Monday, July 03, 2006


The first thing we had to do was hire a caregiver, because Jane is half my weight and had no experience taking care of a quadriplegic. We didn't know anything about hiring caregivers, so we had a friend put up flyers around campus asking if any student wanted free room and board, and a job. We got a call from a pre-med student, and it sounded good so we hired her. The first thing she and Jane did was drop me on the floor. To my surprise, the boys were able to pick me up and put me back in bed. I was unhurt. The caregiver would take care of me in the morning, go to school, and then put me in bed at night. This included cleaning and dressing my tracheotomy, which I still had. The doctor lied to me when she promised she would not send me home with a tracheotomy. Anyway, after a few weeks the caregiver started to complain that our ad had been misleading. That may have been true - we never saw the ad. In sny event, she left after three months.

Meanwhile, the outpatient therapy started. This required us to go to the hospital in San Jose three times a week. Since we didn't yet have our own wheelchair van, we had to take OUTREACH. OUTREACH is a service provided by Santa Clara County, and in principle is a great idea . For almost no cost, they will pick up a wheelchair and take you anywhere in the County. The only problems are; a> your family can't come and b> it is so popular that everyone uses it and they are often late. Once we missed a van because a medical exam ran late, and we had to wait three hours for the next one. We eventually did find our own van; it was custom built by a doctor for his wife, who died before she could use it. He donated it to a charity who sold it to a dealer. It only had 1500 miles and was half the price of a new van. It has made a huge difference in our lives. It holds our whole family, and the rear seat fold into a bed, so it becomes like our own private ambulance, a feature that unfortunately has come in handy more than once.

After I was in therapy awhile, my left knee began to hurt when I was in the standing frame. I just ignored the pain, until it made me pass out. They did an ultrasound, and the technician's reaction scared me. She said, "There is a strange mass. You need to see a doctor right away." I, of course, thought the worst. The doctor ordered an MRI. I remember crying as they did it, thinking, "This is all we need." Jane said, "Don't freak out until they find something bad." It turned out to be a lump caused by a hemorrhage, which the doctor wanted to surgically remove. However, by the time he scheduled surgery it resolved itself. Jane was right again; my worries had been groundless.

I slowly began to get movement back. Not much, but everything helps. I began to raise my left hand. I remember being able to pick my own nose, and my Mom saying, " Good, Henry! " There is a first time for everything! My neck was getting very strong, and typing was a bit easier. I still couldn't do anything for myself, a fact that continually frustrated me. I finally did get to go 'swimming ,' and it was anti-climatic. First a special lift lowered me into the water, then they put foam noodles under me so I floated. I was nervous because when my head went under by accident, I could not control my breathing and inhaled water; and I was always worried about going to the bathroom. Worst of all, the lack of gravity was supposed to make me able to move more. It did not, so all of the trouble didn't seem worthwhile.

One thing which did get better was my breathing. I think in the end the tracheotomy was causing as much trouble as it was helping. By now we had asked for a different doctor, and after awhile he had it removed. I will never forget that day - at last I could breathe on my own! Taking it out was easy-they just pulled it out and put tape over the hole, or stoma. It grew over in a couple days, and that was it! It was one less thing for Jane to keep clean. To this day, when I am having a bad day, I remind myself that at least I can breathe on my own, something that many people can't do. Some solace, isn't it?

Our financial picture began to come into focus as it became clear I wasn't going to be able to work. We did have some disability insurance but not enough to completely replace my salary. I woke up from my coma to learn that I couldn't work, I had gotten a big pay cut, and would get no more bonuses and no more raises, not even to cover inflation, ever, and our four kids were still in grade school. Fortunately, friends and family jumped in. While I was still in a coma they raised a fund to help us until we could rachet down our lifestyle, which we did. When the company I worked for - - realized I wasn't going to recover, they gave me a generous termination package. After that many, many people have helped us out. Our medical costs, even with good insurance, have been staggering, but someone always seems to come through. We also used some of the money we had saved for college tuition; we will likely qualify for financial aid now. After living through all of this, I changed. I used to be the consummate planner, but now I just take things hour by hour.

About this time my Mom finally went back to her life in Missouri. She had been a tremendous help and a calming influence on the kids. Honestly, I didn't know how we would make it without her, even though she herself was disabled - her left arm was paralyzed from a car accident which almost killed her two years to the day before my stroke. Somehow Jane adjusted and we made it. During this time I was able to do something nice for Jane, because she had helped me so much. Her fortieth birthday was coming up, and I wanted to make it special. Using my computer and email, I arranged a surprise party with a few friends. I also managed to have a friend buy Jane an inexpensive diamond necklace. Now the trick was to get her to drive me to her own surprise party. We told her it was a party for our goddaughter, and she fell for it. She drove me there dressed for a birthday party. The party was a blast-a bunch of guys carried me up some stairs to get me in the house. Needless to say, Jane was floored. I even impressed myself.

