Your words are like a live visit with a life-long, dear, and treasured friend who understands me and my perspective and my life with a clarity that no other human has. I cannot thank you enough for your precision, specificity in description, humor, lightness, insight, balance, bewilderment, images. I want all of your articles in a book that I can give to every doctor who tells me I'm fine, every person who tells me I look good, and that I can read in the moments when I am feeling very alone. The softness of your words clash with the harshness of the physical experience in a way that makes it all real, palpable. You are giving me an enormous and generous gift every time you put pen to paper or finger to keyboard. (I'm guessing it is latter as pen to paper wastes way too much energy and in living an economic, energy management life, even a minute effort takes herculean effort that one not living like this does not understand.)
Every time I try to gut an action out because it seems urgently or crucially necessary, the payback flattens me to where I wonder if my arrogance and personality are taking me to melt into the bed or the floor as I draw one of my last breaths. And then I laugh now as my words sound hyperbolic and dramatic because it seems that no one understands that the experience is so very, searingly real.
I hope you put your words into a book so I can have them complete, so I can console myself at any moment that I am not crazy, I am not lying, I am not stupid, I am not grabbing for attention. Your words are at the top of the list of when it comes to an effective pain-reliever because the joys though small by normal standards keep me striving to breathe, make it through the moment or the day.
Please, please make your memoirs available to those of us who cherish gain strength from what you so generously and clearly share. YOU are a treasure. Your words are treasured. Your medicine is the best. I want to hear and witness more of what you are living because it is a witness to my own meager and confusing life.
May God richly bless you and fill you with those minute breaths of joy and sweetness which make the next struggle a little bit less difficult. May he bring you love, peace, and refill your cup of graciousness that you so kindly share with us, your experiential kin.
This is a lot to receive, and I am not going to pretend otherwise or wave it off. Thank you. What you describe wanting, something to hand the doctor who says you are fine and the person who says you look good, is the exact use I hoped this writing might have, and reading that it lands that way for you is its own entry on the other side of the ledger.
You guessed right, by the way. Finger to keyboard, and even that gets rationed. The fact that you knew without being told is the whole thing in one sentence.
On the book: it exists in draft. The series is being assembled into a manuscript, and getting it into a form people can hold is one of the few forward-facing projects I have let myself keep. I cannot promise a date, because dates are a currency I do not reliably have, but it is real and it is happening at the speed the body allows.
The part where you laugh at your own words for sounding dramatic and then say it is searingly real anyway, I know that exact loop. It is not arrogance and it is not hyperbole. It is what it costs to gut out an action that any other person would not even count as an action. You are not crazy, not lying, not grabbing for attention. You are reporting accurately from inside something most people never have to describe.
Thank you for reading this closely. It matters more than the small column usually gets to.
I can type while lying on my side. Sometimes I do it poorly with one finger. Sometimes I squish both hands up to the keyboard (like now) so I can appear to be a normal typist. (Masking reality, I want you to know you are more than worth the silly pretense!) You clearly give a lot and very generously. Thank you, my friend. It’s hard to hold one’s head high and march along with confidence when one is lying in bed and hunting and pecking with one finger, but you do it well! You bring joy and aliveness with you!
Thanks for articulating this so clearly. While I am beyond grateful for those small things that still light my day, they do not make up for the loss, even if they take me out of myself for a minute or two. I think some people think we should be grateful for any light, but sometimes I want to be fully in the world. And I can’t.
I remember well when I first became ill with ME/CFS. I was 26 years old, bedridden, unable to walk, cycle, swim, go on bushwalks and camp with my friends. It felt entirely like my life was over and, to a great extent, it was. I was pretty down about it all, possibly depressed, certainly very gloomy. I did improve a little bit, enough to get out and about, but I was still counting all the many, many things that I could no longer do.
Then I went to a Reiki workshop - because I still believed (at that time) all the woo-woo and whacky and totally unproven people out there who said they could cure me. Of course that did not happen, and I got totally exhausted from the weekend workshop. But somehow, out of that, something in my mindset changed, and I was able to change my focus towards all the things I could still do. Like you so eloquently write, it did not balance the ledger, because those things were tiny, and all that I lost was absolutely huge. But it did change the way I felt about it all, and I slowly shifted from utterly miserable to kind of resigned, clear-eyed and even (eventually) towards slightly hopeful.
FRED: please, Please, PLEASE compile your words for those of us who have them invisibly tattooed on our bodies from top to bottom, between on fingers, on the soles of our feet and in the creases of our eyelids. Your words are so real, they feel like my skin.
I have found the small things can add up to something that sustains me in the more difficult moments. Nothing easy about it... but it does help to put even a few things in the addition column.
Fred, I finally figured out how to access and subscribe to substacks. It was never worth the hassle to figure out the newest way to get into trouble with the computer.
Thanks for this. It captures the experience of that very small life we can end up in which is hard to explain. Life becomes livable because it has become so small.
