Tag: Chronic Illness
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Ableism and Universal Design
People with disabilities are the largest minority group in our nation. It is the only minority group that any person can join at any time. The ADA is the bare minimum, not the gold standard. Because adding accessibility options and being smart about design helps everyone.
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My Village
We have all heard the phrase, “it takes a village,” but never has a phrase been more apt to encompass my life including my gratitude, my luck, my love of the street I live on and the friends and neighbors who have turned into chosen family.
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COVID, Paralysis & Deja Vu
Chronic illness is exhausting. When asked how I was doing via text message yesterday, I replied, “Equal parts fine and terrible.” Four years was a good run, but that nasty little bugger finally got me. I joined the masses and tested positive for COVID.
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The Not-So-Terrible Twos
Two years have passed since my stem cells were put back in my body to rebuild bone marrow and my immune system, it seems like a lifetime ago and yesterday all at once.
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That sounds like a female problem
I’ve learned through my four decades on this earth that the general consensus from medical professionals is that they just don’t know when it comes to women’s bodies, women’s health, women’s cycles, and women’s hormones. We’re too individual, complex, unique, tricky, hard, difficult, challenging, erratic, and unpredictable.
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How many therapists is too many?
After years of trial and error, I now have three individuals dedicated to different aspects of my mental health. In comparison to my other medical teams, three seems like a small number. Let me reiterate and say it loudly for those in the back row, MENTAL HEALTH DESERVES YOUR ATTENTION TOO!
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Accessibility For All – put it on the website
Yesterday was an amazing day because after almost eight months of work, Cleveland Clinic published a one-stop-shop for accessibility resources and accessing care at our locations. Don’t presume — specifically in healthcare — that you know what anyone is going through.
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The Disability Tax
There is a disability tax that without invite, attaches to all aspects of your life. People don’t talk about this and probably, unless forced, don’t think about it either. I know I didn’t! There is a loss of personal agency and choice.
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From OR to AND: A New Place in Healing
I think the medical advice of “year-long recovery” for HSCT is a misnomer. But there is progress and there are things happening that matter to me. I am recovering more quickly, I am lasting longer, my endurance has improved.
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Reflections on an Unexpected Year
I am letting go of anger. I release the illusion of control. I revel in possibility and the unknown, and I am learning to hold both joy and sadness, acceptance and striving for more, contentment and wanderlust — simultaneously. I am loved. I am safe. I am enough.
My Chronic Library 