When Rare Becomes Normal
On September 11, 2013, I met my mast cell physician who after 15 years of searching diagnosed me with my mast cell disease. With my entire life making sense, and a doctor who gave me her time, her wisdom and support in front of me, I burst into tears hugging her. Rare disease patients fight for the diagnosis- to have everything "make sense" and hopefully with it, there will be a clear treatment protocol to make it all go away. Unfortunately, after the years of searching, the victory parade of learning what is wrong with you is not always met with music and balloons but instead you are faced with losing your pre-diagnosis self. In that first meeting, we spoke at length about the changes that I needed to make to my life that went beyond medications, (medications only can do so much-that is if anything at all) life-altering changes needed to regain control of my mast cells.
I remember my drive home from that appointment, my head spinning as I tried to make sense of the two hours I had just spent in my new doctor’s office. I was so happy to have answers but also both scared and sad about what this now meant for my future as I realized rare diseases don’t come with quick or easy treatments. The unknown and the unpredictability of my disease weighed heavily and I knew in that moment that my life would never look the same again.
Gone were the days of spontaneous adventures, live music, big parties, and travel. Suddenly, my pre-diagnosed life left me and my husband to reimagine our future together. In the big ways this meant a move to the suburbs, transitioning my work to be from home, and finding driveable locations to vacation. In small ways, it defines our day to day life entirely even still today, what foods are allowed in our house, what soaps and cleaners we use, what fabrics I can wear and the list goes on and on and on.
While today, our post diagnosis life now feels normal, it was not without hours of tears, frustration and grieving my old-self, my pre-diagnosed self who at the time could dream freely, could live freely and not have to daily weigh the risk of everything in my life-what I do, who I see, what foods I can put in my mouth. I have learned to appreciate the simple moments I once took for granted- trips to the grocery store or being able to visit a friend or take a walk with my family. But more I learned that the details of where I live or work, or what I eat are not what matters in this world, what matters is the people in my life, the time and celebrations I share with them, the joy I feel of being alive with them.
This weekend, as we celebrated "covid-style" Rosh Hashanah, I felt for the first time in six months and since Covid began - a little bit of collective hope at our "zoom table.“As we took turns sharing about our week and what we were grateful for it was clear we all felt a glimmer of life pre-covid. We had passed the initial months of shock and grief and figured out how to live just a little bit more again- even if that means in masks.
Daily I continue to think how COVID-19 feels like the entire world was diagnosed with a rare disease and we are all going through the post diagnosis process, the grief, isolation and anxiety as we all try to pick ourselves back up to find a way to live again within the confines of this new disease. Everything that we are able to regain or find a way to do feels like a victory. Just like I have learned in my own rare disease journey, yes so much has been lost, but in losing it I have learned what matters most in the world and that is what I fight for. And right now, it is what the world is fighting for-for the feeling of being alive together again one day.
