When Life With Multiple Sclerosis Feels Like 'It's Always Something'
When a friend broke up with a girlfriend a while back, he cited her proclivity for drama as the reason for his final, reluctant, decision to split. “It’s always something with her,” he told us with profound sadness. I understood where he was coming from. She’d gone through a lot — family stuff, health stuff, life — and was really just entering into what would be the next major leg of her journey to self-discovery.
I felt horrible for both of them. When I’d been officially diagnosed with multiple sclerosis a few months prior, we’d celebrated life with them. My husband had taken me to one of our favorite domestic cities, where they happened to live at the time, in his mind’s beautiful hope of distracting me from my very new daily ritual of wincing, writhing, and denying the pain of my self-applied subcutaneous medicine injections.
It worked! She became an instant distraction as a new friend, which I’m sure if I examined it further has it’s own obvious psychological roots. Her state of insecurity about her health and the underlying brewing trauma that accompanies such things matched those unacknowledged feelings of my own. I hadn’t been aware of how lonely I’d felt with those pieces swimming around in my head. Tina Fey, in her book “BossyPants,” says gratefully of Amy Poehler’s joining her at Saturday Night Live that she felt instantly as if “my friend is here, my friend is here!” Hindsight ditto, TF.
When they separated shortly thereafter, at perhaps one of the most inopportune times one could do so, my heart ached for her. But a few years later, I would egregiously, unknowingly push and push my husband out the door in a manner that I can only describe as a self-fulfilling prophecy of the most f**ked up kind. He told me the same thing — “It’s always something with you.” Through the tide of deep shame that brought me under and under like the waves I love to play in on Hawaii, I knew he was right.
I crumbled. In that moment, I saw shards of my once beautiful life lying busted and haphazardly around me. I’d somehow let myself become my own mental enemy, desperately fighting to stay afloat in a life that didn’t support me despite the warning signs that echoed those of my body when it had first turned sideways on me years before. Yet, apparently I’d expected him to fight the good fight to keep my spirit alive.
Who am I? Is this me or the disease?
It didn’t matter anymore. Either possibility was cause for a major depression dive. Anxiety immediately followed suit as I judged myself against my old self, and judged my old self against my new self, and both of my selves against the humanity I saw around me and felt in my memories. None of it fit, none of it made sense. I felt like I’d gone plaid. Silver lining: maybe that’s just the vertigo that comes with my MS. You really have to want to see it.
When I was first finding out that I may be sick, I thankfully stumbled across a book written by a personally unknown but peripheral press colleague in New York. The scary candor of “Brain on Fire: My Month of Madness” by Susannah Cahalan somehow made some of the not knowing of my own situation bearable. I felt intense relief at the time just by having an example of something remotely similar. However, in all my second career naivety, I’ve held onto her title somewhere in my psyche, pinning myself to an arbitrary timeline like “my month of” or “a year of,” which is from yet another book I read over and over in those devastating first few months; that’s as long as Joan Didion thought magically after losing her husband.
But MS doesn’t have an expiration date. There is no “fix” yet, so my “TBD of figuring my sh*t out” has just continued and lasted and persisted, much to my life’s detriment. Regardless of which kind you have, remitting or remitting and relapsing… it seems that MS just is. It’s there always with its consistently inconstant breakdowns in communication, between brain and body but also between me and the few thankfully intensely loyal people who remain in my life.
My neurologist told me early on that my case was “so mild” that I “was not interesting to [him].” I thought his low-key assessment to be a win in the medical world until my husband took ill and we took him to all my same specialists. Tossing him around between the dozen of them, they didn’t know what was happening with him either. He presented with a broken rib, had convulsed on the floor in my arms on multiple occasions, lost almost 50 pounds, and typed up instructions for me about the apartment technology he’d set up in case he didn’t wake up. That year+ experience in the middle of my own nonsense took any faith I had in anything, anyone, and myself. Judging by my current situation, it’s not growing back as fast as I thought it would.
So, who am I? To be honest, I’m not quite sure yet. The last few years have taken an unexpected toll and I don’t know anymore if I can put myself in the same ballpark as who I once was. As it turns out, I’m “a lot,” too. Just like my friend, I’ve gone through a lot lately — family stuff, health stuff, life — and am kicking off what is apparently the next major leg of my journey to self-discovery.
Waiting to share my experiences until that happens though seems trite at the moment. Isolation and loneliness have become huge factors in my life, and are not topics that come up enough in the nonexistent “I’m getting a chronic disease” manual. Nor does “how to help people with chronic illness” or “how to talk to people if you have a chronic disease.” It’s all quite confounding and confusing and not for the faint of heart. My old workaholic fantasies of getting nudged by a buss to welcome the peace of a brief hospital visit have been replaced — with hospital visits, waiting rooms, and self-imposed “Hank on Breaking Bad”-type physical therapy as I sequester my broken self in the guest room most days. My old workaholic social powwows that kept me laughing and loving turned into session after session of tit for tat, bad advice and ill-advised advice. I got really lost in the whirlwind of it all. I lost perspective. I lost a lot. I was ashamed to admit that. But I have to be careful with what I say here: see, I now know that shame gives me anxiety, which makes my right leg turn inward, my breathing shallow and erratic, and my mouth drool intermittently. For starters.
It really can be quite humanly hilarious if you take the pain out of it. Or transcend it. Or don’t have to live with me.
There is a bourgeoning plethora of articles about “how to live with MS.” Most are sad; most people with MS can be quite sad, it seems, myself at times included unfortunately. I fight like hell not to, but I can get really dark and very sad despite my best, yet often ill-executed, efforts at brevity. Those backfires are their own spiral.
Some outlets are starting now to address the biggest elephant in the room — social encounters when you have a fried wire system for a brain. It’s still vague and impersonal direction, though, and I am directionally challenged as it is. No one drives the same roads in life, anyway — we all have different maps with our own legends, landmarks, and passengers. And, for the record, men and women do navigate differently. Sometimes that makes a shared life and the hopeful notion I once had for an organic stem cell panacea in the form of pregnancy feel impossible.
So I will share my stories here, in whichever form I can muster as consistently as I can muster. It’s for the few masochistic enough to join alongside me, cheering and supporting my struggles; any and all of us needing a record of a shared experience to know they’re OK; and myself, selfishly, so I can see and feel the positivity and love of some kind of tribe.
Having almost nothing but time in a bed by yourself to reconfigure your head wires brings up a lot that we bury along the way. With that, I am finally taking my MS is a gift to myself, one of a cleaner slate. It feels ridiculous to say that, but we all have to start somewhere, eh?
This blog was originally published on Life…Is Hilarious.
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