WAGblog

Today is Thursday...

First I need to respond to comments from yesterday: To Paula and Cynthia I can only say that I will take your advice very seriously and think about trying your suggestions. I have already been eating high protein foods -- sardines, slices of turkey -- instead of carbs when I can. I think it makes a big difference in terms of energy, though when I forget to eat at all, all bets are off. I plan to set a timer for each meal and when it goes off, eat something, yes, cold, Paula, as I've almost always preferred cold food anyway with hot drinks. Then I'll set the timer for the next meal...and so on around the clock 3X day.

Kate: you have hit the nail square on the head! The fact is I do not love my body, never have. I don't much care about it. I don't hate it, just don't give a damn about it except that I want it to remain as inconspicuous as possible, which is why I do not believe I am anorexic. In point of fact I know that being that thin makes one extremely visible, conspicuous in fact, whereas being just mildly underweight is fade-into-the- woodwork thin. For that same reason, I do not want to be so thin I attract attention, from anyone, for any reason! The ONLY reason I would want to lose weight is simply to prove to my body just who is master, who is in charge here! But the less said of that the better.

Now then, my day: This morning, Joe and Karen and I went to the ALS Support group at the university's health center. We entered a completely changed cafeteria from the one I'd known in medical school, a rectangular instead of a circular space and strictly utilitarian compared to the architectural one I remembered. But when we saw a man pushing a walker with a seat in the middle, we knew we had come to the right place. There, waiting in front of the dining room where the group was to be held, were several people, a few in motorized wheelchairs, some using other aids to walking, some looking perfectly fine.

I felt shy, as I usually do among strnge people, and was glad to have Karen there to talk with. But Joe, Joe was in his element. He's been working with the Democratic Town Committee for a couple of years now and developed an ease with social gatherings that I hadn't seen before. Now I was impressed, watching him introduce himself so graciously and ask after the person's name and engage in conversation that when I first met him 21 years ago would have been impossible. He has come so far...

When the meeting began, introductions were made and then Joe was asked to start, because he was new and full of questions. I can't recall everything he asked or what the responses were. But I remember two things clearly: one was that he seemed so happy to be among people whose voices were like his, uttering hard to understand speech that was both slow and slurred. I could see his point: despite individual differences, they really did sound like he does. The other was his poignant question about where the others found "meaning" in their lives. They clearly had no idea what he meant, probably had done enough in their lives for this to be no problem, because their only response, to a one, was that he needed to find a hobby!

Joe, though, meant something entirely different; he has suffered from schizophrenia for the last 20 years and it kept him from fulfilling his potential as an electrical engineer or inventor. Now that he has ALS, mortality is on his mind and he is desperate to find something he can do to "leave behind." I could tell him many things he will be leaving behind of great value, and do, but the big difficulty is that the ONLY thing that matters is that it has to be something worthwhile, that is, in engineering or an invention. Well, I can't make that happen, much as I wish I could snap my fingers and wish it into being somehow, somehow...

One last and hopeful part of the support group was that a 74 year old man told us that he had been diagnosed 10 years before, and his ALS had started in the bulbar region (that is to say, the face, tongue, throat, neck) just as it has in Joe. Now ordinarily this type of ALS progresses rapidly and poorly. But he wanted us to know that despite his bulbar ALS he was a 10 year survivor and still didn't need a wheelchair. Also, he was still speaking. So there is hope for Joe yet, and even for his voice!

Later this afternoon, I was picked up by a Lincoln Town Car and driven by chauffeur (ooooée!) to Lynnie's house to talk to Matt and Keri about these media interviews they hope to set up, Good Morning America etc to publicize an international caregiver survey they are in charge of, Then we had a conference call with someone at their agency to do a mock interview to practice getting the message across properly. Difficult to do when there is a specific message and not just a story to tell. I don't know how to steer the interview towards what I want to talk about, ie what the group that did the survey wants me to talk about. I'm not a professional interviewee! And I don't like doing this sort of thing, where I have to remember things I know I won't in fact remember!

In fact, I got upset during my mock interview because the interviewer confused me by stepping out of the interviewer role and asking me a question as herself...and I didn't know it...and she just steamrollered over me without giving me a chance to say a word. I couldn't figure out what it was she wanted at that point and said so, feeling like I should just give up, actually feeling like I was going to cry. This time it was a voice that saved me, the mocking one that whispered "Pore little crybaby..." in my ear, sarcastically, that made me so angry the tears just evaporated.

Afterwards we went to the diner for supper and I actually ate a quarter of a huge turkey and bacon club sandwich. You'd all have been proud of me! After an hour and 15 minutes on the road again, I was finally home again at 9pm and much relieved to be here at 10:30, writing this.

Posted by pamwagg at September 7, 2006 09:25 PM