by Tim Forder
Over the years, my workplace had developed, and my boss enjoyed showing off this work area. Going from left to right, there was a copier with all its controls that were wired to a Kurzweil reader with its control panel. (Papers and paperbacks fed to the copier would be verbally read by the Kurzweil, while a copy would be saved within the computer.) The Kurzweil was wired to my PC, so that what was read to me from the copier went to the IBM PC. The PC had its keyboard, plus a Jaws control panel so I could tell the PC how I wanted information on the PC screen voiced [output] to me. Next to the PC was a CCTV magnifier with its dials and switches that could vastly magnify specs for programs under development. Next to the CCTV was a printer with all its controls. My boss just loved showing off my cockpit. Eventually, someone went so far as to add a poster of an airline cockpit to the wall behind my equipment.
Everyone in our department was an internal programmer, designing programs and program systems for other departments within the corporation. Most programs eventually were exported onto computers within these other departments for their use. Some programs were developed for other departments that we kept and used to run report updates for them either quarterly or yearly. Some of these programs continued to use mainframe tapes as a source of data input; some required our manual input through the keyboard. The CCTV magnifier was very useful on these jobs.
While my peripheral vision continued to decay, my central vision remained the same. Since the major loss of vision, my central vision had developed a new problem. Use of my vision for reading would tire my eyesight quickly. I have always been a bookworm, but now I was using the Kurzweil for both program development and leisure reading. As I am an ardent reader of horror books, I’d get comments from my fellow programmers who would complain how I was grossing them out.
To keep my bookworm fed, I also became a member of Talking Book Topics.
Talking Book Topics is a Library of Congress program to supply reading material for the blind and physically handicapped in the form of Braille books, books on records and books on cassettes. Special equipment is needed and provided for the records and books on cassettes. The records play at a special slow speed; while the books on cassettes play at a special slow speed and on four tracks (instead of the normal two tracks). All these materials come as “Material for the Blind and Physically Handicapped” and are delivered and returned in the mail at no cost. (Later, in the new millennium, books on records are long gone history. Cassette books are being phased out for the new digital book system. With the new digital system, you can still get books mailed to you to be used with your digital book reader, or you may download books onto your computer and move them to your digital book machine using a flash card.)
In the mid-90’s my wife and I were gifted with a beautiful two-headed daughter. Being female, she was quite stubborn about coming out of her nice warm mother, so much so that the doctor had to use tongs to help pull her out. With my poor eyesight, the use of the tongs gave her a two-headed look that they promised me would be gone by the next day. True to their word, the next day my beautiful little girl had only one head; I know because I checked. It did not escape me that I still had the eyesight to enjoy seeing my daughter’s birth.
Two months before our family was to grow by one, I was laid off. The corporation had been fighting for its existence for years and, losing the fight, had sold itself to another corporation; a corporation that already had its own department of internal programmers, so it axed my whole department right up to the VP. We were just the first to go. Today the corporation that had been so good to me for seventeen years no longer exists.
With my wife having the higher salary as an executive secretary, and as I was wrestling with my sleep apnea, it was decided that I would go on disability, be a Mr. Mom, and take care of our daughter with the assistance of my sister-in-law, Chris. Seems she was a babysitter back in Ohio, mainly because she lived in such a small town that no matter where she was babysitting, if there was an emergency she could always go next door for help. So here she could help with her niece, even if I was busy in bed trying to get some quality sleep. If an emergency would come about she only had to wake me. Wouldn’t you know the only emergency we had with Elaine came while I was the only one home with her. Chris had fed her, but had to leave before Elaine had received her juice. I was asked to give Elaine her juice, and then let her out of her high chair. While drinking her juice, Elaine started choking and wheezing. I got her out of her high chair and started pounding her back at an angle that I hoped would free whatever she was chocking on, but not hurt her. (I knew it was dangerous to give a baby or young child the Heimlich maneuver.) I rushed her to the couch and, after sitting her down, I ran back into the kitchen and grabbed up the phone to call 911.
After I got off the phone, I noticed my little darling was just sitting there with her arm in her mouth, looking as if she was wondering if Daddy had just gone nuts. She was never a thumb sucker; instead she would put her arm in her mouth and suck on it.
EMS arrived and found that all was well. Just the same, they suggested she be seen by her doctor, so that evening we saw the baby doctor. During the visit, we figured out what had happened. Chris had given her raisins with her lunch. One of the raisins had gotten lodged in her gums and had come loose when she was drinking her juice.
