Communion Of Dreams

It’s been an … interesting … couple of months, for reasons that I’ll explain at some point in the future, when I can get into it without violating confidentiality of a client. For now, just accept that I’ve been fairly busy with a variety of projects, including the process of adding this loving big boi to our household:

That’s Marmaduke, who is about three years old, and who needed to be rehomed after the passing of an old friend of mine. We’ve been happy to give him a new home, though our other two cats are somewhat less thrilled. But no worries, he’ll fit in fine in a couple of months.

But writing about Marmaduke isn’t my goal, here.

Rather, I wanted to share something that I’ve been thinking about lately: my seeming calmness about having SCAR8.

My primary care doc retired the end of last year. So I’ve been in the process of finding a new GP, and that means filling out new patient paperwork, arranging for medical files to be transferred, etc. It also means that I’ve been thinking about how to explain my family history with MJD and what my genetic testing indicated. Because I don’t expect most GPs to have any knowledge of MJD, let alone what I evidently have — they’re just too rare.

And thinking about that, I realized that I have come to calmly accept this fact in the last few months. Why is that?

I mean, on one level it’s the sort of obscure medical problem that could make someone fall into a tailspin of depression and anger, raging about the unfairness of it all, or despairing how so-called orphan diseases are largely ignored by our medical care system. After all, this has changed my life in some significant ways. I’ve had to quit as a practicing conservator, a profession I loved and was very good at. I have more physical problems related to the disease: more pain, hand spasms, Restless Leg & Arm Syndrome, episodes of dizziness/vertigo, and some annoying lower GI and bladder issues.

But all of those symptoms are relatively minor, and there are things I can do to help deal with them. My usual Rx meds manage these new pains well. The hand spasms are rare, and I can usually just stop doing whatever it is that sets them off. Low-dose THC edibles help control the RLS/RAS and help me sleep better at night. Meclizine manages the balance and dizziness fairly well. And I’ve just learned new cues from my body to manage the GI/bladder issues. I mean, it’s not ideal, it wears me out each day and I’d rather not have to worry about it, but all in all it’s mostly just an annoyance at this point, rather than a debilitating diagnosis.

And, honestly, just knowing what is likely going on allows me a great deal of psychological space to cope with it. Because, remember, I grew up watching family members manifest symptoms of MJD before we even had a name for it. There was no genetic test for it. There was no treatment. There was no explanation for what was going on, or how to cope with it. The symptoms weren’t understood, and neither was the likely progress of the disease. It was just the family curse.

So I have a more sanguine perspective because I can afford to. I have “MJD-lite” not MJD itself. SCAR8 is rare enough that the progress of the disease is uncertain, but I am reasonably sure that I should be able to live a normal lifespan without it becoming too onerous.

And I don’t particularly want to spend any significant part of that lifespan seeking some kind of miracle cure. Medical science can be amazing, and in some really personal ways it has had a huge impact on my life (I’m thinking specifically of my stents to correct a heart defect seven years ago). But there are limits to modern medicine, and what it can do. Wasting a lot of time, energy, and money trying to seek out some elusive treatment strikes me as … unappealing. If there was any indication that there was some sort of viable treatment, I’d likely have a different opinion on this. But there isn’t.

So, better to just get on with the business of living, to the best of my ability. After all, there are cats that need petting.

Jim Downey