One of the perks of working where I do, is that I get to meet, support, and befriend some truly inspirational people who are changing the world for the better.

We’re All One Test Away

Last Friday, out of personal need, I reached out to a physician leader (and friend) to ask for help. Through the course of our discussion and after solving my personal crisis, I posited many questions to improve the care delivery and patient experience across multiple clinical specialties for those following in my footsteps. Through the course of our chat, I shared my unedited and quite emotional experience. During our catch up I said, “I was healthy until the moment a doctor told me I wasn’t. And nothing prepares you for that.” He replied, “Carolyn, we are all one test away.”

Oof.

I don’t write this to scare anyone but hearing a world-renowned physician acknowledge our shared fragility and humanity was comforting. As I write this, I wonder if those reading think of themselves as healthy. Do you believe in the binary health/illness or ease/disease? Or have you, without catastrophe or diagnosis, learned it’s a sliding scale? Do you appreciate your health? Do you take care of yourself? Do you pity me or others you see as ill or disabled?

Do you think “it can’t happen to me” or perhaps you just hope that it won’t?

Watching My Dad

Last year, my father was diagnosed with cancer. My dad, up until this point, felt indestructible. I often thought and still do, if I just had one different gene sequence in my body from his immune system, I would not have MS. Obviously that’s all nonsense, but I lovingly refer to my dad as a cockroach. He doesn’t get sick. Or he tests positive for COVID and has no symptoms. He has major surgery and has no interest in pain medication. He not only bounces back quickly, but he comes back stronger. And then, he was diagnosed.

For more than a year he underwent radiation and chemotherapy. He sat in the same chairs where I had. We had discussions about the effects of chemotherapy, the toll it takes on your mental and physical wellbeing, and the utter incomprehension of taking a medicine that makes you feel like you’re dying, all so you don’t die.

Through the course of his treatment, and still today, he often says to me, softly and with a sad expression, “I had no idea what you were going through” and “I didn’t realize how hard it was for you.” He wants things to be better for him — faster, if not instantaneous. He has lived more than seven decades, rarely ill, bouncing back quickly, and with the idea that he would (because he always did) recover. The man survived a plane crash and wanted to get back to work immediately for goodness sake — talk about a core memory from my childhood.

I’ve watched him struggle with the horrendous dichotomy of “feeling fine” and adjusting to being told he had cancer. The mind-numbing and gut-wrenching choice of rolling the dice and hoping it will work out versus actively choosing medicine and treatment. Leaning on others for advice and counsel but ultimately being the personal who has to choose, who has to say yes to the awful medicine and eviscerating treatment. Medicine so scary that the nurses who administer it are double gowned in personal protective equipment requiring two people for safety checks because a wrong decimal point in the medication can kill.

I asked my dad if I could share his medical story and he agreed. It’s been shocking for us both I think to have a mirror of disease, treatment, and painstaking recovery. To witness personality shifts and emotional volatility. I’m ashamed to admit I’ve even been angry, or maybe jealous, that he can get better and can still heal. I’m sure despite my challenges, there are things about my journey he envies as well.

Grappling with a Diagnosis

No matter your age, the life experience you’ve gleaned, and the dreams and plans for your future, your world can change in a moment. It’s cruel really, how your world changes in an instant but the effects are infinite.

• I questioned modern medicine and thought they must be wrong.
• I eschewed a disease modifying therapy for a brief year believing I could heal the MS away with a paleo diet, green drinks, organic produce, and yoga.
• I married an undeserving man because I thought I should feel lucky that someone wanted me with MS.
• I’ve laughed, cried, raged, fought, and disassociated from myself, my family, my friends and most assuredly, my medical team.
• I worked ten times as hard as others, at the cost of my mental and physical health, to prove to those I work with that I am “normal” and to make a competing case against discrimination.
• I simultaneously don’t want my medical team in my life and also fiercely believe they should be there when I need them. (Yes, I am wildly delusional in my expectations.)
• I realize everything is hard, but things are still worth the hard.
• I may not walk as smoothly as I once did, but I have improved mental clarity and fortitude now.

I could go on and on about the roller coaster of health and illness. There are days I kick ass. And there are days when I can’t fight anymore, and I want to give up.

Each day is wonderfully and infuriatingly different.

Anticipated History

Two years ago, in the hospital with shingles, in pain and paralyzed, I wrote about the versions of me that I mourn. Healing from medical trauma, time, moving through the stages of grief, and simple personal growth has led me to a different type of mourning and loss.

I now mourn my anticipated history.

I first heard the phrase “anticipated history” listening to a Death Sex & Money podcast episode my friend Natalie recommended. Something clicked into place with those two simple words. I was never guaranteed the future I had worked for and invested in. It was never set in stone that my life would look one way. But I’m a dreamer, a planner, an adventurer. When the rug is swept out from you, swiftly and without warning, I’ve witnessed and had to come to terms with, all the ways life is forever changed. Not changed from a guarantee but changed from a plan.

Several tenants of my personality, formed long ago, project a certain type of life I had planned on. For instance, I always knew I wanted to travel the world. I was never scared. Although I didn’t venture out of the United States until I studied abroad in London, wanderlust was always present.

I wanted to prove myself at work, erroneously believing those who work hard get rewarded. I’ve long given up that lunacy that millennials in particular have bought into for most of our lives. Effort, hard work, grit, determination — whatever you want to call it — shouldn’t be for anyone else, certainly not a corporation.

I was always active. I started playing softball at seven years old. I acted, sang, and danced in plays. I started yoga during under grad and never stopped. I bungee jumped, sky dived, hiked treacherous mountains, and planned entire vacations around being outdoors. I obtained my yoga teaching certificate, traveled the world going on yoga retreats to Belize and Morocco. I walked everywhere. Movement was meditative, not punishment or something I had to do. I just always did it.

I’m Still Me

I’m the same person who hiked the Inca Trail in Peru to Machu Picchu as the one sitting on the floor next to her rollator because she can’t get up, because her legs don’t work, and her brain and muscles aren’t on speaking terms.

I’m the same person who loved and practiced yoga on a palapa in Belize as the person who has to manually move her legs to get into and out of child’s pose but still does it and still breathes.

I’m the same person who without thought climbed on the barrier to take a photo in front of the Louvre as the woman working full time at home, supporting herself, using her mind and her words to improve healthcare operations and enhance healthcare leadership.

Where I stand… err lean? Sit? Roll?

My life isn’t over. Disability doesn’t mean I stop living. My ability to walk does not change my rapier wit and biting sarcasm. But my anticipated history died. I guess the question I am dealing with now is, so what?

I miss things. I miss the idea of things. I miss the ease of things. But, do I miss the thing? Yes and no.

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