From the Archives
Beverly Cleary died, having made it over the threshold of 100 years and writing books that changed the trajectory of life for middle aged girls everywhere. The first time I read Ramona Quimby, age 8, I was in the pediatrics ward of my local hospital. I spent a lot of time there reading, and watching the plethora of MaryKate and Ashley movies they kept locked away in the movie closet, coloring pictures with the construction paper and brightly colored markers in the playroom. I don't remember anything special about this one book except for where I read it. Except that Ramona had this adventurous and big life, and reading about it made me feel sad. It was the life I wanted, the life of normalcy. For most people in hospitals, reading about the outside world provided an escape from their current reality, but for me it just reminded me of mine.
I crawled into bed at the end of the day, happy and full, and then it hit me. I think that's the way grief works, and how sometimes it doesn't come back up until the moments when one is very still. I am recreating a beautiful, crazy life in the aftermath of my transplant, and I am so grateful and amazed and humbled. It has become normal to juggle transplant coordinator phone calls between content creating and zoom calls with patient advocacy organizations, to sneak physiotherapy in beside working on my novel, to make morning coffee runs in conjunction with lab visits. I'm fluent in reading MyChart, I'm mostly used to the fact that my medication makes my real hair fall out and gives me migraines and I schedule my days around when I know I'll be feeling the side effects the most. A good Friday night sounds like crawling into bed with a mocktail and watching a transplant documentary and I've all but forgotten what the outside world is like since my last year's social outings have been hospital visits and ambulance rides. It's funny, isn't it, how once upon a time the thing that was most foreign to you can become something you wear like a second skin? I'm doing good, I'm fine, and then I crawl into bed and it hits me. I get this life, this beautiful second life, because someone died. This liver in my body that my whole life revolves around once was homed in another body. And it's like I can feel the grief still pulsating through my blood, feel the primal mourning for the one no longer here coursing through my body It becomes normal to have life and death coexisting in the same body. And sometimes it's really humbling and sad for death and life to exist in the same body.
There's this thing in the transplant world we call mitigated risk. As a transplant recipient, everything holds risk. My immune system is purposely suppressed so as to not reject my liver, but that also makes me far more vulnerable to things like the common cold or the stomach flu, or in current speak Covid19. I like the way Rob Bell says it when he says "It's not to risk or not to risk. It's which risk." That's how I like to think of it when we talk about mitigated risk. Leaving my house holds risk, going to the grocery store, going to gatherings, the people I am around, working. Each holds varying degrees of risk, moments when we have to weigh the pros and cons. Going to the grocery store could mean coming into contact with potentially harmful germs, but not going to the grocery store could mean I have no food. So I take precautions and go to the grocery store. Working in and amongst the general public means many more opportunities to potentially be exposed to germs (Especially in my pre-transplant job of working with children) so I choose to work from home, yet balancing the work/recovery balance can be a struggle, and it has meant our income has taken a hit. At some point we have to make our own choices. What's staying alive if it means sacrificing having a life? One day these risks will be bigger than just going to the grocery store or saying no to a family gathering. And when those risks come, I'll have to pick which risk I'm willing to take.
I used to write like this all the time, in numbered lists. It's how I would clear my head, bouncing from one topic to another until I was empty and all I felt at the end was peace. Now it's a Monday morning and i'm in my mid twenties, but all of a sudden feel the pang of nostalgia for my teens. I'm drinking coffee on the couch, just got off the phone with my liver transplant team, and my dog is cuddled up beside me. I never could have imagined this life when I was 16. When I was a teenager, or more specifically in my early teen years right after the big coma of age 11/12, was the first time I began to comprehend the gravity of my own illness. And it sent me into a tailspin, and I had this grief I couldn't explain. During those years I made my first fellow sick kid friends, and I joined a support group platform created by Starlight children's foundation, and I clumsily and awkwardly made my way through the stages of grief and healing. I just finished rewatching a show I watched during those teen years, usually live streaming it with my internet friends, and it was about a group of kids who lived in the hospital (Highly unrealistic but what can I say? I'm a sucker for dying kid dramas) and it hit me how much I miss that community, those days. I think of what that girl would think of me now. That girl, who was so angry and angsty and moody, who just wanted a normal life even though she didn't know what that meant, and who felt like she was dying and wasn't sure what that meant either. Now it's 10+ years later and I'm writing blog posts on my couch, and I have a new liver I fought like hell to get, and I'm stepping into this pioneering role of creating community and support for other sick kids, other transplant patients. And it's hard to fathom how many things have changed and how many have stayed the same
Here's what I know, and I don't know a lot. I'm not a superhuman. I'm not lucky or some inspiration porn manic pixie dream girl. What I am is human. And I have good moments and bad moments and I'm grateful for every one because I'm still here to live them. Almost dying changes a person. Carrying death changes you. It changed me. And all I'm trying to do is give back to the community that raised me, that shaped me. I'm trying to heal and grow and make mistakes and live a life I can be proud of. Just like you. So maybe we're not that different after all. My heartbreak made me who I am. And look at me now. You've seen my descent, now watch my rising.