Montmajour

So I have Ménière's disease.

The good news is that it's not fatal, and it does not involve pain. Discomfort, yes; pain, no. The bad news is that I may wind up deaf in both ears and completely disabled. I'm already partly deaf in my left ear, and have had three attacks of dizziness. Ménière's is progressive, and can take all the hearing in both ears, and can produce lengthy attacks of vertigo so severe that they're crippling. Milder cases can be, as some say, "a minor annoyance." But no one is sure what causes it, how to treat it, or even what measurable somatic state can confirm a diagnosis. I have it because I have the symptoms, and treating it will involve a lot of trial and error.

I first noticed ringing and pressure in my left ear in January. I tried to make an appointment with an ENT, but the one I saw four years ago had left town, and as a result all the remaining ENTs had waiting periods of several weeks for an appointment. I put the matter on the back burner until late summer, chiefly because I thought it was just impacted earwax, which I've had in the past and which is no big deal. But when my current ENT had a look, he said there was no impacted wax in my ear. He heard about my tinnitus, the feeling of fullness in the ear, the sound distortions that made music sound flat and people sound like androids, and he said "I think you have Minnear's disease, but don't look it up. An audiologist needs to test you, and if you know what it is, you'll start self-treating, and we might get a false negative." Very smart man, my ENT; knew exactly what I would do.

I held off until the audiologist tested me, and she confirmed that the bottom notes in my left ear are mostly gone, which is a Ménière's symptom. And yes, I've had dizziness attacks, although from what I can tell, they're pretty weak compared to how bad it can get. I haven't had any spinning at all; the world has just wobbled a little. It's been enough to make me nauseous, and make walking difficult, but I haven't thrown up or been unable to stand, so I'm thankful for that.

This week, the news is reporting the discovery of a previously unknown Van Gogh painting, "Sunset at Montmajour," which is pretty remarkable after all this time. I've read a few places that some folks speculate Van Gogh's reason for cutting off his ear may have been Ménière's disease; it's well documented from his journal and from his contemporaries that he suffered from dizziness, ringing in the ears and a sense of pressure, and if all of that built until he couldn't stand it anymore, and he took a knife to the offending ear, then possibly I have it in me to be a great painter. There's a problem with that reasoning, but I'm not going to examine it too closely.

Oh, and I get to donate my brain to Harvard! That's one of my favorite parts. Actually, they mostly want my inner ear, so they can study it to figure out the cause of Ménière's, or a diagnosis, or something about the condition. But they also ask for the brain so they can trace the path of the audial nerve and connect data on that, which means I get to donate my brain to Harvard. There's a certain coolness to that.

People are extending sympathy and offering support, and I appreciate that. So far, I haven't felt too downcast about it. I think it's probably some combination of the following:

• Right now, today, my case is very mild. The ringing in my ear isn't very loud, and the dizziness hasn't been terrible. I know it has the potential to get a lot worse without warning, but that hasn't yet sunk in. I suspect I'm still in denial about it.
• Not fatal and no pain is a lot to be thankful for. I've known folks with terminal illnesses, and I've known folks whose chronic illness caused non-stop pain. I have neither of those to face.
• I have clear, unmistakable evidence that God is sticking with me through this. It's a long story that I can lay out in a future post, but I made several changes in my life over the summer that prepared me for this. I cut out dietary triggers for the disease when I still didn't know I had it, and I scaled way back on my driving, and gave my car away, before I had any clue that my symptoms might force me to give up driving permanently.

So the world has changed a lot, and likely will continue to change, but I've actually been waiting for the shoe to drop and something major about my health to take a turn. I had a few hours of intense longing for my previous wholeness, but the sun came up the next morning and continues to come up, and as I take stock of the resources and options I have available, I'm very encouraged. Life goes on.