My last Life Lately update was in June, so it’s been a long while without a substantive update. I was feeling good, positive, hopeful, and my health was trending up. I’ve found it somewhat more difficult to update when things are good. I’ve been living rather than writing. I think my rage or the general feeling of healthcare injustice, fuels my writing. I should probably examine that at some point.

The second half of the year was medically challenging. I long ago accepted that I am a medical anomaly, but I think I still had hope that there were answers. That delusion is well and done. I report my experience, listen to medical counsel, and inevitably choose the lesser of two evils. There are no good options right now. It’s an odd switch when you make decisions based on quality of life rather than the idea that something will address what ails you. I actually feel relief to have reached this equilibrium. Hope and disappointment are equally brutal.

Through it all however, my mental health has continued to improve. I am a huge proponent of therapy and finding a good match can irrevocably alter your life. My trauma therapist has been crucial to reframing my views on illness, my progressive disability, the people in my life incapable of handling MS/HSCT, and much much more.

I’m working hard to divorce my daily health report from the deciding factor of good or bad day. For the last few years if I was walking, it was a good day. If I was fatigued, paralyzed or recovering, it was a bad day. I exist these days in the middle, and I want to build back mental resilience and a buffer for my nervous system. It’s a constant battle, but I don’t want one thing to hold that much emotional power.

I always want more

It’s a common theme with me; I get something, and I want more. I perpetually view my energy stores as lacking yet looking back I did a lot the last six months while dealing with a slew of symptoms that were pretty terrible.

The last six months have been full of truly remarkable outings, fresh farm produce, gatherings, museum exhibits, dinner parties, movie nights, concerts, MetroPark walks, endless games of Sorry! after Thai food, and more.

Some highlights

I finally, FINALLY after many years had the chance to see Mumford and Sons in concert. They performed at Blossom on my actual birthday. Unfortunately, the weather gods were not with us. After five wonderful songs, an emergency weather evacuation, a monsoon, and a sprint (or push) to the car, we went home. While I would have liked to see the entire set, it was a magical evening and one of the most memorable birthdays I’ve ever had. Cold, drenched, and laughing – it was a night for the books.

As most 40-something adults do, I also threw my immune system a 3rd birthday party a few weeks later. Complete with funfetti cake, ice cream decorations, a pizza party, friends, and family, I celebrated life, my immune system and the village of people who got me through the last few years. I am so, so, so, lucky. I didn’t expect to cry, but looking around I was stunned at the sheer number of people who have showed up for me in profound ways over the last few years. There were times in 2022, in the thick of chemo after my stem cells were injected, that I thought I was going to die. I begged for death and didn’t think I could go on. To be here, years later, in my wonderful home, healthy and alive is a true gift.

Every person in attendance made my independent living possible. It was a beautiful day of love and celebration.

Self-soothe in times of stress

In all my years of therapy, I’ve never really entered into the world of “my inner child” and yet, the past few months have been full of self-soothing. When the world continues to be bonkers and my body remains unpredictable, I found myself leaning on things that historically have brought me comfort — music, creativity, and cuddles. I bought myself a teddy bear, relearned how to play the piano singing at the top of my lungs, color on a regular basis, and have gone into a Swedish Death Cleaning frenzy of downsizing. I learned about the Buy Nothing app and have had great success posting things I no longer need and connecting with individuals who come and pick them up. No mess at Goodwill. Just neighbors helping neighbors. It’s completely wonderful.

Fiction & nonfiction to dive into

I’ve had months of nonstop reading (117 book read this year to date) and also found myself revisiting tried and true books during times of stress. I will go back to The Flatshare and Something to Live For in audiobook format, time and time again. The narrators are exceptional and there is something about both of these stories that I never tire of.

I have, through my entire adult life, connected with readers and people who love books. I’ve been a part of several book clubs in every city I’ve lived. Book people are my people (and the best people in my opinion). I have the most wonderful — relatively new — book club that spans generations and brings a wealth of different lived experience. It arose out of an ongoing discussion related to Ann Patchett’s Tom Lake and has blossomed into regular gatherings with tea, cheese plates, baked goods, and dazzling conversation. In a recent read, The Joy You Make, intergenerational friendships were touted as a key to joy and connection. I couldn’t agree more.

Twice this year we met and read Shakespeare aloud. Rather than assign parts, we read the text in a circle reading the next line. We started with A Midsummer Night’s Dream and also attempted The Merry Wives of Windsor. As a classically trained actress, I was elated at the chance to dive back into Shakespeare. I portrayed Helena my junior year of college and went on in my acting days to play Titania in a production in Los Angeles. I can still recite most of Midsummer from memory. I was to say the least, stumped by Merry Wives, but we all had fun nonetheless.

One of our lovely al fresco Sunday meetings was a new book that seems to be appearing everywhere now as a ‘must read’. If you are as big a fan of The Guernsey Literary and Potato Peel Pie Society as I am, definitely check out Virginia Evan’s The Correspondent. Also told through letters it brings characters, life lessons, and a glimpse of humanity to life.

Long before Jeff Bezos’ ridiculous wedding in Venice, I had been trying — with mixed results — to break up with Amazon. If you’re looking to follow along with my reads, join StoryGraph and ditch Goodreads! For anyone curious about the true breadth of their reach, questionable business practices, and the overall lack of regulation, check out How to Resist Amazon. I am a huge proponent of the library and Libby app but if you are buying, remember to put your dollars to use in your community this holiday season. I rarely get to an independent bookstore in person these days, but Bookshop.org allows you to select your local store and share a fraction of your online sale to the store of your choice.

Disability studies, cooking, & author events

Once again, I renewed my subscription for The Writers Center Stage series which remains my favorite event in Cleveland. Whether or not you live in Ohio, I recommend purchasing a virtual subscription to hear brilliant authors talk about their writing process, latest book, what they’re reading, and more. So far this year Ian McEwan, Malcolm Gladwell, and Liz Moore have been engaging and diverse.

I still believe that books find you when you need them most. There are books I want to read that I can’t bring myself to open and others that fall into my lap unexpectedly. The below books — some old, some new — found me at precisely the right time.

---

2025 all wrapped up

There were a lot of things that occurred in 2025 that were NOT on my bingo card. Looking back however, the year is full to the brim with so much joy, connection, life, and love.

I conquered a few mental demons.

Reconfigured my self-image relating to my body and mobility.

I put some anger and resentment I’ve been long holding to bed.

I’ve regained a tiny bit of bandwidth for my nervous system.

And I continue to be surrounded by love.

Thank you to all those who read this blog. It never ceases to amaze me when I receive a comment, a call, or a downright “why the heck haven’t you been writing?” text — Gabi I hear you!

I’m humbled that you care. I’m honored that you value you my book recommendations. I’m grateful that you are curious to learn about the chronically ill and disabled experience.

Wishing you all a Merry Christmas and a joyful holiday season.

---