I am always so moved by your words and how you describe your symptoms with such force I feel I’m on the swells with you. This morning, my face shimmering with tears, I think I about how helpless and alone you must’ve felt then. It reminds me of how helpless and alone I felt as I unraveled in front of my computer at work. Knowing my life was about to change the minute I made one call. The call for help I knew I needed, but kept refusing to believe. Like you. It will pass. I will be fine. I just need a few days.
Days turned into weeks, then months and now years. I struggle to accept, but know I must. I’m desperately hanging onto your wise words from our conversation a few weeks ago. I must learn to co-exist with the beauty and terror my life holds at the moment. Seeing you do so successfully gives me such hope. Xo
Oh Kim, I still don't know the details of your unraveling but my heart aches with you. How life can change in an instant, how much longer it takes to integrate, draw meaning, allow peace. I don't know if my words are wise as much as honest, but I certainly know I am a living-breathing example of hell freezing over and then somehow, eventually, painfully and then absolutely, a thawing. Hope. Springtime promises ushering summer harvests. Please don't hesitate to reach out if you'd ever like an ear, someone who gets the terror on such a deep level. I don't have advice but I can definitely hold you and offer solidarity as you walk through it.
On Sunday morn, I always eagerly await the arrival of the next chapter of your memoir! Today didn’t disappoint. Although I held my breath as you so clearly described the storm of dizziness that changed the familiar trajectory of your life…
A mother’s job is to protect her offspring from whatever befalls. But whatever you were going through was SO INVISIBLE from the outside! I, too, felt helpless. Loving you, Kim.
Your helplessness, vulnerability and steadfast love were there every step of the way momma. You gave me strength when I didn't have any. You allowed me to find peace in falling apart as you held me through it all.
Hey, I’ve experienced EXACTLY what you’re describing over the past ten years, and it is HELL. I have two diagnoses from all of the testing and drs appts, neurologist and ENT appts. The first diagnosis I got was MS. Which I have. However, I think you might have MdDS. There is a spontaneous version which can suddenly happen to anyone and the dizziness/walls and floor moving/sea sickness feeling must last more than 6 weeks for it to be this. It’s called Mal de Debarquement Syndrome. Please message me anytime if you have any questions. I would answer whatever I can for you, as I know how insanely hard it is to do ANYTHING feeling like this.
Oh honey, you need to put an MD after your name! MdDS is EXACTLY my diagnosis, though it took a full 5 years for it to be known. I love that you figured this out from one essay. Thank you for your kindness and thoughtful response. I wish I had met you 8 years ago when this all began! (As you might guess, my memoir isn’t real time. I still have constant dizziness now but it’s so much more tolerable, I’m on medication and I’ve adapted.) Sending you and that body of yours a giant hug.
When you don't demand pity from your readers, you make it possible to let them get right in there with you and watch tragedy unfold. This a nightmare recounted by a grown-up.
What a brilliant reflection Adam. And a hard line to walk... the need for others to understand, especially when something is invisible, has felt quite desperate at times. Seeking pity is never the answer, and isolates further...seeking instead solidarity, or at the very least, a companion, makes the descent not quite so lonely and quite possibly even more universal, each of us extending a hand, one nightmare to another.
Lifted up by the love of strangers. We are here for you whatever piece of you , even for a minute or a lifetime, we’ll take it. And we will cherish it .
Your "if only" might be the truest healing of all. Maybe not always physical healing, but certainly an unconditional healing of hearts, minds, psyches, souls... Thank you for your healing.
I'm reading this with my breath held because even though I my own symptoms are not anywhere close to what you describe, I've also been struggling with dizziness for a couple of months - so I absolutely understand that same fear - times 100 in your case. I'm pushing on because I want to get all caught up before we talk on Monday but my heart goes out to you, my dear... 💜
Oh dear Troy! Not you too? Dizziness is no joke; as much as we "know" we won't fall over, the primal parts of our brain signal off so many alarm bells that our very sanity is in peril. I hope your ground solidifies soon, or at the very least, should we wear sailor caps for our Monday interview?
