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"These twenty individuals all agree that while chronic conditions can chisel away at an identity, it can also compost that loss and nurture more gracious, humble, and meaningful lives; where we recognize not what the illness has done to us, but what it’s done for us." - Yes!!! Thank you for sharing another video that perfectly captures the experience. I relate especially to being someone who was always there for others to the detriment of me, and bah, in the end they didn't care for loyal friends or wanted more of me than I could give. And today I am my best friend and cultivate time and support for those who see me as I am, love me as I am, stick by me even with time and distance. I also don't care anymore if someone gets upset that I'm "flakey". It's been freeing and relieving. Much love and big hugs, Kimberly! :-*

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"Today I am my best friend and cultivate time and support for those who see me as I am..." YES! Boy do I relate to this... the shifting of friendships and social expectations can be such a strange and isolating part of illness. I was comforted to hear that experience reflected in so many of these voices, I thought for a long time it was just me! Thank you for watching and sharing your heartfelt thoughts Nadia. You are a treasure of a human and I know you get it.

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You are not alone! But I felt the same as well. I find I cultivate better, more supportive friendships in the online space than IRL. Some of my oldest friends I never even met, but time and distance doesn’t affect our bond. That’s wild! I think because we take the time to properly get to know each other. I’m so grateful to have met you and to get to know your heart and soul. <3

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May 19Liked by Kimberly Warner

"...where we recognize not what the illness has done to us, but what it’s done for us." WOW, an incredibly powerful line!

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Yess!!!

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I too was always overly there for others. It came as a big shock to them when I learned to say no! As challenging as that was, the health improvements followed. It continues to be me first and then I say yes to what I can/want to do. Earlier this month I had my first spontaneous day out in the best part of a decade! Like you day, very freeing and relieving😍🙏

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That is wonderful, Amber! The only people we need to show up for is ourselves, our loved ones, those few who truly care. And when we can’t, they would understand. <3

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"...what the illness has done for us, not what it has done to us."

Powerful ending!!

Thank you so much for recording and sharing these stories, reminding us that disablement ~ like death ~ is part of human life.

It reminds me of the book 'Elderhood' by Louise Aronson, where she explains that the medical system is set up to treat deviations from assumed 'normality'. Aronson specialises in geriatrics (where a higher percentage of disablement is to be expected) and found that the prescribed drugs were never tested on elderly people, whose organism responds differently than a 'normal' body system....

I guess what I'm trying to say is: as soon as we see ourselves and everyone as a unique precious human being, rather than measuring everyone (ourselves) against a fictive Mr/Ms Normal, a significant portion of the suffering instantly drops away.

Thank you so much for your work 💗🙏

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Isn't that the best line? Stephanie had a way of throwing those one-liners in that took my breath away.

Oh I'm very intrigued by what you share about Aronson's book. The measurement and judgement of the mind can really get us in trouble. Reminds me of a poem I will share in a few weeks that just popped into my inbox this morning. I'll share it with you here because it speaks exactly to this!

Self-Compassion

On a day when I am at war with myself,

when I battle my own humanness

in a longing to be good, to be better

than good, to be perfect,

when I point to myself with a snarl

and a sneer as if I am my own enemy,

then I notice how my whole body contracts

and I’m a crumpled up map, a gray lump in the throat,

a stone in the gut, a crumpled wing in the chest.

And it’s hard to breathe. And it’s hard to move.

That is when I’m grateful to have a body,

grateful for the way it helps me remember

I have a choice to meet this moment with kindness.

It’s as if, mid-combat, I’m delivered a postcard

with a forever stamp sent from my wisest self saying,

Dear woman who thinks she is not good enough,

I see you. It’s okay to feel this way.

And what looked like a battlefield a blink ago

now looks more like a vast green meadow filled

with low golden light where all parts of me

are welcome—the one who makes mistakes,

the one who judges, the one who longs to be good,

the one who thinks she shouldn’t have to learn

the same lesson again. There is no part of me then

that is not welcome, that cannot be loved,

and my body expands like a great alpine basin,

unfurls like an unending white flag.

How easy it is then to stand with all of my selves

in that field and know what it means to be home.

-Rosemerry Troner

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Oh wow! Thank you so much. I'm currently working on a piece on 'self-compassion' too... This poem is just perfect!

