WAGblog

After a month...

...of mostly hell and a final week when I learned a great deal I didn't understand before, not even while writing DIVIDED MINDS, for all its seeming eloquence to the contrary -- about psychosis, about paranoia, about Reality Testing (that one was hard), about trust and trusting people to be honest and aboveboard (even harder, and truth to tell, I'm not there yet) about speaking clearly and openly, not obliquely, only hinting at a truth I assume people will intuit or guess, somehow reading my mind -- after a month of all that, I'm home again, though 14 pounds lighter and a great deal weaker and sadder (and yes, Paula, Lyme-ridden!).

I'm sadder for complicated reasons, partly because I just don't feel as well as I usually do upon discharge from the hospital, not, for instance, the way I did a year and a half ago. But mostly I'm sad because during the month I was in the hospital I was told that Joe, my wonderful, completely tolerant best friend (and friend to many others) who has stood right there with me for 20 years, through gruel and stew and despite my rages, irritability and all too frequent rejections, a truly good man of going on 51 years, has ALS, amyotrophic lateral sclerosis, or as it is otherwise known, Lou Gehrig's Disease.

Joe will die of the disease. Most likely he will not become the one in ten million Stephen Hawkings who manage actually to survive (no one knows how...) though his optimism keeps alive that hope. But worse, before he dies, he will become progressively disabled as his motor neurons die and virtually all his voluntary muscles disconnect from his brain. He will lose the ability to speak, probably first, because it seems to be the first capacity that has been affected. He will eventually lose the ability to walk or even move his arms or fingers or even his diaphagm, so that even breathing will become impossible without a ventilator. Luckily, I have discovered through my reading that the muscles of the eyes (and bladder) are often unaffected, which is a blessing as we can only see moving things and so our eyes flicker about constantly in order to "make" things move. If his stare were to become fixed and unblinking, Joe would become functionally blind to his surroundings, unless they could be made to move, by means of a randomly R-L rotating wheelchair or bed or something that literally created changing movement.

The biggest worry, though, at this time, since he already has trouble swallowing liquids, is that he will aspirate something -- accidentally get liquid into his lungs -- and develop a pneumonia that kills him. In some ways it might be merciful, but I don't want to lose him, not yet, not while he has so many functions still intact and is not suffering in any way that I know of. He tells me of constant twitches and his speaking difficulties are evident, but other than that, nothing is visibly wrong.

Shortly before I was hospitalized, Joe came to a session with me and the esteemed Dr O and during that time I managed to tell him, or she did, that one of the problems between us, for me, was that he had opinions about things, his own wants and desires, but that he never expressed them. Joe admitted he was afraid of controversy and wanted only to be a good guy, the one who was agreeable and didn't argue with anyone. But he made a promise to be honest with me and try to tell me what he thought, felt and wanted, since I had made that request and he wanted to honor it. He's now doing it in spades and it is amazing to see this man's mind at work. Joe who thinks of himself as an engineering nerd, thinks of himself that way, doesn't understand how kind and truly loving his all-accepting attitude is -- towards his friends, other people, the world, even towards his illnesses (he also suffers, relatively mildly, from paranoid schizophrenia and possibly Aspergers Syndrome) and towards his fate...Name it and he'll have a good word to say about it and the reason why.

Joe is facing his early death with a great deal of respect, I think, for what life has given him and for its all being over. He is also dipping way down into a source of the dignity that we all hope for but cannot always find in ourselves when facing the Ultimate; we cry and scream and beg of God, WHY ME???? Joe mostly smiles. His grin is impish and cherubic, the way it always has been.

It isn't that he is happy to have ALS (suicide wouldn't occur to Joe in ten million years) though the illness is a new adventure and project for him to pursue, so much as that he is too happy a person not to be happy even now. He is also planning ahead, for the time when he will need a wheel chair, will need a motorized wheelchair, will need a personal care attendant, a nursing home, even a funeral...But he can make gentle jokes about it all and truly not seem upset. He seems to have come through some hardening flame, because he now tells me how he thinks and what he wants and tries to be open with me, even when he disagrees. But I find his true beliefs -- about the goodness of people, the human need for work, the inhumanity of a system that essentially forces the mentally ill permanently out of the job market -- to be so fresh and astonishing that I simply want to listen, not argue!

He himself is and always has been an engineer at heart, not a "mental patient" despite that designation by the System. He was condemned to idleness by the financial and job-related need for disability status at a time when there was no ADA. But had there been, there's no way Joe wouldn't have fought to go back to work as soon as possible. He has always wanted to, and had quite impressive jobs up until the time he became ill, so there was every expectation that he could have worked just as before, once on effective medication. Luckily for Joe, Trilafon controlled his symptoms and Zyprexa did that even better, also helping his communication skills, both without intolerable side effects. He says he could have worked and would have worked, if he'd just had a little help getting back and had been able to remain on disability until his income could provide enough to cover medication and illness-related expenses that Medicare and Medicaid now paid, provided he didn't work.

Joe now spends his time trying to research ALS, inventing when he has any free time, but mostly visiting with the friends and relatives who apparently have been "coming out of the woodwork" with offers to help, touched by Joe's faithfulness over the years. I've tried to help, researching what he can't because of all the visits he feels obliged to do, though my attention span is very short right now and reading difficult...

It's going to be a hard slog, getting through ALS, it's going to be difficult and sad, but with Joe it will also be funny and optimistic and plain old happy, because that is just the way he is. I won't say that the guy is a saint; that's a cliche and tantamount to a condemnation. But when Joe grins these days? Man-- he gives off light.

Posted by pamwagg at August 19, 2006 08:51 PM