Most of the art things I've been doing lately are dumb doodles or more hands-on: painting little hexagonal boxes to put things in, and rearranging the bedroom furniture, and making living room layouts on graph paper for built-in track shelves and my dream furniture. I like to do things in fits and starts. I have a bevy of hobbies, and I never leave them behind entirely, but--fits and starts. Soon I'll be in a cooking phase, where all I'll want to do is make insanely complicated feasts and stink up the kitchen with homemade sauerkraut. Then I'll be into clay, then back into fashion and make-up, etc etc etc, the cycle continues. Sometimes it feels like I'm too unfocused to have a consistent hobby, but I think the real deal is that I'm interested in too many things (the art/home improvement hobbies don't even touch on my medical research hobbies) and maybe it's not so much a curse of lack-of-follow-through and more a ...gift of rotation. At least I'm doing a little something every day.
I was officially diagnosed with hEDS this afternoon. It was highly suspected, but it could have just been benign joint hypermobility syndrome (note that there is some disagreement in the literature on whether or not JHS and hEDS are dots on a spectrum or actually two different syndromes) with some other random things stacked on top of it. But today we ran through the diagnostic checklist, and it is what my doctor and I both expected. I think my case is fairly mild by comparison, though obviously not so mild that I wasn't actively pursuing medical help for it. We're starting on H1 and H2 antihistamines and a mast cell stabilizer (a medication I did not know existed, because why would I need to know that? I didn't even know what mast cells were until a couple months ago) for the suspected Mast Cell Activation Syndrome (MCAS) and we'll be figuring out how to treat the Postural Orthostatic Tachycardia Syndrome (POTS) as we go, too. Again, I don't have symptoms so bad that I'm ever bedridden for weeks at a time, but we think the MCAS is the reason for my (occasionally terrifying) brain fog and intermittent anomia, and the POTS is probably responsible for my 24/7 nausea problem--those are my current Top 2 Genie-Please-Help-Me wishes to resolve now that I've got the physical therapy tools to mitigate some of the pain. I also now know that you can use a rolling pin and a friend to push dislocated ribs back into place! Knowledge truly is power. I also found some fascinating abstracts and papers (1, 2) on the weird association of hypermobility and anxiety/panic disorders, and specifically OCD (here). How incredible/strange that all of my myriad issues are likely explained by some yet-undetermined gene* that affects collagen production, and equally strange that though my brothers are also hypermobile, and all of us have anxiety, that our anxieties have manifested in such different ways. But their brains are not mine to talk about, so I shan't.
There is something about diagnoses that lead back to desire. The nature of desire is a thing I find myself daydreaming (daywondering? daymusing?) about** recurrently. In this particular case: why is the promise of a name for what ails you so alluring? I mean, aside from ability to treat things more easily. Why do I want to know if it's a mild flu or a bad cold when the treatment for both is so similar? Why do I find a syndrome that offers no cures, only mitigating treatments, so much more comforting than a list of symptoms? I think, in my case, it has to do with (and I may have mentioned this in a previous post) a reclamation of power. Like all the stories where you know the real name of your enemy, and that allows you to curse them. Names are powerful. And I can rally against one Big Thing far more easily than I can a hundred small things. I think about the history of medicine and humanity, of the curiosities that prompt us to bestow names upon them. We like things with names. Descriptions and metaphors are great for pathos, but only when they are leading up to (or dancing around, or searching for) something with a name. We feel better when there's a word for an emotion we're feeling--so much so that there are jokes like "there's a German word for that." There's something innately human about the desire to christen things. Granted, we don't know at all what other huge-brained animals are thinking, but I doubt that blue whales worry much about giving names to what they eat, what they feel. They may communicate it--I would bet money that they communicate both those things with one another--but I doubt they take the time to label it. Perhaps that's why classical music is so brilliant and fundamentally resonant; for a moment, it lets us be blue whales.
That got a bit off-topic. I wonder of other animals tell stories? If crows start off a chatter telling their friends where the good food is at, and end up talking about their great uncle's run in with a hawk. See? This is why I have a million hobbies. How can you not wonder about these things.
FULL CIRCLE, BOOM.
I also dumped coffee, tea, and a bottle of pills on myself today, so that's my life.
*Doctors/geneticists have a fairly good idea about the genes that cause the other types of Ehlers-Danlos, but the hypermobility eludes them. There's one possible gene, TPSAB1, but I don't have any info about it on my Promethease report, which probably means it wasn't tested in my 23andMe data, or however that works. I've considered going all-in and asking my doc if we should do a legit genetic workup, but I hear that insurance companies can use that against you. As if there weren't enough ways for the US healthcare system to shart on your life already.
**Brief aside: when I say things to Daniel at the dinner table like "So I've been thinking about the nature of desire," he finds it as hilarious as he does interesting--hilarious because he, analytic philosopher to the core, ended up with a babe of the continental persuasion.