Saying Goodbye To A Friend

This is a CT of my actual heart. I remember when I first saw this image, it was like seeing a friend for the first time.

I am about to write down something I have only talked to my therapist about. I am going to need you, like a therapist, to stick with me, because I know what I am about to explain sounds really odd.

At my last appointment with my transplant team, I brought up my desire to be allowed to see my current heart after surgery. This is not an unheard-of thing. In fact, this desire seems to be especially prevalent in people with congenital heart disease. My doctor, while not shocked by this request, told me it could not happen. He said he could arrange a photo, but not a meet and greet, so to speak. It just isn’t something they have ever done. In the moment, I dropped the issue. It likely is a policy far above his head, and there is no reason to waste his time on the whys.

Since then, however, it is something that makes me profoundly sad when I think about it. This is where I need you to stick with me. Can you believe that wasn’t the weird part?

I personify my heart a lot. I think of it as both part of me and separate from me. I separate its actions from my own because my whole life it has seemed to have a mind of its own. My heart is stubborn and strong. It is unpredictable, but familiar. It has been both my adversary and my teammate. Even though it is failing, it is mine, and even as new symptoms emerge, there is still familiarity in it. I know what this kind of rhythm means, and what that sort of pain indicates. I cheer it on as much as I curse it out. I am both proud of my heart and saddened because I know, if given the opportunity, it might just limp along with me to the end. But that end would likely come much sooner, before I’ve had a chance to really do some living.

Now, I know my heart isn’t a person. Just like I knew my cat wasn’t a human. Stay with me. But the situation feels eerily similar. When my cat Gus, the cat who, over our time together, became a part of my soul, had a stroke, it was as close to unbearable as I’ve ever been. There was my cat, my closest companion, an animal who had been by my side through some of the hardest years of my adult life. He was still alive, but he was struggling. More than struggling, by the end, I believe he was suffering. For a couple of days, I stayed near him, pumped him full of meds, and hoped against hope that somehow, my sheer will and love could reverse the effects of what had to have been a massive stroke. He was disoriented and confused. He could barely stand or walk. He seemed comforted by me, but distressed in my short absences, and I’m talking trips to the bathroom. The cat who had the funniest attitude and expression for everything was gone, a shell remained. My heart was broken.

In the end, I had to make the only decision that love would let me make, and I let him go peacefully, hugging him until his last breath, letting him know he was a good boy, and that I knew he tried really hard. This happened three years ago, just before I went to have my first transplant evaluation. This road I am on was beginning, and while I know an animal can’t spontaneously cause a stroke, it felt like he knew I couldn’t take him with me on the journey.

This leads me to the now. To this heart. This organ that I know better than any of my others. My strong, sassy, backwards heart that has taught me every important lesson I’ve learned. It has taught me when to fight and when to rest, when to fold, when to call a bluff, and when to push all our chips in. We make an impressive pair, this heart and I. We have stunned many a medical professional, in both good and bad ways. We’ve caused our fair share of beard scratching and high-fiving over the years. It has never let me down, even when it was clearly struggling.

It is struggling now. That struggle isn’t like Gus, something I saw from the outside. It’s something I feel on the inside. It is present in every beat and breath. I know this heart in a way I have never known anything else. I know its rhythms and warnings. I know its quirks, its moods, its stubborn little tells. I have had a lifetime to learn its language.

And because I know it so well, I know this heart has done all it can. I’ve made a decision, the best one I know how to make. The one that feels compassionate for both of us, and the one I have to believe it wants me to make. Yes, I know that hearts don’t have brains.

Part of what makes this so hard is not just saying goodbye to this heart, but knowing I will have to make room for another one. A new heart will be a gift, and I know that. But it will also be a stranger in the deepest part of me, taking the lead in a place this heart has occupied my entire life. That is a strange and frightening thing to imagine. The idea of having to learn a new heart quickly, while healing, while grieving, while trusting it to carry me forward, is scary in a way I don’t think I fully know how to explain.

I know this heart has done all it can. It has been poked, prodded, wired, and patched in so many ways. As tired as I am, I know it is more tired, and yet it is hard to let it go. It feels a bit like betrayal. It feels like this time I am giving up on it, like I don’t trust its incredible will anymore. I know none of that is true, and not just because my heart doesn’t experience human emotions.

In the end, I want to see my heart to say goodbye. To tell it that it was a good heart, and that I know it tried really hard. And I want to see and hold this miraculous organ that beat every obstacle put before it, that would beat as long as I let it, and tell it that the only reason it is in my hands and not my chest is because it got me to a place where I could imagine there being more in the world, and because it made me want to know what that more might hold.

So yeah, I’m going to put up a bit of a fight. I think we both deserve to say goodbye. My therapist said he would write me a note if that helps, because he believes not only that I can handle seeing my own heart, but that it may be vital to my grief and healing process.

I am not asking to see a medical specimen. I am asking to say goodbye to my heart. Mine. The one my mom made just for me. A little broken, a little battered, but still miraculous. Still beloved. Still mine.

All I am saying is if Stonewall Jackson can have a whole grave for his arm, I think I can have a moment with my heart. I need to thank it before I let it go.

https://www.atlasobscura.com/places/grave-of-stonewall-jackson-s-arm

Not An If…

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.

Mom and Me

My mom came to visit this weekend. Sometimes you just need to see your mama before you can really, truly feel better. I haven’t seen my mom since before the bomb was dropped. Up until now, the only person in my family I have seen is my sister who was with me when I was told about the need for transplant evaluation. We were both in such a state of shock that not a lot of processing was done until well after we parted ways. It was good to see my mom, and take a bit of time to process together. To just be together.

When I was little and I had chest pain, or other heart issues, my mom would come and sit beside me on my bed and lay one hand over the left side of my chest and close her eyes. I could feel my heart beating against her hand, and she would count the beats, feel my breaths. She has done this for years. There is absolutely nothing scientific about this way of determining pulse or respiration, but I know it isn’t just me that feels better when my mama’s hand is on my heart and we can feel it beat together. I know that my heart slows down in those quiet moments, and with her hand on me, my body relaxes, my breath comes a bit easier, my mom is there and I can feel my heartbeat, and I am okay.

There is not a moment of this road I have walked without her, and we have both stumbled here and there but I know that – this heart or the next, my mom will be right there beside me, counting the beats and easing my fears.

Love you mama.