"Oh my god. You poor thing."
I can't count how many times I've heard that over the last couple years. And even though it's always said with genuine concern, not pity, I wince every single time. I feel bad that people don't know what else to say so I end up consoling them with "No, no. It's ok. Life goes on."
Which is an odd thing to hear from a change-resistant, high-strung Jewish girl from Philly. But we'll get back to that in a minute.
You see, since 2009, the following things have happened:
- I was diagnosed with Multiple Sclerosis.
Add a busted pickup truck, and I'd have a hit country song. But instead of crawling into a hole to lick my wounds, I've somehow become one of those annoying people who thinks everything happens for reason.
Yeah. It confuses me too.
Trust me, I'm no Pollyanna. All that shit sucked out loud. Even one of those life events would have be soul-crushing, and the combined anguish was often unbearable. I blamed the universe for taking things from me and lamented such unconscionable cruelty. I even wondered if I'd committed some karmic offense so deep it demanded blood in return.
So why am I not that "poor thing", a shuddering puddle of self-pity, anger and hopelessness?
I don't know. Something just... happened. And I'm still trying to make sense of it.
Recently, I attended my 25th college reunion. Which by itself is like, WOAH. I'm sure my classmates worried about what they looked like now, how much hair they had left, or if they'd accomplished enough in their lives to brag about.
I worried what people would think about my mobility scooter.
While I don't need it to get around day to day (although I use a cane) I knew my legs weren't strong enough to handle a full weekend of parades, picnics and parties -- all enough to exhaust "normal" people. So the scooter ("Ruby") went with me everywhere because I didn't want to miss out on a second of it.
More accurately, I couldn't bear that MS might make me miss out.
Yes, there were questions to answer when my friends first saw Ruby. Yes, I felt self-conscious at times, longing for the days I could stand for hours. And yes, I flinched when people offered their heartfelt "You poor thing" when I shared what's gone on since we'd last seen each other.
But what came next took me by surprise.
At Saturday night's big "gala" the DJ started to play 80's music and all my friends flocked to the far corner of the dance floor. Wistfully, I scooted closer, watching them dance their hearts out to the songs of our youth. My boyfriend (yes, that also happened recently) suggested we join them but I didn't want to draw more attention to my disability. I looked down at my 25+ year old Doc Marten boots - freshly shined and re-laced for the occasion -- and smiled. Maybe I could be content with them as my only nostalgic celebration tonight.
Then Madonna's "Lucky Star" came on and I couldn't sit still any longer. I stood up, grabbed my boyfriend for balance and slowly started to move to my favorite music ever. Not long after, two friends came flying over, insisting we join the rest of the group. "You want us to carry you over there? Because you belong with us. Come on". They cleared the way, and something magical happened.
Because I danced. And danced. And danced.
I knew my friends wouldn't let me fall. That they didn't see me any differently than the life-loving, Doc Marten-wearing, Madonna wannabe they knew 25 years ago. And I didn't care what anyone else thought.
A lightbulb went off.
I'll never be thrilled about having MS -- or any of the live-altering events that have happened over the last few years. But I am grateful for the person I'm becoming as a result. Someone more patient, more accepting, more aware of things I'd taken for granted before. Is that the lesson the universe wanted me to learn? Maybe one of them.
I still don't buy bumper-sticker wisdom like "what doesn't kill you, makes you stronger. You don't gain strength from not dying. It comes from living to the best of your abilities and refusing to accept the alternative. Without a chip on your shoulder. I'm learning that part more slowly.
Bad things will happen, and they will shatter everything you thought to be true. And you're allowed to indulge in some face-down-in-the-muck time. Let just a little darkness seep into your pores, fill your lungs with sorrow and your heart with fear.
Then stand up and start living your new normal. Know that your innate survival instinct will kick in and push you forward even if you don't feel strong enough. Actually, especially if you don't feel strong enough. Because when the good things happen (and they will), you'll celebrate them even more than before.
I think our truest human experience lives in the vast space between "everything is awesome" and "my life is over." So embrace your imperfect soul. Own your limitations and every inch of ground you've fought for. Bravely wear your scars with pride. Tell people you love them. And more importantly, let them love you back.
Because life really does go on.