Posted July 2, 2018

by Lisa T.

Laughing at the joke, I turned my head to look at Glenn and shifted in my chair. That was all it took to dislocate my right shoulder. I bit back a scream and breathed deeply. I heard my best friend Kirsten call my name. I looked at her and touched the offending shoulder with the other hand.

“Mitchell!” she yelled, “Come fix the Lisa!”

My husband appeared from inside the house. I pointed to the shoulder. After 2 tries, he got it back in place. He verified that I was okay, kissed me on the forehead and went back inside where he was talking with our other friends.

I smiled at Kirsten and picked the conversation back up, my cue to please just let it go for the moment. She waited a full 5 minutes before asking me if I was okay. Then it was okay and we could laugh about it. She knows the drill.

I have a hundred stories about my diagnosis, my dislocations, my inability to take meds, my stabilizer braces, but today, my story is about having that one friend who keeps you going when your body won’t go anymore.

My condition is in a rapid decline and I cannot go out without a lot of planning. I had not been to the mall in 5 years when she talked me into loading up my walker in her car and going with her. She assured me there was no embarrassment. She encouraged me the whole shopping trip, which did not last more than an hour and a half, including rest breaks. She extolled the virtues of my handicapped parking placard, threatened to push me in my walker like an old lady, made it okay when my shoulder spasmed and I took out a whole grid display in a store.

Kirsten arranged a motorized cart for me so we could all go to the zoo. I had not been in years. I love giraffes.

Kirsten makes sure I get out and do things and socialize. She arranges get-togethers at her house because it is comfortable for me.

Kirsten understands when I simply cannot go out at all.

Kirsten is who I text when I simply cannot take it anymore. She knows what to say to keep me going, to keep me from doing the permanent thing.

Not all of my friends understand, even though they try. Kirsten does not try to understand, she simply takes me at my word and goes with the situation. “No pouting,” she says, “We are going to have fun. It’s fine.” She takes selfies of us when we are out, my reminders that I have a life, that I have friends, that it is not as tragic as it feels, not as awful as it could be.

Having a friend who does not question makes a big difference in my quality of life.

I am in a rapid decline. It is painful and frustrating. There are many things I will never be able to do again. But we have plans this weekend, the four of us, and it is okay for me to use my cane or walker or wheelchair or any combination thereof. My husband and Kirsten and her fiance make it okay.


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

Do you have a story to tell? Share it with us!


Categorized in: