There’s this really good show on Netflix called Michael, Tuesday and Thursdays and I can’t recommend it enough. If you want, you can stop reading there and go ahead and watch it. For any other reason, I’ll write a little more.
It’s been a particularly rough Saturday. I’ve cried hard twice, not to mention that crying gives me migraines. So once I finally get it under control, if I just so happen to make the very human error and have the audacity to cry twice in one day, I get the beautiful gift of two migraines. Cool!!!! Ah, that’s just self pity at work. I’ll ignore it if you will. The point is, I’ve had better Saturdays.
It probably doesn’t matter a lot why I was crying. Although, given the over-arching topic of this blog, I guess it does seem pertinent. Mostly it has to do with the exhaustive, skin-crawling, seemingly unattainable task of accurately describing this illness to other people—the people you care enough about to sit through all the expected questions, and probably a good three or four you haven’t heard before. It should be such an easy dialogue. A simple back and forth of mostly yes or no questions with neutral answers that would fulfill every facet of a humans curiosity. That’s how it should go.
For me, it rarely does go such a way. I can’t help but wonder, if the disease were different, would the discussion be different? And you can’t help but be me and hear an obvious, resounding, validating y e s as an answer. But that’s engaging a reality that doesn’t exist. And for the most part that rarely goes well for me.
Another side of the coin to consider, is what it feels like to be relatively healthy, and be on the other side of a persons life with M.E.. A life that can so easily look the part of ordinary, but can’t produce the tangible value of a “normal” life. It’s not to say the other person sees it that way or doesn’t, but I’m trying to imagine my own personality, character, and basic psyche from before I was sick (another mostly impossible task, by the way). How would I feel about a person, “presenting” as I do? Maybe I would have no problem as seeing them as a product of their own choosing. Maybe I would see them as simply not trying hard enough. I would probably, which is how it goes most of the time, assume I had answers and capabilities that would keep “hypothetical me” from turning into this sick, human-wasteland “me.” It’s a common response, and I believe it’s actually a defense mechanism, by the way, not at all a mal-intended one.
In this circumstance, seeing someone who looks like you and mirrors your life in any number of ways, simply “succumb” to some disease that stripped them of nearly everything, you need an out. You need a reason why it could happen to me but not to you. I’m talking about livelihood, and the loss of it. What’s to keep you safe from knowing it couldn’t happen to you? The mind has its methods.
It makes sense. In thinking of my own mind and ego, I’m presuming that that wouldn’t be a too-far-off possibility of how might I react. I could naturally assume my will power would be stronger, my body would fight it off, I wouldn’t let myself sink that low to a state of non-productivity and lack of social interaction. Or perhaps, I might see it as a simple lapse in mental state—and I’d want to trust mine enough that I’d never let it be that vulnerable. These are all just chance reactions that I’m considering I could have—as well of course, reactions I’ve witnessed over and over and over again. In either case, the mental default of the person on the other side makes sense.
It does however, strain the sick person, to the fault of no one (except the NIH ahem ahem). Psychologically, it’s a struggle, which puts more pressure on the brain, and so usually means a poor physical response too. With M.E., emotional stresses are just as causal for a crash as exertional ones. So every time you’re having to re-explain something, or explain it from the beginning (which feels at times, impossible), it can come off as an ongoing battle that you’ll never quite win. It sounds like a blatantly negative attitude, but it’s because we know it’s impossible to convey an illness to a person, when that illness isn’t even well defined in a book. Or among researchers or doctors. Or google. If med school hardly touches it, where do we start?
We’re literally learning in real time how to live a meaningful life, when it can’t deduce meaning in all the conventional ways. That struggle is enough to make anyone…dare I say it, fatigued. But then to *feel* like you’re constantly having to convince people that you are in deed, trying is another struggle to join the mix. So at times, for me anyway, it can feel crazily overwhelming. And either rationally or irrationally, sad. A real hurt. I guess it could easily feel that way for the person who loves you on the other side, hating to have to watch this illness wreck a person in real time.
I probably fail to consider that side as much as it deserves.
From watching this show, I’ve realized a lot of people, particularly those struggling with depression and anxiety disorders, never arrive at the road called “Cured.” It’s one reason why they’re in therapy. Some can be cured, certainly. But some are simply learning to live and survive through the extreme discomforts they feel daily, hourly, moment to moment, whatever it is. And that is something so many of us within these blurrily defined categories of “lacking conventional health” share.
None of us have to try very hard before we feel alone floating on our individual islands. But there’s also the truth that we’re enduring these things, these lacks or voids, together. And it’s good to remember that, for whatever potentially sadistic reason. Maybe not in an “Oh others are in pain too, thank God” kind of way. But that we’re all up against certain things, and our collective seeing them through to the other side, brings us closer together in a human sense. At least the possibility of it exists there.
The more one person defies their mental or physical limits, the more likely for another to do it, and so on and so on. It’s not about beating the disease, but finding a path where not everything in life feels predetermined by it.
Maybe that’s the hushed solidarity we feel in sometimes hearing about the hardship of someone else. Maybe it’s a quiet, subtle reminder, that in each of our respective battles we’re individually aginst, we’re not alone. And that reminder, it seems, can never be bad.
In any case, I’m speaking in specifics and generalities. The specifics are why I cried, but the generalities are the bigger take away. This will always be hard for me. It may be for a lot of people. But the best I know is that by continuing to talk about, explain, and defend mecfs if you have to, the closer we will come to a time where we won’t have to. I wish we could be there now, but there’s no speeding up society with one press of a button. It’s up to all of us now. Keep talking. Keep listening. Don’t be afraid.
Last thing: The song introducing the show is so good. I’ve put it here now so you can plug your earphones in and listen. It’s worth it.
Health, Happiness, Another Wild Saturday Night