Early yesterday morning, I posted this piece about being home from the hospital post surgery and where things stand. It's background for what I'm writing today, but I'll try to write this one as its own piece without relying on prior reading.
So first: Myasthenia Gravis-- I will give my usual summary. This is an autoimmune neurological disorder. It affects voluntary motor neurons by convincing the immune system that these neurons need to be attacked. It can vary considerably, but commonly manifests itself with double vision and drooping eyelids, and can include other symptoms as well (difficulty speaking and swallowing are common). That's where my symptoms ended, but in some cases it affects movement of limbs and even the lungs.
The very short version is that the muscles work fine and the brain works fine but the communication between them is disrupted.
I was diagnosed with this disease in late June and have been struggling with it ever since.
But as I write this, right here, right now, I have no discernible symptoms. This thrills me and excites me, but it also kind of scares me, because I know this may be permanent, but I also know it may not.
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A little more background: a common approach to treating Myasthenia Gravis is removal of the thymus gland. This is a gland which is active until puberty, but generally shrivels to nothing by adulthood. It's an important aspect of the immune system for kids, but not for us adults, and it's common for people with Myasthenia Gravis to have an active thymus. In some cases, the thymus is removed in order to treat the illness. This has mixed results but can be extremely effective. There are lots of questions about it.
In my case, however, there was a twist which is that my thymus had a tumor on it.
And that's kind of where this story begins.
There are two things you need to know about the thymus:
(1) it's located beneath the breastplate. That means that to remove it, you have to get under the rib cage. When there is no tumor present, this can be done through a fairly simple process that uses small tubes and scopes to get under the breastplate. This can be done with a minimum of hospitalization and the recovery time can be as little as just a week or two.
(2) thymus tumors are not like many tumors. They spread like crazy-- the slightest disruption can send little trails throughout the system. This means you can not just go in and dissect a thymus with a tumor. You need to get a look at the whole system and pull the entire organ out intact.
If you put 1 & 2 together, you may have a picture of where this is going. To get to my thymus, the doctor had to actually open up my chest, cut open my sternum (as she put it, kind of excitedly, "with a saw!") and get a full view of everything to get it all out.
This happened a week ago Monday. The recovery time for this is extensive. It takes about a month to recover well enough to resume normal activities, and another few weeks before I feel fully intact again. The good news is that everything went extremely well: the margins were very good, she was able to remove everything whole without any issues.
The bad news is that there was a complication, followed by a second surgery. There's a whole lot of stuff that can get damaged while you're rooting around near the heart and lungs and one of those things is the thoracic duct. I don't entirely get the anatomy behind all this, but the short version is that foodstuff from eating was getting into that duct, so she needed to go in for a second surgery to tie it off and redirect the food stuff into a more proper location. So instead of getting to go home after 4-5 days, I ended up in the hospital for 11 days, some of which were incredibly strange.
By "incredibly strange" I mean that for a day after coming out from anesthesia after that 2nd surgery, I was not entirely sure that everything that was happening was happening. I would feel things on the back of my head and not know if anyone had actually touched me there. I would think I'd had conversations that I wasn't sure had actually happened. I was okay, but kind of really out of it and some of that period is still a blur for me.
I'll explain something else that I know some of you are familiar with that's kind of new to me since the last few months, since I'd never been hospitalized long-term before: being in a hospital for an extended period starts to rob you of your sense of being a person. I don't mean that this is done with bad intent. They very much want to take care of you and help you and provide you with what you need, but the dynamic of being completely reliant on strangers for everything is a bit like being a prisoner, and there were times in there where I don't think I quite understood the concept of "identity."
There was one point in particular where they were trying to get me into a stretcher to get me to x-ray but it was complicated because of the various tubes coming in and out of my body. This wasn't anyone's fault, but in the process of doing this, there was another patient on the floor who had full view of what was happening and I noticed him craning his neck to get a view up my robe. I was annoyed by this, but it took me about ten minutes to realize how completely unacceptable this was. Under other circumstances, I would have easily objected right there on the spot, but given how much I'd felt like I lost my personhood I just didn't think of it as abnormal for the moment. Once my head cleared, I made a point of telling the nurse-- I wanted to explain to her-- I didn't blame anyone for it-- it was a simple mistake, but they want to be a little more careful about how they position patients when getting them onto those gurneys and who might be looking without them realizing.
But the thing is, it took a lot of concentration for me to remind myself that I was in the right to complain in this case. I'm new to the whole disability thing but I find myself thinking that this must be very common, especially for people with relatively high levels of disability who end up relying on direct care from strangers or semi strangers-- this sense of just not being you in quite the same way you should be. I'd love to hear in the comments if this is common, because it was a revelation for me.
So. Today.
Today I am in a bit of pain. I am home since Friday afternoon. I slept a bunch Friday and I am now back to not sleeping enough. I am managing the pain well enough. It will be weeks before my sternum is fully healed (damned saws) and the incisions for both surgeries are relatively big and will remain as scars long-term. The pain will fade. The sternum will heal, as will the thoracic duct and the rib she accidentally broke (ouch) while getting to it.
But the Myasthenia Gravis is, right now, functionally nonexistent.
I wasn't expecting this. It's more common for the Myastheia to worsen after thymectomy and then improve gradually. It sometimes can lead to full remission, but that's rare. I may have bought myself time-- days, weeks, years, or maybe even a lifetime, without symptoms.
And I gotta say, I love this, but it feels... weird-- almost as though something is not working as it should.
And of course, part of this is just my brain getting used to being a person again and my sense of self connecting within my mind to who I am, and who I was before the Myasthenia. And some of it is a kind of learned hopelessness that can happen with certain disabilities: this sense that whatever is wrong is permanent and there's nothing you can do about it, so that when things do change, you're not entirely certain what to do with yourself.
This whole idea of "normal" has me strangely baffled-- I'm home, getting back in the swing of things (incredibly slowly, with good reason). I'm in pain, but not too much, and relaxing as best as I can.
Mostly I'm just kind of getting used to this idea that being without having to struggle just to get my vision to line up properly and not having to work to swallow is what's supposed to be happening, despite all the expectations I had that it wouldn't work this well.
But right now, I think it's best if I just enjoy it.