Looking forward to what you're going to share

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Exceptional video! I will eventually write an essay (if not a book) in response. I also experienced most of what these people describe, both challenges and rewards. I received gifts of wisdom and peace that I would not have learned any other way. I am one of the fortunate ones who found a way to recover after three years of total disability. My heart goes out to all of these people and I hope my story will bring hope to others.

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I'll be the first to read that essay/book Grace! Isn't it strange how certain "lessons and rewards" only come through the seemingly endless uncertainty of illness? So glad you're feeling bathed in that peace now and I know others will too as we continue to share our stories. x

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Thanks, Kimberly! It seemed a common thread is learning how to be kinder to ourselves, speak our truth and stop being people pleasers. I wish I had more time to dive into this at the moment, but I am moving this month so I won’t be doing much writing.

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May 21Liked by Kimberly Warner

I’ve never experienced the wellness in my entire adult life that I do now (as of this year) and I’ve also never been as true to myself as I am now (again, also of this year). And I can’t help but wonder at the correlation between the 2?

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Yes, indeed! I just watched a video of Anita Moorjani, are you familiar with her? She had a near death experience in 2006 and now she teaches what she learned about self love. We absolutely must honor ourselves first, or we are not able to be of service to anyone else.

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I’d love to read your book! And any essays. Please….we need more stories on recovery! 🙏💙

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Thanks for the encouragement, Amber. After I get moved and settled next month, I will get back to writing. Some things seem to be breaking free for me, and I will feel relieved when I can begin to share more of my story.

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Amazing. Can’t wait to hear on what’s been breaking free for you😃

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May 20Liked by Kimberly Warner

Kimberly, this work you do is so incredibly powerful and important. You are such an artist in the way you cut these films together but more importantly, in the space that you create for these people to tell their stories.

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Thank you Ben, it truly feels like my life's work. Never thought I'd find it but nothing like a load of dizziness to land me right in the center of it. :)

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May 20Liked by Kimberly Warner

I don’t know how many hearts you hold in your own Kimberly but I know that those you do are so very very fortunate. 💗

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The more the merrier luv. xo

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Well that is just ‘so’ you! X

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Powerful film. We can learn so much from each other. I especially loved the woman who said she takes joy in other people’s adventures.

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May 19Liked by Kimberly Warner

I agree! She's learned through her disability to be "selfLESS," instead of selFISH. A wonderful tribute to an awesome lady!

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Goodness, I am struck as always from your videos by the deep wisdom bound up with pain in these interviews. And much you are trusted with these hard-earned truths.

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My chronic pain has freed me from being a people pleaser. I don’t have the energy for other people, especially the ones that only want me to be their court jester. But, it is lonely here with my pain, while so called friends say “but your bangs look good “

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That's a powerful one Wendy. The people please can follow us throughout life, so congratulations on letting her go! I do understand what you say though, it can be a very isolating and lonely experience. I think that's one of the reasons why I started this work. So many rich layers of experience to explore beyond our haircuts!

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Thank you Kimberly, for hearing me. I fought joining Substack, but it has been a rewarding and growing experience. 🦕

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May 21Liked by Kimberly Warner

S happy to hear you have been freed from being a people pleaser. Though heart sorry it was a truly painful lesson to learn. I can hard relate to that. Your mention of how lonely and isolating pain is reminds me of the heartfelt letter I once wrote to pain that might offer you some comfort during such times:

https://warriorwithin.substack.com/p/a-break-up-letter-to-pain

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Thank you, Amber. I’ll read it right now. 🦕

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I admire your strength and knowledge. How wonderful those three months must have been for you. I can only reach that state with morphine with is not sustainable. Not even my sleep is pain free. I woke each day hoping this would be the day my pain was gone. I have accepted it won’t leave so I have released the fight. Two hospital stays last year I did learn that the pain can be worse than my standard day with pain. There is a fine line between releasing the fight and ignoring the pain, which is just hiding it, waiting to expose itself at an unexpected time.

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Thank you Wendy. It was a long journey to source, digest and understand the knowledge side of it. Reading “the power of now” by echart tolle and “the power is within you” by louise hay (combined) helped shove me on the path of learning to befriend my pain. So it’s interesting you mention the power of acceptance. Letting go of the fight.

