Another diagnosis, another hole in my life with SMA

You know that poem by Anne Boyer I love about holes? You fall into one, only to dig yourself out over weeks or months or years, only to fall into yet another hole, this one both different and familiar. Life, then, becomes a series of holes, some small and insipid, others large and painful.

I’ve always associated that poem with mental health, but over the past few years, I’ve come to tie it to physical health as well. It’s the way of things, isn’t it? Especially with chronic illness. You solve one problem, only to turn around and discover yet another problem, somehow stronger — and stranger — than the one preceding it. It’s what my friend and fellow columnist Sherry Toh once referred to as a game of whack-a-mole.

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Mole, meet mallet

Last fall, I had a particularly annoying case of tinnitus. Ringing in the ears, crackling when I swallowed, a feeling of fullness; there was no sign of infection, fortunately, so I was given some anti-inflammatory eardrops and sent on my way. The symptoms eventually resolved, so I had hoped, stupidly and naively, that it was simply a one-off.

When the symptoms flared not even a year later, I didn’t pay it much mind. I initially assumed it was my on-again, off-again friend without benefits, seborrheic dermatitis, but when my trusty antifungal shampoo did nothing, I started to worry. September gave way to October, and the crackling was accompanied by dizziness and vertigo. A course of antibiotics barely touched the problem, so after weeks of agonizing, I scheduled a doctor’s appointment.

The doctor listened to my very long, very convoluted tale of allergies and seemingly cyclical ear problems. She looked in my ears and, while there was no sign of infection, she did see evidence of fluid in my middle ears.

“I hereby diagnose you with eustachian tube dysfunction of both ears,” she pronounced with what I perceived to be the appropriate amount of gravitas.

Finally, a diagnosis! I love diagnoses. I especially love them when they are predicted by my neurologist, who I emailed in a tizzy in mid-September with a list of symptoms. (He gave me permission to do this, by the way, back when we first met. I don’t just email doctors on a whim.)

Of course, the problem with diagnoses is there isn’t always a solution. Beyond surgically implanting tubes in my ears, which would likely be more trouble than they’re worth given that my issues seem tied to allergies and fluctuate throughout the year, there isn’t much to be done.

As with so many things in life with SMA, all I can do is wait.

Head, meet hole

It’s not the symptoms that bother me, though they’re certainly annoying. It’s the uncertainty. The questions. The knowledge that, while it probably is eustachian tube dysfunction, there’s a chance — however small — that it could be something worse. Something bad.

It’s the mental load of yet another diagnosis. SMA is bad enough. Now I have a whole list of on-again, off-again conditions to juggle in the back of my head. Allergies lead to muscle tension, which leads to tension headaches or migraines, or whatever the doctors decide to call it that day. It’s exhausting always monitoring my body, checking for signs of distress, reminding myself that sometimes symptoms are just that: symptoms. So rarely life-threatening, but simply a consequence of having a body.

“Always falling into a hole,” Boyer writes, “then saying ‘ok, this is not your grave, get out of this hole,’ getting out of the hole which is not the grave, falling into a hole again.”

I always feel like I’m dying. I always feel like I have reached what Boyer calls “the final hole.” But that’s never the case, is it? I claw my way out of the grave, and while there’s always another hole, sometimes there’s a reprieve. I rest. I gather my strength. I inevitably find another hole, but that moment of triumph when you finally dig yourself out?

In the words of Boyer, “sometimes dutifully falling and getting out, with perfect fortitude, saying ‘look at the skill and spirit with which I rise from that which resembles the grave but isn’t!’”

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