Would you give up everything you’ve learned from illness* in order to be cured**? *insert your flavor of adversity—death of a loved one, divorce, trauma, accidents, disability**have that loved one back, be free from trauma, its memories, aftermath and consequencesIt's a high-stakes choice with as many answers as lived experiences—the yes's, the no's, the maybe's and the ask-me-again-tomorrow’s. When I posed this question to the documentary subjects, some said, “I have so much life left. It wouldn't be hard to get those lessons back in another way.” Others expressed deep curiosity for their disease processes and how friction has made them more creative, empathic, and persevering humans. One thing can't be disputed. Hardship can provide enormous opportunities for growth but many resources are needed for this to happen—community, shelter, love, access to a good care team, mental health services, to name a few. So depending on our circumstances and the day of the week, we may answer this question differently. But for this wee, snapshot in time, what is your answer?
My answer is an unequivocal NO. Giving up all that I learned means I’d undoubtedly return to living life at the same breakneck pace that got me in this situation. Who’s to say it wouldn’t just happen again in the coming years if I just got back on the same intensity track?
I’m living life more gently now, more aware of the beauty of my surroundings, more present than I’ve ever been. I am stronger and more resilient than I ever knew I was in the “before times.”
Would I give up everything I've learned from epilepsy and experiencing thousands of seizures for a cure??? A qualified, yes. While epilepsy has taught me great deal about how our brains are uniquely electric and highly evolved for storytelling, threat simulation, and plasticity, I'm not sure it's not worth the trauma my children have had to endure in dealing with my seizures. They've had to watch their mom essentially "die" on repeat, and be unable to drive at times--a real obstacle as a single mom needing to take her kids to sports, lessons, dentist appointments, etc. So, I'd definitely trade my "enlightenment" for a more peaceful, less frightening childhood for them. If this makes me less noble, or less resilient-seeming, I think I'm probably ok with this :)
No, doesn't make you less noble or resilient! I love this kind of truth. And it makes absolute sense that you'd choose a more peaceful existence for yourself and your family over some "lessons learned." In the earlier years of my neurological disorder I'd tell my husband, "I just want a boring life." Peace and ordinary humdrum sounds soooo good when our bodies are yanking us this way and that. Thank you so much for sharing your response to this question. I'll be posting an episode next week or the following where 20 subjects with different chronic illnesses answer this question and it's comforting and enlivening to hear the diversity of responses.
Sep 21, 2023·edited Sep 21, 2023Liked by Kimberly Warner
My answer today, No. I'm where I am today because of the trauma. Which includes nightmares like last night where I wake up screaming in the middle of the night and my husband has to assure me I'm safe. I feel I am learning so much about trauma and the affect it has on your life and your body even decades after. I want to be able to share that wisdom and help others.
However, I do sometimes daydream about the different track my life might've gone. A loving family. A father that's in my life. A father that take care of you. When I hear about people talk about their Dad's and their relationships with them I'm not sad, but I'm curious. I want to know what it's like. Who would I have been if I'd experienced that? Where would that life have taken me? For some reason I've been thinking alot about this lately. Maybe because of your own serialized story?
I think daydreaming is a healthy part of life. Maybe even a way our brains try to establish different scenarios that we can relax into or hold as possibilities, even if they only live in the imaginary realm. Sounds like your nervous system is chewing on a lot and I agree, trauma is so sticky! Always finding ways to surface. Is it surfacing in order to be witnessed in a new way? I like to think so, perhaps sensing that our grown selves are so much more resourced and loving and capable of holding the pain and fear. I appreciate you sharing your thoughts on this question and I hope that my story is not only is "causing your wheels to spin" but also offering a balm of sorts. x
It really is Kimberley. I did have to stop for a bit as I found I was getting so swept up in it it was causing my nervous system to churn. But, I'm ready to start on the next several chapters. You are a beautiful writer.🩷
What a challenging question! Thank you for asking it.
Having gone through three different flavors of loss recently (job, marriage, death of a parent), I’d say that all of them brought me into greater alignment with my core values and desires for life, and into deeper connection with others.
I’m grateful for all of that...and still, I’d totally do anything to bring my mom back.
Love your response. Both/and often seems like the most truthful response. I always feel a relief when I can let seemingly conflicting realities coexist.
sometimes my mental landscape is a train station and I watch each cart go by, and as a non-rider, I am blissful. And other times I'm drawn to ride the cart. Not as a passenger, but as the conductor. And we move fast, lightning fast. The speed of thought quickly eclipses my speed of typed words per minute and I am blissful.
What a great visual. Train stations can feel so frenetic but conducting the movement or sitting blissfully still as it all speeds by, I can almost feel the quiet agency as I type this. Thank you.
