Friday, July 14, 2006


Things actually started off pretty well. The local paper did a story on a patient each year, and this time they chose me. The reporter was very nice and the interview lasted three hours. The hospital, as would be expected, sent a muckity-muck in a suit to make sure everything went smoothly and to take some credit. It was the only time we would ever see him. All in all, it was great fun and a nice distraction. We were driving in the van one day and caught a glimpse of our picture on the front page. The reporter did a very nice job. I made a point of rubbing it in to my daughter, who loves publicity. People in restaurants even recognized me - I was famous for a day in Kalispell, Montana!

Another thing that was nice there was the proximity to the ski runs. Steven would take a ski-shuttle every weekend - it was only a few minutes away. It began to get cold in September and soon it began to snow. One day it hit -30 F and Jane called to see if the kids' school was closed. They laughed at her. We had sent the kids to public schools because there wasn't really anything else available, and in Big Fork that meant one campus and one bus for all four kids. The grade school was pretty good, and had advanced programs our two little kids got into. The High School was a big letdown - the first thing they told the boys was that C's were good grades. Basically, there were a few good students but many people were just getting by - not a great environment for teenage boys with a powerless father and an overworked mother, and no support group of old friends.

We decided to get Nick out of this environment so he could still get into the College Preparatory school in the Bay Area. Although the original family that had promised to take Nick backed down when they realized we were actually going to take them up on it, another family stepped up. At first everything was great. The family that backed down at least tried to help Nick academically. However, when Nick found out this lady was somehow getting all of his grades, he said something to her. What it was, I don't know because no one ever got me involved, but it must have upset her because she decided no one from her family would ever talk to our family again. Big help she was! And her family, who had been pretty close to us, didn't have any guts, either. Hard times really bring out people's true colors. What we needed was help with a bewildered boy whose world had been torn apart. Instead they took the easy way out and ran the other way. The family that did take him in found him somewhat confused (no surprise after what he had been through) and difficult to talk to, but they managed to keep him the whole time and kept open communications with us.

Meanwhile, therapy was going pretty well. Probably the biggest thing that happened was I gained some volitional control over my diaphragm so that I could make a quiet noise when asked. After awhile the people close to me began to be able to interpret these as words. I learned, for example, to say, "I love you Jane," for the first time. That scored some points with her! It also made me feel a bit more human.

That fall, we had found out we were entitled to another $15,000 of California state disability, but the state had kept it because we had not known to fill out some piece of paper (while we were occupied fighting not to get discharged early). They said to get it, we would have to appear in court in San Jose. Luckily the judge let us call in. This must happen a lot, because the judge was very sympathetic, gave us the money and wished us well. A few days later we got another nice surprise - Social Security said they screwed up and had forgotten to pay us $20,000 for our kids, and did. Just as we were starting to feel like Christmas had come early, our disability company wrote us a nasty little letter and said they were entitled to the $35,000 due to some fine print in their policy, and oh, by the way, if we did not mail them the whole amount in thirty days they would stop my checks. Luckily, we lived pretty simply and still had most of the money to mail them. It was no fun.

My link with the outside world, including California, was email (that is still the case). There are a lot of disadvantages to using email to talk, but it is better than being a complete vegetable. Often people don't answer, but there is something about being able to ask that is better than the alternative. I decided that speech is the main thing that separates us from other forms of life. Email became my escape and separate little world; when my computer broke I overreacted, feeling lost and isolated - often it was the only way I could express complex thoughts. Without it I just dropped off everyone's radar screen; they might have thought of me, but I never knew it. I even learned to slowly draw simple diagrams on Power Point (with assistance). It may not sound like much, but it was huge. A picture is worth a thousand words, especially when you have to use a letter board. That is no fun for either party.

Speaking of no fun brings up the subject of lability (not liability). Lability is caused when the stroke takes away your emotional control. I used to cry or laugh fifty times a day, including a few times a day over having left my life in California. It is exhausting for everyone, including the person crying or laughing. Sometimes, however, it can be pretty funny. Once we were at our kids' talent show. A little girl was bravely manglng the 'Star Spangled Banner, ' and everyone was pretending it was pretty good, as they often do at such events (I used to misquote Winston Churchill and say that ' Never have so many clapped so long for so little '). It built up in me until I completely lost it, shreiking hysterically at the top of my lungs in front of five hundred people. The more I tried to stop, the louder I got. Everyone turned around to see a guy in a wheelchair, with his whole family trying to stuff towels in his mouth. They finally gave up and dragged me into the lobby, where I eventually calmed down. Poor little girl was probably scarred for life... I actually felt really bad about it because I couldn't help it. A physician at the clinic there discovered that a low dose of Prozac actually helped me control my emotions (although not completely). That helped everybody (although it was not as funny ). For some reason, other anti-depressants did not.

I really missed California, but not for the obvious reasons (weather, etc. ). It was in not knowing anyone who knew how I had been. I had never been shy before about moving to new places, but this time it was different, because people I met hadn't known me before my stroke. They only knew me as a mute quadriplegic. I will never forget a nurse who had taken care of me there who later saw me in the cafeteria. She came towards me waving her arms and shouting, "Henry, do you remember me? " I had to spell on the board, " I am neither deaf nor stupid. Yes, I remember you!" No one there knew me as I had been, and often ignored me. They would say "Hi!" to Jane and try not to look at me. Some people who used email got to know me a little, but it still was not the same. I thought about my old friends everyday.

About this time we decided to rent out our California house. Some friends of ours fixed it up and we put it on the market. We rented it to an unmarried couple. It soon became obvious that she liked the house more than he did. In fact, she loved it- so much so that they were a little possessive. One day he emailed to ask if they could paint the walls. When I said I would think about it, he called Jane and said there was nothing to think about - they had already done it. Then they asked us to empty the last bedroom so they could use it. We reluctantly agreed - finding tenants from Montana was not easy. They stored most of our stuff, but managed to discard a few personal items, like the fly fishing rods I had made by hand. My life was so jumbled up, I was kind of numb.

The first winter ended on a deja vu moment. Around March, we asked the landlord if we could stay there for the summer, because we wanted plenty of time if we had to find another place. He said, "Sure." Then in late May he had the rental company tell us he had changed his mind. His family had decided to spend a week there, as had his relatives, and they asked us to move out for the summer. Once again, we were looking for a place at the worst possible time of the year.


Post a Comment

<< Home