A beautiful essay, Jane. In the beginning of it you gave as good a glimpse into your "story" as word can provide with this sentence:
"On those days, I think if somebody woke up in my body and brain, they would only get out of bed to rush themselves to Emergency whilst I’m already out walking the dogs."
I know exactly what you mean, Jane. And your essay got me thinking of this conversation I had a long time ago with a new friend. We were in the "getting to know you" phase and when he mentioned that he had a brother who had died, I gently asked him what had happened. And he answered, and his response is something that has stayed with me for decades, "We're not there yet." I was baffled. What did he mean? We were there, since he put it out there so how could we not be there? Only now, with time and your honest and thoughtful essay, do I understand what he really was saying.
Oh, that's lovely, Cathy. Thank you for sharing. Yes, I can imagine his experience. Sometimes the words take a toll, don't they? Yet you still want the stories to be known! Hah! Quite a conundrum. One I'm sorting my way through. Thank you for your kind words and support. xx
Beautifully presented and spicy food for thought here, Jane!
"Every dollop of the past created this Jane and I’m rather fond of her. But I don’t want to tell those stories anymore."
I related so much to that - well, apart from being John, not Jane. While telling my story - and writing about it, including here, thank you - has been the key to understanding who I am and what created me, the question now becomes less "who am I?" and more "OK, you've figured yourself out. Now what are you going to do with the rest of this life?"
You are such a gift. I just want to tell you that.
I don't know all of your backstory about your health, yet I can tell you I understand on some level what you wrote here: "How do I share what I want to share without exhausting myself (and you!) with the words required to convey it?"
This is exactly why I began writing publicly about twelve years ago. It happened after our daughter Sarah was born with a complex genetic diagnosis called Apert syndrome. No one, including my husband and me, had ever heard of it before. I was bombarded daily with a litany of questions about Apert syndrome, the surgeries Sarah would need, the kinds of therapies she was in the process of acquiring, etc. It was EXHAUSTING, just like you said.
I wanted to share openly with anyone who asked, yet I grew weary of repeating myself.
One day, a friend of mine said, "Why don't you start a blog?" So I did. And every time people would ask me those questions, I would refer them to my blog.
Over time, I wrote more and more about what I was exploring, related to Sarah's diagnosis and how I was/was not handling it well. For the first time in my life, I realized my ableism and I was so ashamed that I had no inherent patience with the extra steps necessary to help Sarah learn basic skills, like the pincer grasp or holding a utensil, and eventually, a pencil.
So this is good you are here, telling us that it's draining. Many of us understand. We are with you. We are your spiritual friends, walking next to you from all over the world, much like the friend who walked with you in the park not too long ago.
Thanks, Jane, for your thoughtful reply. We hang in there. I can’t say I know what it’s like to have a “normal” family, in terms of the standard American family, but we do well for our unit of seven. :)
I suffer from chronic pain and also struggle with how much or often to share this with others.
Sometimes it’s hard to strike the balance within oneself—whether to share the words that form your story or to keep them close to your heart. There’s risk either way and reward as well.
As your reader, I hear you and appreciate you and all the words you share here.
Oh, Sheri, I'm sorry you struggle with chronic pain. That's hard. And, yes, you exactly nailed it with your beautiful words! I agree. And thank you for your kind words on my writing. They mean so much!
I rather like her too! And that’s because of the stories. I hope you’ll keep sharing, Jane, even the brutal ones if the cost of sharing isn’t too great, and the joyful ones. What else do we have to share but our stories and our love?
Ooooh, thank you, Sue for your kind words and your candle. Luckily, pain is not a leading symptom for me, though it has been in the past. But I know your candle prayers will help all. ❤️
Dear Jane. I so know what you mean, but I will read any story you write, and that is the truth. Still, I am sorry you are not well. Just because you are not alone in your struggles and pain, it doesn’t mean that these struggles are meaningless. I’m glad you’ll be in London. Enjoy your vacation and go often to the theatre if you can (my favourite thing in London). Sending much love
Thank you, Imola! I'm not surprised you get it! You know, I always think I'm going to go to the theatre when I'm in London and then I never do! Argh. Although this time, my friend and I are going to Beyoncé! Very excited for that!
I get tickled when I open a tab on my browser to read something, get distracted, leave it open for days, and when I finally read it, it turns out to be precisely what I needed at that very moment. This post is exactly what I'm struggling with the most today — what stories to tell, and whether I want to tell those stories at all. It's a conundrum that's left me tongue-tied and tangled, unable to write or even speak at times. Yet inside me, there's a burning desire to tell you about the brutality (as you put it so eloquently) of the last ten years.