Your words are like a live visit with a life-long, dear, and treasured friend who understands me and my perspective and my life with a clarity that no other human has. I cannot thank you enough for your precision, specificity in description, humor, lightness, insight, balance, bewilderment, images. I want all of your articles in a book that I can give to every doctor who tells me I'm fine, every person who tells me I look good, and that I can read in the moments when I am feeling very alone. The softness of your words clash with the harshness of the physical experience in a way that makes it all real, palpable. You are giving me an enormous and generous gift every time you put pen to paper or finger to keyboard. (I'm guessing it is latter as pen to paper wastes way too much energy and in living an economic, energy management life, even a minute effort takes herculean effort that one not living like this does not understand.)
Every time I try to gut an action out because it seems urgently or crucially necessary, the payback flattens me to where I wonder if my arrogance and personality are taking me to melt into the bed or the floor as I draw one of my last breaths. And then I laugh now as my words sound hyperbolic and dramatic because it seems that no one understands that the experience is so very, searingly real.
I hope you put your words into a book so I can have them complete, so I can console myself at any moment that I am not crazy, I am not lying, I am not stupid, I am not grabbing for attention. Your words are at the top of the list of when it comes to an effective pain-reliever because the joys though small by normal standards keep me striving to breathe, make it through the moment or the day.
Please, please make your memoirs available to those of us who cherish gain strength from what you so generously and clearly share. YOU are a treasure. Your words are treasured. Your medicine is the best. I want to hear and witness more of what you are living because it is a witness to my own meager and confusing life.
May God richly bless you and fill you with those minute breaths of joy and sweetness which make the next struggle a little bit less difficult. May he bring you love, peace, and refill your cup of graciousness that you so kindly share with us, your experiential kin.
Catherine,
This is a lot to receive, and I am not going to pretend otherwise or wave it off. Thank you. What you describe wanting, something to hand the doctor who says you are fine and the person who says you look good, is the exact use I hoped this writing might have, and reading that it lands that way for you is its own entry on the other side of the ledger.
You guessed right, by the way. Finger to keyboard, and even that gets rationed. The fact that you knew without being told is the whole thing in one sentence.
On the book: it exists in draft. The series is being assembled into a manuscript, and getting it into a form people can hold is one of the few forward-facing projects I have let myself keep. I cannot promise a date, because dates are a currency I do not reliably have, but it is real and it is happening at the speed the body allows.
The part where you laugh at your own words for sounding dramatic and then say it is searingly real anyway, I know that exact loop. It is not arrogance and it is not hyperbole. It is what it costs to gut out an action that any other person would not even count as an action. You are not crazy, not lying, not grabbing for attention. You are reporting accurately from inside something most people never have to describe.
Thank you for reading this closely. It matters more than the small column usually gets to.
Fred
Fred,
I can type while lying on my side. Sometimes I do it poorly with one finger. Sometimes I squish both hands up to the keyboard (like now) so I can appear to be a normal typist. (Masking reality, I want you to know you are more than worth the silly pretense!) You clearly give a lot and very generously. Thank you, my friend. It’s hard to hold one’s head high and march along with confidence when one is lying in bed and hunting and pecking with one finger, but you do it well! You bring joy and aliveness with you!
Thanks for articulating this so clearly. While I am beyond grateful for those small things that still light my day, they do not make up for the loss, even if they take me out of myself for a minute or two. I think some people think we should be grateful for any light, but sometimes I want to be fully in the world. And I can’t.
May those small moments increase…
I’m grateful for this community and was nodding to every word you wrote. ❤️
Thank you Fred.
I remember well when I first became ill with ME/CFS. I was 26 years old, bedridden, unable to walk, cycle, swim, go on bushwalks and camp with my friends. It felt entirely like my life was over and, to a great extent, it was. I was pretty down about it all, possibly depressed, certainly very gloomy. I did improve a little bit, enough to get out and about, but I was still counting all the many, many things that I could no longer do.
Then I went to a Reiki workshop - because I still believed (at that time) all the woo-woo and whacky and totally unproven people out there who said they could cure me. Of course that did not happen, and I got totally exhausted from the weekend workshop. But somehow, out of that, something in my mindset changed, and I was able to change my focus towards all the things I could still do. Like you so eloquently write, it did not balance the ledger, because those things were tiny, and all that I lost was absolutely huge. But it did change the way I felt about it all, and I slowly shifted from utterly miserable to kind of resigned, clear-eyed and even (eventually) towards slightly hopeful.
FRED: please, Please, PLEASE compile your words for those of us who have them invisibly tattooed on our bodies from top to bottom, between on fingers, on the soles of our feet and in the creases of our eyelids. Your words are so real, they feel like my skin.
I have found the small things can add up to something that sustains me in the more difficult moments. Nothing easy about it... but it does help to put even a few things in the addition column.
Fred, I finally figured out how to access and subscribe to substacks. It was never worth the hassle to figure out the newest way to get into trouble with the computer.
Thanks for this. It captures the experience of that very small life we can end up in which is hard to explain. Life becomes livable because it has become so small.