CHAPTER 2 - THE FIRST DAYS OF THERAPY

I remember the first day in the rehab hospital - I had about five roommates . I hadn't even gotten settled when the heart nonsense happened . When that was over they transferred me to the stroke floor and waited . When I showed no sign of movement they decided to treat me like a 'high quad' and moved me to the spinal cord injury unit. All of the moving was very hard on me - just as I would start to get settled they would move me. They also hid their thoughts from me and tried to tell me that I was being moved because I was 'improving '. They took Jane into a room full of doctors and told her that , in their professional opinion , I would never move and her best bet was to pump me full of anti-depressants and stick me in an institution , and soon. Well, that was the wrong thing to say to Jane . She told them she didn't care how many degrees they had, that I was young and they had no right to jump to conclusions. They acted like she was just a grieving spouse , so she stormed out of the room.

It wasn't too long before I proved the doctors wrong. On my birthday , October 10. I moved my left index finger . Jane said it was the best birthday present I could have given her. They tried to move me back to the stroke floor , but we said we were done moving . It was not long before my six year old taught me how to wink. He was very persistent and I told him I did it to get him out of my face . Winking may not sound like much , but it was huge. To this day I wink when I need a scratch, and to indicate the end of a word on my board . But back to my finger . My speech therapist immediately recognized the significance of my finger moving and began to train me to click a mouse. After I learned to click a mouse , the speech therapist hooked me up to a special computer . By now I had a little control over my neck. They put a reflective dot on my glasses and put a laser device on the computer . It reflected off of my dot, so that my head movement moved the mouse. The computer had an on-screen keyboard , so I could point at a letter and then click. In this way I could slowly spell out words. I still do it that way. I just need someone to set me up and then stay close to make constant adjustments . But I digress . After she got me set up, the speech therapist asked me what I had to say. She was really trying to see if I was coherent . I decided to speak German. When she saw it she pulled Jane aside and told her I was addled . My wife figured I was up to something and asked to see it . She recognized German , and said ,'He is fine .' The speech therapist almost killed me. I had a good laugh. You see, I was so bored , that for some distraction I would play with people's minds . Eventually some old friends hooked me up so I could email / surf the web. And write down my thoughts .

When I first got to Rehab I was extremely vulnerable because I could not even move my head to bump a call switch for the nurses . Because I could feel everything, but move nothing , the choice was to have someone sit by me all night or just get used to lying there in pain, unable to sleep. No one could stay all night, so my parents hired someone to sit by me and adjust me. They were from an agency , charged an arm and a leg, and used to fall asleep and keep me awake with their snoring . I quickly learned how to bump the call light so we didn't need them.

One of the first things they did was to try to increase my sitting time. I got up to three hours . They said if I got to five they would take me to see James Bond. I went with an old movie group called Men's ACtion FIlms , or MACFI. We had formed the group to protest our wive's book club. e specialized in action films with no plot, like James Bond. Basically it as boy's night out. We elected everyone Mr. President , and started every evening with a ritual meal at a Mexican restaurant with plenty of margaritas . Another group I used to belong to used to take my old MG in the Los Altos Christmas parade with a bunch of kids . After my stroke they used my car and dedicated their float to me. It was touching .

Let's see, what else? Communication was a constant challenge. Since I had a nasty bite reflex, and we were afraid I would break a glass thermometer , we put up a sign that said 'Axillary-underarm- temperature only' for when Jane went home . Trouble is , many nurses can't , or don't read. Often they would wake me up and try to shove a glass thermometer in my mouth . I would clamp my mouth shut as best I could and shake my head. Luckily , nothing bad ever happened . Another thing was the TV. Because it was so hard to communicate with the nurses , I used to have my wife pick a channel for the next morning and leave the tv on all night so I would not miss the program . I also had her put the clock where I could see it and wore glasses all night so I could count the minutes until dawn. I felt like a very primitive man, or an animal who cannot speak . The only constant was the rising sun; I used to know to the minute when it would rise. it caused me to think about primitive man, before we had developed a way to communicate about other cultures and religions. The only constant they had, were the heavenly bodies. Hence many early structureS, like Stonehenge, reflect this . In many ways, I was a primitive man.



People often ask if my determination drove my early therapy successes. I don't think so, primarily because that which connects the source of determination, the brain, to my body; IE the brainstem, was badly damaged. In fact, I used to press my body so hard, that it would just pass out. Determination did not matter after my body passed out.





Early on, I had a bout of extreme frustration . I was trying to spell 'no' and everyone kept saying 'not.' I freaked out at not even being able to say 'no' and started scaring everyone . In retrospect the whole thing was dumb, because they got my point, but for me it just demonstrated how difficult everything had become . My blood pressure went way up, and they started calling doctors . The doctors muttered something about 'bad days' and started injecting me with sedatives until I fell asleep . When I came to I realized I had learned a valuable lesson - the board always made me appear to be no smarter than the person using it, which often wasn't very smart, in many cases . If someone can't spell , for example , I can't even tell them it is their fault because to do so requires them to use the board . They just do whatever they want and ignore me. The most common thing is to add or drop words and change what I am trying to say. I never get a chance to explain because that requires the board . Spelling words is admittedly easier than reading the board, but it can't be impossible because my six year old was pretty good at it . I learned to take a different attitude ; if someone was willing to try, great . Getting impatient didn't help anyone , least of all, me.

My Dad took the news especially hard. It made him even more nervous, and he is always jittery anyway . One day he got frustrated with our doctor and backed her up against a wall and let her know in no uncertain terms what he thought she should do. When poor Jane got back she had to calm everyone down . I was oblivious to it because they did it outside . Generally , he was very helpful , but he had his moments .

