A Brief History Of Myself
On the paternal side my heritage is mostly Polish, Russian and Lithuanian. My father's parents were born in America. His maternal grandparents were from Russia and the Russian-governed part of Poland. His paternal grandparents were from Russia and Lithuania. No information going further back is available, but a lot of his paternal grandparent's family were killed in the Holocaust.
On the maternal side, my mother's heritage is largely Polish in origin. Her paternal grandfather immigrated from Poland, met and married a woman born in America and whose family was out of an area in Europe that has been under the control of Austria, Russia and Yugoslavia. Her maternal grandparents came out of Poland while it was under Russian rule. Little is known about the family out of America since Hitler's rise to power.
I was born at the Long Island Jewish Hospital on April 7, 1966, the second of three children and the only handicapped one. I've had my physical disability since birth but could walk, use my arms and hands until the late 1980s-early 1990s. Around my third year my eyes and ears began their own slow deterioration. I cannot remember hearing speech but my ability to speak is dependent on some deeply-buried experience of it and countless speech therapy lessons. Hearing aids became more or less useless by adolescence, but I was able to avoid learning to read Braille until my final year at the Helen Keller National Center.
Puppy Dog Tail Days
There's a cute little jingle that goes: "What are little girls made of, made of? What are little girls made of? Sugar and spice, and everything nice, that's what little girls are made of. What are little boys made of, made of? What are little boys made of? Snips and snails, and puppy dog tails, that's what little boys are made of."
My muscular disorder is not an understood one, but it is thought to have something to do with mitochondria, and the loss of sight and hearing was blamed on Usher Syndrome. In my early years we lived in an apartment in the Queens borough of New York City. While living there, my father spent long weekends with us during the summers at a bungalow colony in the Catskills to escape the city heat. For the first five months of life, I was colicky and miserable, screaming for hours.
I was given help by daytime workers where I lived, and discovered as I grew older the fun of drawing and painting. My family moved to its first home on Long Island during my second year (which is when I began walking) but I remember little of my life in that place. We had our first dog, and my sister was born in 1971, which I recall as being happy about. I remember having to share a double-decker bed with my brother afterwards; he had been around since 1962 and would taunt me by cracking my knuckles.
Playing With Fire
I don't think I was aware of myself as a person until consciousness snapped on like a light bulb, but it must have done so while my mom was pregnant, since I remember being asked if I wanted a brother or sister. A couple years after her birth, we moved to a bigger house in the same town, where I would live until I was sent away to Perkins.
I was enrolled into classes for the deaf and hearing impaired, operated by the Board of Cooperative Educational Services at local public schools.
I had friends who visited me and I them. As a child, I'd ride my Big Wheels. We acquired a golden retriever puppy, and over the years also had fish, gerbils and parakeets. Most of the summers in my childhood and part of my adolescence were spent at a camp. Such summers I didn't like, especially as I grew older. But summer camp taught me swimming, horseback riding, canoeing, and I went on hiking and cave crawling trips. A measure of discipline was ingrained into me from these summers.
The family had a motorboat at the local marina, which was a lot of fun, and we'd fish from it. Our neighbor had several cats I liked to spend time with. A few years after moving to our second home, I dimly recollect attending my brother's bar mitzvah.
My parents used to smoke until their children appealed to them to quit. It's a bad idea to leave matches where kids can get at them, but ours evidently thought me smart enough not to play with fire. Temptation and curiosity overtook me one day, and after swiping a matchbook, me and my little sister trotted outside to the hedge dividing the neighbors' property from ours. I didn't intend to set it ablaze, but the little flame I made on the wooden platform escaped control before my sister dashed back with water. The hedge was ablaze, but luckily it was put out before it could damage the neighbors' house. It earned me a good spanking, and I never went near a match again.
In my childhood, I was insatiably curious and was always asking why? To wield off my innumerable queries, my parents one day gave me as a present a thick volume entitled, "Tell Me Why." I cannot recount how many happy hours I spent at the public library and borrowing books. I did well in most school subjects but math was my worst area. As for the newspaper, only the comic strips interested me. Our backyard pool with its chilly water and biting flies was never attractive but my father was always good with the barbeque there. I remember going on trips to Florida usually to visit my father's mother, and one time the family went to Walt Disney World there.
