Goodbye, Kassandra Shore
I was very rattled by recent the death of Kassandra Shore, a young local EDSer.
Kassandra had a plan to refuse more treatment and go into hospice, but I guess I hoped she would change her mind. Just my own wishful thinking. When I saw the post announcing her passing, I was shocked. My denial was my own.
I don’t think she was even 30 years old. It’s sorrowful to imagine someone giving up at that age. But then, who could blame her?
Our society is not kind to the disabled and poor, which is ironic because anyone can end up disabled or poor. We like to pretend that those things cannot happen to us, so we don’t pass laws to support people in those predicaments. Yet, we are all just a short distance away from either disability or poverty, and they tend to go hand-in-hand.
I met Kassandra at our local support group meeting in 2018.
She told me how she began having spine surgeries in high school, one after another. She had so many spine surgeries, they destroyed her digestion. She ended up having a large part of her digestive tract removed. If I am not mistaken, it was the Cedars-Sinai GI lab that finally suggested she might have Ehlers-Danlos.
Recently, my neighbor, a healthy 50 year old man, had a low back repair for which they went in through his abdomen. Months later he said his digestion was still a problem. He was warned this would happen. He chose this option because it would make for a better result for his spine.
Did anyone warn Kassandra?
When she was a teenager and being sent for spine surgery after spine surgery — without a diagnosis — did anyone ask why a young person would need these surgeries? How about what this could do to her in the long-term? Did they ever help anything? She still suffered incredible headaches.
I got offered a lot of wackadoodle surgeries when I was a teenager, with no diagnosis for why my body hurt so much. No surgeon thought that was a question even to be asked. I said no because the surgeries were just too scary. The orthopedists were creeps who ridiculed me for complaining about pain they were happy to recommend huge, nonsensical operations for. Even uninformed, inexperienced and undiagnosed me at age 14 could see structural re-dos like those were not a good idea.
I kinda hate surgeons, the joint ones, I mean. Many exploit the repeat customer, the Ehlers-Danlos sufferer. Something always hurts.
Even if we are not diagnosed, shame on them. They touch people everyday and should notice immediately how a body like mine feels. My joints just give. It’s pretty f*cking obvious. But why interfere with your income stream?
Surgeons don’t follow up with patients past surgery recovery. Why bother finding out what the long-term results are? Not their job. They already collected their money.
Once a podiatrist told me, “I just did an ankle stabilization on a girl. I think she has your problem but I didn’t tell her.” Oh, how nice of him! He did own a surgery center, so he had bills to pay. Did telling me ease his conscience? I never went back. I should have filed a complaint against him, but this happened before I was the sophisticated patient I am today.
As Kassandra told her story that day in 2018, it made my blood boil. But I did not say anything. What would be the point? Those decisions could not be undone. She was very sick and struggling and impressively brave. She was more hopeful then and planning a life. Later she had a heart surgery and more of the digestive failures. Her life became unlivable.
I see EDSers get spine surgeries.
And then more spine surgeries.
And not return to a higher functioning life or less pain.
This is a comment on the stories I hear and see as I keep my eyes and ears open. I’m sure there are exceptions out there. I have not met them.
The old Ehlers-Danlos National Foundation said to avoid joint stabilization surgeries because they do not work. I’d rather not risk more damage or create new problems by having joint surgeries. My problems as-is are plenty. I do not need them to be made worse. I have gotten a lot out of posture correction, using my joints well and getting strong. I am still very very flexible.