On My Last Leg

“Really?” I say, somehow shocked by the assertion.

“There are so many assholes out there,” E. insists. “But he wants to take care of you.”

Later, I repeat the “assholes” line to my husband, and we laugh about that, too.

But I can’t stop thinking that some part of him must actually want to leave me. For several days, I keep expressing this idea out loud, until he finally gets pissed and tells me never to say it again.

As I ponder my life, it seems somehow accidental that I ended up married to such a good and loyal person; he does not even order for me in restaurants.

Moreover, when one is unwell, it becomes even more apparent that what matters most is love, and the rest is largely noise.

•

Insofar as no “active” lesions were found on any of my MRIs, my neurologist now thinks that I might have suffered not a classic M.S. relapse but a reactivation (or “recrudescence”) of quarter-century-old scar tissue in my brain stem, possibly set off by an infection, even though the original lesion is now too small to show up on standard imaging. She sees no evidence of progressive disease, and continues to predict further improvement.

Another neurologist, whom I consulted for a second opinion, thinks, however, that I am in the initial stage of secondary progressive M.S., in which new lesions are not always a feature.

Half a year later, I have seen big improvements in my walking. At the beginning of summer, for the first time in months, my daily step count surpassed a mile. More recently, I clocked a three-mile day. “I can tell you’re feeling better, because you’ve started complaining about me again,” my husband says. Some days, I feel nearly like my old self; others, less so. The pain, tingling, and spasticity have also eased, though they continue to come and go according to an inexplicable schedule of their own making.

In M.S. more generally, the question marks are legion. Not only are relapses unpredictable but scientists have yet to explain the slow and insidious degeneration that often occurs even without new lesions. Given the disease’s wide range of trajectories and manifestations—from mild and manageable to severely disabling—some now regard it as a group of diseases, rather than a single one. With M.S., the only certainty is uncertainty.

Maybe that’s what makes my diagnosis so psychologically challenging. It is difficult to mourn when one can’t even be sure what one has lost.

•

Despite everything that has happened, I try to remain hopeful—even when I feel hopeless and, like Proust’s narrator, wish to climb back under the covers and never get up again.

An electromyography test I underwent in May—imagine being zapped in the legs by an electrified fence for thirty straight minutes—confirmed that I don’t have A.L.S. At low moments, I remind myself of this fact.

And, in June, I began a newish disease-modifying treatment that uses monoclonal antibodies to deplete troublesome B cells in my body. Ideally, this will prevent new inflammation, and—with apologies to my insurer—it only costs nine grand per month. Clearly flagging me as a potential cash cow, representatives from the pharmaceutical company that manufactures the drug have been e-mailing, texting, calling (“Hey there! It’s Karen from Kesimpta . . .”), and sending me brochures and accessories: a “wellness notebook” featuring decorative stickers, an “on-the-go cooler” in which to store my injections. “YOU GOT THIS!” reads the flap of one envelope.

I feel like writing back, “I REALLY DON’T!”

But, thanks to all the rain last spring, the hydrangeas in my garden went mad over the summer. (Really, who in our current dystopia hasn’t done so?) And the blossoms were not just magnificent but a reminder of the possibility of renewal. To that effect, I have been working with a physical therapist to rebuild my strength and stamina. Swimming helps, too, I’ve found—especially in the sea, where my limbs feel as blissfully weightless as the silvery little fish darting around me.

For me, as for the country, deep in its own autoimmune-like illness, it seems, the best antidote to being laid low is to rise up. I can’t wait until I am well enough to march in the streets again. That, too, keeps me going. ♦