Well I had a terrible bout of vertigo last year due to a medication, unable to even stand for six hours at a time - these last couple of months it's milder, and I suspect it's connected to allergies/inner ear but also a two-tiered tinnitus? (Dr. on Monday before our interview...) We'll see, but that fear is very real. I think we're good - looking forward to it. :)
"My body’s new homeostasis, terror" was so how I felt when my seizures began. You capture the storm so poetically and then come in with the shelter of the familial at the end and it's just beautiful. :)
Oh, Kimberly. I know I say that a lot in this comment section AND I have to say it again. The way you're able to convey this horrifying journey in the most thrilling and elegant way is pure magnificence. I was literally griping the arm rests on my desk chair as I was reading. I am so grateful that you've figured this all out AND my heart aches that you had to go through it for as long as you did. Also that piece of artwork could not be more perfect to accompany this chapter.
Then the ending. Total burst of happy love tears. I always have to save your posts when I have ample time to absorb and feel after I read them. They are just so devastating (in the best possible way) and full of pure heart.
I'm copy and pasting this part because it's so damn beautiful and makes me so damn happy.
"We love you. Even if you’re only up for a hug, that’s fine with us. We just want you to be well. We’re all happy to be here together so no pressure on when you are able to connect. It doesn’t have to be for long. And did we mention that we love you?" What an incredibly soft place to land. 🥹
Thank you Elizabeth. I know you know it all too well. I think this journey has encouraged articulation from my cells. It's a slow process with a lot of quiet listening, but it's been wild to find that our bodies have words too, not just our minds.
This was so hard to read as I felt trapped in your terrifying dizziness, but compelling too because of your talent and the love around you. I feel so deeply for you having been imprisoned in your own body. I know a little of having to make daily adjustments for exhaustion and pain, life unravelling. And then hope💜
Thank you for feeling into this one Mya. It sounds like you have your own version of physical imprisonment, how unrelenting and tiresome it can be, but necessary, almost as if the exhaustion finally gives way to surrender. Surrender giving way to hope.
*Gulp* The reply from your new family got me. This whole chapter got me, but I'd managed to hold it together, until the end.
I remember when David was in the more violent throws of his dizziness, there was a certain look that would flicker across his face as it kicked in. Instinctively I'd throw myself towards the left-hand side of his body, to prop him up, but just thinking about that look makes my belly flip, still.
I found myself closing my eyes halfway through reading, and sending whatever part of myself is able to time travel (and I believe some parts can) to sit with you at the airport. In silence. Holding your hand. Whispering I'm sorry, and I love you, and that nothing lasts. ♥️
It got me too. ;) Many, many gulps. It's hard to fathom what its like for a loved one to watch this whole unraveling happen. You certainly felt your own version of green every time you saw the flicker across David's face. I shared this last chapter with my Dave before posting and after reading, he showed up in my office and started bawling. I think by writing this period of our life together I'm ripping off an old, crusty band-aid. One we left on way too long, knowing that healing had happened and we didn't dare go back into those feelings. He said he was crying for the terror I felt, but also, like an outsider viewing another's story, the man who was rendered so helpless to a loved one's pain. And then his own on top of it. It was all too much, but now we cry tears of joy for making it through. This writing business isn't for the faint of heart. xo
Your writing always impresses me so much, Kimberly. The description of your experience going through the revolving doors of doctors offices and the uncertainty of not knowing what is wrong — was incredibly moving.
I’ve had my own misdiagnosed injury and so I related to your words in a deep way.
Every chapter, from the very start has left me speechless.
In awe of your ability to continue, your stamina, how, when most would have melted into a quivering sorry for themselves mess or wrapped themselves in a blanket and hidden from the world, have you still put one foot in front of the other, still met with clients, done your job, attended meetings, met with unknown family, been a mother to another beautiful human, a loving and caring wife? How?
This one stopped me breathing Kimberly…
Do you think, sometimes, our hearts and heads, the deepest part of our souls, just reach critical mass? Tell us, « enough, too much information, computer says No» ?
Holding you tight sweet soul… holding onto hope for you… xxx
Could you have asked for a better, more reassuring and loving family? I mean, it doesn't surprise me, because you are part of them and they are part of you, but still, every time I read their instantaneous unconditional love for you it moves me.
Your description of your inner experience is terrifyingly vivid.
I could not. It's been eight years now and still baffles and delights me daily. They are a great testament to the power of love. If you liked the Aykut art, you might enjoy googling some of his others. I think he was creating pre-AI, so I'm sure there are many others doing what he was doing, but in a MidJourney instant, but his vision is still very provocative.
