On the drive home from my most recent doctor appointment, I didn’t feel dramatic or panicked. I felt quiet. The kind of quiet that settles in when something has shifted but hasn’t fully announced itself yet. I drove, followed familiar roads, and let the conversation replay in my head. This time, when he said the word transplant, it wasn’t like the first time. It is weird to have become accustomed to those words, that idea, over the last couple of years. The first time, it felt like all the air had left the room, like the floor and ceiling had suddenly flip-flopped, and I was listening from 10 feet underwater, words muffled, unable to breathe. This time it was different. When I looked at my sister and she at me, our eyes met in that quiet place between hope and acceptance. We wanted different, hoped for different, but knew the score and that I’ve been living in over-time for a while and perhaps I’ve shot my last hail Mary to save this game.
That night, at home in my own bed, sleep came and went. I think I saw each hour of the night, some for a moment, some for an hour or more. My body was exhausted, but my mind kept circling the same thoughts, not urgently, just persistently. Somewhere between waking and dozing, I realized I was no longer thinking only about what had been said in that room, but about everything that had led me there. The routines I’d built. The changes I’d made. The story I’d been telling myself about why they mattered and what they could achieve.
It was in that space, between the drive home and the restless night that followed, that something became clear.
I think part of me forgot why I started working out, taking Zepbound, and eating healthier in the first place. The last time my case was presented to the transplant panel, I was overweight and for that reason, much like Shark Tank they were out, and I was not considered a good candidate.
Somewhere along the way, maybe because I am stubborn, or because I have a deeply ingrained “watch me” attitude, I convinced myself these changes were proof. Proof that despite what “they” said, I could exercise my way out of a heart transplant. I took it as a challenge, a double dog dare to do the thing that no one else had done before, as if no one else had thought of it. Now, thinking of those words, I hear understanding and empathy. They weren’t challenging me. They were letting me know that getting healthier is always a benefit, but the goal should be to manage, not cure. They were trying to let me off the hook, and I just put myself right back on.
I tend to hear statements like that as challenges. It is how I hear most things people tell me I cannot do. My brain hears “can’t,” and my soul says, “wanna bet?” I will beg, borrow, and steal to turn the can’t into a can, the won’t into a will, the don’t into a done.
But it turns out they are right. I cannot exercise my way out of this. And instead of that realization feeling like defeat, it feels like permission. Not permission to give up, but permission to take the pressure off myself. Permission to take a breath and know that while I can do everything in my power to improve the outcome, some things simply are. Transplant isn’t an if, it is a when, and that when may be closer than I had hoped.
Letting go of that pressure does not mean I stop caring for my body. It does not mean the workouts were pointless or the changes meaningless. They still matter. They matter because they help me feel stronger, because they give me better days, because they make living in this body a little more comfortable and a little more mine.
What has shifted is the reason behind them. I can no longer chase an outcome I cannot control. I need to stop treating my body like a problem to be solved or a test I must pass to earn worthiness. I have to care for it because it is the only one I have, and because it is already doing the best it can.
There is grief in this realization. Grief for the version of the story where effort alone could fix everything. Grief for the illusion that if I just tried harder, pushed more, proved enough, I could outrun what has always been part of me. Letting go of that story is a bit painful, but I know it is necessary. It is also a relief. Relief in no longer measuring every good choice against an impossible finish line. Relief in knowing that my job is not to defeat my heart, but to live alongside it. To support it where I can, to listen when it asks for rest, and to stop demanding that it be something other than what it is.
The last couple of days, I’ve noticed an internal tug-of-war. Part of me wants to prepare everything, simplify everything, get my ducks in neat little rows. Another part of me wants to lie down more, to rest in a way that feels almost instinctual, like a bear knowing it is time to hibernate. At the same time, I want to keep moving my body, eating well, and investing in the future I still very much hope for. On the other hand, I want comfort. Small treats. Familiar shows. Soft things. (No matter how much I talk about wanting a cat, I cannot have one. Not in a box. Not with a fox. Now is not the time, and while I may whine about it, I also know it is true.)
None of these urges cancel each other out, even though they feel contradictory. They are just different ways my body and brain are trying to keep me steady in a season that is anything but.
These last few days, overwhelm and numbness seem to compete for control, and neither quite wins. What’s left is a quiet middle space. Not peaceful exactly, but contained. A kind of emotional low-power mode. I am learning that this does not mean I am avoiding what is happening or failing to process it. It means I am holding things carefully, taking them in doses I can manage.
Thinking about transplant is strange, and my feelings about it fluctuate wildly. It is complex and deeply emotional, filled with hope and terror in equal measure. The idea of how I might feel once a new heart beats in my chest is exciting, and it opens the door to images of a life I never thought possible.
I picture myself on mountain trails. I imagine morning jogs with a golden retriever (Did I borrow it? Did I steal him? Is he mine and I finally pulled the trigger on a dog named Tom Hanks?). I am doing those things purely for fun, because I am told, they can be fun when it doesn’t feel like fighting for your life. I see myself going, and doing, and being someone different, (somehow taller?), freer, less constrained by the quiet calculations and constant double-checking that shape my days now.
And then my thoughts shift to the reality of getting there. All the pieces that have to fall into place. The process of being listed, ranked, and waiting. The logistics, the uncertainty, the surrender to timelines that are not mine to control.
Then there is saying goodbye to the part of me that has shaped me into who I am, the only rhythm I have ever known. That part that I have been angry at, indebted to, bargained with, fought for, fought with, wired and medicated, all so we could blow out one more set of candles together. And of course there is the hardest part, I think, for anyone needing this particular kind of transplant, knowing that for me to receive a new heart, someone else must no longer need theirs. That truth sits heavy and unavoidable. It mixes hope with grief, excitement with reverence. It is the part that reminds me this is not a miracle without cost, but a gift born from unimaginable loss, a loss I have known, a loss I have witnessed, a loss that often feels like too high a price for someone who has squeezed 43 years out of a life they said might not even last a year.
Right now, I am holding all of this at once. Hope and fear. Gratitude and grief. Determination and exhaustion. Some moments I feel steady and grounded, and others I feel raw, distracted, or not quite like myself. None of it is performative, and none of it is permanent. It is just where I am.
If I seem different, quieter, sharper, or more emotional than usual, I hope there can be patience for that. I am learning how to live inside uncertainty without hardening myself against it. I am doing my best to show up honestly, even when that honesty looks uneven.
I still believe in forward motion. I still believe in caring for my body, in finding moments of joy, in imagining a future worth hoping for. I am simply learning that hope does not have to be loud or singular to be real. I don’t have to play the part of optimistic sick person for people to enjoy my company. Sometimes it is complicated, sometimes it is fragile, and sometimes it is just the choice to keep going, one day at a time.
Capes And Roller Skates 