2006-12-26 - 2:19 p.m.
I�m back home after a trip to see my parents. Back home, thank God. I�m glad I got to see them and all, but being in that house was incredibly difficult both accessibility-wise and psychologically. Nya and I flew out last Saturday to be there for the annual extended family Hanukkah party the next evening. Then Nya left on Wednesday to spend Christmas in the Bahamas with her mom and siblings. I stayed around for a few more days and got back to Chicago Friday night.
The Hanukkah party itself was unexpectedly pretty low-stress and unusually had almost no obscure, distant relatives. One of the most interesting things to me was that my Grandpa was there (my mother�s father from the Italian, non-Jewish side of the family) and I saw him without his wig for probably the first time in my life. When I was little, I had the idea (I can�t remember if he promulgated this) that his thick black wig was his real hair, even though his beard is grey. He looks really good; Nya pointed out that he now resembles an older (he�s 84 or something) version of Alan Arkin (think Little Miss Sunshine).
Maybe his new girlfriend encouraged the move; I don�t know. I do know that my mom has been muttering darkly about the fact that he even has a new girlfriend less than a year after Grandma died. I think he can do whatever he wants at his age and I don�t understand why she takes it so personally � Grandma was his second wife and not her mother. Still, I know parent/child entanglements can lead to raised blood pressure, so I�ve tried to be diplomatically uninvolved.
Max came to the first few hours of the party (his wife unfortunately had to stay home to study for med school finals). The charter school he helped found is now in its first year of operation, with a bunch of kindergarten and first grade students. He�s the principal. It kind of blows my mind, having known him as a fellow youthful miscreant, to think of him now as an educational authority figure. I mean, who woulda thunk? In any event, it�s certainly a better fate than being the sleazy politician everyone feared he�d become�
Speaking of who woulda thunk. On Tuesday, an old friend from Saint Ann�s who I hadn�t seen in years came for dinner. We used to take the bus together in middle school and, in my first days at the school, her example eased my nerves a lot about going to school downtown with the rich kids. See, she was also from the outer city (Sunset Park? I forget) and her mom was also a public school teacher like my parents. And she�d been going to Saint Ann�s since first grade. Right on. I realized that if she can do it and be accepted, so can I. Today she�s gone from Catholic to Unitarian, which was surprising enough. She�s also a lesbian.
She was fairly conservative by Saint Ann�s standards, as I recall (although my recollection may be flawed). At least she went to college at Dartmouth, certainly a bastion of conservatism. She got married fairly young and has a 7-year old boy (who came with her and is incredibly cute). Somewhere along the line, she got divorced and came out. Today she lives with another woman, a fellow EMT (who also came to dinner and is quite nice). They seem to complement each other beautifully and I�m very happy for them.
We reconnected through Friendster of course and exchanged emails. She was so excited when I told her about re-meeting Nya and delighted to meet her again in person when she came over. She also put me in touch with another classmate of ours who also has MS. So weird � we had a very small class; what are the odds? While I don�t like anyone else being afflicted like me, it�s sort of comforting to know you have company. My friend�s mom also developed MS several years ago (it�s unusual to first present in older people). She�s of Sicilian descent (like half of me) and MS is unfortunately more prevalent in Sicilians. Lucky us.
Probably the most pleasantly surprising development while I was at my parents� was the change in my mom�s attitude. She seems to have come to terms somewhat with my disability and to have calmed down a little. She�s less in my face, watching me like a hawk waiting to jump in and �help� at the drop of a hat. She listens to what I need more when I do ask her for assistance. She was quite cool and unpanicked helping me after I fell my first day there and relatively level-headed after that. It�s a vast improvement, although she�s not entirely better.
I still had to explain over and over that just because she sees me falling a lot in her hard-to-navigate house doesn�t mean I�m the same way at home, where I�ve arranged everything so it�s easy for me to get around. She was worried that I was going back to Chicago on my own for a few days before Nya returns (she�s spending Christmas in the Bahamas with her mom and siblings). Wouldn�t I rather stay there until she gets back? I didn�t know how to politely explain that her house is hellaciously inaccessible and I have crucial things to do at home (like finish my grad school app). Still, I know she means well.
Only two years ago, when I asked her (among others) what she thought of me as a crip for my disability class final project, she related this story as part of her reply:
�Perhaps some of the behaviors you exhibited in your younger years were sub-clinical manifestations of MS. One of the lectures we attended was by a doctor who himself has MS. When he talked about his early years he could have been talking about you � sensitivity to noises that created a sense of overstimulation and confusion, a sense that something was not quite right, a floating anger and anxiety that had no discernable cause � almost bi-polar like behavior.�
An interesting theory. There�s only one problem. It�s not true. When I first saw it I thought � how odd. I didn�t have super-sensitive hearing when I last lived with my parents. And maybe I did indeed have a floating anger and anxiety, but it certainly had a discernable cause: being a teenager. This was all irrelevant anyway, as it was the situation like a decade before I first presented with MS. I protested to my mom, but she said I misunderstood when she was talking about. She meant that I had sensitive hearing and floating anger when I was a baby. I didn�t know what to say. Now we�re talking about a quarter-century before I got sick.
I know that, in the absence of known causality for MS, it�s tempting to ascribe some sort of predictor or foreshadowing. Like, see we knew you�d get sick inevitably because you were born under a bad star. Or, you were already sick at age 1; it just took until age 26 to manifest. Because something so terrible can�t have happened for no known reason and have no signs pointing towards it. That level of uncertainty is just too horrible to be the case.
Unfortunately it is the case. We don�t know the signs of MS before it presents itself fully (if there even are any), just as we don�t know what causes it. Why am I sick? Who knows at this point. (What�s really important is what I do now that I am.) I guess if it makes my mom feel better to think it was all in the cards, so be it. At least she�s now much calmer about helping me. (I don�t know what � if anything � caused this shift; maybe her own time in a wheelchair recovering from a knee injury�)
In any event I�m so glad to be home. I got back Friday and I was enjoying flying solo until recently. But Nya (who I miss terribly and have to several times a day) has now had quite enough of her vacation and wishes she were home with me. I wish that too; I love her so much and wish I could hold her. It�ll only be a few more days though, so I�ll try to be patient.
� 2006 Geoff Gladstone
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