Another thing I did was paint a flowerpot blue for Jane. Solid blue. It was incredibly hard, and took several weeks. It really brought home to me how paralyzed I was-before it wouldn't have taken me five minutes. I had to grasp the brush in my left hand. A therapist would then bring the paint up until the brush was wet. He would then hold the pot next to the brush, which I was able to wiggle slightly. In this way we slowly covered the pot. Mentally, I knew exactly what to do, but physically I could not. We still have that pot.

The difference between the mental and the physical was something I constantly struggled with. My body had been paralyzed in a moment; for my mind to come to grips with it would take years. For a long time I kept thinking the whole thing was a dream and I would wake up soon. My dreams were about a healthy Henry, and I learned to hate waking up paralyzed again. What really brought it all together was my side yard. I had been landscaping it right before my stroke. When I got home, I wouldn't give up on is it. I slowly typed out directions for my kids and my dad. To my surprise, they didn't read them carefully, when they read them at all. It was a good lesson, one that is true to this day. People don't like to be told what to do, and writing is a terrible medium for urgency. I learned another painful truth -what I used to do in a few minutes now could take weeks, if it got done at all. First, I had to find someone actually interested in doing it. Then, I had to get the parts, which was not trivial. Then, I had to communicate how to do it. Finally, I had to watch it being done, because very few people follow directions. I soon learned to take what I could get and be happy. Not easy for a perfectionist, but the other choice was to do nothing.

TV is often my only companion, because it only requires vision and hearing, which were two of the few things I still had. It is completely passive, which any mother can tell you. I soon learned that anything gets old if you watch it all day, every day, even football. At first I watched food shows, probably because I couldn't eat. Later on I watched The History Channel because it is often interesting, it took a couple years before it started repeating and you actually have to think when you watch it. Game shows that make you think also hold my attention; anything that exercises the mind. Everyone says my brain was not affected; everyone that is, except my wife, when I disagree with her!

One thing about my wife. She is, in her own words, 'mechanically retarded,' I guess it is my own fault for always doing everything myself. I used to hear regularly, " This ____ is a piece of junk!" That usually meant it either was not turned on or was not plugged in. At first, it drove me crazy. Then, she got better and I got realistic -she had enough to do - and started hiring handymen for everything.

About this time we made real progress with my computer. A friend figured out that my eyetracker would work with any computer, and the $13,000 computer the hospital recommended was overkill. Some guys from work ordered a regular laptop and we were in business. It takes me forever to type, and I still need someone to make constant adjustments, but hey, it's communication. Without it I would just about be a vegetable to everyone but my family.

Meanwhile, the therapists kept talking out of both sides of their mouths - they would tell me I was doing great while at the same time reducing therapy. It finally came time to fit me for my permanent wheelchair. We had never bought a wheelchair before, so we trusted their expertise. Big mistake. It cost me $4200 and reduced my sitting time from twelve hours to four - it was very painful and had tiny little front wheels - basically, it was the wrong chair. Because I had by then moved to Montana - more on this later - they refused to help me. I learned through this experience that about 70% of the people express concern but don't do anything, 20% actually do something, and 10% actually see you as easy prey. I learned to keep my guard up.

Speaking of keeping your guard up. When our first caregiver left, we asked around the hospital if anyone knew of one. My old physical therapist said she knew of a guy at her church who might do it. Since he was 6'2" and 250 lbs. and would be living with us, we did a background check. He came out clean so we hired him. At first, he was great - he was strong enough to lift me by himself, and was a good cook. Then he got a girlfriend who got him into drugs. My six year old son Mike called it - he told Keith, "You take my parent's money and drive off. You are nothing but lazy! They end up putting people like you in jail!" He should be a prophet. We had always let Keith drive our Tahoe, and he began coming in late and sleeping in the driveway - not a good sign. One day he was hit from behind. The other guy paid us, but who had time to get it fixed? Then my brother from Montana started calling, begging us to come to his hospital. He was converting his garage into a guesthouse, and he said we could stay there. We agreed to come for two weeks, to get a break. Keith, the caregiver, agreed to come along. The day before we went, he stole my Tahoe and left. We started finding parking tickets he had gotten - he liked to park in handicapped parking and then hide the tickets, which they traced to us. Anyway, we were off to a strange city with no caregiver and a stolen car to deal with ...


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