CHAPTER 13 THE FRUSTRATIONS OF BEING DISABLED

For a disabled person, it is never a question of IF you are frustrated, but how badly. For me, it starts every day at daybreak. We live on a high (2000') hill above Silicon Valley. The mornings in summer are crystal clear because we are above the Bay fog and smog below. I used to get up early and walk in the backyard to take in the beauty of the sunrise with a big cup of coffee. Now I still wake most days at the crack of dawn, but I have to watch what I can see through the window because I can't begin to get myself out of bed. Often times they can't get me up until mid-morning, and 3.00 P.M. is not unheard of - that is about eight or ten hours of lying there doing nothing. To pass time, when TV gets old, I have perfected the art of daydreaming.

Not being able to make my presence felt is another big source of frustration. People often just ignore me and treat me as if I were addled. They talk right around me as if I weren't there. Some try actively to take advantage of us while I am watching. That just didn't happen to me before the stroke, but it is a pretty common occurrence now. That is why I was so gratified to win with Nick in small claims court when he was rear-ended. The other guy was plain trying to take advantage of us. He made a big mistake - the judge handed him his head. And I showed Nick not to let himself get pushed around, no matter if you are a quadriplegic mute.

One of the struggles it leads to is how to be a good father and husband. Anyone who thinks you can talk to kids through a spelling board just has not tried it. Kids often don't obey when you repeat things many times; to expect them to hold up the Board while you REPEAT anything is ridiculous - you are lucky if you even get to make your point once. Once they learn, and it doesn't take them long, that they can shut you up by not getting the Board, all is lost! More than once I have asked a child to do something only to be told "No, and don't ask me for the Board." What kid wouldn't want to be able to flip a switch and shut up their Dad? When Jane is around, she often fixes things, but she is often busy or gone. What makes it worse is I have to stay on their good side so they will pick up the Board when I want to say I need food or water. Over time, you just have to let them learn things for themselves. I didn't die from my stroke, but I ceased being an active parent. The older boys, especially, lost an active father - their boyhoods ended abruptly when I had my stroke. It is tough communicating with my wife at times, too. Somehow we actually manage to do pretty well. That is, until we have the inevitable spousal tiff. It goes like this. Somehow I manage to upset her. She promptly launches into a verbal assault, and won't give me the Board to respond. Then I have to endure two hours of haranguing. And if that is not bad enough, if I don't lie there with my mouth shut AND look her in the eye, I pay dearly! Generally, though, she is unbelievably understanding.

One of the more disgusting things I have to endure has to do with kids and food. My kids often feed me. It gets gross when they have a runny nose, and constantly wipe it on their hand. They then play with my food before feeding me by hand. When I shake my head 'no', they misinterpret it and ask me if I mean I don't want any more food. When I ask for the Board to explain what I mean, they refuse to hold it up, saying, 'C'mon, Daddy, either you want more food or you don't. Which is it? ' The choice is clear - either starve or stop complaining. My answer usually depends on how hungry I am . . .

While we are on the subject of food, I might as well Bring up another pet peeve. About 3 1/2 years after my stroke I began to eat solid food again. That led to one of my worst frustrations. I can't really feed myself, except under special circumstances. That means I have to wait until someone else is good and ready to feed me. In the meantime, they set the plate of aromatic food on my tray, right under my nose. As if to purposely torture me, they first stuff their own face and tell me how good it is. When they finally do get around to feeding me, they do so very deliberately, despite the fact that I am famished. Worse, after they start, the slightest little thing distracts them, and they ALWAYS find that more important than feeding me. Meals can take two hours! It is ALMOST not worth it.

While I am on the subject of pet peeves, let me rant and rave a little. Another thing that bugs me is how my wife parks. It is not that she is a bad driver - to the contrary, she is an excellent driver. Rather, it has to do with her INSISTENCE that we always find handicapped parking with room to operate our lift. She will circle a parking lot endlessly, looking for such a spot. If it doesn't exist, she will launch into a tirade about the store. If, God forbid, someone has used the spot WITHOUT a clearly marked handicapped sticker, we get treated to another tirade. Meanwhile she passes numerous parking spots for normal cars. All she has to do is have the kids unload me by the door and go park. Instead, I get to spend half an hour driving around.

One of my most frustrating things has to do with my wit. Love me or hate me, people often commented on how quick my wit was. It is still just as quick, but it takes me so long to say anything that most of the time the timing is ruined anyway. In the wit game, timing is everything, so I usually just keep it to myself and laugh at my own jokes. I was always my own biggest fan, anyway.

Another thing I don't understand is how my caregivers, who know how much I fought for life, can throw theirs away by smoking. What part of tracheotomy don't they understand? "It is addictive", they whine. I'm sorry, but coming from someone who controlled his urge to eat and lost fifty pounds, and then learned to breathe well enough that they removed my tracheotomy, I don't buy it. I think they just don't care enough about life. They will, but not until it is too late.

Above all, what constantly eats me up is, why me? I don't remember doing something that was that much fun, , or doing something dangerous or stupid. This definitely was not the Darwin award. To the contrary, I was a health and safety nut - this struck me down in the prime of my life without warning - I still can't believe it. I still wake up and have to remind myself that it happened, because it is so weird. The odds must have been infinitesimal, particularly since I was in such good shape. It is something I doubt I will ever come to grips with.