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.
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.
Those two therapists, while trying to help, seemed to be terribly misguided. I felt my jaw tightening when I read your experiences! I've learned, after the fact, that there are actually therapists that specialize in chronic illness. And while you're own innate wisdom eventually brought you back to your therapist's questions and moved you into some deeper inquiry/realization, I wish you'd had more skilled, compassionate guides when you most needed them. Feeling your words deeply and also your mantra for expanding the definition of yourself whilst in the midst of physical suffering that so often wants us to believe it's all we are. x
Oh my god, I'm in a puddle of tears, a complete mess, having seen this wonderful video of these courageous, beautiful, phenomenal people. Thank you for sharing it with us today. I too thank my conditions for all the gains and losses in my life, some losses that made my life easier, frankly, some gains that made my life richer, more meaningful, happier. Thank you, Kimberly!!!
“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.”
"To hate you, would be part of hating myself." That's so true for any kind of negative experience which we'd rather not look at, which we'd like to wish away for whatever reason...
But as I always say, if the pain is already inside, it's become part of me. We are in this together, and we'll get through it much better if we can figure out how to collaborate.
I've been thinking about those "letters to the illness" and it reminded me of writing I did some years ago, when I was living with intense pain for many months (and I didn't want any conventional treatment)
I also used writing as a healing method. Instead of writing to the pain, I asked the pain to tell me her story. And incredibly, every time I was into the story of my pain, it stopped completely ~ during that time ~ to return as soon as I stopped... but it was a most intriguing experience /experiment nonetheless!
Yes, that would be so good! I would be very interested too. It's a great next step from the letter writing, totally different perspective because you're treating the pain (illness) as an equal (a symbiont) who, in that moment, is playing such a big part in your life (or taking over your life in fact).
Thank you for creating a space for these incredibly strong and resilient warriors to share their stories!! May they keep showing those disorders who they really are!! 👏🏻💪🏻🙌🏻
I love this so much ❤️ I actually drew something recently, with the phrase 'strength of spirit', amidst sketches of nature, symbols of my spiritual practice, a self-portrait... In answer to my own question about what my mental and physical health challenges have gifted me...
Geez these are powerful and moving to listen to and read. But most of all, I can see the power that writing these letters imbues in each person. Thank you for sharing these, Kimberly.
Such moving statements, in new ways we haven't seen before from the Unfixed members - there's a a kind of intimacy in speaking directly to their personified conditions. 🤍🤍🤍
You're so right, and in speaking directly to their diagnoses, it's as if they find both differentiation and unity with them as well. Love a good "both/and."
Ah, you see, my surgeon referred me. Both were considered specialists in pain management.
Both experiences were in the late 80’s. With more case studies and research , I have no doubt that the advancements in behavioral approaches and mind body management have come a long way since then. The addition of tele-medicine alone has made a considerable difference for those who are unable or unwilling to leave their home. I am extremely fortunate that my husband is a chiropractic physician , licensed acupuncturist, and well versed in homeopathic medicine. I know I would not have made it to where I am today without his care. Yes, lucky girl indeed. I have been “unfixed” for a very long time.
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.
Those two therapists, while trying to help, seemed to be terribly misguided. I felt my jaw tightening when I read your experiences! I've learned, after the fact, that there are actually therapists that specialize in chronic illness. And while you're own innate wisdom eventually brought you back to your therapist's questions and moved you into some deeper inquiry/realization, I wish you'd had more skilled, compassionate guides when you most needed them. Feeling your words deeply and also your mantra for expanding the definition of yourself whilst in the midst of physical suffering that so often wants us to believe it's all we are. x
❤️
Oh my god, I'm in a puddle of tears, a complete mess, having seen this wonderful video of these courageous, beautiful, phenomenal people. Thank you for sharing it with us today. I too thank my conditions for all the gains and losses in my life, some losses that made my life easier, frankly, some gains that made my life richer, more meaningful, happier. Thank you, Kimberly!!!
Splashing in those puddles with you dear Nadia. x
Bring a ducky, okay? XD
Always!
Same 💗
:') <3
“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.
such incredible humans!
Indeed. Peaceful warriors.
Very powerful!
"To hate you, would be part of hating myself." That's so true for any kind of negative experience which we'd rather not look at, which we'd like to wish away for whatever reason...
But as I always say, if the pain is already inside, it's become part of me. We are in this together, and we'll get through it much better if we can figure out how to collaborate.
Synchronosophy in action: cohabitate and collaborate.
I've been thinking about those "letters to the illness" and it reminded me of writing I did some years ago, when I was living with intense pain for many months (and I didn't want any conventional treatment)
I also used writing as a healing method. Instead of writing to the pain, I asked the pain to tell me her story. And incredibly, every time I was into the story of my pain, it stopped completely ~ during that time ~ to return as soon as I stopped... but it was a most intriguing experience /experiment nonetheless!
Oh! What a wonderful exploration! My goodness, I want to ask that question now and hear everyone's answer.
Yes, that would be so good! I would be very interested too. It's a great next step from the letter writing, totally different perspective because you're treating the pain (illness) as an equal (a symbiont) who, in that moment, is playing such a big part in your life (or taking over your life in fact).
My pain 'dictated' a whole fairy tale to me...
Oh my. When you're read for your interview someday, I'd love to ask you to read this, or at least tell me more... I'm so intrigued!
Thank you for creating a space for these incredibly strong and resilient warriors to share their stories!! May they keep showing those disorders who they really are!! 👏🏻💪🏻🙌🏻
You’re so welcome. Thank you for taking the time to listen and watch!
I love this so much ❤️ I actually drew something recently, with the phrase 'strength of spirit', amidst sketches of nature, symbols of my spiritual practice, a self-portrait... In answer to my own question about what my mental and physical health challenges have gifted me...
What a beautiful exercise... I'd love to see if you want to share?!
Sure, I was just checking if there's a DM feature on substack... Can't seem to find it 🤔😅
Geez these are powerful and moving to listen to and read. But most of all, I can see the power that writing these letters imbues in each person. Thank you for sharing these, Kimberly.
Such moving statements, in new ways we haven't seen before from the Unfixed members - there's a a kind of intimacy in speaking directly to their personified conditions. 🤍🤍🤍
You're so right, and in speaking directly to their diagnoses, it's as if they find both differentiation and unity with them as well. Love a good "both/and."
What a super idea to write letters to parts of ourselves. Great therapy!
This is a beautiful idea
Ah, you see, my surgeon referred me. Both were considered specialists in pain management.
Both experiences were in the late 80’s. With more case studies and research , I have no doubt that the advancements in behavioral approaches and mind body management have come a long way since then. The addition of tele-medicine alone has made a considerable difference for those who are unable or unwilling to leave their home. I am extremely fortunate that my husband is a chiropractic physician , licensed acupuncturist, and well versed in homeopathic medicine. I know I would not have made it to where I am today without his care. Yes, lucky girl indeed. I have been “unfixed” for a very long time.