sidewalk," I answered, trying to sound composed. "You're up on the median now", was the answer. Of course stupid, I thought, you were warned about this. I felt the curb and grass, positioned back towards the crosswalk and proceeded on across. I thanked the driver, and he confirmed that yes I was back on the crosswalk again. From there I made it to the corner and proceeded my walk to just beyond the drugstore, missing my cue of the automatic doors opening in front of the store (I mistook them for the sound of a rolling cart). At the sound of the heavier traffic coming from the intersection at Brook Road, and feeling the curb, I turned back 180 degrees, and found the doors again, went inside. There I listened for the sounds of conversation and a checkout counter and wanted to curse again, it was too quiet. Finally a voice asked If I needed help and I had to ask for the gum, decided I needed a drink for the dry throat (nerves) and for the clerk to pick the ten dollar bill out. After the purchase and headed out to meet the instructor, gave her the gum and chugged down the drink.

I told her it was embarrassing for me to have to ask for help. I think that is my biggest hang-up. I've always been independent. If something needed to be done, I'd find a way to do it myself and only ask as a last resort. In fact, all through grade-school I hurt myself by NOT asking for help in my classes, and because I was also hard of hearing, I missed a lot. It was recorded time after time on my report cards 'Mary Beth will not ask for help.' Perhaps moreso than the hearing loss and now the blindness, not being comfortable asking for help has been my handicap.

Usher has robbed me of some of the things I love most. Riding a bike. Driving my car through the countryside. Travelling alone. Visiting my father's childhood home on the farm. Being a successful graphic designer. Being a photographer (I couldn't hack the darkroom). Being comfortable with myself in groups. Being successful in any capacity, personal or professionally. It has robbed me of my confidence and self-worth. I feel at times like I 'quit' when I let RP catch up with me and wrestle with having let my family down.

My 13 year old son thinks I am 'not that blind' and scoffed at my thinking of getting a guide dog. My 15 year old daughter wanted no part of the simulation goggles provided to me by my mobility instructor, to help simulate what it is I do and do not see. My youngest, though notorious for leaving her belongings on the floor, has a good understanding, and has been an extension of me for so long (she is 10) that when she grows up, and leaves home, I'm going to feel like I've lost my right arm for sure. Come to think of it, I'm going to want that guide dog, after all.

I told my instructor I had whacked the bush and we laughed. Whacking the bush was acceptable, and even expected. Doing things one way for 44 years and having that taken away is brake screecher. I've learned that most people are genuinely willing to help. I've learned that I have to give my loved ones a wide berth: this isn't easy to comprehend or watch as a bystander and they feel powerless. I've also learned that self-pity is the cancer I have to watch out for.

Another milestone passed today, and I'll be tapping my way through many more to come, even if I have to stop and whack a bush along the way.

Seeing vs. Being Sighted

2008-12-03T09:05:00.000-08:00

==What is sight? From the physiological standpoint it is one of our five senses and probably the one heaviest relied upon by any human. It's those images focused upon with our eyes: the light rays reflecting back at us, passing through the lens and projected onto the retina, upside down, registering on the rods and cones much like images on camera film. The impulses are transmitted to the brain, reversed right side up and we 'see' according to those impulses. Or at least that's how I understand it.

From a spiritual standpoint, is seeing past the physical realm and observing a higher law. As a Christian, it means seeing the world and the laws that govern it not by society's, history's or any other faction of mankind's standards of reasoning but by God's. This doesn't mean I get it right, because I don't. My mother taught me that that 'inner voice', i.e. my conscience, is God's still small voice within me. I get a 'feeling' when I do something, observe something or contemplate an action that registers with me as 'right' or 'wrong'. This is something that transcends the physical but can have very real, physical consequences and benefits. I'll stop my theology theory there and stay on the subject of sight.

Sight from an intellectual standpoint encompasses reasoning and personal experience. "Hindsight is better than foresight' is a common cliche that rings so true with most of us and is more about experience and life lessons than actually 'seeing' anything in the physical sense. I often think that at my age of 44, what would I have done differently if I the things that I know now. Still I know there is much to be learned, and I've found myself enjoying the conversation and company of elderly people much more as I grow older myself.

I was born with Usher Syndrome. It wasn't known at the time, of course, but it would slowly make its' presence known as I grew older. By the time I was 2 years of age, my parents noticed my speech wasn't developing properly and feared I was completely deaf. My big sister at the time pointed out to my panicked mom that I couldn't be totally deaf, because I did respond to her voice. As a baby, mom would later tell me, I smiled and cooed at the sound of a man's voice, but didn't have much use for women :) Their deeper tones were easier for me to hear and respond to.

By the time I was five, my tonsils had been removed to eliminate possibility of infection and swelling as being the cause, I suppose, of my hearing loss. I was tested and diagnosed with 'nerve deafness'. Today, I know am 80% deaf, and wear hearing aids. High-frequency sounds, such as 'ch', 'sh' and like sounds in speech are undetectable to me without aids. Birds chirping, whistling, turn signals are examples of things that are inaudible to me without aids. Putting aids in both ears and turning them to full throttle for me is well - overwhelming and I can't tolerate it. Truth is, I LIKE the degree of hearing loss I do have. There is just a lot of static 'noise' in life I do not care to hear. Sleeping through the crickets chirping inside the walls is a blessing and one my former husband would have enjoyed, as he was the one up at night beating on the walls, trying to shut them up.

Losing my sight in the physiological sense, has been more challenging and even devastating. I was diagnosed at the age of 19 while I was in the office of an ophthalmologist, hoping that glasses would fix my problems I had been having at night and with walking into things. Retinitis Pigmentosa was uttered for the first time to me, and not surprisingly, I didn't hear it fully. The doctor repeated it to me and explained that it was a rare, degenerative disease of the eyes, in which vision was often reduced to tunnel vision, and night blindness. Yes, I could go completely blind. In fact, I probably shouldn't have driven to the appointment and shouldn't be driving at all. With a second opinion, I continued to drive up until last year, and have since lost a huge chunk my freedom, and it really hurts.

Mix that with the hearing loss, and you have the recipe for Usher Syndrome. Double whammy. I had learned to cope with hearing loss, and as I stated, even appreciated it. The vision loss has altered my personality a few times. I gave up driving and hence my freedom, my job and hence my income, and have had to re-evaluate where to go from here. I'm too young to retire, and will never have the career in graphic design I set out for after graduating from college. I've lost some friends who haven't stood by me in my time of need and made many new ones who are better than what I could have hoped for. I hope I can continue to forge these new friendships and reciprocate the kindness and support they have shown me.

Spiritually, I have asked 'why me, again?" Why not me. Would I wish this on you, the reader? No. Would I wish this on my children? Certainly not. Would I wish it on my worst enemy? Tempting, maybe, but probably not. Would I wish it on another family member so that I might be spared? No way. I appeared 'normal' for so long but had the limitations. That placed enormous pressure on me to 'perform' in the 'normal' world, while at the same time, those close to me had trouble gauging, just how much 'help' I needed. People tended to shout at me, not understanding that indeed I am not 'deaf', or not speak up enough, not understanding that I am still hard of hearing. The vision has been the same way. Much of the time I think others perceived me as being stupid and at times, even foolish. My new friends and fellow Usherites understand, and we even share a good laugh over some of our antics.

I have a lot of territory to cover learning to live now that I'm 'out' in a manner of speaking, and no longer hiding my deaf/blindness.