Just a note on white cane use I believe is required due to moviemakers that don’t bother researching things like the lifestyle of the blind. Blind people do not use a white cane getting around their own home. We might not even use the white cane in other places outside our home which are well known to us. For example, I don’t use my white cane while visiting my parents. This can sometimes be painful, for instance when someone leaves a dining-room chair out or makes a change in the living room furniture and forgets to tell the blind member of the family of the changes. At work, I was introduced to a fellow blind employee who was now totally blind from RP. He told me that he had gotten into the habit of leaving his white cane behind when going to the men’s room. He would walk out of the office, feel the hallway wall, then feel his way to the rest rooms. He always knew what door to use, because in his building, all the men’s room doors opened to the left and all the women’s rooms opened to the right. One day while feeling his way down the hallway, he painfully discovered, nose first, that someone in the next department was getting a new desk and that the old desk was sitting propped up at an angle against the hallway wall. His hand had slipped between the wall and the desk. He also told me that after his department had moved to a new building, the left-right rest room door system failed him as he walked into a left opening door and a bunch of female employees yelled, “Eric, you’re in the wrong rest room.” Eric just responded, “No problem, I can’t see anything.” He was quickly escorted out.
I had a similar experience once. While vacationing in Florida and visiting Epcot Center, I overheard a man say he was going to use the men’s room. It sounded like a good idea, so I told my wife I was going to use the men’s room. “Need help finding it?” she asked.
“No, I’m just going to follow that man in.”
It was a bright, sunny day and the man was wearing dark clothes. I figured I could handle it. When I followed the person into the rest room, a crowd of women all started screaming–-somehow I followed the wrong person right into the ladies’ room. I did not know women could scream in so many accents.
With the purchase of the house, our finances had become tight. The plain was for both Diana and I to grow in our careers with this growth including higher wages and more income. It had not been in our plains for me to go on disability.
With me on disability, money was getting even tighter, too tight(er). We spend nights tossing around varies ideas to bring in more money. Nothing seemed plausible, things were looking down right depressing until ...
We started talking about renting out the room that had previously been used by my mother-in-law. It was now basically an unused guest room. As we don’t have that many over-night gues
ts, an extremely unused guest room.
My wife had some reservations.
The first problem was that with a household of mostly women there were concerns about renting a room to a strange man. The solution was that the renter would have to be a female.
Another problem was that a renter would want some use of the refrigerator. Our refrigerator was already overused, was often full and was showing its age (yet another reason to look for additional income). The solution was to buy a bigger refrigerator. So once we decided that a renter was a plausible solution, we took money from savings and with financing, we bought a bigger refrigerator that even had the capacity to be sectioned so the renter could have her own area within the refrigerator.
Diana placed ads in the paper and interviewed possible candidates for the room. I lost track of how many came and went because Diana saw some problem with them.
With potential renters coming and going faster than I change my socks, I was beginning to believe there never would be a renter. It was beginning to look like no one could live up to my wife’s standards as a renter.
I had become so busy with the local Chapter of NFB (National Federation of the Blind) that I was voted in as VP. My first duty was to help organize bake sales during the Memorial Day weekend to help raise money to get members to the yearly NFB convention, to be held in Dallas, Texas, this year. It was my job to go to various shops and ask permission to set up our bake sales. As we have been doing this for years, in the same locations without any problems, this was a piece of cake.
I’d only been to two conventions in the past. One was in D.C. so being basically local, I had no need for a hotel room, and no food cost to worry about. The second convention I attended was in Florida. Since it was the summer after I got married, Diana and I, while attending some of the meetings that most interested me, mostly made a vacation of it. This year I felt strongly about going as my duty in my role as VP. Fortunately as VP, the chapter would be covering some of my costs. This year the bake sales went so well that most of my costs were subsidized. About a dozen members who wanted to attend this year’s convention did attend, including six who would not have been able to afford to go without the help of people who not only bought up our home-baked cakes, pies and cookies, but left generous donations as well.
With the convention two months away, life went on, with my wife going to work; me trying to get some decent sleep due to the sleep apnea, and Chris and I taking care of little Elaine. Chris was great with baby Elaine, except she refused to change dirty diapers. That duty fell on daddy or mommy when they were home. One day, I walked into the living room to find Auntie Chris sitting down to a movie while baby Elaine enjoyed her toys in her playpen. When the credits for Nightmare on Elm Street came up, I looked at baby Elaine and quickly decided this was not a good idea. Auntie Chris agreed and found something a little more family-oriented to watch. About a year or so later, I brought home a used copy of Chuck Norris (Saturday type) cartoons called Chuck Norris: Karate Kommandos. Elaine and I watched them together, until during the 3rd cartoon, I discovered that my little girl was kickboxing her teddy bear. I watched the rest of the cartoons on the VHS after my little kickboxer was down for a nap.
The possible renters interviewed by Diana for the guest room just kept coming and going. I got to figuring we were in no danger of losing a guest room anytime soon.
One weekday morning I awoke to the sounds of my wife getting ready for work. I was surprised to see it was so grey in the room, I recalled the weather man calling for a bright and sunny day. Possibly the weather man was wrong again. Instead of the sunny day called for, it looked like a dark, cloudy day, possibly with rain on the way, but I currently was hearing no pitter-patter of rain on the roof.
I said to Diana, “Di is the sun up yet?”
“It’s just starting to get light out; that’s why I have the bedside light on.”
Looking in the direction of the bedside light and still seeing nothing but grayness, “Di?”
