My Awesome Porchswing
Yesterday, I went to my neurologist and she said something that, in years past, would have infuriated me. After I asked her what I should do regarding the incredible, bone-tiring, fatigue that comes with Myasthenia Gravis, she said, “Just rest. That’s really the best medicine.”
I have lived with a form of MG for my entire adulthood. It almost killed me once, and I have struggled for years trying to figure out, with the help and without the help, of my doctors how to manage this fatigue. It’s every autoimmune sufferer’s chief complaint. I have been prescribed a myriad of medications and treatments, and while some of them have helped a little, the most effective thing was a one-time thymectomy. The rest of them have been not too much worth their side effects. For this reason, when I came to my doctor yesterday with the plea, “How do I manage this fatigue?” She simply said, “Rest.”I think God has been telling me this very thing for years. I have a serious illness, an even rarer form of an already very rare disease. I actually have a Myasthenic Syndrome, not regular old MG. I will probably never meet another person with this particular type of illness. This can feel isolating and hard to explain to people who’ve never, and will never, endure any of the things I deal with on a daily basis.
Sure, cancer patients will experience this kind of fatigue when they’re getting chemo and trauma victims will experience it when they’re in physical rehabilitation. But without any of the of the vein-burning chemotherapy or rehab, I will get that same kind of debilitating fatigue almost every day for the rest of my life until MG goes into remission. And, for two decades now, I’ve been promised it will…at some point.
Still, I have to drive my kids places, make dinner, write books, take graduate classes, and just live with it. People think I “look normal,” so I just have to keep moving and advocate for myself. That’s pretty intense, and it can make me step outside of myself and begin to simply react to the demands of others, rather than, actually cognitively weight them. I keep doing long after the body alarms I’ve been feeling–like swollen joints, blurry vision, neck weakness, and slurred speech–hit. If you think about it, ignoring that is nuts.
Having been raised in a home where the women never surrender, they never take a day off, they never stay in their pajamas all day just to read, even if their bodies need them to. I’m simply unfamiliar with the word “rest”. The women in my family just get up and keep moving until they are forced to say things like,
“I feel like death.”
“I think I’m going to die.”
“I’m mostly dead.”
“I look like a zombie.”
“I think I have early Alzheimer’s, because I can’t remember anything.”
And so on. Lots of statements like these ones above.
The women in my family, somewhere along the tree line, forgot that very Southern talent of resting in the greatest heat of the day, of perfecting their personal version of “porch sitting”. I love to do these things, and sometimes, actually NEED to do these things, but I don’t always allow myself this kind of medicine. Instead, I pop a prednisone, chug 12 oz of coffee and keep moving.
I know that my great great grandmothers all knew how to sit. They had porch swings and rocking chairs. I have porch swings and rocking chairs. They’re part of my DNA. I’m sure of it, but I use them far less than I should. I know that my mother even once knew how to do this, because when my stepfather was out of town when I was little, she would scoop me up at afterschool daycare, take me to our favorite Mexican food joint, where we’d order huge overflowing burritos, and we’d gather all we needed for a sunset picnic on the California beach. We’d sit there, just eating and talking, until the set spectacularly over the Pacific Ocean. It’s one of my favorite memories. I’d be chattering on and on and she would hush me, in that little bit of an Oklahoma accent she still had left, and she’d say, “Now, just be quiet for a little bit. Just watch the ocean. Isn’t it beautiful?”
That seems to have been momentarily lost in the shuffle of the 80’s, 90’s and nows.
So, when my doctor said, “Just rest,” I felt the faintest flush of anger begin to rise up my cheeks, because I wanted to be told “this treatment will do it this time” or “You can just go here and get shot up with this and feel 1000% like the self you haven’t known in decades,” but my husband–completely oblivious to my rising anger–sat forward at these words and nodded his head eagerly.
“She would love that!” he said. “That’s what I’ve been telling her to do for years, to just rest.”
To which I promptly replied, “Well, now that our children aren’t small, I can rest. I just have to remind myself how.”
And there are two tricks there–having the children grow old enough to not set anything on fire, swallow small objects, or wander off down the road and, also, to have the actual knowledge of resting. Nothing is as exhausting as mothering small children, and that by itself is not remotely as exhausting as mothering small children while, also, managing a fatigue-inducing autoimmune disease. And after all that is quelled, a woman must ask herself, “Now, how do I do this again? This resting thing?”
But she was right. The doctor was right. I have no choice. The most effective chemical treatment for MG gives me aspetic meningitis. I’ve had it five times. I can’t go through that again. Plasmapharesis is much too involved, with all the hours replacing my albumin with a synthetic form, and one cannot live on steroids alone. So, my doctor and I decided that I would just take the benign meds that I’ve been taking forever–good old mestinon–and that I would “wait and see”.
There’s nothing that can be done about the fatigue. There it is. That’s what I’ve been told. It’s part of me, so I just have to rest it out.
Somehow, I think this is actually what God means for all of us–to just acknowledge that our bodies know something about us that our minds are constantly trying to override. We know when it’s time to rest. We just don’t like thinking that the world might fall apart if we do (because our small worlds sometimes do in our absence), or that we’ll be forced to eat the world’s crappiest dinner, because our disinterested children and partners are cooking in our stead. But we must do what we must do. One step at a time, or rather, one porch sitting at a time.
To those other mothers, writers, artists, full-time workers, with autoimmune diseases that knock them out daily, I feel ya. It’s a tough road, but it’s not an impossible one. Our chemotherapy fatigue lasts time immemorial, even without the chemo, and we don’t get much of a cheering section, but do we really need one? Isn’t this really our normal? Let’s just take a nap and move forward. That’s what I’m doing for the next year. Writing. Napping. Drinking coffee.Praying. Porch Sitting….
Goodnight, even though it’s only half-past noon.