“Really?” — I say, somehow shocked by this statement.
“There are so many jerks out there,” E insists. “But he wants to take care of you.”
Later I repeat the phrase “assholes” to my husband and we laugh about it too.
But I can't stop thinking that some part of him really wants to leave me. I keep saying this thought out loud for a few days until he finally gets angry and tells me never to say it again.
When I reflect on my life, it seems somehow accidental that I married such a good and devoted man; he doesn't even order for me in restaurants.
Moreover, when a person is unwell, it becomes even more obvious that the main thing is love, and everything else is mostly noise.
•
Since none of my MRIs showed “active” lesions, my neurologist now believes that I may not have had a classic MS relapse, but a reactivation (or “relapse”) of quarter-century-old scar tissue in my brain stem, possibly caused by an infection, although the original lesion is now too small to be detected by standard imaging. She sees no signs of disease progression and continues to predict further improvement.
Another neurologist I contacted for a second opinion, however, believes that I am in the early stages of secondary progressive multiple sclerosis, in which new lesions are not always a sign.
Six months later, I noticed significant improvements in my walking. At the beginning of summer, for the first time in months, my daily step count exceeded a mile. Just recently I ran three miles a day. “I can tell you’re feeling better because you started complaining about me again,” my husband says. Sometimes I feel almost like before; others – to a lesser extent. The pain, tingling and spasticity have also decreased, although they continue to come and go on an inexplicable schedule of their own making.
More generally, there are a lot of question marks in MS. 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 wide range of trajectories and manifestations of this disease—from mild and manageable to severely disabling—some now view it as a group of diseases rather than as one. With multiple sclerosis, the only certainty is uncertainty.
Perhaps this is why my diagnosis is so psychologically difficult. It's hard to grieve when you can't even be sure what you've lost.
•
Despite everything that has happened, I try to remain hopeful—even when I feel hopeless and, like Proust’s narrator, want to crawl back under the covers and never get up again.
The electromyography I had in May (imagine hitting my legs with an electric fence for thirty minutes straight) confirmed that I do not have ALS. In difficult moments, I remind myself of this fact.
And in June, I started a new disease-modifying treatment that uses monoclonal antibodies to deplete the problematic B cells in my body. Ideally this will prevent further inflammation and – with apologies to my insurer – it will only cost nine thousand a month. Clearly tagging me as a potential cash cow, representatives from the pharmaceutical company that made the drug emailed, texted, called (“Hi! This is Karen from Kesimpta…”) and sent me brochures and accessories: a “health pad” with decorative stickers, a “mobile refrigerator” to store my injections. “YOU GOT THIS!” reads the flap of one envelope.
I want to write back: “I REALLY DON’T KNOW!”
But because of the rain last spring, the hydrangeas in my garden went crazy over the summer. (Really, who in our current dystopia hasn’t?) And the flowers were not only gorgeous, but also a reminder of the possibility of renewal. To this end, I worked with a physical therapist to regain my strength and stamina. I find that swimming helps too, especially in the sea, where my limbs feel as blissfully weightless as the silvery fish scurrying around me.
For me, and for a country deeply gripped by autoimmune disease, the best antidote to decline is recovery. I can't wait until I'm well enough to march in the streets again. This also keeps me going. ♦