Hearing the concern creeping into my voice, I heard her stop what she was doing and answer, “Yes, Hon. What is it?”
“Di, I’m blind.”
Thinking it some joke, she replied, “Yes, Hon, I know. I’m the one who takes you to John Hopkins for testing, remember.”
“No Di.” I continued, fighting to keep my voice from wobbling with the building emotion I was feeling, “I’m totally blind.”
Chapter Four
Adjusting
I heard Diana rush around to the bedroom doorway, I heard her flick a switch, then rush to my side, announcing, “I just turned on the bedroom lights, can you see better now?” I could hear the concern in her voice as I felt the bed change as she sat down next to me. Her voice vibrated with so much concern I was tempted to lie and say, “Yes, that’s better.” or perhaps, “Oh, OK. My eyesight was just slow to wake up.”
Sadly, I went with the truth, “No. all I see is grayness. Di, I’m totally blind. My eyesight is gone.”
“Now wait, you have had periods of fatigue that weakened your eyesight so you couldn’t see. Could this be what is happening?”
“I wish. No. During those times I still had light perception. Now I am not seeing anything but grayness–-nothing.” Flashing back to a similar visual experience, I added, “Di, remember when Johns Hopkins gave me color tests and the light grey was coming up more frequently?”
“Yes, a little.”
“When the color gray started coming up more often during the color test, I asked why and was told, ‘When you are seeing gray, what you are not seeing is the true color that is there. You are losing color perspective in the lighter color range. This is very common in people with RP.’ Well Di, that grey is all I am seeing now. ”
“I’ll take the day off. We’ll call your eye doctor and see what we can do. I’ll run you up to John Hopkins, if that’s what it takes.” A frantic need to help was clogging her thoughts, as noted by the comment on driving me to John Hopkins. She hated city driving, any city, including Baltimore.
As I reached out for Di’s hand, her hands found mine, “Di... there is nothing the eye doctor can do. I have had yet another spurt of vision loss and now, as the doctors have warned us, I am totally blind. The RP has finally taken away what eyesight I had. I may never see again.”
Real men don’t cry. I refused to cry. Diana cried enough for the two of us.
Then baby Elaine cried. Diana said, “I guess I’d better go see to our little one.” As I listened to Diana talking to Elaine and changing her diaper from the sound of it, I sat listening and thinking, I guess I will never see those two again. Over the years of research, so little seemed to be learned about RP that I really did not have much hope for a treatment, let alone a cure for RP. No, I figured my eyesight was gone and gone for good. It was time to adjust and go on.
Providentially, I had many years being legally blind, with one foot in the world of the sighted and one foot in the world of the blind. I sat hoping my slow vision loss was going to help me adjust to my total loss of vision. I figured this would make adjusting to total blindness easier as well. Why me Lord, why me?
One thing did surprise me...seeing grayness. I had always assumed that once I was totally blind, I’d see nothing but blackness.
I got up, put on some shorts and sandals I had laid out on and under my valet chair, then went down to put on the news. This was somewhat normal. Over the years of sitting around fatigued, I had become something of a news hound. I may have gotten this from my mother who, it was reported, woke up with the news, had lunch with the news (during her working at home years) and later went to bed with the news. I had not bothered to look at the TV remote to use it. I had not looked at the TV remote in years. While I couldn’t tell you what all the labeled buttons are named, I could tell you what the buttons do by feeling the location, so turning on the TV was no trick.
I can’t say I was really listening to the news that morning. I did not bother with breakfast; for some reason I just
was not hungry. Even when Diana was finished with Elaine and asked what I’d like for breakfast, I answered, “Not hungry, thanks.” I just went back to not seeing the news and, being mentally distracted, not listening to the news much.
Later, when Diana offered to fix me some lunch, I almost said, “OK.” But instead I got the idea of fixing my own lunch. With Diana home, if I ran into problems I could call on her for help. So instead I answered, “I’ll do it.”
After I walked into the kitchen, I found the rack of plastic trays with little problem and moved to the counter. I carefully checked the counter with my free hand and discovered that it was cleaned off, so I put the tray down. So far, so good. I only had to feel a little in front of me to find the bread container and get out a couple of pieces of bread, again no problem.
Now I had to turn and walk two steps to the refrigerator and open it. Quickly finding the meat drawer, I opened it carefully, so I would not open it too far. Feeling around, I found the rounded package of bologna. I recalled that we sometimes got turkey or chicken slices in the same type of packaging. We’d have to work on that. The mustard was on the refrigerator door where it belonged, so I was set.
The trickiest part of fixing my lunch, while being totally blind, was getting the mustard on the meat and only on the meat. I believe I succeeded.
Leaving the kitchen, tray in hand, and heading for the stairway down to the family room, I bumped into one of the dining room chairs, not properly pushed in and kept on going. I recalled my boss who would call me the human pinball because of the way I’d bump into things and keep on going. As I headed down the stairs I heard the chair being pushed in. Had Diana been watching me the whole time? How loving of her.