The Cape Cod Veteran’s Ball is an event that may or may not have existed. Upon googling now, I cannot find an event or organization that matches what I am about to describe, but it is the story I was told and am going to tell you. Each year, the veterans of Cape Cod would raise money for a different cause. I suppose this already makes no sense because wouldn’t they raise money for veterans? I don’t know. I was four. I was four, very cute, and very, very famous. So famous, that this particular year, the veterans chose ME as their cause. Yes, come donate your money to send poor, sick, Sage Orvis, victim of Diamond Blackfan Anemia to Disney World with her family! They raised a historic amount, yet this sum was still not enough to quench Walt Disney’s greed, so my family settled on a more humble trip to Camp Sunshine.

Camp Sunshine is a donation-based and volunteer-reliant organization which runs year-round programming for families with children suffering various illnesses. Families attend their illness-specific sessions, which provide community, fun, education, and hope. The children spend their days in a camp format rotating to different activities while the adults spend most of their time in different lectures and discussion groups.

It never occurred to me in the years since to go back. My allegiance for camps, of course, lay with Brewster Day Camp. That, and I decidedly distanced myself from my illness for most of my childhood and young adult life. It wasn’t until I attended the adults with DBA meetup a few summers ago that it was brought to my attention that this was an option. So last summer, I selflessly used a week of my PTO to volunteer at Camp Sunshine. There, I was assigned an 11 year old boy as my one-on-one and we were part of the “teen group.” As I prepared to go, my father sat me down and told me that while I would impact the children there, I cannot even imagine the hope I could bring to the parents. This disease is rare, very rare. This is the first time that many of these parents are meeting other people who have even heard of Diamond Blackfan Anemia, let alone are diagnosed with it. And as many of these people come from all across America, they are relishing the opportunity to meet with doctors who are familiar with the condition. Every non-specialist doctor I have ever met with has either admitted or not-so-successfully concealed that they are unfamiliar with the disorder and its effects. My attendance didn’t just show that you can grow up with DBA. But that you can become a pretty, funny, successful young woman, who lives in New York, has a career, a boyfriend, a full life. That may have come off as tongue in cheek, but that is what these parents see when they see me.

Coming from my bubble of high achieving, WEIRD (Western, Educated, Industrialized, Rich, Democratic), metropolitans, I don’t know many people who haven’t lived in New York, won’t one day live in New York, or aren’t at least actively choosing not to live in New York. And yet, of the few hundred attendees and volunteers, I was one of three families who lived in the city. And many of the people I spoke with were genuinely amused by the idea. It was quite powerful to be surrounded by a community of people not from SoCal or New England, who didn’t share my political views or educational background, brought by a common tragedy. I had all my meals, played camp games, and shared my story of DBA with people I would probably fundamentally disagree with on matters of gun-rights, identity politics, and what constitutes fine dining.

One day, a man with DBA, probably in his 50s, came up to me and struck up a conversation. “So you have DBA too?” “Yes I do,” I replied. “Well you seem like you’re doing quite well!” I found myself with little to do but agree. And while I am, in many ways, doing well, it was strange to hear someone say that. I suppose, I was hoping that in a community of similarly abled people, there would be more space for me to be not okay. Then again, I had gone there with the intention of proving these families that their kids can and will be okay. I mean, look at me! Never mind the fact I had a hemoglobin below 7 that week. Or that I’d been hospitalized less than six months prior for overdosing on the iron chelator I take to manage by DBA treatments. Or that I was only able to identify the symptoms as an overdose from a conversation with a 17 year old girl with DBA at this very Camp Sunshine session.

This was made even more complicated when conversations about my siblings arose. “I’m actually the healthy one” I’d laugh, trying to diffuse pitying looks. With Gwyneth’s health struggles, I felt an immense guilt that my symptoms were better understood than hers. Fatigue and brain fog would be instantly connected to my low hemoglobin. Whereas with Gwyneth, the family struggled to identify what was her brain tumor, and what was her, as if the two could or should be distinct. And yet, I also felt resentment that she struggled so much more loudly than I ever got to. And now, it feels like I will never have the chance to out perform her anguish. Because how do you one-up death?

These were the thoughts in the background of my mind as I played mini golf with teens, broke bread with mormons, and tossed and turned on my vinyl, bottom-bunk mattress.

One of my gut reactions to the experience, as with the adult meet up from the year before, was that I wanted Matt to come. Or really, anyone close to me. There are so few ways to truly bring someone into the experience of being chronically ill. And this felt like a productive one. But with that want comes hesitation. I believe that everyone’s truest desire is to be known. I also believe that that is not possible, not fully. For me, one of the most painful things is to try and share a part of yourself, and it not be seen the way you want it to be, have the impact you want it to. It is scary to show someone something and them to say “I do not understand.” It is scarier still for them to see it, understand, and say “well that’s not so bad.” So it is easier to keep the more complex things to yourself. The things that are the most meaningful.

With this blog, people I don’t necessarily have close relationships with, and those who I do, have reached out to commend my vulnerability. I don’t think any one person will know me in my entirety, but perhaps in fragments I am known across my whole network, and I think in sharing these things, I know myself better too.

Anywho, if you are looking for a way to feel better about yourself, Camp Sunshine offers sessions for all sorts of illnesses. Oh yeah, you got brain cancer week, sickle cell week, cerebral palsy week… there’s something for everyone! To check out their programming and volunteer or donate, go here: https://www.campsunshine.org/