You probably know me from around.
I’m that mom you see every day at your kid’s school drop-off. Your next door neighbor. Your coworker, your friend, your cousin’s wife.
But unless I’m your wife, or sister, or very close friend, you probably don’t know that I suffer from Multiple Sclerosis. That’s not because I’m ashamed of it. It’s because I’ve made a choice to keep it on the downlow, and thankfully, I’ve been blessed with a case that’s invisible enough to allow that to be a choice.
Let me backtrack.
Before I was diagnosed, I had never so much as met a person with MS. (Or so I thought… After my diagnosis, so many people came out of the woodwork that I almost started to wonder whether everyone I knew didn’t secretly have MS.) MS was just that scary thing that wheelchair-bound people came to speak to you about in elementary school assemblies.
But then, there I was, twenty-seven years old, happily doing my twenty-seven-year-old thing, when suddenly I joined the ranks of all those living with auto-immune disease.
The timing felt ironic. I was happy with my job for the first time, happy with my life for more or less the first time, and dating this intriguing new guy, who was not long thereafter to become my husband. Life was looking awesome all around, except I thought it was rather strange that I hadn’t been able to feel much of my left hand lately. Nor my torso, come to think of it.
A few MRIs and an impressive lineup of private neurologists later, it was confirmed that I indeed had MS and, since my parents were knee-deep in denial, I was left to fend for myself in the ruthless world of US medicine. Thankful though I was to have been accompanied to most of my tests and appointments by my now-husband, I still felt very much on my own.
So, I started making phone calls. Medical calls. Chizuk calls. Support calls. All kinds of calls.
The messages that came in both stunned and depressed me. Most of the mentor-type people I spoke to “enlightened” me as to how I ought to be handling this “awful” news – i.e. with heavy doses of shame and secrecy. Being inexperienced and eager to get things right, I accepted that this was the script that should be adhered to.
One person said: “You’re lucky the guy you’re dating isn’t Chareidi or it would have been over with him long ago.”
I heard: No one wants a sick person. Don’t spill the beans if you know what’s good for you.
Another said: “My cousin has been living with MS for over thirty years and nobody in his life even knows except for his wife and me! There’s hope!”
I heard: Illness only matters to the extent that people know about it. Don’t spill the frickin’ beans!
And so forth.
And so, you can imagine how caught off-guard I was when one of the people I called sang a radically different tune. She said: “Well, I think this is wonderful.”
I heard: “Wonderful? She’s a nut case!” Except that she had a pretty solid track record for being precisely not a nut case. My interest was piqued.
She continued: “I think it’s wonderful that the two of you are going through this together. If you do get married, you’ll be starting off your marriage on a foundation most new couples can hardly dream of. And the medical care that’s available for MS these days can’t be compared to what it was even ten years ago. You’ll see, this will bring so much good into your life.”
I hung up the phone elated. Because in that brief exchange, I was granted permission to rip up the stupid script of shame, despair, and secrecy that must accompany a chronic illness (if you know what’s good for you) and rewrite the narrative in my own way.
And so I did.
I chose a new narrative that framed this diagnosis as a bracha. As a rare opportunity to strip away all the chitzoniyus – the externalities of what I had previously thought made me me – and face my true self at my core. As an invitation to live with a heightened sense of spiritual attunement and gratitude for each and every day that I could speak, see, walk, use my brain, my memory, my bladder…
It’s been 5+ years since my diagnosis, and I firmly believe that ripping up my original “I’m less-than, please don’t throw tomatoes at me” script was the best thing I could ever have done for the course of my disease.
More powerful than any medication, divorcing the illness from that potentially all-engulfing cloud of darkness and shame has freed me to feel human and to live my life.
For the sake of full disclosure, I’ll admit that I don’t live in a constant state of spiritual bliss, even though I have MS. (Hard to believe, I know.)
Yes, I certainly have those moments when I want to sing from the rooftops and I feel that the entirety of the universe could never possibly be expansive enough to contain the closeness and gratitude I feel to G-d.
But on most days, I’m just regular ole me. Not all that spiritual. Not all that tapped in. Just a heck of a lotta busy. And a heck of a lotta scared.
I live with a quiet, hovering fear of what my next relapse will bring, or how many new lesions my next MRI will reveal. I wonder if and when my prognosis will shift for the worse and my case of MS will become aggressive like the cases from those school assemblies of yore.
But at least there is no shame, no blame, and no secrecy. I don’t advertise my MS simply because I’m a private person across the board. When I’m dealing with anything from dental surgery to a tough pregnancy to my lifelong illness, I prefer the deep support of the handful of people closest to me than the pat sympathy of the masses.
I struggle with my MS as all human beings struggle with life’s hardships. But even on those days when I’m entrenched in darkness and I’m sure I’ll never [walk/see/hear/you name it] again, I take comfort and joy in knowing that I’ve chosen my own narrative. That I myself am A-okay, in spite of my MS.
So, if you ever run into me getting a treatment at the hospital, or if I decide to one day “spill the beans” to you for whatever reason, please understand and respect my right to own my script. Help me bring more light to what could otherwise be a dark place.
