This past summer, I celebrated five years post bone marrow transplant. It was a milestone I had pictured so many times, but when it came, it felt like more of an exhalation than a celebration. Oh, I thought. I’m happy to be here now.
So why am I writing this now, five and a half years later? When I was sick with the rare disease of Severe Aplastic Anemia* (idiopathic – a fancy word for we have no clue why the f this is happening to you), I searched for hours for blogs and forums and information, for someone to reflect back to me what I was going through with a happy ending. Sometimes I found happy endings and sometimes I found sad endings, and my family could usually tell when I had been on a search binge because I had the disturbed, haunted look of someone who had seen way too many stories of illness in a short period of time. Then they would confiscate my computer and phone.
Oftentimes, people came to these forums in moments of distress, so their comments and questions did not reflect best-case scenarios. But whenever someone would comment with a note that they were three years out, five years out, a decade or 20 years out from transplant, my heart would sing. There is a life after this. There is normalcy, whatever that means in a world that’s fundamentally not “normal.” There is hope.
I also found some blogs that I liked to read and seeing other young people with similar life outlooks and in similar situations as I was in felt like a lifeline. My favorite was a blog by Kevin McDevitt, then a recently married writer/creator whose anxieties and frustrations felt all too relatable. (That blog appears to be gone now, but his hilarious music video parody of Taylor Swift’s Bad Blood is still online!)
At the time, I never wrote publicly on what I was going through, aside from a one year out post on Facebook or emailed medical updates to my friends and family. I felt too raw, too terrified. But over the summer, I posted something more public about my five year transplant-iversary and people reached out, some with their own stories of illness, blood disease and transplant. And hearing from people who had a loved one struggle in some way, or who had been through something similar, was incredibly healing.
So the idea came to me to write about some of my experiences as a way of connecting with people dealing with aplastic anemia or bone marrow transplant or just a challenging moment in life.
But Sarah, you might ask, why a blog? This isn’t 2010. Can’t you just come up with a cool app?**
Unfortunately, I don’t have any cool app ideas. All I have is the desire to write down my experiences and share them so that other people feel less alone. I also have zero technical skills. So here it is. My blog, about ten years too late for the zeitgeist.
People living with aplastic anemia, caregivers or survivors of aplastic anemia: Please feel free to reach out to me. I’d love to hear from you about your experiences, emotions, stressors, goals, plans, etc. etc. etc. I can’t answer medical questions, obviously, but I am here to serve as a resource and a happy story of successful treatment (there are many of us!)
* Real quick, what is aplastic anemia? It’s when your bone marrow basically stops doing its job, leading to a shortage in:
Red blood cells: The cells that give you energy
Platelets: the cells that clot after injury, preventing major bleeds; and, most crucially,
White cells: the cells that fight infection and disease.
**My good friend Paulina who works as a Digital Director and gave this post a read now informs me that apps aren’t even cool/current anymore. Help.