Life Lately: June 6, 2025

I have both nothing to say and everything to convey. Let me start by writing: Life is good; I am good. I am quite skilled at narrating the bad and rather inept at sharing the good. I realized that for the first time in three years, I have more good days than bad. But how do I share that? What more do I say? I feel a vast vocabulary at the ready to articulate pain, disappointment, anger, and fear. I am less equipped to talk about the small moments of joy, surprise, delight, and happiness.

Cautious optimism or just calm?

I find myself hedging my bets and leaning on cautious optimism rather than elation because anyone with a chronic illness knows it’s the hope that kills you. But I don’t want to live that way. I don’t want to assume the other shoe is about to drop, that debilitation and disease is right around the corner. I don’t want to be defined by my illness or my mobility. I also know that we tell stories in a strict dichotomy of good and bad. People like the trainwreck, want the gossip, and lean in closer for the scandal but we often gloss over peace, joy, contentment, and serenity. When asked how I am doing, are you ok with the answer of “living” and that being not only an acceptable answer, but a damn good one?

The quiet middle is good, not just ok

Society and media push the healing, the cure, the one in a million, the first ever. They don’t highlight stories of living with not in spite of illness. Bucket lists before someone dies, but not a life fully lived with goals along the way.

We know as a myopic society how to celebrate engagements, marriages, and babies, but we are really bad at homing in on other massive life accomplishments like divorces (I always say congratulations), completing a degree, taking a promotion, stepping down or back from work for more peace. When I started this I wanted to walk with ease again, without mobility aids, but now for me, success is feeling like I have bandwidth to tackle life’s unexpected elements. I am less mentally and emotionally hijacked by a bad day. I savor and celebrate small victories like walking up and down the stairs in my home not just once a day but sometimes twice or three times. It’s not health or disease, black or white. It’s the spectrum in between. Most of us exist in the middle.

My writing evolution

What started as a way to help others undergoing or considering a very scary medical decision has morphed into a way to exist, persist and resist. And funnily enough for a former control freak (present!), I have no control, and I vacillate between all modes on a daily basis and I’m learning to ride the wave.

I am so much more than a clinical diagnosis, a procedure, a blood test, or a mobility aid. I wasn’t cured of MS. HSCT didn’t allow me to hike mountains again. But, against all odds, I have different measures of success.

Diagnosed on my birthday more than a decade ago, my biannual check in with the marvelous Dan is fast approaching. Normally, I am ready for combat with my litany of questions. This time, in contrast, I kind of just want to say, “Hi Dan, I’m doing good. How are you?”

How am I measuring a good day?

Doing things and then doing multiple things in the same day… and then doing multiple things in the same day multiple days in a row.
Being able to handle loud noises, children’s screams, simultaneous conversations without needing to hide in a dark room with my noise canceling headphones.
Going from exhausted to recovered in less time – not days but minutes and hours.
Sleeping well, through the night, for months on end and waking rested, restored, and happy. (I do not credit HSCT with this one but give full credit to my menopause doctor and hormone replacement therapy!)
Taking a bad moment or a bad day for what it is and not trying to figure out what caused it or what I did wrong. Instead, I rest and mentally move on. My days of mental gymnastics are decreasing rapidly.
Having more things that surprise me than disappoint me.
Wearing real bras with underwire or actual support because I have the energy to put one on. (Again, don’t tell me you’re tired if you’ve never had to lay down and recover from taking a shower. I don’t want to hear it.)
Moments of balance where I am not leaning on a counter or my mobility aid and I suddenly realize I’ve emptied the dishwasher. No small feat for anyone who has ever done occupational therapy.
Less response of “I can’t” and more responses of “How can I?”

Three years… THREE YEARS have gone by! How can that feel both like yesterday and a lifetime ago? My phone and Google Photo memories remind me of chemotherapy, shaving my head, looking like death personified, friends and sister visits, cards, flowers, coloring books and more.

Despite my birthday on the horizon, I am throwing a three-year birthday party for my immune system with funfetti cake, friends, and more.

My true health update

My favorite thing to talk about right now is my Invisalign! My health updates are so boring that I can’t wait to talk to people about my teeth straightening journey and where I am in the process. It feels so beautifully mundane to go to the dentist. I get a calendar alert and it’s to change my aligner. It feels so, so, so, DULL and I’m beyond happy. Please, ask me questions about Invisalign! I’m here for it.

I am convinced that those with chronic illness and medical trauma make the best dental patients. My dentist warns me something might be uncomfortable, and I giggle. Last time I said, “I appreciate your care, but the stuff you do doesn’t even register in the top 300 uncomfortable, painful or traumatic medical things so, we’re good.”

Each day I realize what I endured and where I am now and all the places I am going.