Constraints on what you can and can’t do clarify what’s of utmost importance in life. Disabilities are a gift in this regard.
I fell off a 13-foot-high rock when I was six. I’m lucky I lived. I put my right arm out to break my fall, and the bone in that arm broke so extravagantly it came out of my skin into the air. I’m here to tell you that when bone and air make contact, a black hole of pain ensues!
I broke about five bones that day. The main bone that broke through my skin was so mangled, the story goes that “it took the biggest person in the hospital pop it back in place!” Not a finesse job, apparently.
When the bone was “popped back in place,” it was not correctly lined up, rotationally, and when my arm healed, I lost about 80° of rotation in my right arm. Since I’m right handed, what this means is that I can’t turn my right arm flat like a normal person, which means:
-I can’t use a normal computer keyboard. I use a vertical keyboard.
-I can’t use a normal mouse. I use vertical mice or track pads.
-I can’t do things like empty my dishwasher, because the tiny movements strain my arm so much that I get pain if I do it on a daily basis.
-There’s just about no sport I can participate in, because most sports use some kind of stick or ball — tennis, baseball, lacrosse, basketball — which is incompatible with my arm’s capacities and the pain that would ensue. (I also have knee issues which makes running a problem as well, so soccer and other non-arm sports are out also.)
-I can’t play musical instruments for the same reason. I had a gorgeous traditional Korean hourglass jang-gu drum once, that I had someone bring back from Korea. I loved playing it with all my heart, but the pain was prohibitive. I had to sell it, so sad!
It’s taken many hours of therapy for me to accept all the limitations that have arisen as a result of losing 80° of rotation in my right arm. Because of these limitations, many activities are dead ends for me.
I deeply wanted to play the piano, but that’s completely impossible — a piano keyboard is a horizontal proposition just like a computer keyboard, and there’s no chance I could interact with it without serious pain.
Inside, I’m a musical, athletic person who would love to spend my time playing instruments and sports. But those things are almost completely prohibited because of my arm. This has forced me to go deeper inside myself, and focus on my mystical proclivities.
Despite the grief of losing these avenues of self-expression, in the long run, I see my disability as a gift because it’s forced me to focus even more deeply on my inner work.
Limitations create the freedom to focus very deeply on the most valuable things, and to do the grief work of letting go of more than you thought you could ever let go of.
I now try to live by the rule “If it’s not a nine out of ten, it’s a zero.“ If something isn’t a nine out of ten in terms of the level of satisfaction and meaning it gives me, I try to eliminate it. It’s a super tough standard to live by, but because I’ve done so much work accepting the many limitations caused by my disabilities, it’s become easier over time.
I don’t wish physical limitations on anyone. But we live in a world with gravity, and few of us get to adulthood completely unscathed! Accepting the limitations disabilities bring us = accepting the gifts of trauma.
As a severe trauma survivor, I know that there is nothing that’s all good or all bad. Every trauma, every limitation, also carries the seed of a certain power and liberation for us, if we have the time, resources and privilege to unpack it.
“Because of these limitations, many activities are dead ends for me. “ I was hoping that someone (like me) from the disability community had commented here, and here you are. To us, the thought-exercise in this post is not hypothetical. As disability advocates sometimes say: “everyone is temporarily able-bodied.”
You describe so well here the challenge of managing our limitations, in service of making the most of focus / capacity - sometimes day-to-day; other times hour-to-hour. Thank you. 💙
This is also real life for me, much of the time. My energy level is severely limited by my chronic illnesses. I have many days - weeks or months of them inactive row, sometimes - when I quite literally can’t do more than 5 minutes of non-sedentary activity without needing to stop and lie down. Changing the sheets on my bed requires two sessions with a break in between. If I do a load of laundry, I’d better not try to do anything else that day beyond basic self care. (This is an improvement over the years when 1 load of laundry = 2-3 days recovery in bed.)
You learn to essentialize, prioritize, delegate. You figure out every energy-saving shortcut for everything. You accept any and all help that comes your way. You learn which necessary parts of life can be neglected the longest without blowing up in your face. You innovate ways to do improbable things while lying down.
I’m thankful to be in a season of good days (relatively, for me) at the moment, but that still means significantly fewer usable hours in the day than most people can count on, and that’s always going to be life for me. I’m at peace with my health, but it’s a management project.
Similarly, considering my partners enforced need to think about this ‘experiment’ every day as part of managing a chronic debilitating condition - versus my ‘endless choice’ mode is sobering.
I too, hoped someone else would comment. Melissa (ouch!), a very honest & touching assessment. Limitations can be so hard when they're always here with us. Having someone like Chris come up with this scenario really hit home because that hour (& spaced out of course), is about all food, chores, movement & a feeble attempt to pretend I can push through & have a small business.
Thank you all for your thoughts on this. It is very centering. And kind.
I do this all the time with chores I don’t want to do. I give myself x minutes to do y. Example, 15 minutes to clean the kitchen.