Some days, I have a good perspective about all that I've been through. My disease has made me a better, more empathetic person. I am more appreciative of the little things in life and don't take anything for granted. And it has allowed wonderful people to enter my life. These are the good days.
On bad days, however, I think I would say yes - I would give up everything I've learned. A muscle disease is a constant grind and it's exhausting. I like to think that I would learn many of these life lessons another way. It's not like my life was veering off course before my symptoms. I miss my mobility. But then again, the people I've met along the way I never would have encountered had life not taken the course it did.
Hi Christopher, thank you so much for sharing your valuable and very "lived" perspective on this. I've worked with a few other subjects with muscle diseases—you're not alone in feeling the exhausting grind of it all. I saw your email come through as well and I'd love to connect and learn more about you. Sounds like you've gleaned a lot of insight from your experience, but also likely already had a capacity for deep introspection before the diagnosis. I'll circle back to your email now so we can set up a time to zoom!
First let me say that I spend a lot of time reading comments on Substack posts, just sometimes do I chip in my two pennyworth. This time I am moved by everything posted here... Been there experienced that, grieved, examined, learned. I am moved and I thank you all. I was who I was, I could and should have done some things differently, yet without them I would not be who I am now, or what I am yet to become. Peace, Maurice
It has served me best to stay grounded in reality and to face and embrace the life in front of me. I’m very far into grief and healing, so approaching this question at this point feels like traveling backwards.
If I were to ask myself this question 20-30 years ago, I would say that I don’t care what has happened, I just want/need my mother back. That I could and would face anything if she was beside me. Then I learned that I would and could face anything without her. I was always going to be who I am today. The road I took to get there just looked and felt very, very different than I imagined...and took so.much.longer. 😭🫶🏼
I love hearing that little girl needed her mom's presence to face the world and now the grown you knows she can face the world without her... as you've done and continue to do. I might expand on your word "face"—it seems you face, contemplate, digest, embrace, transform and redeem the world in your becoming. But yeh, what a bumpy, hazardous, long road that you've traveled to get here. I hope you've found some rest stops along the way to let the world hold YOU.
Adversity has taught me to release the conditioning & habits of my mind and follow the wisdom of my heart instead. My heart allows grief and celebrates growth...whatever “package” it comes in. My only concern is why wasn’t I exposed to this living Truth when I was young and growing up?
What a beautiful response Rex. Sounds like this question really penetrated the depths of your heart and surprised (and delighted) you. The fullness of life you speak about—this is such an odd paradox of illness. The fullness might not be evident to others as our lifestyle, schedules and "outer appearances" may look rather hum drum. But the inner life is so much more complex and complete. I'm so happy to hear you've come to this place in your own experience.
My answer is an unequivocal NO. Giving up all that I learned means I’d undoubtedly return to living life at the same breakneck pace that got me in this situation. Who’s to say it wouldn’t just happen again in the coming years if I just got back on the same intensity track?
I’m living life more gently now, more aware of the beauty of my surroundings, more present than I’ve ever been. I am stronger and more resilient than I ever knew I was in the “before times.”
Would I give up everything I've learned from epilepsy and experiencing thousands of seizures for a cure??? A qualified, yes. While epilepsy has taught me great deal about how our brains are uniquely electric and highly evolved for storytelling, threat simulation, and plasticity, I'm not sure it's not worth the trauma my children have had to endure in dealing with my seizures. They've had to watch their mom essentially "die" on repeat, and be unable to drive at times--a real obstacle as a single mom needing to take her kids to sports, lessons, dentist appointments, etc. So, I'd definitely trade my "enlightenment" for a more peaceful, less frightening childhood for them. If this makes me less noble, or less resilient-seeming, I think I'm probably ok with this :)
No, doesn't make you less noble or resilient! I love this kind of truth. And it makes absolute sense that you'd choose a more peaceful existence for yourself and your family over some "lessons learned." In the earlier years of my neurological disorder I'd tell my husband, "I just want a boring life." Peace and ordinary humdrum sounds soooo good when our bodies are yanking us this way and that. Thank you so much for sharing your response to this question. I'll be posting an episode next week or the following where 20 subjects with different chronic illnesses answer this question and it's comforting and enlivening to hear the diversity of responses.
My answer today, No. I'm where I am today because of the trauma. Which includes nightmares like last night where I wake up screaming in the middle of the night and my husband has to assure me I'm safe. I feel I am learning so much about trauma and the affect it has on your life and your body even decades after. I want to be able to share that wisdom and help others.