Since writing the letter (which followed reading the books and imbedding the practice via a meditation specifically for chronic pain that I found - let me know if you’d like it), I haven’t experienced pain to a severe/agonising extent since (understood to be 50% more painful than childbirth, kidney stones and gunshot wound - something I had lived with since 1998, this was my normal pain level during many attacks).

I now only live with mild pain - something I had never experienced in my entire adult life until the year before last.

The 3 months pain free was glorious. It was a hell of a summer! I haven’t made it 3 months since however, I feel sure that it is possible and I continue doing the work it’s taken thus far - the improvements do keep coming, no matter how small and slight they may be.

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I have read The Power of Now. I also found The Untethered Soul extremely helpful as I struggled to walk on a small part of the Great Wall of China. I kept telling myself it is just pain. It will still be here after I reach the Great Wall, but I hadn’t gone that far to miss a once in a lifetime opportunity.

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I haven’t yet read the unthethered soul but that is exactly my kind of book! I’m writing my own and in the process of my first going through the publishing process. I find out about the big win with Hay House next month 🤞🤞

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Oh I eagerly anticipate the read of that - memoir is my favourite genre! Where abouts are you in the writing process?

What is a query letter?

My book that is currently getting published is a short memoir on last year, it’s an ebook competition that I won. I’ve named it “unleashing my inner power: daring to dream and flying fearless”.

The book I submitted to hay house in book proposal is a memoir on my journey of living with and overcoming chronic migraine. I found myself disabled by it in 2018 and written off as there being no hope. I also believe I’ve been living with chronic fatigue, fibromyalgia, tinnitus, severe anxiety and depression. I look at losing my job, career and income as a gift now though. Because it opened up space for me to connect to what I knew to be true all along and go on a deep healing journey, do it all my way and responding to what my body was screaming at me.

I have other books coming….a journal that’s in first draft format and hasn’t been touched for 2.5 years, a cowritten book of poems alongside snippets of my blogs and another migraine/chronic illness book that’s got an outline so far and a few ideas. To take readers through the how to.

I’m so sorry to hear about your severe RA and repeatedly broken foot. My goodness, that sounds horrifically challenging. It’s so horribly unfair.

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Oh, I also have fibromyalgia, anxiety, depression and PTSD. It is hard to get through a day.

A query letter is a shorter version of a book proposal. It sounds like you are able to accomplish so much based on the number of books and projects. That is so encouraging. I have a friend that suffers terribly from migraines. Nothing she has tried has helped. She just had Botox all over her head. I waiting to see if it has helped. Congratulations on the competition that you won!

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Garrrrh sorry to hear all that piled on top. I have a friend with a serious knee injury and chronic ill health too, it’s forcing her to ‘winter’. Like the space has been created to give her no other option.

Botox is one of the more effective treatments for migraine so I wish your friend so much relief. It’s a successful treatment for many and from research I understand it’s around 50% effective.

I’d reduced attacks by 75% by the time I found out about Botox (though I was still very much chronically ill so though it was a sizeable reduction there was a long list going on by that time).

It was a good start but I’ve been at it for years now. The next aim is to be symptom free month on month🤞

Had a meeting with the publishers yesterday, my first short story will be out in ebook in the next few weeks.

Please keep me updated on yours🙏✨I appreciate the work you are putting into it and what this takes,

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May 21Liked by Kimberly Warner

So overwhelmingly powerful. I've just teared up watching this on the train home from work.

Arresting words and thoughts. You do incredible work sharing these stories and you, and the others here in the comments, have quoted some stunning and impactful lines that really make me pause. "We're all open pianos..." Wow.

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You've spoken before about those train commutes and I find myself filled with longing and envy every time. Passive motion, the ability to do nothing for a set period of time except look out a window, listen, read. It sounds like the best kind of church. Is there such a thing? There should be if not. :)

And yes, Dylan always smacks us over the head with some doozies. "Come resonate with my peace and love chord." Love that guy.

