- Last Updated: 06 July 2022 06 July 2022
MassME member Linda M. Morgenstern is a featured artist of this Invisable Disablilites art exhibit. She has graciously aggreed to donate the proceeds of her artwork to MassME. Read her moving story below.
I have lived with ME/CFS for 37 years. For much of that time, I maintained a public face very different from the private one. I worked in documentary film, telling stories was my craft. But my attempts to tell my own story, had been frustrating and even humiliating.
Following treatment for cancer in 2008, my illness became Severe. Amidst the rigors of treatment, I was struck by the radical difference in how I was treated as a cancer patient, medically, in the community, and by my own family. I was provided free acupuncture and massage! Neighbors left food deliveries. An entire hospital devoted to patient dignity and the very best care!
The suffering of ME/CFS goes unseen, untreated, and disbelieved.
It was pure serendipity that I saw a call for artwork on the theme of Invisible Illness, and was honored they accepted four small paintings. The paintings are loosely rendered landscapes with simple house forms. They are painted from memory, as I have been almost entirely housebound for a decade.
At the start of the Pandemic, with everyone sheltering in place, I began a series of House Paintings which speak to the isolation of our illness. They suggest a life lived within the confines of home, both Sanctuary and Prison. For the exhibition, I requested a chair beside the paintings. I would surely need, and if I could not attend this opening, as I have missed so much of my life —the chair would be vacant. It became part of the exhibit, a sign was printed, For the Millions Missing.
That night, I found myself explaining to State Senator Will Brownsberger what that meant and who we are.
These paintings have become my resistance to the hopelessness that can arise. The line between acceptance and defeat is a narrow one, indeed.
I make modest works, but they are a foundation on which I can stand, even if, just for a short period of time.
The cost of our invisibility is our very lives.
I was grateful to have this exhibition solidify my larger purpose. To join those who have been at work, tireless volunteers, small under resourced organizations —to raise awareness, and in time, as we all hope, to reclaim lives.
Linda M. Morgenstern, ME/CFS, 37+
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.