published in Volume 6, Issue 4 on December 31st, 1999
Unless responsibility is circumscribed upon us, it probably doesn't come naturally to most. It certainly didn't for me.
Not long after I graduated high school, my father put it bluntly, "You're so irresponsible! I don't know what we're going to do with you. You have to buckle down and figure out what you're going to do with your life."
"Well, maybe college eventually," was my lame reply. I had hated high school and wasn't looking forward to college even if it had been possible. It wasn't.
Dad snapped, "You know that Rehabilitation doesn't think college would make you employable. Because--" But he didn't finish.
He meant because I was crippled. A word that was as obscene to him as the reality was to me.
I snagged my cane from the corner of the table, got up, and hobbled into the dining room. "Maybe I'll get hit by a truck and save everybody grief," I said.
"I'm thinking that you can learn to do bookkeeping," Dad said. "You know that I'm not going to be around too much longer. And your mother won't live for ever. If you don't buckle down and take responsibility for yourself, the State's going to put you in a home. Mark my words."
In the final analysis, we are all responsible for our own successes. What we'll eventually have is a direct function of current our hopes and dreams and plans. ...It takes some of us longer to face up to this.
College was beyond reach. My parents couldn't afford to send me out of state, Voc Rehab refused; my grades excluded any scholarship. A wealthy old maid aunt was paying for my sister's college education. Aunt Myra refused to help me. It was commonly accepted that the handicapped be kept locked out of sight.
The only way that I saw was to get serious about my writing. Writing had been a strong point for years.
I was still hoping for another brain operation to help my legs. Six neuro-surgeries had made splendid medical history as far as my hands and arms were concerned. But the operations hadn't helped my legs that much.
In the next year or so, I wrote letters to my neurosurgeon asking him to do a seventh operation. "So I will be able to go on to college," I said.
Dr. Nulsen couldn't understand why the Ohio Bureau of Voc Rehab was being so stubborn. He told me that he could think of any number of professions that didn't require the ``abilities of a football player'' as he put it.
I didn't argue the point. I just kept asking for him to consider another brain surgery to help my legs.
I was a virtual shut-in. The city busses had stopped running and we lived miles from anywhere. My dad saw no sense in letting me learn to drive.
My workdays as a writer filled at least 6 hours every day, more than 350 days a year. Even when I finally began college. Short stories and articles and poetry, and novels. My successes were few but I stuck to it.
The seventh brain operation finally happened in January, 1964. The results
were horrific. The surgery that was to rid my right leg of the constant muscular
tension all but destroyed me. My entire right side was gone--rendered virtually
useless--and my speech was significantly worsened. Torsion dystonia was
considered the most stubborn and unresponsive of the neurological disorders. Dr.
Nulsen had considered the first six procedures true miracles;
this time there were no miracles.
Now I was faced with being confined to a motorized wheelchair, or crawling on my hands and knees--with difficulty. Or bedridden. Instead of surrendering to my worsened condition, I embarked upon two years of rigorous physical therapy. Daily, I dragged myself around the perimeter of our yard 20 times on crutches. Or 50 times from one end of the house to the other when it rained or snowed. I forced my right hand to re-learn to tie the work boots that were the only shoes to stay on my feet. I practiced reading out loud; and singing. Months were spent inside rehab hospitals near Cleveland.
Aside from re-learning to tie my shoes, there was virtually no improvement. My stamina increased, perhaps.
My left hand and arm had been unaffected by the last brain surgery, and I made the most of the situation. I took a year of correspondence-course college English from Ohio University during 1966, and again asked Rehab to pay for college. I could go right here in town I pleaded. The Mansfield Campus of Ohio State was recently finished and I could go there. Here. At least for the first couple years.
Rehab finally okayed it. They funded a motorized wheelchair and I spent two years getting the prerequisites out of the way. As for employability--- well, that was something else. A psych prof told me that with a Master's in psychology I might be able to quality for scoring tests. Certainly nothing else, since my speech was severely impaired and I was wheelchair bound. He really didn't understand what I was doing in college unless it was to make me feel better about myself.
I was an A+ student in every bioscience course I took. My neurosurgeon, Dr. Nulsen, assumed that I would become a physician. I wanted to pursue something in the bioscience field; certain parts of medicine interested me, but not enough to sustain me through four years of med school. Physiology grabbed me, and genetics; and biology at the molecular level. But I wasn't permitted to take the requisite chemistry courses.
"I'm not having you fall over in lab and hurt yourself or anybody else," the head of Chemistry said. "And then have you sue the University. No. Absolutely not."
I requested Rehab to send me out-of-state to finish my degree. Ohio had nothing for the disabled. In response, Mrs. McDermott brought her boss, a Mister Wheeler who had lost both hands in a farming accident, to dissuade me from trying to go further.
"Look," Mister Wheeler said, holding up his prostheses, "I dreamed of being a mathematician. But my profs proved that I couldn't do it; I couldn't write fast enough with these." He shook his arms at me. "So I had to give up my dreams. I had to wake up to reality. And I suggest that you do the same.
