Whew--it's been a while. Around two years ago (I think it was actually like a year & a half), I went on indefinite hiatus with this thing for a number of reasons. The first was that I felt like I was grasping at straws for material. Yes, not every day presents material that needs to be recorded, but I shouldn't simply have continued, because, as I've said before, I emphatically did not want to emulate Proust & write about sleep. Honestly, no one gives a shit about your dreams, unless they somehow involve the other person. (In my case, this would not make it more tolerable, because the odds are that I killed you in the dream.) I think enough material has sufficiently built up to prattle on about, but first I'd like to bring you up to speed on the current state of my union.
First of all, I have zero cognitive defects, & actually the physical difficulties belie the fortitude of my mental capacities. It's a strange inverse development: my physical symptoms have grown worse, but mentally I've never been sharper. For instance, I cannot sit at my computer for very long before my lightheadedness becomes intolerable. I've tried to describe this before, but I think it's still a bit unclear. You know how you feel lightheaded going down a small hill? It's like a prolonged sensation like that, but without the weird stomach feeling. It feels like all the blood is pouring from my head, like sand in an hourglass, & only by lying down am I restored to a state of equilibrium. This has made it very uncomfortable to do much of anything, because nearly everything involves sitting erect. Going to the movies, for instance, fills me with dread because I know that I'll have to sit up for at least 90 minutes. Same thing with restaurants: I generally eschew dessert (well, not really) because I just want to lie down quickly.
This is where the iPad is invaluable. I can lie down & write, like I'm doing now. & something else, too, about the iPad--it makes reading so much easier. Prose, at least. I figured out how to turn off the percentage thing next to the battery icon. It's nerve racking to see that number tick down a percentage point while you're in the middle of a page. Now, without it, I'm free to read without that peripheral icon judging me, & me constantly waiting for the number to tick down another percentage point.
I still have a problem when it comes to poetry, & you can see why: a few weeks ago, I downloaded a collection of verse by my favorite poet, Emily Dickinson. Now, I've read her poems innumerable times, & I was perusing some of her more popular ones when I came upon "Because I Could Not Stop for Death," when I immediately recognized that a stanza was missing:
Or rather-He passed Us-
The Dews drew quivering and chill-
For only Gossamer, my Gown-
My Tippet-only Tulle-
I knew instantaneously that it was conspicuously missing, because the "My Tippet--only Tulle" part has been etched into my brain for like 15 years. When I quote that poem, for instance, I almost always say, "My Tippet--only Tulle," because it's alliterative & contains references to abstruse, sartorial terms. I remember thinking, "What the hell is a 'tippet'? &, for that matter, 'tulle'?" So that I saw as an inexcusable transgression, & am resigned to stick to prose.
I have several dozen books now, & I've yet to find such a glaring omission in them. True, such an excision would be much less noticeable, but I've read "Hamlet," for instance, dozens of times, & my electronic version does not seem to be missing anything. (Yes, I know that Shakespeare used iambic pentameter primarily, but even in Sir John Falstaff's bits, which were written in prose, nothing seems to be missing.) Even in longer works, such as Blood Meridian (which I've also read multiple times), nothing is conspicuously missing.
Oh--I cannot tell you how crestfallen I was to find that stanza missing.
Anyways, so my iPad now continues to reveal more amazing innovations when it comes to reading. You know how you used to have to angle your body toward a light source in order to see text adequately? No more. The device's internal illumination means that you can, literally, read in the dark. Priceless.
These accommodations offered by improved technology do not negate the hard fact that my disease is, pardon the pun, progressing. My face, for instance, serves as a kind of barometer of the current status of the disease. In the beginning, there was minimal facial numbness. Then it spread to my right eye, & stayed relegated mostly there. Over the last few months, though, it has proliferated to the left side of my face. & I've moved from a cane, to a walker, & now, to a power chair. When I go outside, I mainly like to be pushed, so I don't have to worry about capsizing, or running into things, be they stationary (fire hydrants, parking meters, etc.) or not (people, animals, & the like).
The most prevalent form of MS is relapsing-remitting. It's now quite clear that I have never had a period where my symptoms, um, remitted. I remember sitting in the exam room when Dr. Burt, the immunologist at the helm of the stem cell study,made a stair-like gesture, & then an up-&-down flapping motion with an arm. Now, I may be an English major, but I knew that he was giving a representation of a chart that showed how I perceived that my disease was progressing. I knew that the stem cell transplant had no effect on primary-progressive, but I also knew that there was no treatment for it, so, in my mind, I had nothing to lose.
Which brings us pretty much up to date. So, even though I'm not as garrulous as I used to be, I'm also more deliberate in my choice of words, & my newfound avenues of expression allow me to communicate more effectively. I don't mean to be morbid, but if Roger Ebert can still write regularly, so can I.
R
