I am disabled but not unable. Thanks to medical technology, fabulous and caring physicians, family support, social support (both online and off) and computer technology, I continue with my chosen career, my chosen causes and a life that is as full and engaging as anyone could hope.
Now, I’ve discovered The Mighty (details in the video below) thanks to my Bardo Group Beguines colleague, Lana Phillips. What a great find!
A wonderful idea, essentially an online support group for people who are dealing with chronic and catastrophic illness and sharing information and resources. The people who visit The Mighty site and/or write for it, share their stories (including stories of parenting). They are women and men who are ill or disabled themselves or who are caring for others who are ill or disabled … or, perhaps both.
We are so fortune in these days that there are support groups available. My own mother lived with cancer over and over again. First breast cancer, which kept reoccurring. Then thyroid, kidney and other cancers. Ultimately she died at 76 of breast and colon cancer. In her day, there were no support groups, no one in her life who could understand the complications: psychological, financial or physical. There was no adult who could observe, understand and intervene. She also suffered from mental illness and was in an almost constant state of stress and trauma.
Unlike my mom, I have the benefit of a support group at the Medical Center for people with interstitial lung diseases who are in pre-transplant (me), transplant and post transplant programs. I also belong to an off-line support group of people with “life-threatening” (read ultimately fatal) illnesses, which is run by the local Buddhist meditation center. Some are – like me – lucky enough to go on for years. I was diagnosed in 1999 with Idiopathic Pulmonary Fibrosis, which is fatal within five years of diagnosis and for which there is no cure. I’m still here because the diagnosis was wrong. There was no way to know that until time passed and reactions to medical treatments could be observed and evaluated. These proved that the condition is actually Hypersensitivity Pneumonitis. So, as you see, I’m still hanging out. Some of the members of our Buddhist group are not. Over the last seven years we’ve lost nineteen friends. That’s the tough part.
The upside is that our offline support groups provide us safe haven to share information, to be open about our fears and frustrations, and to share our joys. So too The Mighty, where there are a rather remarkable number of conditions addressed from a personal perspective and in a manner that is informed, compassionate and uplifting. Bravo!
Write a poem, short story or feature article about dealing with chronic catastrophic illness or disability. Directly or indirectly, illness and disability touch all our lives. It’s just part of this package called Life! If you write an article, you might consider submitting it to The Mighty. Submission guidelines are HERE.
© 2016, words and photograph, Jamie Dedes, All rights reserved.