living in the shadows

Ken Johnson

Part 1 of a continuing series

The focus of this column is my experiences with my illness and my blindness. Its probably the first time in years now that people actually want to hear what I have to say. Its been a long time; 1994 was the last time I actually worked. Ive been a professional patient. Ive been a volunteer worker. Ive been an activist. Ive been a home decorator, a home refinisher, a nanny, and a parent. Currently Im also stripping woodwork, painting, and refinishing everything in my apartment by myself, sort of in perpetual motion. Its very hard for me to sit down, so here we go.

The only thing is Im doing this in a tape recorder and Ive got a million tapes around me, which Ive provided for myself and The Commission For The Blind provided me with a tape recorder a long time ago. I need that little guy who is on the movie set with that little chalkboard, "Scene one, take five" click. I need one of them standing over in the corner of my apartment because this is Scene two Take 4,000. The reason Im doing this on tape is that it can be transcribed later on into computer, because I am not yet computer accessible. I still do not have a computer at my house that is accessible for a blind user.

Currently Im receiving classes at The Lighthouse For the Blind. Ive been over there for about a year now learning how to touch type, moving into word processing. I remember it all, but a lot of it I have to explain to people. You have to forget what you were taught in the past and figure out a new way of doing it. Its all different. Now its a whole new language. People think this JAWS program is something like voice recognition, it is not. It is a whole new program that allows you to move through the computer screen without the aid of a mouse. There is a JAWS cursor that reads parts of the screen working with your PC cursor. The PC cursor will not let you read, but you can maneuver through keyboard strokes with your fingertip just like a sighted person. Ive been learning that for a year. The previous year I was learning Braille grades 1 and 2; before that, mobility training. I was also learning how to get around town, with either a walking mobility cane (which is the little cane that you see blind people walking around with) or a Seeing Eye Dog. I actually used to call the cane my pogo stick; its just a lot easier. So weve been re-educating ourselves through learning how to adapt to a sighted, visual society. I wish society would include us in the beginning, so we would not have to adapt or readjust our lives. It should be done the same way the English/Spanish is done; by providing recorder materials for the blind, TTY, TTD telephones, access descriptive video, closed captioning, etc. It would be very easy to do it from the beginning and we wouldnt have this problem. Its a huge problem.

My blindness is AIDS related. It was caused by CMV Retinitis, which was my AIDS defining diagnosis, which I received in 1994. I call it my opportunistic infection of choice. It was accompanied by Pneumocystis carinii pneumonia, which I had that week in February. It was a whirlwind of activity.

I had met my doctor, Dr. L through a friend of a friend. I had been searching for a competent doctor who specialized in the treatment of people with HIV/AIDS. He returned my phone call and he said "Let me explain to you that my office is cross between Boy Bar on a Thursday night and a Jean Paul Gaultier fashion show". But when Id first gone to his office, a whirlwind of activity, I realized that this was just a man of genius. He is the best and brightest doctor that there is and I will put all my confidence in him. I refer to him as God or Zeus (being the ruler of the gods). He is the ruler of the gods because all my doctors are gods or demigods. But alas, he is the one with carte blanche who rules. He likes it that way, insists that it is that way and yes, I am his crown prince. That week in February (when I first saw him) was a whirlwind of blood work, exams, stool samples, urine tests, x-rays, and a trip to Ophthalmologist because I had been complaining. My Ophthalmologists name is Ann Marie. She is an absolute genius as well as being a raging beauty. All my doctors are fantastic human beings. They are my mentors, my dearest friends and they play a big part in my life. The relationship is not doctor/patient its more of a partnership. We discuss treatment plans as well as options and make decisions together. I have so much respect from them.

I had been complaining about flashes and floaters and the inability to see at night. I was also having a hard time reading print. I had perfect vision all my life, better than 20/20; I was able to read a matchbook from across the room. I have always been very interested in art, I always excelled in it whether it be sculpture, paint, ink, or a collage kind of medium. One of my friends refers to me as a visual genius. I then had to face CMV Retinitis as my defining diagnosis. It was accompanied with Pneumocystis carinii pneumonia.

Again, that week was a whirlwind of activity, doctors, nurses, and fusion companies. I went to have a pick catheter line installed in my arm so I could receive intravenous treatment. Ganciclovir is a medicine that was only available intravenously at the time, and used to combat the Cytomegalovirus Retinitis and to keep it in check. That exhausting week landed me into the hospital with Pneumocystis where I was in St. Vincents for about a month and a half. My recovery was very quick. I responded to the medicine right away, at least the medicine for the Pneumocystis, the IV Bactrum and the Ganciclovir did its job. Later on that summer I added Foscarnet to the Ganciclovir. That Summer I had a Medi-Port installed in my chest where I was receiving intravenous Ganciclovir with Fiscarnet through a special study at Mt. Sinai Hospital to combat the CMV Retinitis.

The Retinitis didnt seem to be helped entirely with just the Ganciclovir. That worked for 2 years, unfortunately the Fiscarnet (having toxic qualities to it) destroyed part of my kidney function. When I had exhausted those two drugs, I moved on to a new drug in 1996 called Cidofovir. I was only able to do it for a few months before I was told that I could no longer take it because the levels in my urine and blood were full of toxins and my kidneys were not filtering properly. I had to either stop the medicine and go blind, or continue the medicine and lose my kidneys.

