Life, for me, began in March of 1936 in Hempstead, Long Island. Dad was a State Trooper at that time, and Mom, who had been a telephone operator, became a stay-at-home mother. We lived in Roosevelt, NY, where I started school at the Centennial Avenue School and continued through the third grade after which we moved to Binghamton, NY, Dad’s home town. I don’t really know what precipitated the move, but I think that Dad was fed up with the political machinations in the troop in which he served, and thought that things might be different in an upstate troop; he gave up his corporal stripes in order to make the transfer.
We lived, for almost a year, with my paternal grandmother (Gramichee) while my dad looked for suitable housing for the family. I attended the fourth grade at the Benjamin Franklin School on the south side of Binghamton. The war hadn’t yet ended, so Mom took a job at the Remington Rand factory in Johnson City until we finally moved to Adams Avenue in Endicott, NY. I began the fifth grade at Saint Ambrose School.
It was during the time in Endicott that Dad finally had enough of the prevailing conditions in the State Police; he quit after having served for seventeen years, and bought a bar and grill on the north side of Endicott. Life was very ordinary, and I have no really outstanding memories from those years other than happy times at the park next to my dad’s bar - the guy who ran the carousel used to let me work the gate to allow just the maximum number of people board the ride – and the times when we would go to the bar on Saturday mornings to help “string” the spiedies that would be sold during the weekend.
After a year or so had passed, the owner of the building that housed the bar and grill decided that he wouldn’t renew my dad’s lease on the property; he wanted to take over the well established business for himself. Dad decided to sell his liquor license and move the family back to Long Island where he thought that spiedies, unheard of there, just might catch on and draw customers to a bar and grill that he planned on buying. Unfortunately, the spiedies were a dud; it seems that the locals didn’t much care for the taste of lamb from which the delicacy was made. Both Mom and Dad worked night and day to make the business go, but it eventually began to take a toll on my dad’s health, and he was forced to sell the business for his own good. After a short time, we moved back upstate, this time to a house that dad bought in Union Center. My sister and I returned to Saint Ambrose School where we re-integrated with the classes that we had left a couple of years earlier; that made the change somewhat more bearable, at least for me.
As I look back, I realize that my high school years were wasted; I had no direction. Though I had been an honor student in both elementary and junior high school, my high school grades were less than stellar; I was more interested in working after school to earn money for the clothes and things that my parents couldn’t afford. I worked for a time in a dress shop where I swept the floor, washed the windows, and carried packages to the Post Office. I left that for a job in a lumber mill, making those little four rung wooden ladders that were part of children’s pedal powered fire trucks. My final part time job was working at a dry cleaner close to where I lived. I learned to press clothes, and I drove a delivery route two days a week; that was more enjoyable that the previous two jobs and it paid better. I lost that job shortly after I entered Broome Community College (known by another name at that time) because I took a Saturday off to attend a football game – a stupid move on my part, but a learning experience nonetheless.
I graduated from BCC in 1955, and went to work for Link Aviation, a local company that made flight simulators. I started there as an electrical draftsman, progressed to electrical design, got bored with that, went to night school for a couple of business courses, then became an administrator. It was during my early years at Link that I noticed that my legs were becoming weaker. As I look back now, I realize that the problem had started quite a bit earlier in my life.
I was always a heavy kid, overweight but not obese, but still heavier that my peers. I was a slow runner, even when I had trimmed down after a doctor limited my dairy intake. Was I slow because I was fat, or was it something else? I’ve never considered that.
When I was a senior in high school, we had a gym teacher who was also the track coach; he made us run the 100 yard dash as part of the spring routine. I made sure that I lined up with the slowest runners that I could identify, but even so, I finished last. The coach came up to me and said “There’s nothing wrong with the way you run, Zedik, it’s just that you run too long in the same place.” It was about this time (I was 16 or 17) that I noticed that I was having trouble with my legs. Aside from the slow running, I was noticing difficulty getting up from a squatted position. I also recall an old friend of the family, visiting during the summer, who had taken training to be a fire fighter. He was demonstrating the “fireman’s carry” where he would drape a person over his shoulder and secure them with one hand while leaving the other hand free. He and I weighed about the same; he lifted me easily by using his legs rather than his arms, but I was unable, after several tries, to lift him. That was the first real indication that something might be wrong with my legs. I didn’t think much about it because I was able to do anything I wanted. I was a good swimmer, a fair dancer, and I played golf. Some of my buddies liked to bowl, but I had a bit of difficulty doing that because I had to support my full weight on one leg with the knee bent; I felt like the leg would collapse. Well, I didn’t like bowling anyway. I was on a pistol team at work so I went to pistol matches when my buddies were bowling. No big deal.
