My Son's Bar Mitzvah Has Me Wishing For Just One Day Without MS

I wish I could leave it behind, just for a day, I thought as I stood before the mirror. Standing there in the bathroom, my legs burned from exhaustion after simply showering — the profound fatigue makes me feel like I’m carrying the weight of an extra body. In my reflection, I saw a tired mother with newly sprouted gray hairs and darkened circles beneath the eyes. But it wasn’t the natural aging process weighing on me. It was the disease that ignited in my nervous system twenty years ago.

I opened the calendar on my phone and confirmed that there were 38 days until my son’s bar mitzvah. If only I could have one day, I thought — a day in a normal body.

My son’s bar mitzvah is a symbolic beginning of his journey into adulthood. First and foremost, it’s a celebration of him, but for me it’s also a time to revel in the successes of motherhood—to praise myself for surviving every toddler tantrum, for preparing countless nourishing meals, for leading the conversations of tweenhood, and for now realizing the teenager in front of me is turning out to be a kind and astute member of society despite it all.

On my wedding day, I was four years into my search for a diagnosis. Standing became burdensome after only a minute or two and the resulting pain and weakness left me shaking and in search of a seat. My husband and I sat for our ceremony to conserve my energy. We thanked all our guests for coming at once as opposed to walking from table to table as my legs threatened to collapse. I pushed through on the dance floor, ignoring the weakness that left my legs jittery and angry. My Augusta Jones bridal gown and the makeup applied to my face hid the struggle raging within my body. It wasn’t the wedding I’d always dreamt of — it was a celebration, but it was burdened by disability.

It was only after 13 years of medical appointments that I was finally diagnosed with multiple sclerosis (MS). Now, after several years on treatment, my disease has calmed, and my strength has improved. I’ve been telling my husband that our son’s bar mitzvah is a second chance to celebrate life with a body more capable than before. But as I stood there in front of the mirror staring at my own reflection, I knew it wouldn’t be the day I imagined.

MS is a part of me, intertwined with my nervous system, and there is no separating it from my being. I can’t have one day without it.

When I daydream about my son’s bar mitzvah, it’s everything my wedding wasn’t. During cocktail hour, we mingle with our guests while sipping our signature martini. In my Jimmy Choo heels, I carry myself freely from friends to family, my body as light as a feather. After a grand entrance, the music begins and I dance all evening, barely breaking for dinner. I rock my body to Please Don’t Stop the Music and Sweet Home Alabama and every song thereafter as we celebrate the life we’ve built with our family of four. My mind is focused on enjoying the evening and no symptoms are hindering me, physically or mentally. In my vision, I have the fully functioning body I had before MS.

But it’s simply a dream.

When I’m anxious, my symptoms worsen. Emotional stress — even excitement — leads to shaky, weak muscles and instability when standing and walking. A poor night’s sleep results in severe fatigue and weakness that can impact how far I can walk for days or even weeks. “Keep yourself calm,” my mother has said to me on more occasions than I can count. “It’s not that simple,” I reply.

This disease reacts to every feeling, big and small, good or bad. It responds to changes in weather and anticipation of a busy week ahead. I become weakened instantly when I’m scared, angry, annoyed, or thrilled. My menstrual cycle works in unison with it, together becoming the enemy I’m now trying to escape. MS is a part of me, intertwined with my nervous system, and there is no separating it from my being. I can’t have one day without it.

I’m forever indebted to the neurologist who ordered a lumbar puncture and solved my medical mystery seven years ago. Because of him, I can take my children to their soccer games. I enjoy evening strolls through my neighborhood. I can even exercise and ride my bike outdoors along flat paths when I’m feeling my best. My body is compatible with life again because of my treatment and that is a distinct contrast from the years I spent undiagnosed. My good days are better than they once were and for that I am grateful. But I continue to have challenging times. On my son’s special day, I’ll still have MS.

When I close my eyes and imagine a more realistic image of that day, I see myself wearing flat shoes and a lightweight dress because extra weight and heels both deplete my strength rapidly. While guests mingle during cocktail hour, I will sit on and off because my legs need to rest and I’ll be conserving every ounce of strength for the party. I won't be able to dance every moment, but I'll push through when I can because it’s everything I’ve worked towards from the moment I began fighting for an answer two decades ago.

I can’t escape this disease even for one day, but thanks to medication, I can hope for a better day. My son’s bar mitzvah can be a step towards accepting that a better day is also worth celebrating. Maybe a better day is enough.