The very first person to recognize that I had a systemic disease was the doctor who performed my sinus surgery in 2008. The previous June, I had gone on a three-week backpacking trip through Scandinavia and contracted a sinus infection I couldn’t shake. In November, after several rounds of different antibiotics, I was referred to an ear, nose and throat specialist. He took one look at my massively deviated septum (a casualty of my wild child teen years) and scheduled surgery to clean out my sinuses.
He also advised that I contact an immunologist as soon as possible, as I was a 23-year-old in seemingly good health, yet had been unable to clear an infection for six months. I set up an appointment and became an active player in a game I hadn’t yet realized I was playing. The hunt for mast cell disease was on.
This doctor’s greatest asset was the longevity of his career and, owing to this, the fact that he had seen thousands of patients over the years. “You remind me of this woman who used to be a patient of mine,” he told me during a follow-up appointment as he looked through the scope snaking into my sinuses. “She looked so healthy, like you. But something was wrong with her.” He remembered the specifics of her case very clearly. She had Hashimoto’s thyroiditis, like me. She had hearing loss. She had also required sinus surgery. “She knew there was something affecting her whole body, but I didn’t know what it was.” He had thought at the time that it might be an endocrine issue.
This woman took on a mythical status in my imagination. I hadn’t been convinced that what I had wasn’t just a collection of mild, treatable ailments. But once I heard about this woman, I knew. I knew that this wasn’t all a coincidence.
I haven’t seen that doctor in years, but when I was diagnosed with mast cell disease, I called his office and left a message for him. He called me back a few days later. He remembered me and my collection of symptoms. He was fascinated to learn that I had mast cell disease. I asked about the woman, in case she had never received a diagnosis. “Oh, she died some years ago,” he told me casually. I was too afraid to ask how she died. I don’t have any reason to think that it was from mast cell disease, or that she had even had it in the first place. But the news that she had died, this woman I had never met, hit me strangely.
There are so many tiny things that affect you when you have a disease like mine. You feel an immediate kinship to anyone like you. The emotion you feel can sometimes be disproportionate to the actual intensity of the relationships. You take things personally. You are acutely aware that you are different from everyone else. You can’t freak out about the big things, so you freak out about the little ones instead. You get very good at cataloguing the suffering.
But there is this other about being sick. You see good in everything because some days you need all those little beacons of light to scatter the darkness. Hope begins to feel like a religion. Making plans, thinking things will improve, believing that you can still have the life you want – these things feel like acts of faith. Every step that moves you forward is a prayer to the universe to let you have one more. The act of staying alive feels sacred. You have to believe it will get better. There is no other way.
Many languages do not differentiate color in the same way that English does. Several of them use the same word to refer to both blue and green. I can only think of hope now as being brilliant against this dark horizon. That’s how I feel when I plan my trip around the world, like I’m executing a divine will. I don’t have any words for that, but when I close my eyes, the light it shines inside me is blinding.