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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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When The Chronically Ill Go Into Remission: Filmmaker Jennifer Brea's Life After "Unrest"
Friday 31 July 2020
From the Los Angeles Review of Books:
 Jennifer Brea |
When the Chronically Ill Go into Remission: Filmmaker Jennifer Brea’s Life After “Unrest”
Featured and banner images by Jason Frank Rothenberg.
THE DAY I READ about filmmaker Jennifer Brea’s remission from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), I was evaluated for participation in a clinical trial. A German pharmaceutical company was studying the effectiveness of a new drug in treating Complex Regional Pain Syndrome (CRPS), a rare neurological disorder that often arises in response to trauma to the extremities, such as the hands and feet, and makes sufferers feel as though they are burning or freezing from the inside out. It is considered the most painful chronic condition known to medicine, has no approved treatment, and, usually, delivers a prognosis of increasing debility.
I have had CRPS since 2017; the inciting “trauma” was the third in a series of surgeries to repair the labrum around my left hip, which has been falling apart for years due to an underlying condition, the genetic connective tissue disorder known as Ehlers-Danlos Syndrome (EDS) Type III. The clinical trial was, I believed, my best hope for relief from the ardors of a pain that, while not indescribable, often challenges my abilities as a writer — an anvil dropped on the foot that crushes it to powder. Railway spikes driven through my heel. Though I had been working hard to accept my new reality and come to terms with the limitations of my body, which at that moment often included a wheelchair and long bouts of housebound time, the promise of a clinical study had ignited a tiny flame of hope somewhere behind my solar plexus.
In a post on Medium.com dated May 20, 2019, “Health update #3: My ME is in remission,” Brea talked about how she began her journey with dreams of being cured, dreams that, eventually, she relinquished. “It wasn’t that I gave up hope,” she wrote. “Rather, I knew I had to move on from something that might never happen and learn how to live the life that I had.”
And yet, she reported, after three grueling surgeries, her ME was in remission. With a complicated support scaffolding of screws and rods implanted to fuse her cervical spine and correct increased mobility at the craniocervical and atlantoaxial junctions (the joint between the spine and skull, as well as upper neck), Brea could walk and do water aerobics and lift weights.
Brea knew the news that many of her worst symptoms had vanished completely would be difficult for some people to hear, particularly those who find the challenge to “live the life they have” an endless struggle. “While I know that remission stories can bring hope, they can also be painful,” Brea wrote on the website of #MEAction, an ME advocacy group she co-founded. She offered to support to those who might respond to her disclosure with grief.
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