Throughout the course of those two years the progression, progression, progression of the blindness eventually robbed me of all peripheral vision in my left eye and all direct vision in my right eye. In the beginning of 1996 I was loosing the last little bit of direct vision in my left eye, which had kept me pinpointed on print. I could only read with the aid of magnifiers or special equipment. But now I only see out of the bottom corner of my right eye or I see shadows. My eyes do tend to play tricks on me with flashes, floaters, disco lights; things that are not there. No I dont really have visions of the Virgin Mary or Elvis showing up, but my eyes do have a tendency to play tricks on me. That is the abbreviated story of the blindness.

From 1996 on I made the decision to get on with it and, a lot of people say "What would you do if you went blind?" and peoples immediate reaction is "Oh Id kill myself". Sure, you can kill yourself but then again, make sure you do it right. Do you know how to tie a hangmans knot? Do you have enough power in your little tiny Manhattan apartment (probably with lousy power) that you can take a bath with the toaster without blowing the fuse? Make sure you make vertical cuts in your arms and get into the tub when you do that, OD on drugs or something. Make sure you dont end up like Sonny Van Bulow or Karen Ann Quinlin and take the drug possibly with some alcohol and tie a plastic bag around your head to do this. I mean do it right. Anyway, there is no reason to kill yourself. Its not the end of the world.

Ive come to this point in time where I am blind, and big deal. It is a big deal but its what everybody else makes of it. From 1994 to 1996 you could not really tell that I was sick that I was one of "those people". I didnt have "the look". I was completely independent. I did my medicine at home up to that point by myself. I had nurses come in on a weekly basis and just check because I accessed my Medi-Port myself. I did everything myself. When the vision started to go and I started having problems; I decided to finally give in to it.

I gave in to the fact that I couldnt get around anymore with just the vision, that I needed some kind of aid. Aid not AIDS, I already have AIDS. Once you get some kind of mobility aid where you get a mobility cane or a Seeing Eye dog, you are immediately there. You are blind. Everybody knows your business. When you become blind you loose some control and power over your own life.

What about the definition of blindness? "Blind: without sight, without foresight or understanding, without adequate information". The definition of blind is used as slang as "very drunk". You get the idea. Blind people seem to think that everything else goes along with your vision and either you become deaf, mentally retarded, or just absolutely incapable. Interesting, but according to the Oxford American Dictionary, a disability is "something that disables or disqualifies a person, a physical incapacity caused by injury or disease etc". How about the definition for disabling? You are "deprived of some ability, to make unfit or useless". Useless. So thats the dictionarys definition of disability, disable or disablement. So I have a visual disability or according to the dictionary I am useless. You know when you go through "dis", which is an origin of Latin in the dictionary you also come across such disconcerting or discouraging words such as disadvantage, disagreeable, defiant, disheartened, disintegrate, disloyal, disorder, disparage, disheveled. You get the idea. This "dis" thing is, I am now visually "dis"abled. I am in this term, like a dirty word. I have become a dirty word. So now this is what I have become to society; "Useless, drunk, without foresight or intuition, without understanding", i.e. stupid.

Its really sad in a way because disability is referred to as an "88", which is a dual disability. My first disability is AIDS, (Acquired Immune Deficiency Syndrome) and my second disability is blindness, visual disability. I am disabled. You see those signs on the subway; "Please give up these seats to the elderly or the disabled". So "able" you know, "disabled" I really dont get that. Im able to do every thing else; the problem is Im not able to do certain things because society has prevented me from doing it. Its not because I prevented myself from doing it. I do not stand in my own way, but this is a visual society. I was discussing with my commission counselor just today how its funny, but I get these phone calls from Time Warner Cable, "Hello we want to offer you four free months of TV Guide because you are a preferred customer and after those four months if you would like to cancel it&Or if you would like to continue the subscription well give you a special price". And I say "wait, wait, wait. Does it come in Braille or on cassette because I am blind" and they say, "Oh, Im sorry, no it doesnt". I say "well dont you think it should"? Because people seem to have this understanding that blind people dont do anything. We dont watch TV. We dont go out. We dont know how to cross the street. We dont know how to mail a letter. I was at the mailbox the other day and Id gone all the way across the street to the mailbox (wow, what a chore) and I was putting some letters in the mailbox and somebody came up behind me and said, "Hey buddy, do you need a hand there?" He was just trying to help and sometimes I can laugh at it; but sometimes it offends me. And I said "No actually, I am perfectly capable of mailing a letter by myself thank you".

So there are a lot of funny situations, but with this recent acquisition of blindness in 1996 as well as AIDS from 1994 I would say my real disability is a financial disability (as well as the social disability). Theres a stigma attached to blindness and the stigma attached to persons living with AIDS. Like Id mentioned, we are supposed to all have "the look" or all blind people are supposed to be hearing impaired. I also wonder when somebody asks a blind person a question why people feel it necessary to scream into their ear. I want to tell people, "Look, I cant see but I can hear perfectly well, you can actually whisper." I actually have the ability to hear through walls now; not that the hearing has become better, I just notice it more.

Ken Johnson lives in New York City with his guide dog, Garrick.