In the late 1970s, we acquired an Atari 2600 videogame system and my own bar mitzvah arrived. I had prepared for it by learning to pronounce Hebrew words in Sunday classes at a local temple for years. The language I never understood, and I didn't return to Sunday school after this event. In this period, my brother left for college, and he practically never used his bedroom again.
At the beginning of the 1980s, I was using a text telephone device and closed captioning was in my home, giving me the opportunity to watch other things besides cartoons. I became interested in some politics, and was fiercely against Reagan. And I remember the first space shuttle launch.
Microcomputers appeared in my life after my final years in elementary school, where I remember using paper-fed and then screen-based terminals for lesson drills. Then I began using Apple II computers, and at home I was given a Commodore 64. I got into games and then modems, aggravating my parents with bills from CompuServe, Genie and Quantumlink. I also used bulletin board systems until the Internet caused their extinction. It was through one such bulletin board I met someone who eventually co-authored four books and a short story with me.
In camp one summer, I discovered role-playing games with Dungeons and Dragons. Years later, I really got into playing and running such games online before America Online bought CompuServe. That unfortunate event caused many to leave and a decline in playing. Ironically, it wasn't the final closing of the game forums that caused me to leave, it was Windows Millennium, which prevented me from using a DOS-based offline program for CompuServe.
My brother's leaving wasn't the end of my family's breaking ties. In 1983 my parents separated and divorced the following year. Dad took me and my sister to Las Vegas, the Grand Canyon and Hoover Dam. I remember Snoopy Rock at the canyon, and we took a helicopter ride over that great chasm. Since I wasn't old enough to gamble, me and my sister played arcade games. There was a delightful water amusement park I got sunburned at. Later that year I attended my sister's bat mitzvah.
I remember being greatly upset when it was announced to me that I wasn't going back to my high school, but instead to Perkins School for the Blind in Massachusetts. I didn't want to be away from my home and friends. But it was a done deal, and so the final tie of home was broken with my departure.
New England Life
Prior to the decision on Perkins, my mother brought me to Gallaudet University's Model Secondary School for the Deaf in Washington, D.C. Whether it was my attitude or not, I didn't like the people there. At any rate, they attempted to evaluate my nonexistent sign language skills, but up to that time, I only knew the manual alphabet, lip-reading and some experience with a cane from mobility lessons at home.
I remember visiting the National Geographic Society. They had a huge model of Earth rotating above a pool. I used to subscribe to and collect their magazine. As a boy, I also remember reading Ranger Rick, a variety of comic books, Mad and Cracked. In fact, I'd continue reading comics until my vision no longer permitted it.
Having been sent away to camp for years and being on the later end of my teenage phase may have made it easier to adjust in the beginning months at my new school. In any case, I remember being settled in at Tompkins Cottage. One of the less pleasant aspects of life at Perkins were the fire drills that could come at any time, whatever the weather. One time while in the shower, a fire drill went off, and the cottage staff nearly had to drag me out. I can't remember there ever being an actual fire in all my years at Perkins.
In the early part of my Perkins residency, I climbed a stairway to a bedroom on the next floor that I shared with other students. We were all assigned chores that were rotated, plus making our beds and doing our own laundry. The cottage was separated for male and female students, as well as some rooms for staff. All the cottage residents gathered in the dining room during mealtimes. In addition, there was a large recreation room with a television, furniture and several smaller rooms off it. A staff office and bulletin board are also well remembered.
It was at Perkins I met Stephen, John, Jaimi, Anindya and for a brief time, Todd. I didn't care much for Todd, but these other students were interesting and probably the ones I grew to know best. It may well be that my years at Perkins were the highest concentration of intelligent deaf-blind students at that school, as nothing I've heard since my graduation gives me a different impression.
During my first weeks at Perkins, it was necessary for someone to accompany me until I was familiar with the campus and could move across it safely. There are parking lots and streets about the campus, but traffic was rare and cautious. Most of my classes would be in the North Building with teachers trained for deaf-blind students but later on, I would also attend some in the Howe Building and have swimming sessions there. In my beginning classes, I at first would only communicate by lip-reading or writing, but realized quickly I was going to have to accept the idea of people signing letters in my hand. I was also taught many gestures in Signed Exact English, but have forgotten most of them.
I remember my first reading assignment was the book, "The Red Badge Of Courage." I learned to type on a Perkins Braillewriter, but wasn't interested in picking up reading Braille while at that school. Not long afterwards, my primary teacher retired, and the new one had a cat and liked science fiction. I also had mobility instruction, speech and physical therapy as well as cooking classes.