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Hehe, very well said, that's absolutely what it is. 🤗

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Kimberly, you are so gifted. Thank you for using your condition and what "it has done for you" to highlight these beautiful people. I inherited my dad's rare form of chronic neck and shoulder arthritis, starting when I was a very young mom (he at 11 years old) and I thank God for the compassion it has given me toward others. We have no idea what most of us are going through. Love and kindness truly are everything. Also, I agree with what Bob is saying about Western medicine keeping us comfortable, rather than trying natural methods, which can, in turn, put us on a spiritual path of acceptance.

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Thank you for watching and sharing your reflections Deborah. Arthritis is no joke, I can only imagine what that must've been like for you as a young mom. Chronic pain truly cracks something open in us; if I hadn't been brought to my knees with MdDS I certainly wouldn't have been as compelled/driven to seek out community and give voice to the voiceless.

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Thank you Kimberly, for putting a spotlight on these beautiful people you interview. They are very inspiring to me and I understand, as I said, a bit of their journey in the chronic way. I wrote a little about it a few stories back. Arthritis is no joke and my dad’s form was and has been debilitating. I thank God for the compassion I have received through it, for others. I am so amazed by you and I am truly sorry for how hard the journey has been with MdDS. It’s incredible to see how it has transformed you for the good of others. God is so good that way, if we’re listening. We are truly so much more than our story.

Thank you so much again. ox

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Oh, Kimberly. This whole piece is beautiful. So much resonated for me. I'm especially grateful for the woman who takes joy in others' adventures and for that final line--looking to what the illness has done for us, not to us. Thank you, thank you.

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Oh yes, Elizabeth is such an incredible voice for the MS community. It's been a privilege of a lifetime to get to share a bit of life with her. Thank you for watching, I'm so glad it felt like good medicine. x

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Such a moving film you made--and bravely dared to explore and film. I love this and think it's brilliantly, tenderly done.

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Thank you friend! So many beautiful lives; it's been especially wild to feel such a love for these twenty subjects, all very different politically, socio-economically, culturally, and yet when I tune into their hearts, it just feels like one big puddle of love.

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Such an important message to keep sending. Thanks.

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Thank you J.E!

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May 21Liked by Kimberly Warner

This line speaks to me: "These twenty individuals all agree that while chronic conditions can chisel away at an identity, it can also compost that loss and nurture more gracious, humble, and meaningful lives." Those words - gracious, humble, meaningful - speak so much to this idea I try to hold close, that nurturing and deepening are so much more important than grasping, collecting, and acquiring. Beautiful profile, Kim.

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Thank you for watching and reflecting friend. Your insight is always so spot-on and heartfelt. x

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May 20Liked by Kimberly Warner

The same thing comes to mind as the first time you introduced these beautiful individuals to us. For me, one of the most important lessons. The primary takeaway;

No one is exempt in this life from having an illness, dysfunction, disease, or disability happen to them at any given moment . Listening to these very personal stories, you may be saying to yourself , oh the bravery and courage . So sad (for them). Now , zoom in a little closer. As if it were you telling the story. They share with us so we may learn. Can you hear their heart?

Changing the narrative to change a life.

“…living the peace within the storm”.

Kimberly you have taken your own chronic condition invented a way to coexist with it . And continue to prove your hypothesis; the road we traverse in life may be bumpy, rock strewn , washed out in places , and sometimes under construction with detours. But there is still joy and a lifetime to live along the way. You’re tossing a safety net, and I’m here to catch it.

Thank you to each person who let us in. File this one in the archives of your mind , under~‘What if and I can ‘

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Such wise words dear Lor. You never skim the surface, do you? I think it's easy to stop with "oh how brave (of them)" but you're so right... these are teachings for all of us. The face of adversity looks different for everyone, but no one escapes it.

I never thought of myself as good at "proving" anything (don't sign me up for debate club!) so I especially love hearing that my life is a living demonstration of the Unfixed hypothesis, that we truly can expand our definition of what a good life looks and feels like, if only we step outside of our society's conditioning.

Big love to you my wildly generous and wise friend.

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"what everbody writes about...the poets and the artists...its all true...love and kindness..."

powerful video and could only be plumbed for its enduring humanity by one who hss been there... one might forget beyond your own uniquely creative expansive gift for expression you do good work as well

very good☝️🙏❤️‍🩹

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I know, isn’t that the best? Jacqueline became a very dear friend throughout this process. We live across the country from each other but her words and tender heart are always near.

Thank you, as always, for your kindest words.

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