The story of Diane
In 2015, I was diagnosed with Inclusion Body Myositis (IBM), a rare degenerative muscle disease, with no known cause, treatment or cure. I was 58 years old.
Since my diagnosis, I have worked hard to maintain as much muscle function as possible for as long as possible, but my disease is winning. I have very little muscle left. I can now only walk with extreme caution, using hyperextended knees and a walker. Most of the time I am in a power wheelchair. I use an electric lift to get in and out of bed and always wonder if today is the day when I can no longer do this independently. I have an electric toilet lift and bidet for toileting. My hands and arms just don’t work anymore for something as simple as wiping myself. Public toilets are out of the question, so I have to plan outings without toileting. I bend my torso sideways and use my shoulder and neck muscles to lift a piece of paper. Every day is a struggle to complete my activities of daily living.
I began this journey with IBM optimistically, hoping I would progress slowly. Instead, my progression has been relatively fast. I received my first power wheelchair 6.5 years after diagnosis. At times, the losses are overwhelming, and I grieve…a lot. I think about a cartoon I saw decades ago, in which a sheep in a pasture is asking itself, “Why is it so hard to lose something, when, in the end, we lose it all?” I am determined to learn something from this disease, and maybe even one day, to view it as a gift. This disease has opened up my mind and heart in so many ways. I am more informed now, more empathetic to different human conditions, more committed to advocacy, less selfish in my focus and pursuits, and more at peace with the inevitabilities of life.
Eventually, in this journey, one realizes that your only real choice is to accept the situation. Even if you want to give up, what does that really mean? If I don’t get out of bed, my heart will still beat, my lungs will still take in air, my bladder will eventually need to empty, and life will go on. I’ve learned to let go, to accept, to commit to the struggle, and to find laughter and joy again, albeit in different ways. A full life includes the ups and downs.
I think about my mortality every day. I have family and friends who are gone, and I am still here. I have a responsibility to use this gift of life, no matter how big the struggle. There are no guarantees…just this beautiful journey with its twists and turns and terms. And, If I am going to be grateful for any of it, I have to be grateful for all of it (paraphrased from Stephen Colbert).
I am overwhelmed by the generosity of the people in my life who give me so much love and support. I am also committed to work with other patients and advocates to find a cure. Often with rare diseases, there is little funding for research.
Each year, on February 28, we celebrate Rare Disease Day to increase awareness of all of those rare diseases that have no cure and to advocate for funding for research. Even small investments can make a difference.
To learn more about Inclusion Body Myositis, check out this wonderful website developed by my friend, Kevin, who also has IBM
https://cureibm.org/