But the real issue is paid employee work. I’ve been working a long time, in different functions. I am questioning everything including the concept of an eight hour day. If I can zero in, plan, organize something in an hour or two and execute, that most people could never do, what is that two hours really worth?
It’s high time to reevaluate the 8-hour workday and the 5-day work week. I could see back in 2008 that we had the technology for MANY PEOPLE to work from home which cuts down pollution, cuts down excessive traffic and allows more time for spending time with family or friends and time for creative enjoyment which is GOOD FOR THE BRAIN. But thanks to the capitalist industrial complex, we are still stuck with an 8-hour workday/5-day workweek which barely serves anyone, not even the capitalist who makes money off the backs of our hard labor. There are studies that show the BENEFITS of more time for creative play on the brain, and it actually IMPROVES PRODUCTIVITY, but the powers that be refuse to believe it and the insist on seeing butts in seats.
As someone who has been a hard worker all her life, its galled me to see employees who got paid more than I did simply goof off more on the computer or they did some work in a half assed manner while I worked hard to insure my department had what they needed, and much of that work could have been done from the comfort of my own home and without the stress of a horrible commute which has been researched to show that driving in traffic NEGATIVELY IMPACTS ONES MENTAL HEALTH. More world from home and less hours of work will do wonders for the mental health of many people, it would certainly have kept me from having burnout/nervous breakdown 👍🏼
This question alone gives me a pang of low grade anxiety as I tend to operate from a time scarcity mindset and the "you need to be productive" guilt trip bestowed upon me by my family ethos. Despite my awareness of statrting every day by first counting the hours I slept (which informs me of how exhasuted I should feel) and then how many hours I have to work that day (which are seldom enough to complete the tasks alloted) I get caught in the "not enough" hype in my head. This began the year I started my own business AND had a child — where every day feels like a race to aptly serve one or the other — and with luck, carve out time for a hike with the dog (my mental + emotional health regime).
Since its a pro d day with my daughter home from school and a work day — I'm giving this some deep consideration as I plan my calendar.
I have done this with my art work only time wasn’t the restriction. Choosing different restrictive parameters opens the gate to creativity… not limiting one’s creativity. Figuring out as many ways to stay within ser restrictions is actually freeing.
the only thing I can think about, is how would I live? How could I do anything to make enough money in one hour to live on? How much would I have to charge? And one hour -- is that one student contact hour, or one hour of any work tasks, at all? What about time I spend thinking about work? If it's student contact time, how much outside time would I have to spend, to make sure that one hour was so amazing, it was worth my being paid a day's wages for it?
Having a business BEFORE having a child and then realizing I only had a certain amount of hours to work, it’s helped me prioritize. It’s also helped me realize what’s important and say no and set better boundaries.
I love this exercise and it can be seen through different filters, maybe you are have a disability, caretaking of elderly parents, children or others who need you or work different jobs. The more you can focus on what’s the most important thing and what’s going to make the most impact now can help.
Hi Chris. It’s fascinating that you have taken on this topic. For the past four years, it is what I have lived. (Perhaps I’ll write about it one day on my page.)
I’ve been living with a rare condition called Spinal CFS leak. It’s where the fluid surrounding and cushioning the brain and the spinal cord is leaking out somewhere along the way. (My leak was caused by an error made by a resident.) It often takes years to find it, and usually many treatments to obtain resolution. I’m one of the fortunate people for whom it’s only been four years thus far. It is not only work that I have lost, but living life as I knew it.
The debilitating CSF leak causes many issues, (too many to go into) which can only be responded to by laying flat for 99% of the time. I used to have an hour of upright time each day, recently it is down to about ten to fifteen minutes at a time.
My point here is not to collect pity. Not at all. I’m recovering from a second spinal surgery and the neurosurgeon thinks he’s fixed it. (Fingers crossed) I am patient.
What I have done to continue living independently is to select one thing to accomplish each day. Just one thing. It might be cook a big pot of chili, or make a lasagna.(I can then freeze portions for later). It might be change the sheets on the bed, or take a shower, or wash dishes.(etc). I break tasks down into ten minute increments of upright time. It has been a challenge that my loving friends and family, and kind neighbors have helped me with. I have not been able to drive, have had periods of brain fog, was losing my vision as my brain stem pushed down on my occipital nerve, I couldn’t walk very far, as I would fall or faint. And it is, exactly what you say, a challenging life.
It has brought me many hours of reflection about the world, my place in it, and what truly matters.
I have learned to cope with chronic pain, inability to socialize and have barely worked.
I’m not losing hope though.
I have learned to do things while laying down. For months it had been difficult to hold a book and read for any length of time. One of my family bought me a gizmo that holds my iPad over my abdomen, so I can see and read. I’ve learned that using two things at a time to distract and busy the mind works best to cope with the pain. So. I listen to audio books sometimes, and do jigsaw puzzles on the iPad. I now have a headset I can use to speak in the phone with clients. I’ve limited the number of clients I work with greatly, and am not accepting new ones and I only work by telephone right now, but hopefully this will improve.
