I think the medical advice of “year-long recovery” for HSCT is a misnomer. Maybe it’s too new, too untested, lacking in data, or maybe physicians and researchers try to give a vague semblance of hope to their patients about to undergo the grueling and intense treatment. Either way, one year doesn’t even begin to cover the recovery process for me.

Erin, my HSCT bestie, and I have discussed what we thought versus what actually happened quite a bit over the past 18 months post transplant. I will only speak for myself here, but I heard my doctors say “no guarantee,” “not a cure,” and “at least a year-long recovery,” but I didn’t believe them. I was going to be the exception. I was going to have a miraculous recovery. I would defy the odds. I would be walking unaided, climbing mountains, and MS would be in my rearview mirror from now on. Also, I don’t think, even in reading and research, that anything truly prepares you for what you are about to undergo.

Spoiler alert: that didn’t happen, I was not instantly cured. More than a year later, my walking is arguably worse than when I received my first round of chemo. I think it’s clear by now that I am a reflective person. I ponder, reflect, plan, and project in all aspects of my life. This quality has only intensified since the HSCT process began. In healing, which is the most non-linear, circuitous, un-plannable thing in the universe, I’ve noticed a shift recently in how I think about how I’m doing, and how I tell my story to others.

Any fans of The Good Place TV show? Healing is less a straight line, and more the show’s explanation of time: Jeremy Bearimy. (If you have no idea what I’m talking about watch Season 3 Episode 4 on Netflix for television genius.

I noticed too that it’s not a one and done scenario, but something that will always stay with me. My transplant and the arduous process isn’t the uninvited guest that MS was a decade ago, but rather a medical talisman. There isn’t a day that goes by that I don’t think about HSCT in some form — battling my now curly hair, acutely aware I no longer have a period despite my young age, a new milestone reached, or a conversation with an individual beginning the process who reaches out for guidance and connection. Now I can look at my wrist, see my phoenix tattoo, and smile.

I take a deep breath and feel proud of myself.

Tired is not fatigue

When I returned from my month-long stay in the hospital, I couldn’t do much of anything, I was a body, but a shell of a human being to say the least. It’s an indescribable feeling to be that weak, that foggy, that beaten down. A healthy person will never understand or grasp the bone-weary annihilation you struggle to come back from. I see many a conversation/dialogue amongst the chronic illness and MS community pleading others to not compare your tired to my fatigue – it’s insensitive.

As I got stronger, my blood counts rebounded, and my immune system rebuilt, I would hit new milestones. In the moment, it felt endless. Looking back, I guess they occurred quite frequently. I made dinner. I showered without needing a shower chair. I vacuumed my office. These were huge accomplishments and made me feel like I was getting better, recovering, and healing.

I’ve moved from or to and

I realized as of late, that healing means I am doing multiple things in one day, one go, one snackable movement bite. Last year I could choose to do one major activity. I could shower that day. I could order and put away groceries. I could vacuum one room. I could make myself dinner. I couldn’t do any of the previously mentioned tasks on the same day — it was too much. I also let add-on tasks go completely. Makeup? Getting dressed in real clothes? Contacts? All disregarded and dismissed in the name of energy conservation. The average person can push past their limits, call on the reserves, and muster their energy to keep going. I can’t. My body won’t let me.

Still, when I am overwhelmed, anxious, scared, or just exhausted, my body stops working. That fact has not changed. But I am recovering more quickly, I am lasting longer, my endurance has improved. Sometimes I choose to wear contacts and makeup and real clothes, not just loungewear. This is not nothing, this is in fact, everything.

I’ve (somewhat) accepted that doctors don’t know how to measure success for people like me. They have their disability scale and MRIs and neither encapsulate a day in my life comprised of 10,000 moments. I don’t blame modern medicine for this, but I recognize its limitations. I live in my body and have small but excruciatingly beautiful miracles every day. I walk one foot after the other up the stairs without pause. I properly squat to pick something up off the floor. I do multiple things in one day.

On New Year’s Eve I showered, wrote a blog post, made dinner, set the table, and hosted a dinner party for six people. And, I cleaned up everything before I went to bed. This grouping of my day, my accomplishments, my life, fuels the fire of hope for what is in store for this calendar year.

Realistic and stretch goals

I still want to climb mountains and swim in the ocean but right now it would also be cool to transition some days to a cane rather than my rollator. It would also be great to get out of a chair with no hands again. Or, getting crazy here, take the stairs in my house three times in one day rather than once or twice. It would be a glorious thing indeed to have energy in reserves and not feel the need to ration and plan my days’ exertions.

One of the things I burned in my fireplace and let go of in 2023 was “doubting my bodies ability to heal.” It’s shown me time and time again that I can recover. The muscles and nerve conduction that doesn’t often work, still sometimes does. I have extremely good days too, not just bad. I’m not wholly in control, MS lesions have taken some of that away, but I am seated firmly in the place of possibility at the moment.

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Today I have the luxury of not caring what blood count, MRI, or other traditional/western medicine metrics say about me. They don’t know. Nobody knows how to gauge my progress and my healing right now. And they aren’t living my life. My progress and accomplishments are world’s away from Erin or my other HSCTers.

So maybe just maybe, I can continue to mute what the outside world says is healthy, what doctors say my level of disability is, and instead listen to my body, celebrate my accomplishments, my milestones, and my newfound endurance.

The world of “and” is better than “or,” and has infinite potential.