Transverse myelitis is no laughing matter, but it has made room for happiness Hilary Lauren hadn’t had in her life before she got sick.
One morning last spring, as the sun peeked over the trees, I settled into a chair on the porch, a steaming mug of coffee cradled in my hand. About five minutes later, my life changed.
This onset of symptoms came gradually, the tingling spreading from my toes into my feet. This new symptom had to be unrelated to the phantom wet patches I had developed on my legs a couple of weeks earlier, but my gut, to my dread, told me they were linked.
Within the month, I’d added vertigo to my disease laundry list, a drunken, staggering walk, burnt mouth syndrome, and the inability to coordinate my legs in conjunction with finer motor skills. As summer wrapped up, I picked out a cane at the drugstore.
And now, as the first snowflakes threaten, I sit at home, writing, while on short-term disability. But in an unpredictable twist, I’ve never been happier.
As I roam through the alien environment of the chronically ill, I have learned why I am more fulfilled, and that this rare disease, transverse myelitis, a bratty cousin to Multiple Sclerosis, has offered me gifts, of which I am thankful to be a recipient.
100% vulnerability is 100% giving.
This disease turned out to be exactly what was needed to take my relationship with my significant other, “the Otter,” to the next level. Whether physical frailty, emotional trust, or insecurity in how I perceived myself, showing weakness was a wall I had never before knocked down.
My children are superheroes.
The gestures they’ve made on their own, the declarations they’ve made and questions they’ve asked, “You have always taken care of us Mom, and now it’s your turn.” “Do you need help with that?” Hearing their sentiments confirms I am still useful.
My middle son announced, squaring his shoulders, “No more bullshit, mom. I’ve figured out little things are nothing to throw a fit over.” I handle things in different ways now, knowing only my children knowing love really matters, memories matter, quenching the thirst of your passion matters, family matters. Life is so basic it’s complicated.
I have a new perspective as a unique person transported from visually healthy to unhealthy.
Adding the disabled component allows people to see I am hurting, shaking, I am off balance and dizzy, and it has given me uncommon insight into why I was afraid to approach people in wheelchairs. I’d struggle to keep my eyes on their face and not let my gaze rove over their bodies to identify their medical malady. Then I’d scold myself.
Once the coin flipped, making me the one in the chair, the weirdest feeling stole over me. I wanted to alternately reassure people for upsetting them merely by being in their presence, and I wanted to hide. Those polite enough to look away, those who ignored me, I put down to the awkwardness of the wheelchair or cane, when it might be that I would be treated that way anyway, with or without wheels or my cane.
How would I know the demeanor of a stranger? How does any disabled person? What matters is how a person, disabled or not, feels they are being treated. What matters is their reality.
Being taken at face value is harder than it sounds.
Posts about invisible illnesses have been floating around social media and human interest sites lately, and we are learning more about afflictions such as MS, transverse myelitis, fibromyalgia, rheumatoid arthritis, lupus and other similar illnesses.
Before this year, I had never walked a mile in the hospital booties of one suffering with a disease most can’t detect, never imagined what it might feel like when telling people I am on short term disability, pictured how they’d regard me, a skeptical sparkle in their eye, silently assessing the effort I took into resembling a basic person; a little mascara, a touch of concealer, a dab of gloss.
Do I look sick enough? Do I look believable? It’s as if I am preparing to put on a play. I ponder applying white powder to color my complexion ashen, and picking up groceries in public with a matted crown of unbrushed hair, wearing a shirt caked with last night’s lasagna.
I am magnetic, I create my life.
When I wondered how I would make it with the crazy schedule of the job I loved, the people I adored, the family I wanted to lasso closer, I put that energy of uncertainty into the world and it came back.
I’d always worked like a driller, a drone bee collecting honey and returning, repeat ad infinitum. I operated on a shallow surface of repetitive actions and I wanted more. Of what, I didn’t know.
My younger sister attained her masters in psychology and I wanted a degree, too. I wanted to be educated enough to make a difference, resilient enough to persevere, I wanted to suffer a few punches, knowing it take knocks to grow and change. I got my wish.
I often imagine God sitting up there and shaking his head at me, saying in an omnipotent, amused tone, “What? I thought you would be happy I gave you this! You get to rest more and spend more time with your kids before these next few years fly by and suddenly they’re adults. You get your Otter, and time to reflect on your life and direction, and hey, you’re not dying! What are you complaining about now?”
In the midst of all this tingling, bobbing and weaving, this shucking off of an old life, I was welcomed to one which has brought me fresh associations, a reenergized burst of desire to write and create, and dear friendships within these networks that I will hold for years to come.
Friends and strangers are capable of unbelievable kindness.
From the coworkers I’d passed in the lunch room to the sales people I’d casually waved at from the showroom floor; from a woman on my marketing team who became the tuna fairy—leaving cans of tuna on my desk I’d find in the morning, to the nemesis who now studies me with such pity, telling me a heart beats there, the kindness has blossomed in my life.
This kindness has shown up in my superiors, men who want to father me as they break down a chain-of-command barrier and get real, as they extend a hand over a desk and force me to meet sympathetic eyes, letting me know it will be okay. I am not ashamed of my emotions anymore, of the person I have turned into, a once vibrant woman brimming with ideas, whipping around the office in my heels, now a sick, slumped scrap of myself, whumping across the carpet, my cane announcing my arrival as I execute an offbeat rolling lurch.
It is surprising when people call me strong; I am simply putting one numb foot in front of the other. Hearing it is a foreign joy. I have considered myself the poster girl for my disease. Unable to shield myself with any sort of privacy, grabbing onto walls and people’s arms who drift by to stabilize my balance, I’ve accepted offers to park in executive spots to allow closer access to the door, and had delivered a vivid red, just-my-size recliner to my cube so I could be comfortable and combat the vertigo I’d had for the past 7 months.
The outpouring I’ve received, one thousand handmade origami cranes dropped into a blue bottle, Sadako and the Thousand Paper Cranes, a moving book about a girl succumbing to leukemia after living through Hiroshima, and her undeniable strength and legacy; a gift basket jammed with every comfort: homemade raspberry jam, Green Lantern socks, stationary, organic tea, the many cards, emails, calls and texts, I have been humbled by the enormity of peoples’ hearts. I have been honored to witness the truth of such great love.
Little things are really big.
I bought a book years ago, Don’t Sweat the Small Stuff… and It’s All Small Stuff, by Richard Carlson, P.H.D, and here’s some funny irony, I’ve never once read it.
Seeking supernatural guidance or secret of how to improve life, I’d purchased it and then closed my mind to any possibility of learning what that blasted secret was. Instead, I chose to puzzle through this life lesson the hard way, by living it.
I know life must be taken one day at a time as I now measure one step at a time. I can’t commit to seeing what the future holds and I may end up in a wheelchair someday, I may wind up blind, but I will be alive, and that’s enough.
If I want my relationships and goals to succeed, I have to approach them in the same way, one day at a time, one step at a time. I have to care about each movement and each pace and let my loved ones know I do, and I have to care about me as I go along, too. I must always try to replenish myself when the plan, the body, the heart and soul need reenergizing no matter the miles walked, rolled or hopped.
When you take care of the little things, the big things you worked toward become reality. You may glimpse the milestone as you walk right on by, headed to your next destination.
Read Hilary’s follow up article, “How My Dis-Ease Made Me a Better Mother, Friend, and Lover”
Photo: Flickr/Kyle Pearce