A few months after my graduation, Dad was blunt, “I don't know how
you can be so goddamn irresponsible! I just don't know what we're
going to do with you, Gary. You have got to buckle down and figure
out what you're going to do with your life!”
I shrugged and sighed. “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 Rehabilitation doesn't think college would
make you employable... . ” He didn't finish his sentence. He didn't
need to.
Voc Rehab felt I was too crippled for education to make me
employable. “Cripple” was as obscene a label as its reality was to
me. I snagged my cane from the corner of the kitchen table, stood,
and hobbled into the dining room. “Maybe I'll get hit by a truck and
save everybody grief,” I said.
“Wait up! I'm thinking you can learn to do bookkeeping,” Dad said.
“You know 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're all responsible for our own successes.
What we will eventually accomplish is a direct function of current
our hopes, dreams and plans. It takes some of us longer to
face up to this. It did me. (It goes almost without saying that luck--or
sheer chance--plays its part. But I won't use that excuse!)
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
future I saw was to get serious about my writing. Writing had been
a strong point for years. I wrote my first short story in third grade
and wrote poetry and stories until I graduated high school.
In the early 1960's
I was still hoping for another brain operation to help my legs.
Six neuro-surgeries had made medical history as far as my hands and
arms were concerned. The operations hadn't helped my legs that
much.
In the next year or so, I peppered my brain surgeon with letters
asking him to do a seventh operation. “So I'll 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 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 buses 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 with 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 muscle spasms all but destroyed me. My entire right
side was gone--rendered virtually useless--and my speech was
significantly worsened. Early-onset torsion dystonia was (and
still is) considered the most stubborn and unresponsive of the
non-lethal 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, I began 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 a rehab hospital near Cleveland.
Aside from re-learning to tie my shoes, there was virtually no
improvement. My stamina increased, but that was about it.
The nightmares outlasted the physical tharapy.
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 instructor
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. He did invite me to find salvation through
Jesus Christ, though.
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 had stopped by his bedroom on my way into the
kitchen.
“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
anything. He 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.
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 exactly 19 months I left Zen Center to go back to school. The
Zen Center on Page Street was a trip and a half. Sitting zazen was
a strenuous exercise that required every milligram of effort I could
ask of myself, but it taught me discipline and dedication. I have
only good things to say about the adventure. One weekend in April, 1979
someone from the Center drove me from my housing co-op at Berkeley and I
hauled myself up the stairs where I sat in my green fabric wheelchair and
took my vows to become a lay-ordained Buddhist. The practice has suited me
well in the years since.
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. I realized that Ohio was a good place
to be from. 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.
Sub-specialty, 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 buses 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 AT & T, 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.
...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 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 power plays any part in the matter, I'll
be here. When she was born, I made silent
vows. So I have promises to keep, and many miles to go before I sleep.