My roommates were my main contacts with people , and they varied a lot . The first one had bowel problems , and I was glad my tracheotomy kept me from being able to smell. The second one was a quadriplegic doctor who got high and ran off the road and broke his neck . He kept yelling at his mother , who was about his only visitor . The third guy was a young fellow who broke his back trying to run over a Suburban with his motorcycle . He provided a lot of comic relief . I never thought I would be envious of someone who 'only ' broke their back, but I was. Everything worked but his legs . My last roommate was an overweight guy who broke his neck in a car accident . He went on to regain all function. He also had bowel problems . Another thing I remember about the hospital were showers , which they gave you every week whether you needed one or not . They would put you on a gurney, prone , and wheel you into a special room. It was always something that marked the passage of time, and meant that the insurance company had approved another week in the hospital . Yippee.

Two groups I really liked at the rehab hospital were the respiratory therapists , who got me to breathe on my own, and the nurses , who learned to take care of me . There were a few exceptions . One was a nurse we will call Ding Dong. The other nurses were waiting for her to kill someone . She meant well but wasn't the brightest bulb in the box. One day a guy named Jack who was also in a wheelchair, decided to go get a haircut with me. Ding Dong started out pushing me, but Jane noticed how nervous she was and took over. Ding Dong pushed Jack. We got there ok and got haircuts . On the way back, Ding Dong hit a pothole and, because she didn't strap him in , dumped Jack in the street, splitting open his head. She then tried to turn him over and almost broke his arm. Lucky for him he could talk and he told her to leave him alone . Someone called an ambulance and they took him to the ER. The next day she took me for a walk and didn't strap me in either. I tried to signal her but Brainchild just smiled at me. Luckily nothing happened , but imagine how helpless I felt! I had someone call Jane and she could tell from my screams something was wrong. She came right away and, when she heard what happened she asked that Ding Dong never be assigned to me again. I thought Ding Dong should be arrested . Instead they promoted her.

So you think you have good insurance? So did I. It turns out medical insurance is not really insurance in the normal sense of the word at all. They don't cover all the costs of an incident, only those until you qualify for Medicare or stop paying 'premiums .' And watch the DME cap. Our policy wouldn't even cover my wheelchair , much less anything else that was considered DME . Insurance companies also like to play a game with you. They announce that your treatment is no longer 'medically necessary' and try to send you home . This started almost as soon as we entered the rehab hospital . Luckily , Jane was a very good advocate ; otherwise I was completely at their mercy . The upshot of all of this nonsense was we never knew when the insurance would end - they wouldn't disclose what 'medically necessary ' was . I can only imagine what an HMO is like! This went on for two years and made our lives highly unpredictable . I learned that the hospital cared a lot more about my insurance than they did about my health . When it finally DID come time to go home , they were all concerned about the insurance company and kept lying to me about the date and constantly moving it up to please the insurance company . We hired a lawyer , but he said that unless the doctors and therapists backed you , it was a lost cause . The doctors knew where their bread was buttered and tried to send me home. The therapists talked out of both sides of their mouths , telling me I was doing well but trying to make the doctors happy by ending therapy . I decided that the only true form of medical insurance is a big portfolio ! When they finally kicked me out , they hadn't even made sure I had time to get a hospital bed at home ! The whole thing was a joke. I think part, if not all, of the blame lies with the hospital . They kept trying to send me home , sick and vulnerable as I was , and blamed the insurance company . After we went to Montana I learned that this was just b.s. The same insurance company covered me for two more years , and I got to know my case manager via email - she was a wonderful person .

One of the funnier things that happened was when my six year old pretended like he had a stroke in front of the doctors . He lay motionless in bed and raised his eyes , the signal I use when I want the Board to spell something . The doctors didn't know what to say. Anything that made me laugh was welcome . One friend brought me a Snowman that sang 'Frosty ' and danced . We used to get all the nurses in my room and, while I sat on the commode chair in all my glory , we would all sing along . Another favorite was a little 'pull my finger ' doll that made disgusting noises when you obliged . Let's just say hospital humor is weird anyway and it doesn't take much to push mine over the edge . Add to that the fact that I can't control my emotions- I laughed /cried fifty times /day-and that was the picture . Progress continued , but very slowly . I remember how I painted a pot for Jane in therapy and how difficult it was . Mentally this was very hard for me because I had been so handy. Sometime in there I began to move all my limbs -not much , but enough to know that everything was still connected . That was encouraging .

The hospital became my home . Every day, Jane would drop off the kids at school, and then arrive at the hospital with my Mom before noon. When she got there, my world changed . I didn't have enough confidence in the nurses to sit in my chair in case I needed adjustments . Even if they could use the communication board, they often didn't understand basic English and so I had to sit there in pain. I finally just refused to sit in the chair without my family around . I also found that I didn't like groups because I couldn't participate - a big change for me. Finally the day came to leave the hospital . They had kept moving up the date, so we were not ready. They even tried to make me leave early by asking ,' don't you want to be home by Christmas ?' My emotions were all screwed up, so that made me emotional , but Jane wouldn't have any part of it .

We finally left my home of almost four months in a special wheelchair cab. It was great to be home, which luckily was built on one level . The first night Jane shut off my TV , took off my glasses, didn't give me my sleeping pill, and said goodnight . It was extremely quiet , and I had a great night's sleep . And in the morning my family was already there, so I didn't have to deal with the nurses . I can now say, four years later , that I much prefer to be at home with my family. But that wasn't the case at first ...