Barefoot with a beer in hand, I lazily trot across the field where about 20 of my fellow camp employees have gathered to play nauset ball. Nauset ball is a regional game that most kids who grew up in the area played in school, a combination of soccer and handball, and it is camp tradition for counselors to meet and play twice a week. It is a loosely kept secret and a cherished tradition as it provides a space to play, laugh, decompress, and enjoy one another’s company outside of work and with some friendly competition. The ball shoots past me and I take three half-hearted running bounds before resuming my leisurely pace. Someone makes a comment about how they love how I just amble amidst the game, drink in hand, not giving a shit. But, alas, I do give a shit. And more times than not I end up retiring to the hill where non-players sit and observe, with tears threatening to expose how much I hate this game.

I hate being unathletic. I hate running out of breath within two minutes of genuine effort. It is humiliating to be actively avoided, to be unable to run back and forth with the same stallion like energy of those around me, to fumble the ball on the rare occasion I’m in possession of it. Aside from a t-ball and soccer stint at age five or six and a season of volleyball in 6th grade, I’ve never engaged in organized sports. And I’ve always chalked it up to not being particularly interested or gifted in that sort of athleticism. But that isn’t the full truth. Nauset ball was one of the first things that forced me to come face to face with the limitations of my health.

About 5-7 per million babies born are diagnosed with Diamond Blackfan Anemia Syndrome (DBAS)*. I was one of them because if I’m going to be chronically ill, it better be a rare disease with a fabulous name. My diagnosis was particularly dramatic because, well, it’s me. I gave my parents and doctors quite a fright when I was admitted to the ER at three months old with a 1.3 hemoglobin. If you have no reference for what that means… it is vewwy scawwy!

As mothers do, my mom has taken an intense interest in DBAS, keeping up with the (albeit limited) research and potential “cures.” And she’s been often frustrated by my lack of interest or engagement with my own disorder. Growing up, I wanted DBA to take up as little space as possible in my life. I went for my treatments, I took my medication and that was that. My closest friends had a general idea of what it is, and throughout my adolescence there would be times here and there where I was more open about it, but otherwise it was not a large part of my character or life. To me, it was all I knew and with how rare it is, I had no hope anyone would care to find a cure. And I was okay with that.

My mom was also an adamant proponent for how DBA affected me day-to-day. If I did poorly on a test, “Is your hemoglobin low?” If I was particularly lethargic, “Is your hemoglobin low?” If I was acting like a bitch, “What’s your hemoglobin?” I resented this. I ascribed my failures to me, not my illness. And with an extremely disabled brother and brain-tumor-ridden sister, I felt like the lucky one, the healthy one.

My treatment involves monthly blood infusions, but there are some other ways for managing the syndrome. In eighth grade I was put on prednisone, which many people take in lieu of blood infusions. The initial dose was very high, and at one of my earlier check ups, my hemoglobin was 14. This is a normal hemoglobin, but higher than I had ever experienced. I. felt. invincible. While to this point I’d always done well academically, in the eighth grade I was an academic weapon. In fitness, I was running amidst the star athletes during the Pacer Gram Fitness Test TM. I could not believe that this was how people felt, how they lived daily. I mean I was on steroids so maybe it was a little more euphoric than the average human, but regardless, my mental clarity and energy was unmatched. I also gained a crazy amount of weight in the most unflattering way at the most vulnerable age a teenage girl can be which caused irreparable damage to my self confidence and I ache to imagine my life had I never taken the prednisone…. but yeah I could run way more! This was one of the first times I began to consider that my life would be different, aside from the treatment logistics, had I not had DBAS. But I did not entertain the thought for long. And I was overjoyed when the treatment failed, and I was able to return to infusions and stop taking what I considered to be the devil’s medicine.

A few months ago, I attended a meet up for adults with DBAS. As they used the word “meetup,” I thought it would be an evening to gather with other adults with DBA to swap stories and experiences. But as the date approached and more information came in, I realized how wrong I was, and in July I found myself on a train to the Long Island Marriott where I’d spend three days attending lectures from doctors and researchers and mediated discussion groups with fellow patients.

On my way there, I joked with my mom how I “had to be the hottest one there.” Walking into the Marriott Skylight Suite, I quickly felt shame for this sentiment which was, admittedly, only a half-joke. DBAS presents itself quite differently in patients, hence the “syndrome” of it all. Cleft lip, hand deformations, and short stature are all common physicalities. Those who monitor their symptoms with prednisone are particularly stunted in growth, and if at a high dose, are subject to the weight gain I’d experienced in the eighth grade. Standing at 5’7″ in my leopard mini skirt, lips filled with Juvederm, not scarred by surgery, and fingers, of which I have ten, adorned with jewelry, I realized I was woefully prepared for this weekend. I obviously still scanned the room to see if there were any girls to feel threatened by, as being perceived as attractive has always taken priority over being healthy or emotionally in tune.

Once everyone had shuffled in, the introductions began. Dawn Baumgardner is the executive director of the DBA Foundation. As she introduced herself and kicked off the weekend, she made references to late night phone calls and frantic emails from the families in the room which were met with knowing laughs. I think I’ve met Dawn once when I was getting an infusion in Atlanta at the same time as her son. Beyond that, I had never called her up for advice. I didn’t have a cohort of DBA buddies to vent to or lean on. As people went around the room, however, some revealed that this –

I am so exhausted. I can’t even bring myself to write this in a way that gives context with a healthy dose of quips. I’m exhausted. At that DBA thing I learned about all the cancers I may get, the children I may not be able to have, and the iron that is slowly taking over my body. I am trying to bring my hemoglobin to something above the measly 8 I’ve been sustaining for the past three years while trying to combat the iron that is deposited in my heart and liver. I went to the NIH and they took 20 vials of blood and a chunk of my bone marrow. I scheduled a colonoscopy today. I also scheduled a meeting with an endocrinologist because I actually have no idea if anything is working right in the hormone and reproductive department. I am so tired and have chronic brain fog and now every time I come to get my infusions it takes almost three hours for them to get me started. I usually end up crying. I don’t want to do this for the rest of my life. I don’t want to yellow with iron. I don’t want to develop cancer and die slowly before my loved ones. I don’t want my children to wonder why mom can’t keep up, why mom hasn’t gotten out of bed today. I don’t want my children to have what I have. I don’t want to have to juggle my normal life with constant appointments. I don’t want to always have to live near a good hospital. I don’t want to hate myself in workout classes when I inevitably have to stop and catch my breath while the rest of the room continues in their tribalistic rhythm. I don’t want to wonder all the ways I could’ve been better if my brain consistently had the right amount of oxygen. I don’t want to sit on the hill while my friends play nauset ball, slick with sweat, running under the orange and pink hues of 7pm in the summer, stopping not when their bodies fail them but when the sun says so.

*It was just DBA which is honestly way more flashy, but alas the conflux of symptoms and issues that the disease comes with warrants an attached “syndrome.”