It certainly made me think "oh this is great AI composition" and then retracted that thought when I saw it was by a real artist. Thanks for sharing their work.
Dear Kimberly, this chapter made me cry, for all that you have been through in the last chaps which I have been reading quietly w/o comment cos I didn’t want to break the spell….connecting with the Brauer family and they are soo lovely and then of course it’s all too much, your descriptions of your symptoms at dinner and in the hotel room on that job, brilliant! Glued to your seat and missing the plane to the next job. Of course, the silences btw you and Dave, your mindfulness of his fragile state and then your email to the cousins… and their response, that’s when I cried and I could keep crying for you, for me, for your Charlie, for my Charlie for all our pain but I have to go to my appt to another kookie practitioner who I hope will fix my latest health challenge. Oh hell, I’m late cos I’m talking to you! Much love, Jan
Haha. You successfully made ME teary, to be followed with a good chuckle. I like how typing our comments here can feel like "talking." You have such an empathic way Jan, thank you for feeling into all these twisted chapters with me and living yours alongside. Cheers to our Charlies. Wishing you clarity and calm in your current health challenges. xo
I could feel the pain and fear of what you experienced then, when everything is so new and terrifying and discombobulating you just want to get out of your body. I've been there. Much empathy to you, dear Kimberly. I'm happy to see you smiling more and being able to be in balance with your unfortunate circumstances. It's certainly not easy. :-*
Thank you sister. We could have days and days of conversations on these experiences of ours. I'd like to learn more about yours someday if you'd ever be up for an interview. No rush, I have plenty on my plate right now, but just putting a pin in it. :)
Oh my gosh, yes. So much magic and catharsis and strangeness in our experiences. Wow, that is such a kind offer. Thank you! I would so love that. Maybe we can do a duo interview, both interviewing each other at the same time. Whenever you're up for it. I know you have a lot going on, so there's no rush at all. I would love to someday feature you on my space as well! I will take a break shortly for a few months, but I would love to publish a guest post of your work once I'm back. You're so sweet. :-*
I am always so moved by your words and how you describe your symptoms with such force I feel I’m on the swells with you. This morning, my face shimmering with tears, I think I about how helpless and alone you must’ve felt then. It reminds me of how helpless and alone I felt as I unraveled in front of my computer at work. Knowing my life was about to change the minute I made one call. The call for help I knew I needed, but kept refusing to believe. Like you. It will pass. I will be fine. I just need a few days.
Days turned into weeks, then months and now years. I struggle to accept, but know I must. I’m desperately hanging onto your wise words from our conversation a few weeks ago. I must learn to co-exist with the beauty and terror my life holds at the moment. Seeing you do so successfully gives me such hope. Xo
Oh Kim, I still don't know the details of your unraveling but my heart aches with you. How life can change in an instant, how much longer it takes to integrate, draw meaning, allow peace. I don't know if my words are wise as much as honest, but I certainly know I am a living-breathing example of hell freezing over and then somehow, eventually, painfully and then absolutely, a thawing. Hope. Springtime promises ushering summer harvests. Please don't hesitate to reach out if you'd ever like an ear, someone who gets the terror on such a deep level. I don't have advice but I can definitely hold you and offer solidarity as you walk through it.
On Sunday morn, I always eagerly await the arrival of the next chapter of your memoir! Today didn’t disappoint. Although I held my breath as you so clearly described the storm of dizziness that changed the familiar trajectory of your life…
A mother’s job is to protect her offspring from whatever befalls. But whatever you were going through was SO INVISIBLE from the outside! I, too, felt helpless. Loving you, Kim.
Your helplessness, vulnerability and steadfast love were there every step of the way momma. You gave me strength when I didn't have any. You allowed me to find peace in falling apart as you held me through it all.
Hey, I’ve experienced EXACTLY what you’re describing over the past ten years, and it is HELL. I have two diagnoses from all of the testing and drs appts, neurologist and ENT appts. The first diagnosis I got was MS. Which I have. However, I think you might have MdDS. There is a spontaneous version which can suddenly happen to anyone and the dizziness/walls and floor moving/sea sickness feeling must last more than 6 weeks for it to be this. It’s called Mal de Debarquement Syndrome. Please message me anytime if you have any questions. I would answer whatever I can for you, as I know how insanely hard it is to do ANYTHING feeling like this.