"Look. I can't write a story; but you can. So if I were you, I'd forget going on to college and stay home and write."
I grimaced at the thought of staying home.
"Look. It's a fact. You are horribly handicapped, and I, being charged with the responsibility of looking out for spending the taxpayer's money wisely--I've got to make some hard decisions sometime." He looked at Mrs. McDermott sitting in the chair beside him; then at my parents and me on the davenport.
"I'm denying your request that the Bureau send you on to college out of state."
And that was that.
One day in the fall of '74 I made tea for my father. He had been forced to retire from Sears some months earlier. It was evident that he hadn't much time left, and this afternoon, clinging to the wall to walk, I'd stopped by his bedroom on my way past.
"Do you want me to make you some tea?" I don't know what made me ask; we rarely talked; or looked at each other.
Dad nodded and I asked him to give me 10 minutes. In the kitchen I filled a hot pot with water, took two cups, tea bags, and got the tray from the sink. Put everything on the floor and, crawling, pushed it into my old man's bedroom. There, I plugged in the hot pot and a few minutes latter we were having tea. It was the first time, and the last.
My dad began turning away when my disability had begun 20 years earlier. We hadn't exchanged more than a hundred words since I'd left college years before. Even now the words were sparse.
"I don't know what's going to happen to you," he said after a long silence. "I really don't. I just hope you make it as a writer because that's about the only way."
"Yeah," I said. "I know. I'll keep trying; that's all that I can do."
"You've got your mother's brains, but you've got my perseverance. And you don't get nowhere without both of them."
"I'm going to keep trying."
Suddenly, a smile broke through his pain. "Until you die with your boots on, even? Like me?"
I don't remember if I answered that; nor do I remember if he said father was so close to dying and in severe pain almost constantly. I remember pushing the tray with the empty cups back to the kitchen; no more.
My father was taken by ambulance to Columbus not long after that. My mother went with him. One of my father's cousins checked on me occasionally during the following three weeks until his death.
Through some serendipitous turns, three years later found me in Berkeley preparing to start college. A year after Dad's death my mother and I had moved to the California desert. A trailer park near Palm Springs.
Six weeks later I was on my way to study Zen in San Francisco; and after 19 months I left Zen Center to go back to school.
The difference between Ohio's and California's philosophy on the education of the disabled was the blackest midnight compared to the brilliance of a desert noon. Batteries of examinations by the California Department of Rehabilitation showed that my mathematical skills were exceptional and I planned on a career as a tech writer. By sheer and truly bizarre chance, though, I discovered computers. This serendipity delayed my entry into the University of California several months. For the good I think.
In 1982 I graduated with my electrical engineering degree. Subspecialty, computer science. At 37 I was ready to start earning my way.
If you remember 1982, it was the heart of the worst economic downturn since the great depression, and jobs were hard to get. I had interned at Livermore Labs for nearly three years. This had let me pay some of my own way through school and had given me real-world work experience. Still, none of the larger corporations would hire me. I interviewed on campus and off, taking the BART train and busses to literally dozens of places.
"So, did you heard anything from IBM?" I asked my counselor one rainy day.
Jim looked flustered. He backed his wheelchair away from the desk, wheeled over and caught the door, slamming it shut. "I don't think we're going to hear any news from Big Blue," he said. "At least not anything you want to hear."
I was puzzled. "I thought the interview went pretty well."
"That's probably true. I've heard only good feedback from wherever you've interviewed. But with IBM, well.... " Jim sighed. "I've heard this from several people so I can't discount it. IBM doesn't like to hire people with speech impairments. You can be paralyzed from the nose down but if you can do the job, IBM'll hire you. Big Blue likes to hire crips because it's good for the ol' corporate image. ... "
I heaved a sigh. "Just not me."
For close to three years I consulted. Consulting is what you do if you can't find a real job. It was brutal; living on the very edge. No health insurance; no insurance or benefits of any kind. I took BART and bus to many jobs over those months. I relocated twice because I couldn't drive and some jobs were hours away from Berkeley. Some jobs were only a couple weeks; some were total misfits; a few lasted several months.
In October, 1984 I got married. I was ``between-between jobs'' and managed to snag one in November or December. I was ready to accept virtually anything so that Bet and I would have a roof overhead, and managed to find work that lasted eight or nine months. It was slave-labor, really, but it kept food on the table until, through a USENET job newsgroup I found my first full-time position in northwest Wisconsin.
In the years since that first regular job, I have never worked for any huge corporation. No IBM or ATT, no Motorola, no Hewlett-Packard. Only small-to-medium sized operations or startups. By nature I'm a risk-taker, and this fits well with the ungodly long hours that startup companies demand. But I do my work, like everybody else. Put in my 50 to 60 hours a week and go home normally satisfied with my results.
