Ten years ago, my dear friend Hilary and I both had a crap year. I was diagnosed with MS, in the hospital, went almost completely blind from a relapse and was on a new disease modifying therapy where I gave myself subcutaneous shots three times a week. Hilary had unexpectedly lost her father. We epitomized the saying “misery loves company.” We would talk about how low we felt, how confused, and how lost. We reasoned, come New Years Eve, that we needed all the good luck, good vibes, good prayers, good energy that we could get. We needed 2014 to be better than 2013 had been. We needed the pomp and circumstance of New Years Eve to shower us with positivity, good cheer, and hope for a better tomorrow.
Together, we researched all the New Years Eve traditions from around the world and decided to do them all. We did not discriminate, if we could buy or cook the food, drink the beverage, wear the clothes, or make the plan — we would do it. We made a list, we wrote out what we would do in order and jumped off the couch, right foot first, the moment the clock struck midnight. We laughed and smiled our way into 2014. We did this ritual several more times over the years, altering it slightly, whenever we could get together. Through marriages, moves, and divorces, we weren’t always able to plan to be with one another.
At the end of 2019, she flew to Cleveland for 36 hours, we burned photos featuring a less-than-deserving individual from her life. Then the pandemic hit, and we reasoned perhaps we should cease this tradition immediately as we may have inadvertently caused a global catastrophe. Our coven was too strong.
Check out our non-exhaustive list at the end of this post.
Sadly, I do not have the pleasure of spending tonight with Hilary, but I find myself reflecting on the past year as well as what I hope to bring into 2024 and what I would like to leave behind.
I was at a Christmas ball party (meatballs not ornaments) with several of my colleagues-turned-friends this past week and had the pleasure of chatting with one of their 20-year-old daughters. This blonde bombshell of a young woman was energetic and hopeful. In talking to her I was struck at the difference between us, and our 20+ years. I was spellbound by her enthusiasm for everything yet-to-come in her life and also dumbfounded by her belief that it was all under her control. In one of my more seemingly sage and wisdom-filled moments, I told her I used to hike mountains and rock climb and propel down waterfalls and now I have days when I can barely walk. None of us know what life has in store so you might as well enjoy the ride and take each day — victories and challenges — with grace.
Here’s a glimpse into my year.
January
I had a month filled with firsts. I received the first doses of my baby and childhood vaccines to rebuild my newfangled immune system. I went to the theatre to support my mom in the middle of a snowstorm. I threw a Mexican themed dinner birthday party for my friend’s new partner. I was bursting with hope, possibility and renewed energy at getting my life back. I was grateful to my doctors for the opportunity they gave me and also had some no good, very bad days.
Read more: Three Things My Doctors Said and Positivity Free Zone
February
I had a brutal freaking February, and it was a month I never hope to repeat. I was knocked back to the beginning and then some and spent the majority of it in the hospital with shingles, recovering from another almost total paralysis. I reflected, stuck in a hospital bed for hours, on the versions of me I miss, the ones I mourn, the ones I will never get back.
Read more: Depths of Despair and The Me I Mourn
March
March was heavy. It started with unexpected additional disability leave from work, a stint in rehab to relearn to walk, and a struggle to take stairs, figure out life, navigate debilitating depression, and work through trauma. Please note my goal as printed on the white board in my room at rehab: “To be able to walk up stairs… and mountains.” I will never be satisfied with good enough, or ok. I have mastered the art of realistic expectations and stretch goals. Despite this very hard month, I also got my first haircut since transplant, was able to bike for 18 minutes, met a therapy dog named Sunshine, and learned that mental health is as deserving of time, attention, and healing as my physical health.
Read more: Back to Start
April
I boarded a plane and received a stamp in my passport for the first time in three years. The vacation wasn’t perfect, but I saw the ocean, swam, ate seafood, and reveled in the fact that I wasn’t in a hospital. I wasn’t in rehab. I could walk. I went back to work and the world — including my mental health — was ok.
Read more: So, did the transplant work?
May
Life slowed down and I let it. I read outside on my patio a lot. I reflected on where I would be looking forward, and how far I’ve come looking back. I pet my perfect pup and made getting down to the floor and back up again a priority. I could assuage my dog mom guilt and play with Oyster, and I could practice PT and OT principles to get stronger. Also, thanks to the “my mom is single” dog tag from a friend, Oyster became my wingman. But I struggled, quite a bit, with my appearance and feeling like “me.” I had no idea who I was or how I should look anymore. I felt disconnected from my body.