The Howe Building classes were mainly composed of hearing blind students, but it was decided to have me participate in math, biology and civic education classes there with one of my primary teacher's assistants acting as an interpreter. I didn't have the best of attitudes about math, and the math teacher was a strict person who had little tolerance for either attitude or flippancy. I could find her personality exasperating and frustrating. Eventually after being dismissed before a class, my primary teacher had dialogue with me and matters were smoothed out. I remember learning to use an abacus and by the end of my education at Perkins, had grasped some algebra. These math lessons are long forgotten now.
The only thing I remember about the biology class were the huge dead frogs. I didn't want to dissect mine, so my interpreter did. They stank after two or three classes and were thankfully discarded. Civics I have no recollection of except a nice guy that taught it, who at one point needed to prod me to study better as my test scores were dropping.
I also spent time on Apple II computers and remember using them to make a little newsletter. Time was also assigned for doing minimum pay and piece work jobs. Medical checkups were at Perkins' infirmary.
I spent many a happy hour at the mall either browsing in the bookstore for computer magazines and science fiction novels or eating chocolate croissants at Au Bon Pain. John and me had Commodore 128 computers, but Stephen used a Timex/Sinclair machine. For my psychology course at Harvard Extension School, I was given a portable Tandy model 101 for my interpreter to type on. My leisure activities included reading, drawing, going on trips, talking and using my computer or flirts. I remember making a wooden sign for my father's birthday one year and I was also in activities planned by the local deaf-blind group. I went back home for holidays but had summer school at Perkins.
Perkins has always been a Christian environment. Until I went there, Judaism was my basic experience with religion. I've discussed Christian beliefs and read some of the scripture associated with it while at Perkins and afterwards. I've also learned about Baha'i and Buddhism, but eventually have decided religion has not benefited humanity and would be best abandoned. After I fell down one day outside my cottage, staff became concerned about my ability to walk safely and use stairs. It was decided I should begin using elevators, and I was given my own bedroom near the cottage elevator. By the time I graduated, I was using a three-wheeled scooter and a manual wheelchair for out-of-doors transit.
Finally, an event I dreaded arrived: the prom. I didn't want to go, but the staff wouldn't take no for an answer. Names were drawn from a hat so to speak, and I was reluctantly paired and photographed with one of the cottage girls. At the prom, we separated, I had some good food, chatted with people. It was a fairly boring occasion as I recall. Graduation day arrived, and Director Kevin Lessard presented me my diploma and unexpected awards.
Helen Keller National Center
I didn't want to attend Helen Keller because I didnít thin that agency could teach me anything new. My opinion was of no consequence however, so I returned to Long Island and was settled in their residential building. By the time I left that place, what I had thought was more or less correct: most of my time there was wasted and did not justify living on the site. In addition, I'd arrived at a time when high-functioning deaf-blind residents were nearly extinct, so I made no real friendship with anyone except a few staff. Meals were in the residential cafeteria and generally not very good.
In the training building, I encountered IBM brand computers and IBM PC-DOS. I got into a little trouble when I accidentally formatted and wiped out a PC's hard drive in a classroom. My mother got me my first PC clone but for some time I wasn't allowed to have my computer at HKNC. I went to stay with mom or dad on various weekends or holidays. I liked the art class and made some drawings but as my sight degenerated I gave up that recreation. I began using magnifying devices and magnifying software, but my vision was deteriorating at an alarming speed. I bit the bullet and started working on reading Braille. It was difficult so I begin with jumbo Braille, but most Braille is produced in smaller size. I eventually forced myself to read regular Braille. The Braille training was during my final year at HKNC.
Life In Connecticut
In the autumn of 1990, I was set up in a Waterbury, Connecticut apartment and provided staff during the day by an agency HKNC had placed me with. It seemed like a dream come true. I got my Braille display not long after moving there. They had a deaf-blind woman on their staff who started a deaf-blind group and was a social worker. The agency was supposed to help me find ways to earn money but the best they ever did was connect me with a newspaper for some freelance work. They arranged some recreational activities but things began going sour when I was robbed by a couple employees who stole my money, desktop computer system and printer as well as a coat and key holder. My mother's housekeeper at that time seemed to have had her heart stolen and left with one of these guys. After the agency went bankrupt and folded, I had to find and hire staff using some money provided monthly by the state. Before that point, I had moved into a room in a college dormitory in Winstead. My final residence after having to leave that dorm was an apartment near the college campus. My notebook computer was stolen one day when I wasn't in the dorm. During my college years it was necessary to withdraw from two courses due to scanner problems and that robbery. The college provided interpreters who typed to me what the teachers said, and I scanned textbooks.
