What July can teach those of us with MG about looking forward

Texas in July is rough. By 9 a.m., the light is blinding and the heat is oppressive. The grass has given up and gone the color of straw. Cicadas saw away at the heat. You move from one air-conditioned location to another. The spaces in between are brutal reminders that Mother Nature doesn’t give a whit about our comfort. Summer here is not a season to be enjoyed; it’s one to be endured.

Now picture instead a July morning on the coast of Maine or Rhode Island. The air smells like salt and cut grass. The water is cold enough to make you gasp and then, a minute later, it’s exactly right. There’s a breeze that never quite leaves, and by evening you want a sweater. Henry James said that “the two most beautiful words in the English language” are “summer afternoon,” and if you’ve sat on a New England porch at 6 p.m., you’ll understand what he meant. It is a July that restores you instead of wearing you down.

Two Julys, then. One that depletes, one that renews. I’ve lived both. Thinking about that contrast brought me to a passage from Joanna Franklin Bell’s novel “Take a Load Off, Mona Jamborski“:

“But here I am in July, and why am I thinking about Christmas pudding? Probably because we always pine for what we do not have. The winter seems cozy and romantic in the hell of summer, but hot beaches and sunlight are what we yearn for all winter.”

It’s a small observation with a large truth folded inside it. In the depth of a Texas summer, we dream of fireplaces and wool blankets. In January, we dream of exactly the beach we’re currently melting on. We are, it seems, constitutionally unable to want the thing that is actually in front of us.

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What courage looks like in daily life with myasthenia gravis

When looking back becomes the injury

Nostalgia is a backward-facing emotion, but its pull is strong. Psychologists describe it as a kind of self-soothing. When the present feels uncertain or difficult, the mind reaches for a version of the past that has already been resolved. A place already survived and made safe by the simple fact that we got through it. The past has an ending we know. The future doesn’t. That alone makes looking backward feel safer than looking forward, even when the past we’re picturing has been quietly polished into something better than it actually was.

Those living with chronic illness know this pull intimately. For people with conditions like myasthenia gravis (MG), the years before diagnosis take on an almost mythical shine. A time before the fatigue, the double vision, the words “autoimmune” and “chronic.” There was a person who could stay up late and carry the groceries in one trip. Someone who didn’t have to think about their own body all day long. It’s tempting to look at that person as the real self, while the person with the illness is a diminished substitute.

But here is the uncomfortable truth. That pre-diagnosis self may not have been quite as wonderful as memory insists. And even if it was, it isn’t coming back. The years before are gone in the same way the winter is gone in July. Accepting that fact, fully and without bitterness, is one of the hardest and most important steps in living well with MG. It doesn’t resolve the tension between the limitations illness imposes and the very human wish to be free of them. But acceptance changes your relationship to it. It stops being a wound you keep reopening and starts being a fact you can build a life around.

For a long stretch after my MG diagnosis, I found myself constantly looking backward. I didn’t just long for the past; I searched it for clues. What caused MG to enter my life? Was it stress? The infection I shrugged off? Something I ate, did, or didn’t do? It was as if enough scrutiny of the past could explain the present and somehow undo it.

Shakespeare understood this kind of spiral long before autoimmune diseases had a name. In “King Lear,” Lear catches himself circling his own grievances and injuries and says, “O, that way madness lies.” He isn’t claiming the past doesn’t hurt or that the injustice wasn’t real. He’s recognizing that dwelling there leads nowhere good. Looking back becomes the injury.

Then Lear adds, “let me shun that.” Not “let me forget it.” Shun it. Choose not to go there.

That’s what July reminds us. The past is real. The present asks hard things of us. The Texas heat is still the Texas heat; illness brings limitations. But we are not powerless. We can choose to face forward toward the cool morning that’s coming, toward the life that’s actually in front of us, rather than the one we’ve left behind.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.