Communion Of Dreams


Machado-Joseph Disease: unseen

“You seem to be in pretty good shape.”

I knew what he meant. He’s known me for about 50 years, and had seen my aunt, who I went to live with after the death of my parents, deteriorate and eventually die from what was then an unnamed disease.

* * *

There are a lot of chronic diseases that have little or no visible symptoms, but yet can have the people suffering from those diseases in agony, or unable to do routine things, or seemingly drunk/stoned. Enough so that the ‘hidden disease’ story is a trope unto itself. A lot of people who try and explain what it is like have such a disease write about what it is like to have such an invisible illness or injury. And I guess this is mine.

Now, I’m not unfamiliar with this experience. As I’ve written about, I have chronic pain from a number of old injuries, the most annoying of which has been the intercostal tear I’ve had for about a decade. There’s no obvious injury, but the pain wears me down, and limits how much energy I have for social gatherings (which usually happen in the evenings) and such. When I decide that there’s something I want to do with others, it’s mostly a matter of grin and bear it until the festivities are over, then I can take the extra meds and go fall down. My extrovert batteries and pain tolerance usually get me through such occasions with no one the wiser.

But, for me at least, there’s something different about dealing with chronic pain and having an invisible (for now) illness like MJD. Perhaps that distinction doesn’t make much sense to most people. But while I know that chronic pain brings with it a whole lot of related effects, there’s a different psychological aspect to having an incurable illness.

An anecdote from some years back may explain …

At some social event, I was chatting with an M.D. I knew reasonably well, but only on a social basis. That is, they weren’t my doctor, and there was almost no chance that I would ever see them on a professional basis. And as I said, we knew one another reasonably well. Enough so that at some point the subject of MJD running in my family came up for discussion.

My friend, upon hearing this, paused, and did a mental search. He finally found the memory he was looking for, and with brows furrowed asked me, “the neuromuscular disease that’s like Huntington’s?”

“That’s right.”

The furrowed brow changed to a bare look of disgust. “Oh, that’s … nasty.”

* * *

These days, cancer has little or no stigma. But there was a time not that long ago when it did. It was spoken of in hushed tones. Doctors often would never give a patient an honest diagnosis that included the word cancer, instead using some bullshit medical equivalent. It was that feared, because it was almost uniformly incurable and the treatments for symptoms brutal. It was basically a death sentence, and one that likely meant a prolonged and painful end.

It may be hard to believe, but I remember those days. Very clearly.

And for those who know what it is, MJD engenders something of that same reaction. I’ve seen that response in the faces & behavior of people countless times. For understandable reasons: the disease is progressive, there is no cure, and treatments are fairly marginal.

* * *

“You seem to be in pretty good shape.”

I knew what he meant. He’s known me for about 50 years, and had seen my aunt, who I went to live with after the death of my parents, deteriorate and eventually die from what was then an unnamed disease.

I had expected this. In fact, I was already used to dealing with that reaction from people. Used to explaining that this news didn’t quite mean what it would reasonably be understood to mean. Particularly by those who had seen it themselves.

I nodded. And I transferred my fork from my left hand to my right, because my left hand was spasming a little, though it wasn’t noticeable. I poked a forkful of salad, raised it to eat. “Yeah, I am. For probably the foreseeable future it will mostly be a matter of managing the symptoms to the best degree possible. I’ll know more about that when I get the full workup and genetic test results, and we start trying therapies.”

My friend looked relieved, happy for me. “Good.”

We had a pleasant lunch, and a good long catch-up after. When he left, I took my pain meds, poured a drink, and thought about what the future held.

Jim Downey


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