Before taking college courses, I took an English CLEP test which enabled me to skip English 101. By the time staffing problems forced me back to live with my mother, I'd gotten on the dean's list and into Phi Kappa Theta.
During these years in Connecticut, I was a fairly active member of the American Association of the Deaf-Blind, attended some of their conventions and was elected for one term as a board member. I did a little writing for their magazine. Eventually I dropped out of that group after becoming disillusioned by various attitudes and seeing little progress on anything. Conventions tended to be somewhat disorganized with generally yucky food.
I went to Winnipeg, Canada for their World Science-Fiction Convention and some Star Trek ones as well. Also I collected a bunch of silver coins and received some gold as well.
Long Island Life
From about the middle of 1994 I've lived on Long Island. I lived with my mother until mid-2000. She was selling her house and moving to another state, but my group home wasn't ready. From about mid-2000 to February of 2001, I was in an apartment. For most of these years, I was assisted by home health aides that came to my place during the day. Also during these years my arms and hands got to the point where I can do almost nothing for myself. I haven't walked in years, either. In that winter of 2001 until May of 2001, I was put temporarily in a group home near my mom's house, then finally installed in my current group home. I have no relatives on Long Island anymore. That had been my mom's third house.
I tried one course from Empire State College's Center For Distance Learning. But I didn't like having to scan books, and their materials weren't all that accessible plus the student was on his or her own with no real help. Eventually I found some information on a CompuServe educational forum, and worked with Raymond Chasse, the founder of American Coastline University. I was awarded a B.A. and Ph.D. by him a few years before his death.
On April 7, 2006 the family gathered with me at a restaurant in New York City to celebrate my 40th birthday. Later that year on August 27, I attended my motherís 18th wedding anniversary with her second husband.
During the later part of spring and early summer of 2004, I was tested as a cochlear implant candidate. I was implanted August 26, 2004. The evaluation was done by audiologist Jay Levenberg and the surgery by Eric Smouha, both of Stony Brook University Hospital.
I selected the Nucleus® Contour implant and ESPrit 3G behind-the-ear speech processor, made by the Australian company, Cochlear. My implant was put in the right ear at the audiologistís recommendation, since sound then will be heard in the brainís left side, where language is handled. Activation was on September 29, 2004.
I can hear sounds, some better than others, but generally not as well as in my first few hours. I understand this softening of sounds is normal and will be addressed. With more programming, experimenting and experience, I hope to hear even better and clearer. Already I begin to realize why people enjoy music. The long silence has been broken.
In December of 2004, I had my fifth mapping and purchased a pair of speakers with a subwoofer for my computer. The audiologist noted improvement in my ability to hear higher frequencies and marked me able to hear as low as 20 decibels. My music appreciation has jumped enormously. I enjoy hearing it on Internet radio and CDs. I look forward to better hearing as time passes.
After a half-year my hearing seems as good as itís going to get, and in the summer I find thereís some limited speech comprehension.
On September 7, 2006 I ordered a Nucleus Freedom sound processor from Cochlear. Originally designed to go with the Freedom implant system introduced in March of 2005, Cochlear m has made the new sound processor available for people like me who have their older Nucleus 24 implants. Iíll have access to nearly all the same features with the only exception being the greater stimulation rates possible only with the Freedom implant. Thatís not an issue for me as I donít require anything near the full capability of the implant I have now.
My parents are retired, and my brother and sister have married. I am an uncle with one nephew by my brother.
STUFF OF INTEREST TO ME
I usually find the subjects of philosophy, politics, culture and science interesting in varying degrees. I enjoy reading mostly science fiction and fantasy as well as following news of the world at large. My primary method of reading and interaction is through a computer with an Internet connection. This is possible thanks to an electronic Braille display connected to the computer and a program that presents the Windows screen as text labels and characters in Braille.
Where food and drink is concerned, I like seafood, Chinese, Italian as well as American. I donít like spicy dishes and wonít eat anything and everything. Chocolate is my favorite treat. I generally prefer orange and apple juice or just water.
Last updated September 9, 2006