To hate you, Ehler's Danlos Syndrome, would be to hate a part of myself and you don't get to have that power over me. You don't get to take my happiness. You don't get to keep me down. On the contrary, you have shown me how strong I really am and that I am capable of so much more than I ever would've thought possible.
- from Brianna's letter to Ehler's Danlos Syndrome
In this episode, the Unfixed community writes letters to their chronic conditions. Some write break-up notes. Others type letters of inquiry about the nature of their relationship. Still others improvise and in sharing, find that hate and gratitude can coexist. One member even wrote a promotion letter to her condition. As always, the diversity of responses offers a telling glimpse into the complex, layered continuum of living unfixed. Our experiences are never black and white. Never good or bad.
But I hear one resounding, shared sentiment over and over again. Chronic illness fosters a strength of spirit and perspective that is unshakeable. While in the midst of stabbing pain or unending fragility we may curse, withdraw from the world and lose our ground. But within this very adversity, our foundations are rebuilt and reinforced by something impenetrable, not despite, but because of its vulnerability.
As one community member Alayna so eloquently writes, "You can’t stop me. I will not thank you, nor will I ever cower down or give up. No amount of scarring, fear or inconvenience will keep me from living a life of beauty. Our history together may have taught me that, but it’s my resilience that ensures it."
CLICK THE VIDEO BELOW TO HEAR MORE FROM THESE MEMORABLE LETTERS.
I have a saying I would tell myself . One I would be forced to ‘sign out of the library of my brain’ and put it to use.
Really, until you realize the truth of it, you’ll never wrap your head around your own illness.
“Nobody can do it but yourself.
No one can do it for you.”
It is an all encompassing list , including but not limited to ; treatments, coping, pain, surgeries, attitudes.
And healing.
Moving forward with this one life we are given.
I went to counseling twice in my life . I was told it would help me cope when my pain became intense. Not . ( By no means am I saying that therapy doesn’t work, this is just my own personal experience in that moment of my life).
The first session, I managed to get out of my house with the help of my husband. Climb two flights of stairs by leaning against the wall and willing myself forward, dragging ,sitting, dragging. And this is the standout memory from that experience . “Tell me about your childhood. Were you unhappy ? blah , blah …
I looked at her and thought ( even in pain I could be polite) ‘What the fuck did you just say!’ I had a wonderful childhood. A beautiful family .
After that , the only thing I could see was her tiny over plucked eyebrows . I heard nothing else. In too much pain.
Next person , first session she asked , “What makes you interesting ?” No response. I had no answer. I could have easily answered her question before my illness. I would have included all of the activities I loved to do BI ( before illness) Again , I thought what the hell does that have to do with not focusing on my excruciating pain.
It wasn’t until years later that I reexamined that question. Most likely unbeknownst to her, I realized that I let the disease define me. Something I never stop working on.
It became another mantra to be archived in my library.
And now, many years later, I mostly do well for what I have.
Kimberly, you have created a beautiful path to showcase courage.
Each person can watch themselves and not see disease, but see their own strengths. While others can find their own strengths in the watching.
“While in the midst of stabbing pain or unending fragility we may curse, withdraw from the world and lose our ground. But within this very adversity, our foundations are rebuilt and reinforced by something impenetrable, not despite, but because of its vulnerability.”
— this is so beautifully put, Kimberly.
Your mission with Unfixed is truly inspiring.