It's Not Going to Be Fine (Myasthenia Gravis)

This will not be the usual content for this blog, but it will explain some of my cryptic references to not feeling well, and why you will see, on occasion, that happen again--when I can't cook, really, and have to resort to whatever version of minimal food prep makes sense to me for a little bit. And because this is VeganMoFo, I will say a bit about what I eat, but it is not my main focus today. Don't worry; if that's what you come here for, that's still what you'll see the vast majority of the time. Meanwhile, here's something pretty to look at.

After seeing lots of doctors, I have the beginnings of the answers to what is going on with me. I've had some autoimmune issues for a while (long before I became vegan), but new things showed up this year, and a new diagnosis: myasthenia gravis (literally "grave muscle weakness"). It's a rare neuromuscular autoimmune disorder that has left me intensely fatigued a lot of the time. If I say I can't keep my eyes open, I mean that very literally, because my eyelid muscles don't work very well anymore. The disorder usually strikes my demographic (young women) and has no cure. Treatments exist but are mostly risky, too risky to try right now, before it actively threatens my life. It may or may not go into remission at some point, but nobody knows why this happens.

My future is uncertain, but probably I will have a "relatively normal life," they say. (Relative to what I don't know.) There will be minor changes to my life, including newly frequent visits to a neurologist. But there is also one very major change: I now have to pay close attention to whether or not it seems like my muscles are responding to me as they should, because if it spreads it can be fatal, and that can happen quickly, because what kills you is an inability to breathe because the muscles that would do that, don't.

Great.

Although diet is important for managing myasthenia gravis, I don't really have to change that part of my life unless I develop problems swallowing. Diet does not cause this. Nobody knows what does. But they say one should eat a varied diet low in cholesterol and fat, with a lot of fruit, vegetables, and grains, and this somehow helps. Most vegan diets do that without trying. Weight control is also really important (because if you're going to have gravely weak muscles you shouldn't ask them to carry any extra pounds), but since I've gone vegan I don't really have issues with weight control unless I indulge in too much non-dairy ice cream. (Have you had those Coconut Bliss bars?)

I knew this diagnosis was likely, so I had already asked for a bit of time off work. I planned, either way, to skip town after I saw my neurologist. So I went to the Jersey shore, quiet now that school has started and the lifeguards are gone. I packed a lunch that seemed to intrigue the seagulls.

They got pretty close to me. They had different tactics. Some begged loudly, but this one preferred to attempt to sneak up on me, stealthily. It didn't move away when I tried to shoo it. It definitely wanted my veggie ham sandwich. Others flew alarmingly low over my head and landed near my beach towel to hold vigil.

My lunch, incidentally, was as follows:

A Sweet Earth "Harmless Ham" and Follow Your Heart Smoked Gouda sandwich with Vegenaise on garlic Tuscan bread, some little marzipan fruits I found in a local shop, a peach, and some banana-chocolate bites I made. I can't really blame the seagulls for wanting my sandwich. It was a really good sandwich!

Somehow, in spite of trying to steal my food, the seagulls provided a comfort people didn't in this first aftermath of the news. (Well, seagulls and a seemingly out-of-place pigeon who also approached me curiously.)

There has been a lot written about how to and how not to respond to someone who gets news like this. These are not good ways:

1. Someone I know died of that.
2. I'm sure you'll be fine.
3. "Thoughts and prayers," but I'm going to avoid you.
4. Here is some unsolicited advice about this involving homeopathy.
5. Let me somehow make this about me.
6. I would like to criticize your doctors for some reason.
7. I would like to tell you how I would handle this.
8. I would like to tell you how to feel.

What I am experiencing is grief, and responses that are helpful are more along the lines of "I'm so sorry" and a listening ear. Most of the helpful people are themselves experienced with catastrophic medical news, which is not surprising. They've already heard all the hurtful things and they know not to say them. I am now creating a community of "spoonies."

There isn't a right or wrong way to grieve a loss. There is the infamous "ring theory" to explain how to respond to someone like me, and some people did listen, and say helpful things, but I realized, along the way, that my way of grieving was to be alone with the Atlantic Ocean. And that was legitimate no matter what anyone thought.

So I sat among the seagulls and ate a sandwich. I lay down on my towel and let myself wonder, again, why it always surprises me just how loud the waves are. Even though I live only about 35 miles from the shore now, I grew up far inland, and I don't have a lot of experience with oceans. No matter how many times I visit a beach, the sheer decibel level of the water always startles me. And a little bit of mourning happened and I felt a little stronger inside. I got up, stripped down to my swimsuit, secured my things against seagull-theft, and walked into the Atlantic, warmed from a hot summer. The water is never truly warm this far north but it wasn't cold, and so I kept going.

I let the ocean buffet me, feeling the sands shift underneath my feet as I stood in the crash of the waves. My muscles responded to this as they are meant to do. I sensed them activate only because I was tuned into them, nanoseconds of tension coming and going, keeping me on my feet. The smell of salt filled my nostrils as I breathed deeply of the sea air. The muscles in my torso did what they usually do without me thinking about it to allow my lungs to fill with air. Because they were doing this, the muscles in my legs, to keep me balanced, had to adjust--little, tiny changes, all in perfect coordination. The water sometimes fell as low as my ankles and sometimes rose as high as my waist, but I held my own, upright, and all was well for a few moments, me as a human alone in the sea, facing big waves, while the seagulls made their calls behind me and overhead.

I smiled a little as I stood there, appreciating as perhaps I could never have before how amazing our bodies are, how strong, and yet how fragile. If I could have just stayed there in the Atlantic, battling the waves, I would have; I wouldn't have had to turn back to face a lifetime of doctor visits and vigilance and managing other people's feelings about the bad things happening to me. Somehow it seemed like the ocean was an easier thing to fight than all of that.

But after a while, I turned to face the land, my momentary freedom washing away to sea behind me. I became conscious, again, of the tense muscles in my face straining to keep my right eye open and only succeeding at getting it 75% open. It is not fine, and it will not be fine. That doesn't mean there can't be good in it. There is good in it I would never have anticipated, and the vigilance, the awareness of the muscles in my body working together whether or not I am trying to make them, has brought a certain gratitude it never occurred to me to have before now. Every time I notice them doing what they're supposed to do I am grateful for it, because I know it may be fleeting. We are fragile and we always have been. It's just that some of us get to experience that knowledge more directly, and at a younger age, than others.