The Me I Mourn

I’ve written in past posts about my profound sadness, my body grief experienced in the last ten years, and the loss and gain of hope. But perhaps you skim that sentence and think, “Body grief, what’s that?” I was not born disabled. I did not suddenly lose function or ability. I wasn’t in a traumatic accident or car crash. I have experienced a slow erosion, a gradual loss of stability and mobility over time. MS is silent and sneaky and activated by stress. I started the pandemic walking with minor difficulty and foot drop but not using any mobility aids. Now, three years later, I exclusively use a rollator and find myself at the moment, with little function of both legs.

I have hours to think, to ponder and to write, alone in my hospital bed. I find my mind wandering to the versions of me that are now lost; both from the past and also looking into the future. I think about where I’ve been, who I’ve been, and how my current disability shapes my future, preventing certain future versions of me. I’m also ruminating over the aspects of my personality that I’m choosing to leave behind.

In chatting about my blog, my mother recently shared that I need more photos. So here’s a way I can share more about me — photos included — and make my mom happy. As usual, she isn’t wrong. Read on to learn more about me and see some of the adventures from my past.

I would walk everywhere

I lived in Chicago for years, not owning a car, and walking everywhere. This was long before I had a fitness tracker to gamify my steps, but I walked every street, every block, to and from everywhere. It was not uncommon to forgo public transport and walk home several miles. It was totally normal to take conference calls on my cell phone as I walked the Chicago lakefront path. Not only did I walk the city of Chicago, I frequently did it in heels. Even the thought of wearing high heels now makes me laugh. I’m elated to leave impractical and uncomfortable shoes in my past.

I also chose vacations and holidays centered around hiking, walking, and being outdoors. While I’m more of a glamping than camping type of girl, I hiked the Inca Trail in Peru to Machu Picchu, using a bathroom tent and not showering for five days. I’ve also explored many of the National Parks in Utah and California. I was always up for the outing, down for the challenge, in other words, I was ready to go on foot whether city or country. I was happy to walk.

Now I find myself watching people walk — with ease and no perceived effort. I remember that glorious ignorance of a body that just worked. I never thought about the mechanics of walking before my gears broke down. Even now, I look at photos of me casually, blissfully walking in the water along beaches and wonder, “Will I ever be able to do that again in this lifetime?” Nobody can know.

Photos from L to R: Somewhere on the Inca Trail in Peru, Porto, Portugal, Versailles, France and on the beach in a small town near Troncones, Mexico.

I would travel anywhere

Following my MS diagnosis, I did a few things to change my life — not immediately, but a year and a half later. I quit my stable, secure job with exceptional health insurance. I was miserable there, under valued with no upward mobility. I moved from Chicago to Cleveland to be closer to family and secure healthcare at Cleveland Clinic in case I ever needed it. Quite prescient of me, but oh how I wish I had been wrong. And, most important of all, I took a life sabbatical. I put my belongings in storage, my sister agreed to watch my cats, I packed a carry-on suitcase, a purse with my lap top, and a small bag and went to Europe traveling by myself for three months.

Some cities and countries were new to me, others were old favorites. London has my heart but Vienna will always have my soul. Seriously, if you haven’t been to Austria and explored that exceptionally beautiful country, leave this blog immediately, and book your next vacation. I wanted to travel by myself, I craved it in fact. I had friends in certain cities I was visiting, and in others I met family and friends. But I carried my own bags, did whatever I wanted — explored museums and historical sites, ate and drank my way alone through Europe, and made new friends along the way. For me, travel is always a good idea, it feeds my soul. I would choose to spend my last dollar if it meant I saw a new country, new city, shared a new way of life and learned about another part of the world.

The terrifying thing is that was then, and this is now. The me from 2020 could walk airports, carry suitcases and had her independence — she was a proud, solo traveler. The me of today travels with a mobility aid, needs wheelchair transport, and probably a travel able-bodied buddy. It’s been three years since I was on a plane. I don’t even know how to travel with this new body and its limitations. What does travel look like?

I’m also more aware of the disability experience now. Hardly a day goes by without an airline destroying a passenger’s wheelchair thus obliterating their mobility and independence. This is a serious issue with little mainstream attention because able bodied individuals can’t fathom the crippling impact of losing a mobility aid. So to, with my baby immune system, what happens in the world where everyone else wants to forget the pandemic? Forget masks? Forgo social distancing? Forgoing those measures isn’t a choice for me, they are critical to my health, my life. The travel world I left is not the one I am returning to. The world has changed right along with my abilities.

Photos from L to R: Hanging off a cliff on the Aran Islands off the coast of Ireland, Bath, England, on the Charles Bridge in Prague, Czech Republic, on my 30th birthday in Venice, Italy, the gardens at the Palace of Versailles in France, Florence, Italy and strolling along the gardens of the Belvedere Palace in Vienna, Austria.

I was silly, weird and unique

I sing showtunes at top volume when I cook. Few things make me emote more than the joys and sorrows of musicals. I dance. I get weird. I move my body and emit sound. (It’s my theatre training, I can’t help it.)

I can and will talk to anyone. I am comfortable talking to anyone about anything. I feel fine sitting alone at a bar or dining by myself, no phone or book in hand. I am equally as comfortable in a large room, presenting to hundreds of people as chatting with one person.