Please take care,
Kimberly James
Oh honey, you need to put an MD after your name! MdDS is EXACTLY my diagnosis, though it took a full 5 years for it to be known. I love that you figured this out from one essay. Thank you for your kindness and thoughtful response. I wish I had met you 8 years ago when this all began! (As you might guess, my memoir isn’t real time. I still have constant dizziness now but it’s so much more tolerable, I’m on medication and I’ve adapted.) Sending you and that body of yours a giant hug.
When you don't demand pity from your readers, you make it possible to let them get right in there with you and watch tragedy unfold. This a nightmare recounted by a grown-up.
What a brilliant reflection Adam. And a hard line to walk... the need for others to understand, especially when something is invisible, has felt quite desperate at times. Seeking pity is never the answer, and isolates further...seeking instead solidarity, or at the very least, a companion, makes the descent not quite so lonely and quite possibly even more universal, each of us extending a hand, one nightmare to another.
Lifted up by the love of strangers. We are here for you whatever piece of you , even for a minute or a lifetime, we’ll take it. And we will cherish it .
Not very strange after all.
If only.
If only love could heal all.
Who the hell knows, just maybe, it will.
Your "if only" might be the truest healing of all. Maybe not always physical healing, but certainly an unconditional healing of hearts, minds, psyches, souls... Thank you for your healing.
I'm reading this with my breath held because even though I my own symptoms are not anywhere close to what you describe, I've also been struggling with dizziness for a couple of months - so I absolutely understand that same fear - times 100 in your case. I'm pushing on because I want to get all caught up before we talk on Monday but my heart goes out to you, my dear... 💜
Oh dear Troy! Not you too? Dizziness is no joke; as much as we "know" we won't fall over, the primal parts of our brain signal off so many alarm bells that our very sanity is in peril. I hope your ground solidifies soon, or at the very least, should we wear sailor caps for our Monday interview?
Well I had a terrible bout of vertigo last year due to a medication, unable to even stand for six hours at a time - these last couple of months it's milder, and I suspect it's connected to allergies/inner ear but also a two-tiered tinnitus? (Dr. on Monday before our interview...) We'll see, but that fear is very real. I think we're good - looking forward to it. :)
"My body’s new homeostasis, terror" was so how I felt when my seizures began. You capture the storm so poetically and then come in with the shelter of the familial at the end and it's just beautiful. :)
🙏I know you get this down to the inner core.
Oh, Kimberly. I know I say that a lot in this comment section AND I have to say it again. The way you're able to convey this horrifying journey in the most thrilling and elegant way is pure magnificence. I was literally griping the arm rests on my desk chair as I was reading. I am so grateful that you've figured this all out AND my heart aches that you had to go through it for as long as you did. Also that piece of artwork could not be more perfect to accompany this chapter.
Then the ending. Total burst of happy love tears. I always have to save your posts when I have ample time to absorb and feel after I read them. They are just so devastating (in the best possible way) and full of pure heart.
I'm copy and pasting this part because it's so damn beautiful and makes me so damn happy.
"We love you. Even if you’re only up for a hug, that’s fine with us. We just want you to be well. We’re all happy to be here together so no pressure on when you are able to connect. It doesn’t have to be for long. And did we mention that we love you?" What an incredibly soft place to land. 🥹
Wow, you write so vividly about the unraveling of health, putting words to what appears invisible. Thank you!
Thank you Elizabeth. I know you know it all too well. I think this journey has encouraged articulation from my cells. It's a slow process with a lot of quiet listening, but it's been wild to find that our bodies have words too, not just our minds.
This was so hard to read as I felt trapped in your terrifying dizziness, but compelling too because of your talent and the love around you. I feel so deeply for you having been imprisoned in your own body. I know a little of having to make daily adjustments for exhaustion and pain, life unravelling. And then hope💜
Thank you for feeling into this one Mya. It sounds like you have your own version of physical imprisonment, how unrelenting and tiresome it can be, but necessary, almost as if the exhaustion finally gives way to surrender. Surrender giving way to hope.
*Gulp* The reply from your new family got me. This whole chapter got me, but I'd managed to hold it together, until the end.
I remember when David was in the more violent throws of his dizziness, there was a certain look that would flicker across his face as it kicked in. Instinctively I'd throw myself towards the left-hand side of his body, to prop him up, but just thinking about that look makes my belly flip, still.
