My name is Lesion, for I have many.
At least four: one in the brain itself, two on my brain stem, and one in my cervical spine. I have seen them, so I know they are there.
I have not actually seen them. It is not even clear to me what they would look like in the cold light of day, and I will never see them in the cold light of day, since they are imprinted on the organic machinery that allows me to perceive things in the first place and could not be seen directly by human eyes without sawing1 open my skull. But I have seen the magnetic resonance images that purport to depict them, and I have no reason to believe any of the doctors are lying to me as they interpret them: these, they say, are lesions.
There is a big one in the left hemisphere of my brain. When I first saw it, lying in the hospital bed, uncomfortable, alone, and about as grouchy as I have ever been, it looked huge. I remember seeing a white flash that seemed to extend tendrils throughout one whole half of my brain. When I saw the same MRI later in a non-hospital setting, it didn’t appear to be taking up quite so much space. But that first time, it seemed huge and tentacular, like someone had imprinted the Yellow Sign on my cerebellum. The others were smaller.
As I understand it now, the others might be a bigger problem, since they are on my brain stem, but to my untrained eyes they just look like little white smudges. They look like someone should have cleaned the camera better. But it was one of those fuckers that was probably the cause of my diplopia, which I have now learned is the fancy word for “double vision”—the symptom that caused me to go to the hospital in the first place, and caused me to be unable to drive for most of a month, and also caused me to wear an eyepatch for a while, which, it must be said, was pretty bitchin’.
I looked good with an eyepatch. My aesthetic lends itself well to bepatchedness. I am bearded and a little chubby and an enormous ham; an eyepatch works well for such a man. I don’t miss it, now that my vision has returned to its earlier state (that is, terrible but corrigible with glasses), but I enjoyed it while I wore it. If one was medically required to wear a kilt, one might have a similar feeling.
But, whether with one eye or two, I have seen the Lesions, and understand that the haruspicy of these MRIs means that I almost certainly have multiple sclerosis, MS, which is a demyelinating autoimmune disorder, which means, basically, that my immune system has decided to start stripping the conductive coating from some of the nerves in my brain and spine, apparently for shits and giggles. As I understand it — and I don’t; I don’t understand any of it yet, I am repeating things other people have said and want nothing more than for a very smart person to sit me down for forty-five minutes and explain everything to me so that I can repeat him or her, instead of the patches of insight I have gathered from doctors and Wikipedia and my own memories of my grandmother — as I understand it we don’t really know how or what or why MS is. One doctor I saw said that he thought MS and other disorders are diseases of hygiene; in other words, that because we live such relatively clean lives now, our immune systems are getting bored and manufacturing enemies to attack. I can’t tell if that is profound or preposterous, but if I ever have kids I will make them roll around in the dirt for 10 minutes a day.
I said earlier that I “almost certainly” have MS because, to-date, more than a month later, that is the state of my diagnosis. At my first meeting with a dedicated MS neurologist, she reviewed my various MRIs and told me “we think you have MS” rather than “you certainly have MS.” This sort of vagueness is going to be a feature of the rest of my life, it seems; or at least for the next decade or so until we can chart some sort of graph of how the disease progresses in light of whatever treatment I ultimately end up on. This is because it appears to be difficult to predict exactly how MS is going to strike, and because it is in a family with several other demyelinating autoimmune disorders that can look similar, at least at first blush. (One of these, called MOGAD, is also a possible diagnosis for me, though all of the doctors I’ve spoken with are pretty sure it’s MS, not MOGAD. I can’t tell which would be worse, though I do know that MOGAD would be more fun to say and make M.O.D.O.K. jokes about.)
Everyone is very careful to tell me that MS is not as bad as it used to be; that with appropriate treatment I should be able to avoid serious physical or mental disability, at least in the near future. I am told that “this isn’t the disease it used to be.” This is because a lot of very smart people have put a lot of effort into developing new drugs and treatments for MS, not, presumably, because MS has somehow lessened its inherent lethality in the years since, though I like the idea that MS has somehow just gotten worse with the passage of time, like an aging athlete or rock star.
Yet the vagueness remains. What will things look like for the next few years? What will be the appropriate treatment? What sort of changes do I need to make in my diet and habits? What is this going to mean for Julia? I don’t know, I don’t know, I don’t know, I don’t know.
“I don’t know” is also something I have to say to the doctors a lot. They ask me many questions: is this the first time I’ve had symptoms like these? Well, I’ve never had double vision before, not like this, but I don’t know, man, I’ve certainly been violently nauseous before for no obvious reason, which is what kicked this off. I’ve had weird tinglings in my arms before that I simply disregarded as quirks of the nervous system. I’ve certainly been laid low by terrible bouts of depression many times in my life. Are these previous markers of MS, since MS can cause all of these things, or are they unrelated issues? I don’t know. Is the fact that I’ve found it harder to play the piano in the last few years a function of MS or just age or a lack of practice? I don’t know.
Lying in the hospital bed with intravenous steroids pumping through me, the doctors kept asking me if my double vision was improving, and I don’t know if you’ve ever tried to keep track of a purely internal phenomenon like that before, but it’s difficult. Certainly the double vision wasn’t gone (I wore a patch for almost a month) but was it maybe slightly better? Slightly worse? I don’t know.
The ceiling of my room had ceiling tiles of the sort that you can lift up and climb around in, which meant that the individual tiles were separated by thin strips of metal. One of those thin strips of metal was exactly in my line of sight if I tilted my head back. My double vision was such that I experienced one strip of metal running horizontally across my vision and another tilting at approximately a 30 degree angle from the first. This was actually very useful, since I could look at the ceiling and estimate whether the angle had increased or decreased since the last time a doctor asked me if my double vision was improving and answer accordingly.
Enfolded as I am in these many, circling Idontknows, I actually find the images of the lesions comforting. Many people suffer from chronic conditions that leave relatively little in the way of physical evidence; some of these are presumably psychosomatic (which is not to say they aren’t real, exactly) and some of them are presumably not. These people are faced with a different set of challenges than I am. We may both find ourselves struggling to communicate with doctors, but I have a trump card they do not, since I can always point to the MRI and say “Look, man, look at the lesions!” No one is ever going to think I am faking my disorder. To-date, all of my doctors have been very nice, so I have no reason to worry about this sort of thing anyway, but I suppose it is good to focus on the potential advantages of one’s situation.
In the meantime, surrounded by these Idontknows, I am trying to live life normally, but am also allowing myself to become very familiar with the discography of Jacqueline du Pré, the brilliant cellist whose career was cut short at 28 by MS. Perhaps this is appropriate; perhaps this is morbid. But I’m not sure what else to do at this point, and her rendition of the Elgar cello concerto is famous for a reason.
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Anyway, this whole thing is a big part of why I haven’t written much for the Substack recently. I’m going to either get back in the saddle and post roughly once a week or shut down the paid subscriptions in the next few weeks; I’ll let you know which it is.
Do you remember that sequence in Ted Chiang’s Exhalation when a robot constructs an elaborate series of mirrors and Waldo arms so that he can take apart his own skull and see how his brain works? Man, Ted Chiang is the best.