My girlfriends in Chicago would say things like “That would only happen to Carolyn” or “That’s a total Carolyn story!” because my life has been comprised of some very weird and wonderfully unique experiences. For example, the first time I ate ceviche was at Larry King’s house in Los Angeles for Ted Turner’s book launch party. I handled a People Magazine photo shoot in Candy Spelling’s mansion. Or I somehow managed to live rent free in a beautiful two-bedroom condo in Chicago for more than a year. At a coffee shop in Vienna, the gentleman next to me asked if I would be interested in forgoing my afternoon museum plans for “12 hours of pleasure with him.” I declined random sex with a stranger but he still bought my coffee. Lastly, as one of my dear friends pointed out, “It’s not all that normal to have a stripper pole in your apartment.” Touché.

Photos from L to R: Me wearing a monster hat for no particular reason, my Los Angeles apartment complete with my very own stripper pole, a boat ride on the Chicago river for my 31st birthday and me in the State Hall of the Austrian National Library in Vienna.

I thought everything was worth trying

This tenant of my personality could go a few ways. I want to experience things for myself. But on the cliché side of things, I have bungee jumped, sky dived and gotten tattoos. I fell in love with trapeze on a girl’s wine trip to Napa and continued it for several years in Chicago as a hobby. I’ve repelled off mountains, jumped off cliff rocks and swam with sharks. I craved traveling alone, exploration, and adventure.

I dated a guy from Verizon who illegally used my cell phone number to reach out after I had purchased accessories from him at the Verizon store. I took a job with the federal government in emergency management because, “why not try and see if I like it?” I said yes to people, plans, dates. I will read anything people share if someone else recommends.

I would rather experience and form my own opinion than be scared to jump — literally and metaphorically.

Photos from L to R: C is for Carolyn in California Adventure Land at Disney Land, tripod headstand at a yoga retreat in Belize, holding a shark while snorkeling in Belize, Las Vegas, Nevada and exploring Elfreth’s Alley Museum in Philadelphia, the oldest continuously inhabited road in America.

Losses and gains and a new me

In the last decade, I became small. In the name of compromise in my marriage, I muted myself, my volume, my color, my me-ness. As I lost physical ability, my personality changed as well; I felt the walls closing in. I felt trapped — in my job, my marriage, my life. Now, let me be clear, nobody did this to me; I made each and every decision and choice. I was a fearless human who got scared. I let anxiety and depression silence my sense of adventure and exploration. I became increasingly afraid, more dependent. My world got physically smaller along with everyone else’s in lockdown, but others resumed and I remained trapped.

Along with mourning who I was, I also mourn the versions of me that will never be. I’m realistic that HSCT did not cure my MS. As much as I want to be the one in a million story, I have to accept where I am today, limitations and all. I might never walk unaided on a beach, hike a mountain, or traverse a precipitous path of cobble stones again. Spontaneity is hard, even impossible. I research parking, accessibility options, and bathroom locations. I might always need a travel companion; so no longer can a friend call with an invitation to meet somewhere in the world, and off I go. I will never be a mother — this isn’t something I necessarily needed to become but it was odd to sign away my reproductive future in order to undergo HSCT.

I would be disingenuous at best and a liar at worst if I said I was OK losing the person I described above. I’m not. So in my darkest hours, the lonely times, the defeated moments, I miss that girl with ferocity. When I’m crying on the floor of my mother’s shower, I’m thinking about the old me – the able bodied person. Our minds are assholes when we are down and out, aren’t they? I think, nay believe, that I’ll never walk again. Who would want to date me when I can’t walk, when I need a cane, rollator, wheel chair? I was abandoned for my disability once, it will happen again. Will I ever find love again? I convince myself that my friends will get sick and tired of coming to my house to hang out. How can I keep asking so much of my mom, my sister, my friends? It’s not if but when, I will become too much for those helping me.

In calmer, more level-headed times, I remember that I am still me. I know I am loved and surrounded by the best people in the entire world. My village won’t leave. I am not too much. I am reminded time and time again that my mobility is not me. I tell myself that I am a catch and the right person will accept me and love me, disability and all.

I found myself during my recent hospital stay playfully bantering with one of my Occupational Therapists. We were chatting freely with a quick and witty repartee. He helped me shower while in the hospital so I was safe while my legs were offline. He asked a benign question and I replied, “Well, it’s been a while since I was naked with a man, so that was fun!” Completely inappropriate? Yes. Did I make him awkwardly laugh and blush? Also, yes. Did I realize my hair resembles Blanche from Golden Girls, I’m wearing a baggy t-shirt and flannel pants, and I’m essentially paralyzed and covered in Shingles? Hell yes. But that banter, that unintentional flirting, made me feel alive, made me feel like a woman, and made me feel like me.

I write this now from the other side of self-reflection. I broke free of the confines of my marriage. I blew up my life, my body, all at once in the hopes of finding myself again. I’m not there yet, but I’m chasing the girl I was, in hopes that she can find the woman I am now, and I can create the future version of myself that combines the two.

I’m still me. I might write that sentence 10 or 100 more times so my mind can accept it. My mobility is not me. I am loved whether I walk from the North to the South side of Chicago or take a cab. I am valued for my mind, my humor, my imagination and my creativity. I still sing showtunes at top volume, even if I’m sitting on my rollator. And stuck in a hospital, waiting for insurance approvals, I can laugh and flirt again. My scars, my experience, my life lived improves upon the me that walked 25,000 steps a day and climbed mountains. Somehow, somewhere I will accept that I can do hard things and a new me will emerge, stronger.

Photos include pre transplant, chemotherapy hair loss, inpatient transplant and recovery including my current hospital stay.

2 responses to “The Me I Mourn”

  1. I promise you we will go to Croatia together. No matter when, no matter how, we will go someday, rollator and all. We. are. going.


  2. I have also slowly been losing my mobility due to MS
    This piece resonated with me in so many ways
    Thank you very much
    Lots of love to you xx


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