Read more: Mirror, mirror on the wall and The Change 6 Months Can Bring
June
This month included my birthday, my 10-year anniversary of an MS diagnosis, and my one-year anniversary of bone marrow transplant. So many milestones! Visits from friends, more reading, and the guilty and simple pleasure of sitting in the sun without sunscreen. Chemotherapy makes your skin more apt to burn. The previous year felt like a year of sunscreen, hats, long sleeves, being sequestered indoors, and shade. I took every opportunity to sit outside and soak up the sun.
Read more: Memory, Time & Moments
July
I saw Shakespeare in an outdoor performance and didn’t wear a mask despite being surrounded by a hundred people! I took my dog around the block for the first time in years all by myself. I went to the Asian Lantern Festival at the zoo. But most importantly, I started to regain my sense of adventure, lessening the grip fear had on me and my life, and traveled by myself to Mexico to reunite with a friend I hadn’t seen in a decade. I swam (sort of) in the ocean and did what I thought was impossible a few short months ago.
Read more: What am I living for?
August
I had a minor kitchen flood, more visits from friends I hadn’t seen since before the pandemic and was able to take care of a slew of house projects I had wanted to complete for ages. Thanks to my love of lists, some spray paint, and a new handyman, my house was 100% my house and perfectly, wonderfully, gloriously organized, clean, and full of positive energy. There may have been some burning of sage. Also, how have people learned to deal with curly hair? It’s maddening to have an entirely new hair texture after four decades.
Read more: The Mental Gymnastics of Chronic Illness
September
I had the most perfect, wonderful, amazing, once-in-a-lifetime trip with my dear mother to a place I had dreamed of visiting for 20 years — Guernsey. I had high tea, a boat ride, theatre outings, and adventure. I also fully gave over to the fact that I am no longer allergic to gluten. For the bargain price of one bone marrow transplant, I can eat croissants, and naan, and pasta galore! Bread really is the best.
Read more: Convalescing by the sea: My trip to Guernsey and Chronic Illness-Doing OK-Surviving Barbie
October
I got a stolen week with one of my besties where we cooked, talked, laughed, and cried. But, most importantly, we caught up on the entire Fast and the Furious series. I also traveled to celebrate a friend’s 40th birthday, and read, rested, and relaxed. I grappled with wedding vows and letting go of the disappointment I carried for my ex-husband. And then seemingly out of the blue, I had a gorgeous man tell me, “You know that MS is the LEAST interesting thing about you, right?” I think about the incredulity with which he said that to me, banishing my insecurities and fears of being less than. He began to mitigate some of the damage my ex had caused.
Read more: Meaningless Vows
November
MORE TRAVEL! Who would have thought? Between ironic photo shoots with friends, a visit from my childhood best friend and former next-door neighbor, and reuniting with mentors from my past, I honed my solo travel skills once again. I was less successful at learning how to tame and style my brand-new curly hair, but I can’t win at everything. I also discovered new boundaries that will have a tremendous impact on my mental and physical health moving forward. Change is uncomfortable, but sometimes we need that discomfort, like an alarm bell, to tell us we are unequivocally headed in the correct direction.
Read more: Fernweh: My 2023 travels
December
I won a long and difficult battle with insurance and was reimbursed $10,000. I had my true post-transplant follow-up MRI followed immediately by all the counterculture and “F-you to being in an MRI” I could think of. I got my nose pierced and a new tattoo. I don’t always have control over my body and what it does or doesn’t do. These were two marvelous ways that I could exert my control and also make me smile. I love them both so very very much and am reminded of rising from the ashes of 2022, suffering and persevering in 2023, to go forth stronger, braver into next year.
Read more: Speak Up: It’s pay day
I am letting go of anger. I release the illusion of control. I revel in possibility and the unknown, and I am learning every day to hold both joy and sadness, acceptance and striving for more, contentment and wanderlust — simultaneously. My days are not one thing. My life is not predetermined. I have no idea what 2024 has in store. I might burn some effigies for good measure tonight, toast to my dear friend Hilary several states away, and laugh with good friends over good food but I know, I am loved. I am safe. I am enough.
Life is pretty darn great.
My Chronic Library 
One response to “Reflections on an Unexpected Year”
You’re an inspiration to us all and a BAB for life! You’ve made a huge difference in mine and I appreciate all of your words and the love you bring to all of us daily.
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