This work is something that I'd never have foreseen in a million years. My interest in science dated from age seven when I was fascinated by The Atom. I like history but stay clear of the past--for obvious reasons. I'm interested in the present and what's ahead, near- and far-term.
In the late 60's I read a newspaper article on cryonic suspension, the then-theoretical notion of being frozen upon natural death, and revived decades or centuries later. When I was in my early 20's I felt sure that when I was 40 or even more ancient that medical science would have found a complete cure for my disability. If not, well, than being frozen and revived would give me a second chance.
I never was obsessed with the idea, but it was something that stuck with me, and in the late 1980's I set aside a few thousand dollars in case cryonics had more of the bugs worked out in the years to come. Of course I might get run over by a bus before ever having a chance to be frozen, but no big deal.
...My deepest love is still writing and in just the past several years I've gotten back to it. In '93 when a startup failed, throwing scores of us out of work, I took advantage of the time off to write the first novel in 17 years. After not having written save for editing and rewrite jobs during college, the story flowed onto the screen.
No luck so far with it's publication--at least not in paper--but it was great therapy to be writing again. The several dozens who bought an electronic copy liked it, but the general lack of interest otherwise makes me certain that I found my calling as an engineer!
The twists and turns that life takes wrought my next adventure with responsibility. The Fates caught me by surprise in early March, 1995. Bet was late.
I waved it off and kept formatting my novel. "Your periods have always been irregular."
"Yes," Bet said, "but never this late. Almost two weeks."
I stopped working and turned the wheelchair to face her standing in the doorway. "I thought only a few days."
She shook her head, smiled, and made a cradle of her arms. Swayed then, back and forth and hummed.
"It's not funny!" I said. Bet didn't say anything and I added, "You were always terrified of being pregnant, hon... ."
She nodded. "But I think it's finally happened, Daddy"
"Bet, I'm too fucking old! I'll be 50 in two months, for Chrissake!"
"Well, that's what you get for doing it."
I mumbled something and turned back to my work. I really wasn't that concerned. We'd had a couple false alarms before. Neither of us was that sure that we wanted children; we left the decision something like: If it happens, it happens; otherwise it will just be the two of us.
The pregnancy test the following Monday proved positive. I must've stared at the thin red line on the tester for 20 minutes. A small part of me felt warm and fuzzy; the rest of me felt like I was an overloaded mule that had just had a grand piano added it its load. I had kinda, sorta hoped to retire in the next five to seven years. Somehow. Consult part time from home, perhaps. I could feel the years; it was starting to get noticeably harder to drag my bones out of bed. More aches and pains... . My disability hasn't changed much since the last brain surgery, but the natural wear and tear was beginning to take its toll.
---Yes, it was true that for the past five or six months I'd been doing 90+ hour weeks. At work, plus volunteering for various public interest electronic organizations. Plus finishing my novel for electronic publication. By now it was clear that I was never going to be wealthy, and if I wanted to get some earnest satisfaction out of this existence it meant doing it after hours.---
At the same time, there had been times since we had moved to Seattle when I had spoken plaintively of not having a child. Maybe even just one.
I stopped working again, turned the wheelchair around again, and drove the few feet to where Bet stood beside the door. Opened my arms and she fell into them. We held one another for the longest while.
Bet's pregnancy was extremely hard. From the beginning of the second month till the end she was nauseous and had a variety of other ills. Countless nights, I dragged myself out of bed and climbed into my wheelchair. Went into the bathroom and held her while she retched. I would have readily taken the nausea upon myself if I could have. Of course it wasn't possible. We have no choice but to endure our joys and sufferings ourselves. Just not alone.
We went through the entire 36-hours of labor together. At the end, our daughter was born into the world at just past 6 A.M. on the twelfth of November.
Allyson has made these rugged decades worth it. Whenever I see her every ache and sorrow disappears; only an ineffable happiness remains. I'm convinced that she is incontrovertibly the best thing that has ever happened to the universe. Even if I did have something to do with it.
Allyson has Bet's lovely eyes, nose, and mouth; she's got my fingers and toes, and my square chin. Sometimes I can see the shadow of my face in hers; it brings a quiet joy; and fright. I hope that Allyson's determination matches mine. The 21st Century is hers and she's going to need grit and a strong will to prosper. Because human life spans will surely double or triple within the coming century, the 22nd Century, or a significant chunk of it, will be hers as well.
Sometimes I do get weary of this game. Life is a game; a war game to be sure; but a game nonetheless. We're all warriors; symbolic and otherwise. How we fare in this theater depends largely upon how lucky we are; and how sharp. There isn't much that we can do with the hand that fate deals or the fortunes that befall us. Sagacity and will are other matters.
I hope that I'm able and in reasonably decent shape to see Allyson through college. If will plays any part in the matter, I'll be here--this time through life's wringer. Assuming that I am cryonically suspended when I die my daughter and I may well share her older years and my re-animated years many, many score years down the road. Cryonics is now fact, not sci-fi; still, it requires determination, action, and cooperation to accomplish. But then, I've accomplished more difficult things.