Why I Don’t Cling to a Cure
The title sounds depressing right? It’s not though, I promise. It’s my way of clinging to joy. I don’t pin the hopes of my life on a cure for my primary immunodeficiency. Right now, science has not yet identified the gene responsible for my specific disorder. There are clinical trials collecting DNA to try to do just that, but without the basic info like the genetic cause of the disease, we are likely still a long way away from a complete cure. If I pinned the hopes and dreams of my life on a cure for my disease, I would spend every day living in a state of waiting and disappointment. If I lived on the hope for a cure, I wouldn’t have the strength to get out of bed in the mornings.
A lot of people try to reassure me when they learn of my diagnosis by saying things like, “maybe there will be a cure soon.” While I appreciate their hope, I don’t find it productive for me to think like that day in and day out. This is one of those topics that is really hard to explain to someone until they just get it. Usually, it’s because they are experiencing something similar that they understand. To someone who is completely healthy, this can be a hard concept to grasp, because they cannot yet fathom how we learn to accept and live with incurable diseases. I will do my best to explain it here, though.
I know for a fact that there is still so little known about my condition. I WANT a cure for my antibody deficiency, don’t get me wrong. I would be at my immunologist’s door in 20 minutes if she said she could cure my disease. However, I also know that I may be living a much sicker life if I had been born before science had a chance to catch up to me. Instead, I pin my hopes on the existing treatments on the market. I live in gratitude that I was diagnosed at a time that science knew how to diagnose. I am grateful that there is such an effective treatment in place for a disease as rare as mine and for one that is still in its infancy of research. 50 years ago, the immunology field knew very little about primary immunodeficiency diseases compared to what they know now. In that time, they have developed treatments that, while not curative, are extremely effective at managing the disease.
My existing treatment plan gives me milestones to celebrate and tangible progress. It has given me a break from the constant infections that are the hallmark of my disease, and as a result, my quality of life is infinitely better than it was just over a year ago. I get to live in the joy that science and the field of immunology are evolving so rapidly that I can live a relatively normal life now. In the meantime, researchers are slowly starting to find therapies that may be curative for other forms of primary immunodeficiency whose genetic origin is already known, so I also get to experience vicariously the joy and celebration for those fellow patients and their families. Perhaps my turn will come during my lifetime. Even if it doesn’t though, I know wholeheartedly that I will still live a full life, because I refuse to pin all my hopes for my future on a cure that could be many years away still. I will continue to live my life as fully and joyfully as possible, utilizing currently available therapies, because I am only given one chance at this life. I don’t want to waste that chance waiting for something that may never come in my lifetime while science has already given me the tools to make the most of every moment.
Chronically yours,
Jen