However, I do sometimes daydream about the different track my life might've gone. A loving family. A father that's in my life. A father that take care of you. When I hear about people talk about their Dad's and their relationships with them I'm not sad, but I'm curious. I want to know what it's like. Who would I have been if I'd experienced that? Where would that life have taken me? For some reason I've been thinking alot about this lately. Maybe because of your own serialized story?
I think daydreaming is a healthy part of life. Maybe even a way our brains try to establish different scenarios that we can relax into or hold as possibilities, even if they only live in the imaginary realm. Sounds like your nervous system is chewing on a lot and I agree, trauma is so sticky! Always finding ways to surface. Is it surfacing in order to be witnessed in a new way? I like to think so, perhaps sensing that our grown selves are so much more resourced and loving and capable of holding the pain and fear. I appreciate you sharing your thoughts on this question and I hope that my story is not only is "causing your wheels to spin" but also offering a balm of sorts. x
It really is Kimberley. I did have to stop for a bit as I found I was getting so swept up in it it was causing my nervous system to churn. But, I'm ready to start on the next several chapters. You are a beautiful writer.🩷
What a challenging question! Thank you for asking it.
Having gone through three different flavors of loss recently (job, marriage, death of a parent), I’d say that all of them brought me into greater alignment with my core values and desires for life, and into deeper connection with others.
I’m grateful for all of that...and still, I’d totally do anything to bring my mom back.
Love your response. Both/and often seems like the most truthful response. I always feel a relief when I can let seemingly conflicting realities coexist.
Yes. Duality is everything!
sometimes my mental landscape is a train station and I watch each cart go by, and as a non-rider, I am blissful. And other times I'm drawn to ride the cart. Not as a passenger, but as the conductor. And we move fast, lightning fast. The speed of thought quickly eclipses my speed of typed words per minute and I am blissful.
What a great visual. Train stations can feel so frenetic but conducting the movement or sitting blissfully still as it all speeds by, I can almost feel the quiet agency as I type this. Thank you.
I am torn.
Some days, I have a good perspective about all that I've been through. My disease has made me a better, more empathetic person. I am more appreciative of the little things in life and don't take anything for granted. And it has allowed wonderful people to enter my life. These are the good days.
On bad days, however, I think I would say yes - I would give up everything I've learned. A muscle disease is a constant grind and it's exhausting. I like to think that I would learn many of these life lessons another way. It's not like my life was veering off course before my symptoms. I miss my mobility. But then again, the people I've met along the way I never would have encountered had life not taken the course it did.
Hi Christopher, thank you so much for sharing your valuable and very "lived" perspective on this. I've worked with a few other subjects with muscle diseases—you're not alone in feeling the exhausting grind of it all. I saw your email come through as well and I'd love to connect and learn more about you. Sounds like you've gleaned a lot of insight from your experience, but also likely already had a capacity for deep introspection before the diagnosis. I'll circle back to your email now so we can set up a time to zoom!
First let me say that I spend a lot of time reading comments on Substack posts, just sometimes do I chip in my two pennyworth. This time I am moved by everything posted here... Been there experienced that, grieved, examined, learned. I am moved and I thank you all. I was who I was, I could and should have done some things differently, yet without them I would not be who I am now, or what I am yet to become. Peace, Maurice
It has served me best to stay grounded in reality and to face and embrace the life in front of me. I’m very far into grief and healing, so approaching this question at this point feels like traveling backwards.
If I were to ask myself this question 20-30 years ago, I would say that I don’t care what has happened, I just want/need my mother back. That I could and would face anything if she was beside me. Then I learned that I would and could face anything without her. I was always going to be who I am today. The road I took to get there just looked and felt very, very different than I imagined...and took so.much.longer. 😭🫶🏼
I love hearing that little girl needed her mom's presence to face the world and now the grown you knows she can face the world without her... as you've done and continue to do. I might expand on your word "face"—it seems you face, contemplate, digest, embrace, transform and redeem the world in your becoming. But yeh, what a bumpy, hazardous, long road that you've traveled to get here. I hope you've found some rest stops along the way to let the world hold YOU.
You always leave the most wonderful, coziest responses. I adore you. Thank you.
Adversity has taught me to release the conditioning & habits of my mind and follow the wisdom of my heart instead. My heart allows grief and celebrates growth...whatever “package” it comes in. My only concern is why wasn’t I exposed to this living Truth when I was young and growing up?
The heart is so much more capable than the mind to hold both grief and growth! Thanks for that reminder mom.❤️
What a beautiful response Rex. Sounds like this question really penetrated the depths of your heart and surprised (and delighted) you. The fullness of life you speak about—this is such an odd paradox of illness. The fullness might not be evident to others as our lifestyle, schedules and "outer appearances" may look rather hum drum. But the inner life is so much more complex and complete. I'm so happy to hear you've come to this place in your own experience.