CHAPTER 17 WHAT DOES 'YOU' MEAN - THE MENTAL VERSUS THE PHYSICAL

My body changed in a few hours, but my mind still has not fully accepted it. I still can move normally in my dreams, for example. A really bizarre thing happens when an itch wakes me up. I start out in the dream state, where everything is functional. I think to myself, just reach up there and scratch it. There is confusion when nothing happens. Then the logical part of my brain begins to wake up and tries to convince the dream side I am paralyzed. Eventually I wake up and realize I can't scratch the itch.

The first time this happened, it freaked me out. I thought I was going crazy. After it kept happening, though, with no lasting effect, I realized it must just be how the brain works - in a dream state I revert to a 'normal' me. I also see the world as if I can still effect change, but, of course, I cannot. It has been four years - I wonder if my mind will ever come to grips with what happened. In some ways, I hope it never does. At least I can still run in my dreams.

In the awake state, your body is no longer part of 'you' in the normal sense, because you can't control it. When someone says "Move your leg," they might as well be talking about the chair leg across the room - it feels to be as much a part of you as the leg that happens to be attached to your body. Perhaps the worst thing I can do is move something once when asked, especially under special circumstances, like therapy. The reason is that people then think you can always do it and think that if they yell at you you will remember how. Certain things are very fickle, and only work sporadically, beyond your control. An example for me is opening my mouth so someone can brush my teeth. Sometimes I can and sometimes I can't. This gives the impression that when I don't, it is because I don't want to. Every morning. , I get yelled at to open my mouth, as if I don't know to try. It is maddening, but I can't do anything.

Handicapped people are often seen as selfish with their many demands, but it is more complicated than that. Since I can't control my body, I often ask for things for it because I know it will cause trouble if I don't. For example, I may feel my legs about to straighten and ask for a blanket because I know how much work it creates when they stiffen. I may even become impatient if the person takes their time. What I am really trying to do is save them more trouble later, almost as if the legs aren't mine but I know what will happen if they don't cover them RIGHT NOW. I am perceived as being selfish because I can't explain all of this and because the legs are perceived as being part of me. They are not, I am only trying to make everyone's life easier. Sometimes it is better to keep quiet than to be perceived as selfish, and just let what happens happen. Since all I can do without help is lie in bed and eventually die from pneumonia, I NEED others to help me get up and do everything for me, and that is eventually viewed as selfish. Never mind what I WANT to help with - I can't.

Selfishness cuts both ways. Someone that stops feeding me to talk about something trivial may think nothing of it. Yet to me it appears very selfish - they dangle delisciuos food in front of a hungry man because THEY want to yap. It comes down to basic needs, and most people take care of their own needs first, regardless of how much pain I might be in.

I put a new standard for selfishness on others, too, probably unfairly. I need so much help, that unless someone constantly pays attention to what my physical body needs, I often suffer. They appear to be selfish to me, although all they are just doing what they want to do. Some people have a knack for knowing what I need. Women are more likely to do this than men, although some men do it very well. People trained in healthcare are most likely to help, because they know what I'm going through, but even they don't all get it. Kids can actually be very observant, but they often have short attention spans. No one devotes time to me consistently like Jane, my wife. I think we are both mad that it happened and often think of happier times together. What is most frustrating is the lack of choice we had. If you ever start to take life for granted, don't. It can change in a second. Treasure every minute.

CHAPTER 16 RELATIONSHIPS

WIFE

What can I say? Not only did my wife save my life but she is the one who keeps me going now. It takes a special kind of person to live with you twenty four hours a day, and to stay positive most of the time. We always had a pretty good relationship by any objective measure but nothing tests the promise 'Til death do us part' like being put in a crucible like this. The odds aren't good - about ninety five percent of marriages to people who get quadriplegia don't make it. I got the feeling that the people in the hospital in San Jose were just waiting for Jane to walk out on me. That is the problem with thinking you know everything - they didn't themselves the opportunity to learn anything new. They kept sending in a shrink to talk to me and I think she kept wondering why I didn't need her - she finally went away. The hospital in Montana was better - they told the local paper we would make a good Thanksgiving story. That kind of thing keeps us going because it feels good to share our story with other people.

We have often debated who has it worse - the person trapped in their body or the one left to care for them. The truth is, we both have it bad, but whereas I am stuck in this nightmare, she is not. That fact makes her plight much worse. She could leave this nightmare anytime, but doesn't. I am convinced that she greatly prolongs my life, and that I would soon die without her. I need constant adjustments to sit in my chair, and any nursing home would just leave me in bed, where I would soon get pneumonia because lying down does that to you. No one besides Jane would take the time to constantly adjust me. It's not that people don't care, they are just too consumed with their own lives to do anything.

People often complain about euthanasia. It is pretty obvious to me that passive euthanasia not only exists but is well accepted by our society. I have watched other young people have strokes that were not as bad as mine be left to die because their was no one in their life like Jane who cared enough to help them. Let's face it - when I was comatose I would have died without a strong advocate like jane. The doctors even told her I would be better off dead, and then tried to put me in a nursing home to die of neglect. Everyone is concerned at first, but as the years pass, only my wife stays by my side to take care of me. People are opposed to active euthanasia because it requires action on their part and implicates THEM; however they are perfectly happy to let someone die of neglect and say it is just 'nature taking its course,' even though neglect is usually more painful than chemical euthanasia. I am not defending chemical euthanasia; I am just annoyed by all of the hypocrisy.

