2006 – Although I have been disabled for over a decade and a half and am usually strapped for cash, I have a good life – maybe even better than it was when I was healthy.
Many people associate the good life with having a career and plenty of money. You should be earning enough to own your own property, enjoy your favorite pastimes, plan for retirement, and stay out of debt. There should be enough left over to throw at life’s little emergencies to make them go away.
The Prime of Life
I believed in the American Dream, too, in the early 1980s when I was in my 20s. I had a position as a museum restoration carpenter. I owned an aluminum-sided cracker box in the suburbs. I was lucky enough to find my “soul mate” and get married at 28.
I should have been happy, but I wasn’t. My job entailed long periods of sheer drudgery interspersed with brief interludes of highly interesting projects. At times, the only things that made going to work worthwhile were the people I worked with. They shared my mechanical aptitude and sense of humor. We enjoyed each others company enough to associate regularly outside of work.
I’m the kind of person who’s not happy if he’s not learning. I had been spending several months at work, disassembling window frames and sash, scraping off 150 years of lead paint, and rebuilding them. This became tedious after about a day. It wasn’t so bad, except that I had also been put in a supervisory position over a new employee who clearly didn’t want to work. This slowed me way down, and I found myself beginning not to care about the job that I had once cared very much about.
I Am Not My Work
It had been at least a year since I had learned anything new. It slowly dawned on me that my skills were rarely being developed or even used anymore – but did that matter? I had a job title, so that’s who I was, right?
I told myself I was lucky to have steady work in a field that I loved – and things would get better again. At night, my wife could see that I wasn’t happy. By day, there might be an event to clean up after, garbage to collect and haul, and then, if there was time, back to historical preservation in the guise of scraping paint.
The next interesting project seemed too far in the future to matter anymore, and I knew it wouldn’t last long if and when it came.
My wife had recently left her job to go to school for computer programing. I had a bad experience in college with an inept Basic Computing instructor. He was a last minute substitute and had no desire or idea how to teach command line programming. I had been frustrated by the experience and stayed away from computers for years because of it.
I knew my wife had the aptitude to make it through the tough courses. She saw many of her classmates wash out, and I was extremely proud of her when she graduated.
We started to discuss the future. She now had some very marketable computer training, and I knew joinery. We made plans to sell our cracker box and move to an old 1840s house I had in upstate New York. I would go into business reproducing antiques for museums, and she would have no trouble finding a job in her field.
My boss wasn’t happy when I told him I planned to leave and offered me more money. The director of restoration visited me a short time later and asked me if there was anything that would make me stay.
I never knew how valuable I had been until that moment.
However, a raise or any other concessions didn’t matter at that point. I needed and had planned for the change, and I told him that. Later, my former boss did throw some work my way, so it seemed that I was forgiven.
It was now Autumn of 1986. We packed up and made the move.
And Now, the Good Life
Life had become very good. I was working 12 hour days, not because I had to but because I couldn’t tear myself away from the work. I had a waiting list of clients, and there was a constant flow of shavings and saw dust out of my shop. The local lumber mill owner knew me by name. I was in peak physical condition.
My wife had a job in a clothing store. It was not in her field, but it was income. She eventually got a position as Network Administrator for a small insurance company, but for now the sales job sufficed.
Although we weren’t making a ton of money, we had enough to live comfortably. We knew we had made the right decision. We loved our historic house, which I was slowly restoring on weekends. Our neighbors were helpful and found us “interesting”.
It was too good to be true.
The Best Laid Plans…
I was 31 years old in October of 1988 when I suddenly came down with the flu – or so it seemed. After a week of lying in bed with no improvement, the doctor concurred. It was just a bad case. I only needed to rest and wait it out.
After a month of coming home to find me prostrate on the couch, my wife took matters into her own hands. She made more doctor appointments, none of which yielded a diagnosis.
A few months later, I was waking up at night with astonishingly painful headaches. I still had no energy, and I felt dizzy. I tried to return to work, but I had trouble concentrating and couldn’t remember some things. I couldn’t work for more than a hour or two before exhaustion set in. The quality of my work was not what it should have been either, and that was the most bothersome thing.
At night, if the headaches weren’t waking me up, the body aches were. More time passed, and it became difficult to even fall asleep at night.
What was happening to me? Two years of my life went by. I had seen over a dozen internists and specialists. One doctor suggested that it was all in my mind. A psychologist would later disagree.
‘You Have a Syndrome’
After three years with no improvement, dwindling hope, and a declining bank account, a new doctor stared at me from across his desk. “I’m pretty sure you have CFIDS.”
“Sea Fizz?” I asked. “What is it? How do we cure it?”
He explained that there had been no causes determined for “Chronic Fatigue Immune Dysfunction Syndrome”. It was diagnosed by a set of symptoms. “You have them all.” From that time to the present, all you could do for CFIDS was take vitamins and, if possible, exercise.
Although it meant absolutely nothing, having a diagnosis made me feel a little better. At least it was vindication of my sanity – and I had not been feeling very sane for some time.
I had suddenly gone from skilled specialist woodworker to useless couch potato. I was feeling sorry for myself and had entered a very dark place. I was in pain much of the time and had completely lost all of the things that I had once used to identify myself, including my sense of humor.
With no real hope for a cure, was there really any point in dragging this out?
A Time of Reassessment
About this time, we made the decision to leave our historic house. I couldn’t restore it or even maintain it. Its sheer age made it inconvenient for an energy-challenged person to live in. We moved a few miles away to a low maintenance 1960s ranch.
Maybe it was the new environment or just getting away from the things I felt I had abandoned. I began to reassess my life. I started to realize that I was actually in a very good position to expand my horizons. Clearly I was no longer a carpenter or a joiner, but that left an entire universe of other possibilities open to me.
Until then, everything I wrote was by hand with a pen. I had gotten through college without ever learning to type.
I sat down at my wife’s old PC. It ran some version of DOS and had Microsoft Works installed. I methodically taught myself to type. A few weeks later I had one fantasy novella written and a start on another one. I was never able to get these published, but after years of stagnation, I had actually taken steps toward improving my situation – with a hated computer no less.
Soon I was editing a newsletter for a nonprofit organization I was a member of. I was feeling empowered.
A friend learned that I was using an obsolete 286 and gave us an old laptop with a broken keyboard and dead battery. It had a grayscale screen and Windows 3.1. I added an external keyboard and mouse and had a marginally working (if not portable) system.
I had used this setup for about a week when another friend inadvertently changed my life. He had just bought a new PC and wondered if I wanted a Macintosh IIsi with System 6.0.8. There was nothing wrong with it – it just no longer met his needs.
The rest of this story is on the pages of my website, hardsdisk.net.
It took a disability to make me realize that there was more to me than my chosen profession. Falling behind can allow you to pick up some things that you were missed in the rush. Further, we can develop prejudices in life that ultimately prevent us from realizing our potential.
I’m still disabled, and I probably always will be. It may demand my attention, but it doesn’t control me.
I was not my profession, and I am not my disability. I seek out opportunities to learn now. I always have at least one project. Sometimes it pays; sometimes it doesn’t.
I’m lucky to have a partner in life who can see things in me that I often can’t. I’m also blessed in that I have always been resourceful.
I can’t throw money at emergencies, but I know the sublime satisfaction of using my wits and abilities to successfully work through them.
May your journey through life be as rewarding.