The steroids had not worked and I continued my decline. I walked everywhere with one hand reaching for or touching a wall. After that terrible fall in the parking lot, I parked close to the entrance and walked in along the front of the building with one hand on the wall. .... Meanwhile, my house got dirtier and my flowers were replaced with bare dirt as workmen raked away all my ground cover, leaving my yard as barren as Houston. No amount of money could get these people to care for and clean my house and yard as I had. So-called "handy men" were the worst. They overcharged for shoddy work and always claimed they could solve all my problems--for a price. 1988-91

I went to Dr. Baskin's office. He showed me x-rays from the mylogram of my neck that were shocking. My cervical spine was no longer straight, but took on an S-shape with the vertebrae crushed together, showing many stress fractures. ....

He summoned his nurse and said, "Look! It's only two millimeters across!" Two millimeters from cutting all messages from my brain to my body. Two, maybe only one from death. I didn't know why I was standing there, feeling normal, or as normal as I could remember, rather than lying comatose, my life supported only by machines. 1992

When I finally got an appointment, the counselor, Kassandra Humphress, was a pleasant surprise. Vivacious and engaging, she promised to help me lay out a program that would help me overcome the transition from a totally independent working lifestyle to one that was dependent on others for support. She said that TRC could help me pay for an electric wheelchair and lift, supplementing what my insurance would cover, help me get started with six month's support for home health care, and pay for modifications to my home needed to help me go to and return from work. Similar assistance was available for modification of a van, if I needed one. 1992

I didn't want some nurse coming into my home, forcing her idea of a healthy lifestyle on me, and have to pay her a high wage to do it too. On the other hand, hiring minimum-wage workers opened my home to people who may have little understanding of the life of a professional educator and researcher. In the worst case, I might hire criminals who would steal from me. 1992

One more time, I would head back to the bathroom to urinate. The twenty-mile ride into work had become a fight to get to a restroom before I had an accident. Fueled by gas caused by a poorly functioning bowel, liquid stored from the night before, muscle spasms, and tension caused by my inability to move quickly and handle my clothes, my mornings consisted of periods of extreme anxiety as I tried to get to where I could void, followed by periods of relative calm after I had voided, sometimes only a small amount, followed by periods of contemplation of when and where I would have to stop again. ....

Realizing that help would not come in time, and if it did, they couldn't get in the locked stall easily, I had to do something before my straining, spasming muscles gave out and I'd go down. Pushing thoughts from my mind of how they would find me, somehow, I summoned the strength to pull my right leg up along side the toilet, pushed down hard on the top of the toilet valve with my right hand, and willed my body upward until my head came out of the toilet seat and I fell to the right against the stall wall. The strength was gone from my quavering legs, but the relief I felt was immense--until I discovered that I hadn't urinated and still had to tend to that. 1992

That's where my computer came in. Starting in 1985 when we got the first Macintoshes, I stored all my work on my computer. ..., I built a network of computers and printers with file sharing and other versatility that was the envy of other departments. I got a plotter, a color printer and accompanying scanner which enabled us to produce color presentations and graphics for publications. .... This caused a dramatic change in the way I conducted my work. In 1982, I wrote everything out in a characteristic lettering style used by engineers and architects and then had secretaries type it. Once a secretary got used to my writing and formatting style, they did quite well. But most work, especially that using tables or other graphics, took a lot of drafts and rewrites. Now, I rarely wrote anything out by hand, relying on dictation to Jeanie for memos and my own ability to write, type, and compose spreadsheets, graphs, and other visual material into any document I created. ..., I achieved more than what was expected on a regular basis. 1986-92

When I opened the front door, he headed to my bedroom where he holed up, first in the closet, then under my dresser, shaking in fear. I got him some water and food. He drank a little, and would eat only if I put it right in front of him. He lay there for two days refusing to eat or drink any more. I didn't see any blood, but was afraid of internal injuries. So called the vet. They encouraged me to bring him in, but there was no way I could pick him up and carry him to the car. Then, he climbed the stairs to my study, and somehow leaped to my side on the couch. 1991

Everything was true. I was afraid of the idea of attendants, but not as afraid as I was of being hospitalized and made to conform. Still, attendants would be in my house and my business. If I hired a thief or bum, how could I keep them from stealing from me or abusing me? I didn't know, and what I didn't know bothered me. 1992

Actually, with the help of attendants, it was great to discover that I was freed of the worry over getting daily things done. Maria got me packed and got my wheelchair and me to the airport on time. Jazz would be well taken care of at home. What few flowers I had left would be watered. 1992

Earlier, I had direct involvement in these activities, from meeting the people involved, to planning and presenting options, to doing the required paperwork. Now, I supplied information and reviewed what was happening, and gave encouragement, but I couldn't "get out there" and get involved like before. I was named to the ADA committee, but not asked to lead it. Gradually, others took on work that I'd always done. It was the beginning of an insidious loss of faith in my ability. 1992

My hands and arms were too weak to operate the hand controls. They didn't test me on their zero-pressure steering van. They wouldn't hear of modifying my car's steering to zero-pressure. Zero-pressure steering cost about $850 installed on vans. I was not interested in buying a van just then. The economics, no matter how I looked at it, didn't justify getting rid of my old car and buying a new van. After the test, I was advised to stop driving. 1992

