I've been doing a lot with music as of late:
The above is a set of tunes I created on iPad. It's all "virtual" music-- not a single "real" instrument on there. It's been an interesting experiment. My preference is still to play guitar-- that's home base for me, but I've been weak (I will explain) as of late and unable to convince anyone to give me a smaller instrument (such as a mandolin) to work with, so in the meantime, most of what I have been doing is on the iPad, using Garageband to "play" tunes out and then using the full version of it to tweak them and their settings on my Macbook pro.
And I gotta say, this is kind of fun. I am likely to release this set as an album soon. I think the music is good enough to do so, and much of it is fun to listen to. Some is very inventive. Some is just enjoyable. Some is odd. The important thing, from my point of view, is that I enjoy it all.
But that's not really what this piece is about...
As many of you know, I was diagnosed last year with Myasthenia Gravis, a fairly obscure autoimmune disorder. I'll give my usual quick summary:
Myasthenia Gravis, in most cases, causes the immune system to attack certain neurotransmitters which are essential to certain motor functions. The effects can range from mild (occasional double vision or drooping eyes) to severe (extreme muscle "weakness" all over, inability to eat or, among the worst, inability to breathe). The disease is treatable but currently incurable, and, due to its rareness, does not receive nearly the attention (i.e., funding) that many diseases receive.
My experience with Myasthenia is that it went from mild (May - September) to somewhat bad (briefly in October), to very mild (November - early December) to very bad (December - February) to bad but not terrible (March).
The worst of it was December - early January. I could barely eat, starving slowly to death as my neurology team made futile attempts to treat me through approaches that had worked once, but not the 2nd or third time they tried.
In early January, they sent me home with a tube in my stomach, finally able to at least take in nutrition through a tube and pumps (I wrote about this in some detail in a recent Kosability piece, so I won't repeat it all here). But I was incredibly weak. My hands did not work properly, my voice was unintelligible, and I was only able to walk small amounts on my own.
That first night home, I remember in fairly vivid detail. I've been wanting to write about it for months now and I haven't been quite able to do so. My ability to swallow was so bad that I was worried I would choke on my own saliva. To a much smaller extent, I still worry about that today, but the worry is fleeting and not nearly the extreme of what I experienced before. But on that January night, I was legitimately concerned that if I fell into the wrong position, I could choke to death.
And I remember thinking that I always thought that if I were in an experience like that, that I would be experiencing an existential crisis-- one in which I questioned the worth and value of my life and the things I'd done, both good and bad throughout it.
And I remember laughing (internally-- laughing is still physically difficult for me) about that because I wasn't thinking about any of that at all. I was thinking "I love my life. I miss the good of it and I want to live long enough to get back into good shape and enjoy it again." And that was it-- all there was to it-- I wasn't caught up in philosophy or deep questions about anything. I was caught up in how do I position myself to minimize risk to my airway?
So I survived and (obviously) continue to do so today.
And I remember not telling this to my sweetie because she was already scared enough of the things she didn't think she'd be capable of doing that I knew she could handle, because she is awesome beyond her wildest imagination. And it's not about the big questions at this point. It's about "what do I need to do to make this work?"
So I am still weak (the muscles work and the brain works, but the communication between them is problematic at times), and I find physical work I used to love to be very difficult right now. I am back to work, part time, unfortunately able to do everything I truly want to be doing, but I am still doing well, and improving, slowly.
As with many things that have a long recovery arc, this will be a tough road. There will be good days and there will be bad days. Today was a middle of the road day-- I got good photos this morning and composed two of the tunes up there on the player above. I caught up on some course work. I drank coffee this morning. It was more than I've taken in by mouth in ages, which is very cool.
I didn't sleep like I should have. I feel nauseous and that's no good.
The nausea will pass eventually but not as quickly as I would like, and it's painful and uncomfortable in the mean time, which could mean more myasthenia gravis symptoms tomorrow. Or not. This isn't always the most predictable of patterns. So we'll see what tomorrow brings. Tonight won't be fun, but I'll survive it and, like every morning, I will wake up glad to be alive and looking forward to the time when my symptoms are a rarity rather than a constant. Maybe tomorrow my voice will continue to improve. Maybe I'll drink more coffee. Maybe I'll give my throat muscles a break.
And I will continue to lead a good life, surviving as best I can.