I recently celebrated my birthday which is a weird date for several reasons. Ten years ago, I was given the life-changing MS diagnosis on my birthday. Another year, I had a relapse and was hooked up to IV steroids to celebrate my birthday. In 10 short years I went from hiking mountains to using a rollator. I had virtually no symptoms or disease burden at diagnosis and now they are immeasurable. Each year, as I got older, I also pondered how long I lived with my diagnosis. My ex-husband tried to reclaim the date for good by proposing to me on my birthday but we know how that turned out. Yet still, despite the weird up and downs I’ve experienced on my birthday, I still inherently LOVE birthdays. I love celebrations and parties and reasons to come together to document the passing of time, anniversaries and life changes.

This time last year

I was scheduled to be in the hospital on my birthday last year, beginning the rigorous and lengthy consecutive days of chemo but my admission date got pushed back. I had told my family I was getting divorced but not the world. My birthday prior to admission was a close family and friends affair in my sister’s backyard — bald head, sensitive skin and intense nausea from chemotherapy and temporary paralysis. I was in full preparation mode: packing, planning and trying to spend as much time with Oyster as possible. And, despite my sensitive skin, breathing fresh air outdoors at every chance.

Then on a Tuesday evening, my oncologist unexpectedly rang and told me there was a bed available, I would be admitted, begin transplant and my month-long inpatient hospital stay with less than 24 hours notice. Game on. One year ago today, I checked in.

For obvious reasons (read: continuous chemo for several consecutive days) I didn’t write or post a ton during that time. Days blur together in my memory so I can’t imagine the Dali-like hallucinogenic missives I would have shared had I been writing during the worst of it. It’s strange to see photos pop up in my Google memories of one year ago. I’m bald. I’m grey and puffy. I have an intense sadness and a veneer of bravery covering fear and uncertainty. I look at the photos and so many emotions arise: disgust and disappointment for my ex husband; nausea and weakness from physical muscle memory; and fatigue, fear, sadness and overwhelm. I simultaneously experienced unbearable and all-consuming loneliness, and the warmth and joy of friends, family and neighbors showing up… repeatedly… for months on end.

I also know, looking back and reliving those feelings, that I got through it.

Telling my story

I’ve begun to distill the story down to a cliff’s notes version. There are those who were in the trenches with me and then there are the people in my life I’m catching up with one year later, who had no idea this was happening. Very few people exist somewhere in the middle. It’s an odd dichotomy to go through extreme trauma and know what to say when asked a seemingly innocuous question like, “How have you been?” or “What have you been up to?” I stare, like a deer in the headlights. I tend to water the truth down, pass off the fact that I’m ok, and make it more palatable for the individual asking.

I do this in part because I don’t want to relive it. Each time I pull the memory out it’s like moldable clay not a sculpture set in stone. I hold it in my hands, remember the visceral experience, smells, tastes, tears, and physical and emotional pain. In the holding, I reinforce the emotional response of that memory — some good and some very bad. Do I want to pretend it didn’t happen? Absolutely not. But I do have to soldier on, function in this world, today and not live my life in the past. I also know I can’t survive a daily rehashing of the overwhelming year I’ve survived.

A new reason for silence

Apart from avoidance in reliving the bad, there is another, delightfully wonderful reason for my reticence to talk about transplant as of late — I’m busy living my life. I am able to do the minutiae of daily living. I’m working full time, cooking for myself, cleaning my home, and playing with my perfect pup.

I’m also reading anything and everything in sight, binge watching all three seasons of Ted Lasso for the 100th time, and getting together with friends. I’m eating at restaurants, meeting new people, and planning multiple international and domestic travel itineraries this year. Life keeps going. I am still healing, I continue to experience days where I just can’t… and I’m frustrated with the body I inhabit. But I also am driving, lifting my rollator into and out of my car, applying for jobs, and doing things again.

My updates don’t seem overly medical or interesting or big. They are quiet and personal. The things I have to share are comprised of 10,000 small victories. I tell my inner circle about these changes. I lifted my leg with ease. I did 8,000 steps. I vacuumed. I went out in public without a mask. I flirted with a stranger. I now see friends more than doctors and it’s wonderful. I am humbled by the past year. I am also proud of what I’ve done. I like this me, more and more each day even if I don’t recognize myself quite yet.

Recalibrating what’s important

Eventually I’ll dive into the mental gymnastics of goals, living in the moment, accepting where I’m at, happiness and gratitude for my body even when it’s broken, and all the in-between.

But for now, I’ll say this year’s birthday was the best yet. It was a celebration over multiple days filled with friends and family, outings to bookstores, great food, and so much joy and love.

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