The alphabet of months: a year of living with multiple sclerosis
June 30, 2015 9:07 AM   Subscribe

I write a lot of notes to myself these days, but this one is different. Remember the body. A strange thought. How could I forget it? And yet I do.
I have had MS for a little over a year and this has been the surprising, sometimes embarrassing challenge in my particular case: where does the disease end and where do I begin? What is the illness and what is just my maddening response to it?
Games writer Christian Donlan (previously) writes about neurology, language and life since his diagnosis with multiple sclerosis.
posted by Otto the Magnificent (11 comments total) 8 users marked this as a favorite
Good read. Multiple Sclerosis is a highly variable disease, but a lot of what he describes corresponds well to my wife's experience of MS.
posted by tdismukes at 9:31 AM on June 30, 2015 [1 favorite]

In the past few years, a surprising number of people I know have mentioned that they have M.S. And the more I have read about it, the more I begin to suspect that there is more unknown about it than solidly known.

It looks like a pretty weird disease, which the simple "wire insulation" analogy belies. There are often announcements that a new discovery will bring relief Within A Few Years, but they don't seem to pan out. :7(

I wish the best to people with M.S., and I wish success to the researches puzzling out its secrets.
posted by wenestvedt at 10:01 AM on June 30, 2015

Yeah, this is an excellently written piece, and sums up the situation pretty well. This is especially on the mark:
I know that you learn to distrust your own body – and then you learn to distrust your own sense of distrust.
Because MS is often hugely variable in its effects even with a single patient, it sometimes leads the MS patient to attribute anything weird to the MS. For lack of a better term, I think of this as hyperchondria. As an example: a few years ago Bolthouse carrot juice was linked to botulism poisoning [previously] and was pulled from the market for a time. My recollection was that the symptoms that propelled the luckless carrot juice drinkers to the ER was waking up to find that one entire side of their faces had gone numb. I was drinking a fair amount of Bolthouse carrot juice in those days and if I had woken up to a numb half-face, I would have shrugged and made a note to mention it to my neurologist next time I saw her.

One expansion I would add to his description of L'Hermitte's Sign: in most cases, it manifests when you lean your head forward and put your chin on your chest. A bolt shoots down your spine and out to both sides at discrete points, like your spinal column has just grown a bunch of legs and is trying to squirm free. It is good that it passes in a half-second or so, because perceiving one's spine as a two-and-a-half-foot long centipede trying to vacate the premises of your torso would be high-octane nightmare fuel.
posted by ricochet biscuit at 10:51 AM on June 30, 2015 [2 favorites]

I found it a very well written article. One of the struggles with MS is just plain trying to explain what it feels like. Everyone has different analogies and who knows if we are trying to describe the same thing or something completely different. My neurologist mentioned that it is so interesting how his different patients describe their symptoms. It becomes a sort of word cloud diagnostic process.

As for Lhermitte’s sign, I actually find it fun. I lean my head forward on purpose sometimes to get the zap (not painful for me). It is also like a button I can press, to show myself that MS – while "in my head" – is a real thing with physical properties. My poor cervical lesions, being squished for my entertainment.
posted by mephisjo at 11:07 AM on June 30, 2015 [5 favorites]

Thanks for posting this. Ne of my closest friends was just diagnosed. This was helpful to read.
posted by persona au gratin at 12:09 PM on June 30, 2015

As for Lhermitte’s sign, I actually find it fun.

Likewise. Lhermitte's Sign is not ongoing with me, but I have had it a few times, and it is a sensation... well, it is more 'interesting' than 'pleasurable,' but not entirely unfun.
posted by ricochet biscuit at 12:14 PM on June 30, 2015

The wire insulation / fraying analogy leading to seemingly infinite symptoms makes a lot of sense when you're accustomed to dealing with complex electrical systems. The brain is far more complicated than any circuit board a brain can devise but complex circuits lead to emergent behaviors and interesting failure states. Exploiting predictable failure states was one of Steve Wozniak's amazing skills pre-Apple because some of them are observable and testable in isolation...but throw a frayed or loose connection in a low voltage complex circuit within a circuit ad absurdum that won't immediately short out and fail, and your imagination will struggle to figure out what the hell is going on.
posted by aydeejones at 3:02 PM on June 30, 2015

Like my shitty combined cable modem / wireless router. Don't buy those because they are too unreliable and coupled and hot and crappy like a very frazzled burned out mind
posted by aydeejones at 3:03 PM on June 30, 2015

And especially where digital and analog converge and redundancy is intentional but imperfect. My mind emerges comments three in a row yo
posted by aydeejones at 3:05 PM on June 30, 2015

Stay cool, avoid direct sunlight. Rest before you get tired. Once you are tired, a short rest won't be enough. You have to anticipate fatigue before it happens. Summer is dangerous, especially on cloudless days. Think like a vampire, a vampire who prefers calm to chaos. Yes, a Buddhist vampire. That sounds silly, but heat, stress, and fatigue are like Kryptonite to people with MS. Instead of heat, stay cool. Instead of stress, stay calm. Instead of fatigue, stay rested. Wave bye bye to hot showers or baths. Get used to room temperature showers even during the winter. Lastly, it sucks that fedoras are so mocked, because a wide brimmed hat can be a lifesaver.
posted by Beholder at 5:49 PM on June 30, 2015 [4 favorites]

That is silly, because practicing meditation is one way to live a calmer existence, and to accept the weirdness that a body with a degenerative disease will throw at you. And if you're going to be mocked for wearing a fedora, why not wear an actual wide-brimmed hat?
posted by sneebler at 8:27 AM on July 1, 2015

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