On weekends, it was easy to go back to sleep, but about 6:30 I'd hear the front gate slam and Jazz would come to life and run out barking. His barks would become more high-pitched as he jumped back and forth through his door and the dining room entry door first opened, then closed. "Dr. Hull! Good morning! I'm here!," she'd shout, then hurry into my room. Then, I got a call from a young man, speaking broken English, "I have a sister. She work at home sewing. She like to work for you." He said that they lived on the next street in the same block, which was nice, but I worried about whether or not this "sister" spoke English or could speak for herself. 1992

Very curious, but not in the intrusive way her brother Quoc was, Beh wanted to know everything about me. She tired quickly of the computer and started exploring my magazines and TV interests. After about two weeks working with me, we were looking through a magazine together like she liked to do, asking me questions as she went. She stopped at an ad showing two people kissing. I asked her if she liked that. She said, "Yes." and smiled at me.

I said, "Would you like a kiss?"

And she said, "Yes." 1992

Then, we stopped to see my great uncle, Roy Hull. He was recovering from his fourth bout with pneumonia since marrying Julie in 1982. At 97 he was my oldest living relative. As I sat in his wheelchair, facing him in his recliner, he stared at me and marveled at how I had come to see him in my condition. He told my father later that I was a "Miracle Man." 1993

In November, I fell transferring from the chair to my bed. I didn't want to lie on the floor all night, so I forced myself up onto the bed without help. It was sheer will and momentum. I don't know how I did it, but I did. It was the last time I ever got up by myself again. I spared myself the agony of a night on the cold floor with no way to go to the bathroom or call anyone. Jazz was no help at times like this. He either thought it was time to play or attacked whoever came to help. 1993

Finally, in March, I got an appointment. Dr. Rudy recommended that I start wearing an external catheter. The catheter fit like a condom and connected by tubing to a plastic bag hung on the inside of my leg. Malu and Beh had no trouble learning how to put it on, but it was some time before we came to a combination that worked well. 1994

I used my Lark Sierra every day that I drove. I started using MetroLift in September, 1994, and, after some brief experimentation using my portable chair, I started taking my electric wheelchair to work on those days rather than ride the Sierra. .... I averaged over three hours on the road every day I rode MetroLift. 1994

Sometime in 1994, I realized that I had finally lost touch. Everyone was an easy phone call away, but few of us would take the time to call anymore. After all those years of building bridges and friendships, I could no longer leap continents and retie knots that had unravelled with age. There was a lot of talk of the Internet, the super highway of communication, and I planned to get on it when I had a good vehicle. Still, it wasn't the same as being there and doing things with those you wanted to be with. My electric chair got me around, but the experience was still too confining, and I was bursting to travel the less trod path again. When I struggled with the kitchen, the yard, and the day-to-day, I crawled into myself and pulled in the walls. But once in a while, I pulled myself up and did something extraordinary. No matter how bad my routine got, I could still change it. In the chair, that changed. 1994

I was now in the chair from about 6:30 am to 11 PM each day. Sometimes, I just couldn't stand it any more and wanted to get up and walk away, or at least, lay down for a while when I wasn't feeling well. In bed, I could no longer turn on my side, sit up, or swing my legs over the side. If I couldn't sleep because of a problem or muscle spasms, I couldn't get up and walk around, watch TV, or read. Instead, I had to wake Beh up to turn me, rearrange my bed covers, or comfort me. If I waited, all these things passed. Sometimes it was unbearably frustrating to be that patient, especially if I had an itch and couldn't scratch it. 1995

I had an all night sleep study in September, 1996. It showed that I had sleep apnea. In the study, I stopped breathing several times in two hours, and for three minutes one time. The condition was not life-threatening, but it lowered blood oxygen, put some strain on my heart, and disrupted needed deep sleep. The cure, forcing air into my nose at up to nine atmospheres with a ventilator, appeared worse than the disease. 1996

It's safe to say that I've reached a point where I see the future differently than I did when I began writing four years ago. Now I can see the light at the end of the tunnel. The thread has not broken. Instead, it's been supported and strengthened by good fortune and the help of Beh. I still have to face operations and hospital stays and more pain and trauma before I die, but now there is hope that with support, I can live an ever more fulfilling life as I decline physically. 1997

The recent test introduction of the General Motors electric car gives hope that my chair can become an all weather electric vehicle, at least capable of getting me to and from work on a daily electric charge. Other technologies I cannot imagine will come to help me. And perhaps, a cure, a way to regenerate my lost spinal nerves. 1997

One thing is certain. The longer I live, the more likely I will benefit from technological or medical advances, as well as societal understanding. It is my firm hope that the young athlete-scholar that showed so much promise will finally realize full equality of opportunity. After a lifetime of concerted effort to act and live as normally as possible, in spite of the subtle discrimination by those who only pitied and excluded me, I feel the continued need to prove The threat of the thread is always there, just as the chance that I will get cancer, or struck by a car, or "suffer the thousand slings and arrows the flesh is heir to...." But I am no longer its slave, doomed to a downward spiral of pain and despair. Instead, I face the new century with renewed hope that I can live a full life and see the day when I am judged for my contribution and not for my overcoming. 1997

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