I'm on a courageous mission right now to step into the light and tell some of those stories. Thank you for making me feel less like an alien about doing it. Much love. B
Oh, Brenda, yes to everything you wrote! And I’m so happy you enjoyed my essay. Thank you for letting me know! And I love that feeling of things arriving at just the right moment. I’m glad I got to be part of that for you.♥️
Thank you for writing this piece, it resonated with me! I am four years in, after one day changed every aspect of my life. It is a story that is necessary to explain at times and then there are the days where you wish someone already knew it without you needing to say a word.
I so much appreciated reading this, Jane. You perfectly described that ambivalence between wanting to be knowing and fearing being trapped in our stories, at least that's the way I read it.
I'm in the midst of writing a memoir that begins with the deaths of my mom and dad from COVID in January of 2021, and then backtracks into the story of our relationship over time. When I began writing last year, I had so much energy and momentum. Now I'm at a point where I am struggling with some of the dynamics you named here, and it's tempting to give up. I'm needing to anchor my intention for writing in a deeper place than simply 'telling my story,' though of course that's meaningful. I am still in process around that so don't have specifics to share, but this piece is helping me explore that feeling. Thank you.
Oh, Maia, I'm so sorry about your parents. That must have been unbearably hard and heartbreaking. I can understand the difficulties in getting that on the page. Thank you for your kind words on my essay; I'm glad it helped!
I love this, Jane. I'm feeling more and more drawn towards letting go of my story, but I think that's only because I've had the chance to tell it. Maybe that's the secret: tell the story, let it go ♥️
Thank you, Josie! Yes, that makes a lot of sense! It's not that I necessarily want to let it go...I just don't want to tell it anymore?!? I'm in a confusing phase! Haha. ♥️
Ahh, Jane.. your tender sharing of a piece of the backstory, coupled with the perfect relatable image (someone else waking up in your body would rush to the ER while you’re already out walking the dogs) bring a tenderness to my heart that invites me to comment.
I wrote about chronic illness (and mine is invisible) in my last post, and actually gave an abbreviated back story. I posted it both here and on FB for those who constantly (and lovingly) ask me why the doctor’s haven’t been able to “heal” me yet.
Some days it’s beyond explaining, and other days I push myself to stay upright so long that I have a bad flare up for days afterwards… (which gives the wrong impression to folks).
I too want people to know me, and to understand.. yet even when a dear friend lovingly asks me how I am doing, my tendency is to quickly say “I’m ok, isn’t this perfect weather this week?”
Such a lovely tender essay that connected directly to my heart Jane. I so appreciate what you write here, and am uplifted by the joy you find amid your pain and health struggles. For the first time in my previously quite sturdy physical health, three months ago, just shy of my 65th birthday and a planned trip to climb Machu Picchu, a severe low back issue that has turned out to be slipped discs and other forms of degenerative spine disease has made itself known and ushered me into this kingdom of chronic pain. And so I know what you mean, or as your friend says, that people really don’t want to know what it’s like, the brutal parts, like the immobility that causes you to become isolated from others and lonelier than you’ve ever been. In my case, the injury appeared just as I had made a permanent move to Barcelona to live close to my daughters, and after a divorce and dementia caregiving for my mom, able to launch into an exciting new chapter just for me. Pain, slow healing has kept Barcelona tantalizing close but oh so far as I stay mostly in my apartment, as yet unable to sit for reasonably long periods of time.—long enough for a coffee or a dinner. But I am slowly getting better. And working with Nicole Sachs’ Mind Body Medicine approach. I’ve learned so much about myself these past months. Not least that I have to ‘sit’ with some pretty tough and repressed feelings before I can physically sit. So many tears, but so much patience, acceptance, greater empathy for other chronic pain sufferers and unexpected gratitude for pain as a teacher. Yes, it’s now part of my backstory. And I surprise myself by saying, I wouldn’t have it any other way. Thank you for sharing from your heart, Jane 💗
Oh, Amy, that's a lot! Having a body can be quite a thing! I'm glad you are feeling at peace with what's happening. That certainly helps. Yes, so much patience! Sending love and support. And thank you, as always, for your kind words. xx
A beautiful essay, Jane. In the beginning of it you gave as good a glimpse into your "story" as word can provide with this sentence:
"On those days, I think if somebody woke up in my body and brain, they would only get out of bed to rush themselves to Emergency whilst I’m already out walking the dogs."
Oh gosh, thank you, David! Your words mean so much! xx
I know exactly what you mean, Jane. And your essay got me thinking of this conversation I had a long time ago with a new friend. We were in the "getting to know you" phase and when he mentioned that he had a brother who had died, I gently asked him what had happened. And he answered, and his response is something that has stayed with me for decades, "We're not there yet." I was baffled. What did he mean? We were there, since he put it out there so how could we not be there? Only now, with time and your honest and thoughtful essay, do I understand what he really was saying.