What really brought it all home to me, was when a quadriplegic I had gotten to know died of pneumonia. I told his sister, "Look what I have to look forward to." Her reaction was telling. Instead of telling me how to avoid it, she said, "Oh, I hear it is not so bad." In other words, nobody will care enough to keep you well, so just accept it." Hopefully it won't be like that - Jane and I are fighters.

Kids

Trying to raise kids as a mute quadriplegic is a joke. The older boys were especially vulnerable; given that we tore their worlds apart just as they were becoming teenagers and needed a father. Talking to teenagers with the Board does not work - they just put it down and walk away if you say something they don't like. It all fell on Jane, like everything else, and she was too overworked to really pay attention to them. We needed some time to figure everything out - but we didn't get it. When I stood up in Montana and we decided to stay there, Steve was one week from going to the high school of his dreams. In Montana, they had to learn limits from the police instead - luckily they didn't get in any real trouble, just dumb stuff.

The younger two kids were still pretty adaptable. I felt terrible because they essentially lost their father, almost before they could remember me. I also had really enjoyed being a Dad and felt like we all had been cheated. They learned to take care of me like a baby. One thing I never have liked is how much power over me the Board gives them. If they don't want to hear what I'm saying, they take away the Board. Even speech computers can be turned off. It is what makes trying to be a parent so hard for me - especially when Jane is gone. And nobody tried, or probably could have, to help us with parenting. It is just tough luck when a stroke like mine occurs - no one else picks up the pieces, at least not for very long. It is up to the family to work things out. We barely made it. What really turned it around for us was returning to familiar friends and places in California. That is not a knock on Montana -we just had a huge support group in California. It takes a lot of people helping to make a difference.

Friends

It takes a tragedy to really find out who your friends are. Even with that, what really matters is to have LOTS of friends, because everyone alone has their limits. A lot of people treated me like I had died, paying their respects and then disappearing. When I lived, it was amazing to us how few people actually seemed to care. In a way I felt like Tom Sawyer listening to my own obituaries - it was fun, but when I lived it was somehow anti-climatic.

We found that, at first, the people we had been the closest to most recently did the most for us. Then they must have gotten burned out, because after awhile we stopped hearing from them regularly. I think everyone is just busy. Older friends started to reappear and take up the slack. Over time, I find that the people who help the most aren't necessarily your 'best' friends, or the most 'religious,' or even the closest relatives. It is the people with the most energy who find the time to actually do something. Everyone else just talks. Luckily we have a lot of friends.

Most people express concern but don't actually DO anything. Some actually help, either her by giving time or money. The help usually comes from unexpected places. People who, despite declaring themselves to be good friends, talk the most about how much money they have, are least likely to help significantly with either time or money. The ability to empathize with your plight enough to offer actual help is rare indeed.

Some people actually treat you badly. Luckily, this is pretty rare. It does catch you off guard and make you not trust anybody. Few individuals have distinguished themselves by coming immediately to mind. One was a good friend of Jane's for many years. When I got sick, she offered to watch the kids. This was the case when I had my definitive CATscan. The doctors wanted Jane there in case they needed to do somethinG. Right before the procedure, she dropped the kids off with Jane, saying she had to do something. Never mind that my life might have been in the balance. Jane had no choice but to take them home - they weren't allowed to stay. We never said anything overtly, but we stopped encouraging her friendship and eventually she went away. Another 'friend' really shocked us. When we were trying to decide whether to stay in Montana, she offered to take in Nick in case we stayed past Christmas, so he could graduate with his class. Nick was best friends with her son. In the event, when she realized we were actually going to take her up on it, she changed her mind and we had to scramble and find someone else. She then decided she was going to be in charge of Nick's academics. She somehow managed to get all of his papers and began badgering him if he didn't get all A's. He didn't need this and said something to her. What he said, we don't know because she never told us. She just decided that nobody from her family would ever talk to anyone from our family again. Her gutless family agreed. We decided that other people were much better to spend time with and never tried to figure out what happened. Luckily, most people were at least encouraging and saw us through the most difficult times.

One more thing about friends. There must be something about being disabled that makes people promise you things they never deliver, just try to make you happy. We were promised tuition for our kids, help with my salary, and many other things, none of which materialized. It has become such a pattern that now, when people promise us things, we just smile and thank them, and don't even pay much attention to what they say. Every now and then someone actually delivers, and at that point we are truly grateful. I don't know what it is, but it took some getting used to.

Nurses

The nurses who took care of me were interesting because they didn't know me beforehand and they were the first group to treat me like an invalid. Everyone else, including me, was in shock, and waiting for the nightmare to end. The nurses just treated me like another mute quadriplegic, and assumed that my wife would leave me and my life would be hell from now on, like they had seen so many times before. At first I was confused, but soon learned to appreciate their experience.