I found myself closing my eyes halfway through reading, and sending whatever part of myself is able to time travel (and I believe some parts can) to sit with you at the airport. In silence. Holding your hand. Whispering I'm sorry, and I love you, and that nothing lasts. ♥️
It got me too. ;) Many, many gulps. It's hard to fathom what its like for a loved one to watch this whole unraveling happen. You certainly felt your own version of green every time you saw the flicker across David's face. I shared this last chapter with my Dave before posting and after reading, he showed up in my office and started bawling. I think by writing this period of our life together I'm ripping off an old, crusty band-aid. One we left on way too long, knowing that healing had happened and we didn't dare go back into those feelings. He said he was crying for the terror I felt, but also, like an outsider viewing another's story, the man who was rendered so helpless to a loved one's pain. And then his own on top of it. It was all too much, but now we cry tears of joy for making it through. This writing business isn't for the faint of heart. xo
Your writing always impresses me so much, Kimberly. The description of your experience going through the revolving doors of doctors offices and the uncertainty of not knowing what is wrong — was incredibly moving.
I’ve had my own misdiagnosed injury and so I related to your words in a deep way.
Thank you :)
Every chapter, from the very start has left me speechless.
In awe of your ability to continue, your stamina, how, when most would have melted into a quivering sorry for themselves mess or wrapped themselves in a blanket and hidden from the world, have you still put one foot in front of the other, still met with clients, done your job, attended meetings, met with unknown family, been a mother to another beautiful human, a loving and caring wife? How?
This one stopped me breathing Kimberly…
Do you think, sometimes, our hearts and heads, the deepest part of our souls, just reach critical mass? Tell us, « enough, too much information, computer says No» ?
Holding you tight sweet soul… holding onto hope for you… xxx
Could you have asked for a better, more reassuring and loving family? I mean, it doesn't surprise me, because you are part of them and they are part of you, but still, every time I read their instantaneous unconditional love for you it moves me.
Your description of your inner experience is terrifyingly vivid.
The art by Aykut seems so fitting here.
I could not. It's been eight years now and still baffles and delights me daily. They are a great testament to the power of love. If you liked the Aykut art, you might enjoy googling some of his others. I think he was creating pre-AI, so I'm sure there are many others doing what he was doing, but in a MidJourney instant, but his vision is still very provocative.
It certainly made me think "oh this is great AI composition" and then retracted that thought when I saw it was by a real artist. Thanks for sharing their work.
Dear Kimberly, this chapter made me cry, for all that you have been through in the last chaps which I have been reading quietly w/o comment cos I didn’t want to break the spell….connecting with the Brauer family and they are soo lovely and then of course it’s all too much, your descriptions of your symptoms at dinner and in the hotel room on that job, brilliant! Glued to your seat and missing the plane to the next job. Of course, the silences btw you and Dave, your mindfulness of his fragile state and then your email to the cousins… and their response, that’s when I cried and I could keep crying for you, for me, for your Charlie, for my Charlie for all our pain but I have to go to my appt to another kookie practitioner who I hope will fix my latest health challenge. Oh hell, I’m late cos I’m talking to you! Much love, Jan
Haha. You successfully made ME teary, to be followed with a good chuckle. I like how typing our comments here can feel like "talking." You have such an empathic way Jan, thank you for feeling into all these twisted chapters with me and living yours alongside. Cheers to our Charlies. Wishing you clarity and calm in your current health challenges. xo
I could feel the pain and fear of what you experienced then, when everything is so new and terrifying and discombobulating you just want to get out of your body. I've been there. Much empathy to you, dear Kimberly. I'm happy to see you smiling more and being able to be in balance with your unfortunate circumstances. It's certainly not easy. :-*
Thank you sister. We could have days and days of conversations on these experiences of ours. I'd like to learn more about yours someday if you'd ever be up for an interview. No rush, I have plenty on my plate right now, but just putting a pin in it. :)
Oh my gosh, yes. So much magic and catharsis and strangeness in our experiences. Wow, that is such a kind offer. Thank you! I would so love that. Maybe we can do a duo interview, both interviewing each other at the same time. Whenever you're up for it. I know you have a lot going on, so there's no rush at all. I would love to someday feature you on my space as well! I will take a break shortly for a few months, but I would love to publish a guest post of your work once I'm back. You're so sweet. :-*