Oh, that's lovely, Cathy. Thank you for sharing. Yes, I can imagine his experience. Sometimes the words take a toll, don't they? Yet you still want the stories to be known! Hah! Quite a conundrum. One I'm sorting my way through. Thank you for your kind words and support. xx
Beautifully presented and spicy food for thought here, Jane!
"Every dollop of the past created this Jane and I’m rather fond of her. But I don’t want to tell those stories anymore."
I related so much to that - well, apart from being John, not Jane. While telling my story - and writing about it, including here, thank you - has been the key to understanding who I am and what created me, the question now becomes less "who am I?" and more "OK, you've figured yourself out. Now what are you going to do with the rest of this life?"
I can't wait to find out!
Thank you, John. And, yes, soooooo true! I feel that way, as well!
Jane,
You are such a gift. I just want to tell you that.
I don't know all of your backstory about your health, yet I can tell you I understand on some level what you wrote here: "How do I share what I want to share without exhausting myself (and you!) with the words required to convey it?"
This is exactly why I began writing publicly about twelve years ago. It happened after our daughter Sarah was born with a complex genetic diagnosis called Apert syndrome. No one, including my husband and me, had ever heard of it before. I was bombarded daily with a litany of questions about Apert syndrome, the surgeries Sarah would need, the kinds of therapies she was in the process of acquiring, etc. It was EXHAUSTING, just like you said.
I wanted to share openly with anyone who asked, yet I grew weary of repeating myself.
One day, a friend of mine said, "Why don't you start a blog?" So I did. And every time people would ask me those questions, I would refer them to my blog.
Over time, I wrote more and more about what I was exploring, related to Sarah's diagnosis and how I was/was not handling it well. For the first time in my life, I realized my ableism and I was so ashamed that I had no inherent patience with the extra steps necessary to help Sarah learn basic skills, like the pincer grasp or holding a utensil, and eventually, a pencil.
So this is good you are here, telling us that it's draining. Many of us understand. We are with you. We are your spiritual friends, walking next to you from all over the world, much like the friend who walked with you in the park not too long ago.
Sending love.
Oooh, thank you, Jeannie, for your beautiful and kind words. They mean so much!! I hope you and your family are doing well. xx
Thanks, Jane, for your thoughtful reply. We hang in there. I can’t say I know what it’s like to have a “normal” family, in terms of the standard American family, but we do well for our unit of seven. :)
❤️
It's really good to read some of your back story here, Jeannie. Makes me appreciate your writing even more.
Wow, thanks, Maia. I feel quite humbled hearing that from you, since I admire you and your writing greatly!
I suffer from chronic pain and also struggle with how much or often to share this with others.
Sometimes it’s hard to strike the balance within oneself—whether to share the words that form your story or to keep them close to your heart. There’s risk either way and reward as well.
As your reader, I hear you and appreciate you and all the words you share here.
Thank you.
Oh, Sheri, I'm sorry you struggle with chronic pain. That's hard. And, yes, you exactly nailed it with your beautiful words! I agree. And thank you for your kind words on my writing. They mean so much!
Aw, thanks for that, Jane. Have a lovely break!
I rather like her too! And that’s because of the stories. I hope you’ll keep sharing, Jane, even the brutal ones if the cost of sharing isn’t too great, and the joyful ones. What else do we have to share but our stories and our love?
Aw, thank you, Kate! And so true!! 🌸
Thank you for sharing more about YOUR story, Jane. Lighting a candle this morning imagining a pain free day for you. 💕💕💕
Ooooh, thank you, Sue for your kind words and your candle. Luckily, pain is not a leading symptom for me, though it has been in the past. But I know your candle prayers will help all. ❤️
💕
Dear Jane. I so know what you mean, but I will read any story you write, and that is the truth. Still, I am sorry you are not well. Just because you are not alone in your struggles and pain, it doesn’t mean that these struggles are meaningless. I’m glad you’ll be in London. Enjoy your vacation and go often to the theatre if you can (my favourite thing in London). Sending much love
Thank you, Imola! I'm not surprised you get it! You know, I always think I'm going to go to the theatre when I'm in London and then I never do! Argh. Although this time, my friend and I are going to Beyoncé! Very excited for that!
I get tickled when I open a tab on my browser to read something, get distracted, leave it open for days, and when I finally read it, it turns out to be precisely what I needed at that very moment. This post is exactly what I'm struggling with the most today — what stories to tell, and whether I want to tell those stories at all. It's a conundrum that's left me tongue-tied and tangled, unable to write or even speak at times. Yet inside me, there's a burning desire to tell you about the brutality (as you put it so eloquently) of the last ten years.
