I’ll follow you into the dark

At the end of August, I and the entire transplant community said goodbye to a dear friend. If you’d spent any time in the transplant community, you probably knew or knew of Jim Gleason. He was one of the first people to welcome me into the transplant community 2 years ago when I was a baby transplant, holding the phone inches from my face while trying to frantically google search transplant support groups because I knew I needed someone to come alongside me as I had no idea what I was doing.

What I experienced was what I imagine is similar to what new parents feel like when taking their newborn home from the hospital. "Here you go, here’s this fragile, new thing. your body has just been completely ripped apart, you can’t even get to the bathroom on your own, but best of luck!”

That isn’t the point. The point is I started googling, and I found TransplantLyfe, and I found Jim. Jim was the president of TRIO (transplant recipient international organization) and was one of the first connections I made on TransplantLyfe. Over the years our friendship grew, and he had a wealth of knowledge I grew to appreciate and trust. If I had a question, Jim probably had the answer. He mentored me, taught me what true advocacy looks like and would always make time for an email reply or a zoom call if I had any questions, which I frequently did. And it wasn’t that Jim was especially young, or that it happened out of the blue (when you live with a transplanted organ, its a pretty good assumption any time you have is borrowed to begin with), but it was more that it was my first time since being part of the transplant community that I’d lost somebody.

During my teenage years, back on a little corner of the internet that no longer exists called Starbright world, I became friends with other people who had varying chronic illnesses, and I lost some of them too. And each time it hit me the same way. You think you’re untouchable, until you’re not.

And as hard as it is, I never want to be unphased by losing people. I always want it to have the power to absolutely destroy me. That means I’m still human. And isn’t that what this was all for? If I lose my humanity in it all, does it matter that I have a few extra years?

Part of my job now is advocacy work. I talk to people like Jim, but I also talk to people who were like me. I talk to newly transplanted individuals who I imagine in their hospital beds with a screen inches from their face trying to absorb this new reality. I remember how scared I was, and how much it meant for me to have mentors and allies.

I reach out to them, meet them in the darkness and I hold a lantern: hey, I know its scary. I know its hard. You’re not alone. I’m here.

I said to a friend the other day that even though I can’t fix it, sometimes it helps just knowing you’re not alone. And ever since people did that for me, I promised I would do that for others. I will sit here holding the light, helping you find your way through the dark. We do that for each other.

Someone asked me once what I hope for the future of transplantation, and I know what they meant. Scientifically, medically, in terms of innovation, what do I want to see in the future? But more than any of that, I want support for transplanted individuals. I want there to be help and hope for those stumbling around in the dark, for there to be hands to hold onto and arms to fall into. I want to erase that gap between I am alone and I am no longer alone. I want to highlight the humanity and value of patients and their stories inside a medical world that seeks to dehumanize us.

If you ask me what I’m planning on doing with the extra years I’ve been given, it’s that. If I get to leave a legacy that will be remembered long after I’m gone, it’s that. I want to be the kind of person someone looks back at and says “Because of her, I didn’t feel so alone. She held the flashlight while I found my way out of the dark.”

I want to be that person for someone, the way Jim was for me, and the way so many other transplant recipients are for me and the way we all are for one another.

I sat down with Jim for a formal interview, and wrote an article on it which you can find on TransplantLyfe. And if you’re a patient, care partner or donor, we invite you to come join our community. No one should have to be alone in the dark.