Light & Sweet is a free bi-weekly newsletter. If you are interested in supporting me as a writer, I invite you to become a paid subscriber.
May 25, 2023
Dear reader,
I recently read the essay My Transplanted Heart and I Will Die Soon by Amy Silverstein and the tears started to fall instantly.
I’ve been going back and forth with wanting to say my piece. A lot of people have expressed their opinions on her essay. I’ve read some lovely comments, and without surprise, I've read some nasty ones.
What resonated with me the most was when Silverstein said,
Transplantation is no different from lifelong illnesses that need newer, safer, more effective medicines. Improvements in drug regimens are needed for lupus, Parkinson’s and a host of others. The key difference is that only in transplantation are patients expected to see their disease state as a “miracle.” Only in transplant is there pressure to accept what you’ve been given and not dare express a wish, let alone a demand, for a healthier or longer life.1
I’m lying in bed watching the blinds sway back and forth letting in tiny beams of moonlight. My dad used to call me a miracle child but I never wanted to be considered a miracle—I just wanted to be a child.
I wonder how long I have left. If I really had it in me to go through another transplant. If C. will regret his life choosing me, if my ex is relieved that I’m gone, if my fragile health is still a burden to others the way that it has been before. I wonder how long my OCD brain will torture me and physically exhaust me by reminding me of the risk in every germ, bacteria, virus, and contaminated surface. I wonder if I can overcome the feeling of defeat from the uncertainty that comes with my health, with living with a transplanted heart.
I’m angry at the betrayal. I’m angry at all of it. The whole system is flawed. I’m thinking of Tonya Ingram—a poet, author, speaker, and disability activist with whom I had the honor of exchanging some conversation. I felt the radiance of her soul through her words and the photos she shared. She would post the funniest memes that always made me smile. I think of how she died waiting for a kidney and how my heart breaks.
I’m thinking of my pediatric transplant team, who held my hand through so much and had to stress the importance of staying on top of my care when transitioning to the adult side. They sat me down and told me they had patients die when moving over to adult care because some really struggled with the transition. Why does society blame the patient? At what point do we recognize it’s a systematic issue and do something about it? I’m constantly advocating for myself and fighting for better care. Who wouldn’t be exhausted?
I’m thinking of the mixed information and lack of consistency throughout transplant centers. Some say yes to matcha in moderation, others say no. Some say yes to gardening if you wear a mask, others say it will be a forever no. Some say it is okay to take probiotics, others say avoid at all costs. I’m thinking of the vanilla yogurt parfait I make in the morning and my transplant friend who says, “wait—I thought we couldn’t eat yogurt?” Why is asking for a little more certainty and cohesiveness a problem?
As I sit here and write this, I feel overwhelmed with melancholy. Since when did saying, “Hey, I’m tired. Managing a chronic illness while balancing the other aspects of life feels heavy/difficult at times” equate to “You’re a selfish woe-is-me b!tch, ungrateful for your transplant.”
I came across this comment in response to Silverstein’s essay, and my jaw dropped. Yes, catbellytaco, I would love to live in a fantasyland. Some of us have been chronically ill since birth… why would we want to experience trade-offs? I go to the pharmacy and the paperwork that I kindly decline still somehow falls out of the paper bag as I grab the orange bottle of pills. It reads, warning: carcinogenic; can cause infertility. Who wouldn’t be angry at that?
I understand life is full of risks, and some have it much easier than others, but why does the trade-off have to be trauma, mental illness, cancer, kidney failure, and/or another transplant? Why wouldn’t we want safer alternatives for ourselves and future generations?
I was given the most selfless and beautiful gift of all and I’d be lying if I said I didn’t have days where I wish I existed as a lone potato in the ground. There are days where the bones in my body feel like dust and my brain turns into a bowl of soup. Why is that outlandish to admit? Where does that mean that I’m ungrateful?
Chronically ill people deserve a safe space to voice what’s deep inside, the shit that you wouldn’t tell someone who asks how you’re doing because you know they aren’t going to understand. A space that isn’t a Facebook group or Reddit. Most transplant centers now have transplant psychiatrists, which is amazing, but I’m thinking of something outside of a hospital setting. Something intentionally coordinated and crafted with love. I would love to lead creative writing workshops that work through unraveling these Big Feelings™.
Silverstein's essay reminded me that life is precious and time is limited. I make a promise to myself to never stop telling stories and share what needs to be said.
Thank you for reading! If you wish to, please give this post a like or subscribe. It helps other readers find my work and makes my day <3
✰ c. and I had a park date <3 he snapped this photo of me reading.
✰ a song I’m loving ✨
✰ my favorite dinner I made last week was a lemon herb chicken and rice dish
Silverstein, A. (2023, April 18). My transplanted heart and I will die soon. The New York Times. https://www.nytimes.com/2023/04/18/opinion/heart-transplant-donor.html
I won't ever know what it's like to live as a heart transplant recipient, but I can relate to being chronically for decades. It's tiring, confusing, frustrating, painful. I wish you love and strength. Keep speaking your truth.
I was almost 60 when I received my new heart (ARVC, happily undetected until two years before). I honestly can't imagine how much, much harder it must be for you to have gone through all that you have, at such young ages. Everything you say in this comment makes perfect sense to me. I wish I could somehow reach through the Internet to do something helpful. But I guess all I can do is to say I like your posts, and I'm rooting for you from afar. All the best, Eric