I'm on a courageous mission right now to step into the light and tell some of those stories. Thank you for making me feel less like an alien about doing it. Much love. B
Oh, Brenda, yes to everything you wrote! And I’m so happy you enjoyed my essay. Thank you for letting me know! And I love that feeling of things arriving at just the right moment. I’m glad I got to be part of that for you.♥️
Thank you for writing this piece, it resonated with me! I am four years in, after one day changed every aspect of my life. It is a story that is necessary to explain at times and then there are the days where you wish someone already knew it without you needing to say a word.
Yes, exactly! Thank you for the kind words. 🌸
I so much appreciated reading this, Jane. You perfectly described that ambivalence between wanting to be knowing and fearing being trapped in our stories, at least that's the way I read it.
I'm in the midst of writing a memoir that begins with the deaths of my mom and dad from COVID in January of 2021, and then backtracks into the story of our relationship over time. When I began writing last year, I had so much energy and momentum. Now I'm at a point where I am struggling with some of the dynamics you named here, and it's tempting to give up. I'm needing to anchor my intention for writing in a deeper place than simply 'telling my story,' though of course that's meaningful. I am still in process around that so don't have specifics to share, but this piece is helping me explore that feeling. Thank you.
Oh, Maia, I'm so sorry about your parents. That must have been unbearably hard and heartbreaking. I can understand the difficulties in getting that on the page. Thank you for your kind words on my essay; I'm glad it helped!
Jane, I just want to take this opportunity to wish you a most safe and wonderful trip. Enjoy it all.
Thank you, Mary! ❤️
I look forward to your return on June 16th
Thanks, Jeannie! Me, too! I miss everyone when I'm gone! ♥️
I love this, Jane. I'm feeling more and more drawn towards letting go of my story, but I think that's only because I've had the chance to tell it. Maybe that's the secret: tell the story, let it go ♥️
Thank you, Josie! Yes, that makes a lot of sense! It's not that I necessarily want to let it go...I just don't want to tell it anymore?!? I'm in a confusing phase! Haha. ♥️
Ahh, Jane.. your tender sharing of a piece of the backstory, coupled with the perfect relatable image (someone else waking up in your body would rush to the ER while you’re already out walking the dogs) bring a tenderness to my heart that invites me to comment.
I wrote about chronic illness (and mine is invisible) in my last post, and actually gave an abbreviated back story. I posted it both here and on FB for those who constantly (and lovingly) ask me why the doctor’s haven’t been able to “heal” me yet.
Some days it’s beyond explaining, and other days I push myself to stay upright so long that I have a bad flare up for days afterwards… (which gives the wrong impression to folks).
I too want people to know me, and to understand.. yet even when a dear friend lovingly asks me how I am doing, my tendency is to quickly say “I’m ok, isn’t this perfect weather this week?”
Yes to all of this Teyani! Having a body can be so hard!! Thank you for your kind words. And sending much love your way!
Such a lovely tender essay that connected directly to my heart Jane. I so appreciate what you write here, and am uplifted by the joy you find amid your pain and health struggles. For the first time in my previously quite sturdy physical health, three months ago, just shy of my 65th birthday and a planned trip to climb Machu Picchu, a severe low back issue that has turned out to be slipped discs and other forms of degenerative spine disease has made itself known and ushered me into this kingdom of chronic pain. And so I know what you mean, or as your friend says, that people really don’t want to know what it’s like, the brutal parts, like the immobility that causes you to become isolated from others and lonelier than you’ve ever been. In my case, the injury appeared just as I had made a permanent move to Barcelona to live close to my daughters, and after a divorce and dementia caregiving for my mom, able to launch into an exciting new chapter just for me. Pain, slow healing has kept Barcelona tantalizing close but oh so far as I stay mostly in my apartment, as yet unable to sit for reasonably long periods of time.—long enough for a coffee or a dinner. But I am slowly getting better. And working with Nicole Sachs’ Mind Body Medicine approach. I’ve learned so much about myself these past months. Not least that I have to ‘sit’ with some pretty tough and repressed feelings before I can physically sit. So many tears, but so much patience, acceptance, greater empathy for other chronic pain sufferers and unexpected gratitude for pain as a teacher. Yes, it’s now part of my backstory. And I surprise myself by saying, I wouldn’t have it any other way. Thank you for sharing from your heart, Jane 💗
Oh, Amy, that's a lot! Having a body can be quite a thing! I'm glad you are feeling at peace with what's happening. That certainly helps. Yes, so much patience! Sending love and support. And thank you, as always, for your kind words. xx
Aww, I appreciate you Jane, thank you. Sending that love & support right back your way. 💗