Help for Christina
I met Christina a few winters ago in San Pancho, Mexico. Although she is a private person, she agreed to let me write this post on her behalf.
Maybe you met Christina at one of my earlier online movement events, when she still had a phone with enough capacity to allow her to access Zoom. She’s young. She looks normal. Sometimes, when she’s having a rare good day, she looks gorgeous.
Until January 2020, Christina was wondering what was going on with her body. Over time, her level of pain had gone far beyond the injuries from old vehicle crashes and Lyme disease. Mysteriously, this pain had not been alleviated by two knee surgeries and two failed neck surgeries: cervical fusion and disc replacement. She hoped the third neck surgery, performed last January, would eventually prove more successful.
Instead, the pain has increasingly shown up all over her body. Along with the anxiety/panic attacks that amplify the pain and the migraine headaches and the chronic fatigue.
In January 2020, Christina learned that her escalating pain and loss of mobility are caused by a little known and poorly understood condition: Ehlers-Danlos Syndrome (EDS), a rare genetic connective tissue disorder.
EDS comes in varieties. Hers is the hypermobility type, characterized by joints that bend in ways they shouldn’t—subluxing and dislocating daily. Also digestive disorders, extremely fragile skin and, in Christina’s case, chronic, intractable, excruciating pain. There is no cure. The condition worsens over time.
The failed cervical fusions brought permanent nerve damage. And both knees are back to bone on bone. Constant terrible pain with no off switch.
Christina was attracted to the title and picture of the BBC article (link posted below), as people who notice her hunched posture may mistakenly assume it’s from some kind of shame unless they know about her condition. Or they may notice her unsteady gait or awkwardness in sitting and standing and not realize how loudly her knee is screaming in that moment, or the searing nerve pain across her shoulders. Instead they might assume she’s drunk or high.
The article is informative. If you read it, focus on the hypermobility section. This is the most obvious way EDS shows up in Christina’s body. Because of the expense, she has not yet been able to rule out the many other EDS varieties, or to be tested for other conditions that hEDS tends to cluster with, each bringing its own particular miseries.
Until recently, Christina had not gone public with this issue. Family and a few close friends have some awareness but, until receiving her diagnosis, Christina herself did not understand what was happening to her, aside from feeling like she literally was falling apart, piece by piece. Now she is beginning to take it all in and to try to imagine her life going forward.
Bottom line: Christina has an incurable, progressive, painful condition that she spends the majority of her days and nights trying to manage. A former athlete, she has had to give up her beloved running and hiking and swimming and mountain biking. Although the isometric exercises and yoga she does—when her hyper mobile joints and chronic fatigue allow—help her keep some muscle tone, little by little EDS is claiming her ability to live a normal life. Already it is difficult for her to walk or to drive, hard to digest her food or to sleep, and challenging to play with her young nieces or to keep pace with friends her age. She now has trouble doing even simple things: opening the refrigerator, turning a door handle, reaching for items, holding her head up.
I posted a version of this post on Facebook to help Christina get this information to friends and former clients who care about her and who have been wondering why she has not been able to engage in life in a way that her normal-seeming appearance would suggest. As you can imagine, it is painful, sad, frustrating, and exhausting for her to explain herself over and over.
Along with countless other losses, Christina’s ability to support herself as a hair stylist is gone. Disability assistance appears to be many months away, and she has scant resources to draw upon.
I’m telling you this because I want to help Christina stay afloat and have a decent quality of life. To this end, I’ve set up a PayPal fund for contributions, which I forward to her as they arrive.
To donate via PayPal, use this button:
If you prefer to donate via Venmo, it’s Kathryn-Thomas-92. For Zelle, use ktconnects@gmail.com or 512-662-6634.
People who come to my movement events and want to exchange value can donate to this fund. People reading this post who are inspired to help can use it. Christina’s friends can use it. Anyone, any time can use it—until the disability assistance begins and perhaps even afterward if there is still a need.
Huge gratitude in advance. Any size donation is welcome and will be put to good use.
Here is the link to the BBC article about EDS.