I started noticing more difficulty going up long flights of stairs at work, and I mentioned it to my aunt. My parents had moved to Syracuse (about 80 miles north) but I stayed in this area because I had a good job… I lived for a time with my aunt and uncle. They sent me to their doctor who examined me and sent me to a neurologist who identified what he termed “a muscular atrophy”. He decided that more testing was in order, and made an appointment with a specialist in Syracuse. I went there on a Friday afternoon so that I could spend the weekend with my parents. The doctor did a muscle “grading”, rating the relative strength of my muscles groups on a scale of… I don’t know… maybe 1 to 5. He was going about his business, and I didn’t notice much weakness until he got to my shoulders. He told me to press my fists together in front of my chest, and to try to prevent him from pulling them apart. I pressed, hard; he pulled and separated my fists with surprising ease. I was astonished. We did it again with the same result. He said that there was definitely a problem there, and that I would need more testing. An appointment was made for me to have a full muscle grading done by a physical therapist; he would follow that with a spinal tap. So, there was something wrong, just exactly what wasn’t known. I didn’t worry about it. Why worry about the unknown? I’d wait for a definite diagnosis.
I went back a week later to get the news… muscular dystrophy. All I knew about the disease was that kids who got it were dead by age 13 – I was 20 or 21, and I wasn’t dead. I learned, from that specialist, that there are many different forms of MD, many of which are not fatal. He diagnosed me as having Landuzzi’s MD which affects the hip and shoulder muscle girdles. I asked all the question that I could think of at the time i.e. life expectancy (normal), treatment (none), ability to continue walking (I might need a hip fusion a long way down the road), transmission to offspring (most likely not, though they might carry a recessive gene for the disease). No mention was made of breathing or speaking difficulties, or the eventual inability to walk. I truly believe that he didn’t know what the progression would be, only that it would progress, albeit very slowly. He wished me good luck, and I left.
I distinctly remember walking down the three cement steps from his office to the sidewalk, thinking “so that’s what the problem is.” I wasn’t terribly upset, and this is where I differ from a lot of other people, I wasn’t frightened or angry. I told my parents. My mother went to pieces, but my dad was more inquisitive and stoic (that has to be where I get it from). I went back to work.
Joyce and I were getting seriously involved at that time, and we had talked of marriage. I told her what I knew and left it at that. She began to research the disease at the library, learning all she could about it. I told her that I’d understand if we decided to cool things off, so to speak. She said no, that we should continue as we were – we eventually married. Neither of us knew what lay ahead.
We met Dr. Goldenberg when Joyce was pregnant with Julie, and he became our family doctor. He learned about my condition, and sent me to a neurosurgeon friend of his who I saw regularly for several months. He put me through another round of tests and decided to try a series of injections of the hormone ACTH which was known to have a restorative effect on the nerve/muscle connection. I was on a one month regimen (Joyce was doing the injecting) and thought that I noticed some small improvement in stamina. He decided to continue the injections for an additional month – there was no improvement.
Eventually, I got involved with the MD Association; they set up another round of muscle grading to compare with the previous records, and ordered a biopsy of the muscle tissue in my thigh. This just confirmed the original diagnosis. Someone suggested that I go to Boston for additional testing. I asked if any treatment would come from that; the answer was no, so I declined. My mother continued to pray for a miracle, and that was as good as anything the doctors had to offer. I’ve never been one to chase pipe dreams.
I began to withdraw, socially. I had no problem being around people who knew me, like co-workers, family, and friends, but I felt uncomfortable having to struggle to get up from a chair in a public setting. I think that’s what bothered me the most. I recall refusing to go to a New Year’s party for that very reason. The feeling that most bothered me was frustration – it still does, but I’ve learned to be patient. I developed pneumonia at 29, but fooled a lot of people by surviving that with only a little hole in my neck. I went back to work and retired at 35.
I’ve been lucky enough (or maybe stubborn enough) to live to see my daughters married, and their children grown; it has now been forty years since that pneumonia episode which no one expected me to survive. Life, it seems, doesn’t always go as expected, though it can be a drag when one has limited or no mobility. The age of the personal computer came along at just the right time for me.
It was sometime during 1995 that my aide, Sandy Dawson, who just happened to be (along with her husband, Ron) a computer junkie, thought that a personal computer would be just the thing to keep me occupied; I thought otherwise. I had no exposure to computers, and couldn’t see what use I could make of one. Sandy, to her credit, persisted, telling me about all the things that she and Ron were doing “on-line”; I just couldn’t see the value in having a computer of my own. Well, Sandy continued to encourage me (she actually nagged me), and asked if I would try a computer if she got me a “freebie” – she knew someone who refurbished old IBM personal computers, and made them available, at no cost, to disabled people. I’ve never been one to turn down something for nothing, so I agreed.
The computer was much easier to use than I had imagined, and I was soon ready for a bigger and better model. However, being the frugal sort that I am, I opted to buy a used demonstration model from one of the local suppliers. Once I signed up with an Internet provider I found an outlet for my frustration, and I took to it as a fish does to water. I discovered that I enjoyed writing with a computer because of the ease of editing; erasers and wads of wasted paper were quickly forgotten while the spell and grammar checker were put to good use. I also discovered the world of Usenet and the thousands of special interest groups that exist on that network. I made many friends from not only the United States, but from all over the world, and have met at least twelve of them here in my home. I’ll always be grateful to Sandy for her persistence in getting me connected to the outside world once again.
Sandy is one of the many aides who have helped to care for me over the past 26 years. There have been too many to mention, or even recall for that matter, but Helen Harris was with me for 12 years, and Sandy has just surpassed that record for longevity. I’m grateful to all of them for their dedication and unfailingly good spirits; my life is easier thanks to all of them.
June 20, 2005