The Gift of Time
My husband sent me an article written by a rare disease patient last weekend and while I live with a different rare disease it was sobering to read. Ultimately the author realizes the painfully slow process it takes for science to catch up and how this means she may be living in her current state for another 30-40 years. Her disease similarly requires her to be on steroids long term and she also faces the love and hate battle I have with them, knowing they are the reason I can function in life but also keenly aware of the viscous side effects that they bring.
As I digested what I read I realized I don’t think about living in my current reality for another 30-40 years but will I? It has already been a solid 20 years of living with complicated health issues, searching for a diagnosis, finally receiving one but not having a clear path to a cure. It is because there is not one, research still hasn’t caught up. And while I have worked hard to find my version of normal it is still all in the face of a strong hope and belief that one day it won’t all be so hard. But is that realistic? Is what she said more likely? Do I really have 30-40 more years of daily discomfort, steroids, sourcing safe food, eating a handful of foods, spending hours a week managing compounded medications, doctors offices and complicated logistics to partake in society? I am sure I can still heal but at my core my diseases are now a part of me.
I have of course processed my changed life from my rare diseases many times this last decade as I have grieved my healthier self and yet there was something about reading 30-40 years that struck me as an endless amount of time.
But then I think about the last two decades and all the joy and adventures they have held and while there have been very hard days and yes daily stress and discomfort and challenges to face there have been so much good in each day too, so much love and support felt, shared time with family and friends, simple pleasures and laughter and even new found adventures. I have lived even in the confines of my diseases so does it have to be upsetting if I do live like this for 30-40 more years?
I remember the year before my Mom died she had to stop working and became more home bound as she worked towards healing. Of course it was upsetting to her on many levels but even though her world in that time was much smaller she still found meaningful ways to fill her days, to be creative and find joy in being with her family and a Mimi. We would talk often about how even on the hard days how grateful she still was for the time with those she loved.
At the end of the day, rare disease patients are really all fighting for time. For more time to live and be with those we care most about, time to live out our dreams whatever they may be and find meaning in our days. A cure or new treatment options gives us time. We hope it will mean time where we feel healthier but time is at the core of what we want. I know it was all my Mom wanted and what I will forever wish I had more of with her. It’s what I pray I will have endless amounts of for my life too and why I fight daily to heal or at least stay stable.
So while the thought of 30-40 years in my current state initially overwhelmed me I know I would actually be tremendously grateful for the gift of time even in this state if it means I am here to be alive with those I love and care for, to share in laughter and to delight in the magic that is all around us.
