I vacillate between terror and embarrassment about being so sick for so long; I know those feelings are not helpful, but they are real. Much of the time, I’m too exhausted to hold onto any feeling or thought for too long—a change in my brain functioning which in itself could be fascinating. I imagine Oliver Sachs would have marvelled at the bizarre symptoms of multiple sclerosis even if it were his own mind that was blossoming with these twisted flowers—but most of the time I can’t seem to remember to emulate him. (Note to self: read more Oliver Sachs.)
So, let’s just say, I haven’t bounced back … yet. When I bemoaned this to a fellow MS, ummm, “alumnus,” now in a wheelchair, she said: “Well, you may not … you may not ever … you will certainly never be the same … but you will be better than you ever were.” If her own changes were not so dramatic, if her own smile were not so beatific and profound, I would have thought she was delusional. Instead, that remark alluded to something vast, which I can’t yet talk about, but hope to soon. That woman was admirable, to say the least. I do hope that one day I become the sort of creature I might admire.
And though I often curse the hand I’ve been dealt, I’m also keenly aware of the inexplicably good fortune that is so often heaped upon me—such as, being surrounded by a family of friends who are some of the most generous-hearted human beings on earth. Today some of those friends are launching a GoFundMe crowdfunding campaign on my behalf, so that I can return to the United States, with my artwork and my husband, which I am longing to do. There is something about being this ill, with this particular disease, that makes me long for own language and my own gnarly culture in a way I could never have imagined. So, today, I ask you to check out the GoFundMe page that my friends have made for me.
So until I feel well enough to talk coherently about the many projects and works-in-progress currently on hold, I’ll just post here some of the pieces I was working on (thanks to the Pollock-Krasner grant) just before my MS attack last October.
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