I have learned to respond to all these changes with meditation and gratitude. I use Metta techniques to focus loving kindness to specific people and the whole planet. I look only at what is here right now, to deal with today. My condition has created a space in my world where I can write more. This is good. All of this has deepened me. And for that I am grateful.
Well, considering I do zero hours of work for the last two years... I MEAN, NOTHING!
I try this whenever I am in a world building mood. I don't want to have an overload, but I also know I need to keep a little bit of momentum. It was the same with LinkedIn for a little while, trying to write and interact, but that yield was not as fulfilling.
Constraints on what you can and can’t do clarify what’s of utmost importance in life. Disabilities are a gift in this regard.
I fell off a 13-foot-high rock when I was six. I’m lucky I lived. I put my right arm out to break my fall, and the bone in that arm broke so extravagantly it came out of my skin into the air. I’m here to tell you that when bone and air make contact, a black hole of pain ensues!
I broke about five bones that day. The main bone that broke through my skin was so mangled, the story goes that “it took the biggest person in the hospital pop it back in place!” Not a finesse job, apparently.
When the bone was “popped back in place,” it was not correctly lined up, rotationally, and when my arm healed, I lost about 80° of rotation in my right arm. Since I’m right handed, what this means is that I can’t turn my right arm flat like a normal person, which means:
-I can’t use a normal computer keyboard. I use a vertical keyboard.
-I can’t use a normal mouse. I use vertical mice or track pads.
-I can’t do things like empty my dishwasher, because the tiny movements strain my arm so much that I get pain if I do it on a daily basis.
-There’s just about no sport I can participate in, because most sports use some kind of stick or ball — tennis, baseball, lacrosse, basketball — which is incompatible with my arm’s capacities and the pain that would ensue. (I also have knee issues which makes running a problem as well, so soccer and other non-arm sports are out also.)
-I can’t play musical instruments for the same reason. I had a gorgeous traditional Korean hourglass jang-gu drum once, that I had someone bring back from Korea. I loved playing it with all my heart, but the pain was prohibitive. I had to sell it, so sad!
It’s taken many hours of therapy for me to accept all the limitations that have arisen as a result of losing 80° of rotation in my right arm. Because of these limitations, many activities are dead ends for me.
I deeply wanted to play the piano, but that’s completely impossible — a piano keyboard is a horizontal proposition just like a computer keyboard, and there’s no chance I could interact with it without serious pain.
Inside, I’m a musical, athletic person who would love to spend my time playing instruments and sports. But those things are almost completely prohibited because of my arm. This has forced me to go deeper inside myself, and focus on my mystical proclivities.
Despite the grief of losing these avenues of self-expression, in the long run, I see my disability as a gift because it’s forced me to focus even more deeply on my inner work.
Limitations create the freedom to focus very deeply on the most valuable things, and to do the grief work of letting go of more than you thought you could ever let go of.
I now try to live by the rule “If it’s not a nine out of ten, it’s a zero.“ If something isn’t a nine out of ten in terms of the level of satisfaction and meaning it gives me, I try to eliminate it. It’s a super tough standard to live by, but because I’ve done so much work accepting the many limitations caused by my disabilities, it’s become easier over time.
I don’t wish physical limitations on anyone. But we live in a world with gravity, and few of us get to adulthood completely unscathed! Accepting the limitations disabilities bring us = accepting the gifts of trauma.
As a severe trauma survivor, I know that there is nothing that’s all good or all bad. Every trauma, every limitation, also carries the seed of a certain power and liberation for us, if we have the time, resources and privilege to unpack it.
As Mary Oliver said in “The Uses of Sorrow”
Someone I loved once gave me
a box full of darkness.
It took me years to understand
that this, too, was a gift.
“Because of these limitations, many activities are dead ends for me. “ I was hoping that someone (like me) from the disability community had commented here, and here you are. To us, the thought-exercise in this post is not hypothetical. As disability advocates sometimes say: “everyone is temporarily able-bodied.”
You describe so well here the challenge of managing our limitations, in service of making the most of focus / capacity - sometimes day-to-day; other times hour-to-hour. Thank you. 💙
This is also real life for me, much of the time. My energy level is severely limited by my chronic illnesses. I have many days - weeks or months of them inactive row, sometimes - when I quite literally can’t do more than 5 minutes of non-sedentary activity without needing to stop and lie down. Changing the sheets on my bed requires two sessions with a break in between. If I do a load of laundry, I’d better not try to do anything else that day beyond basic self care. (This is an improvement over the years when 1 load of laundry = 2-3 days recovery in bed.)
You learn to essentialize, prioritize, delegate. You figure out every energy-saving shortcut for everything. You accept any and all help that comes your way. You learn which necessary parts of life can be neglected the longest without blowing up in your face. You innovate ways to do improbable things while lying down.
I’m thankful to be in a season of good days (relatively, for me) at the moment, but that still means significantly fewer usable hours in the day than most people can count on, and that’s always going to be life for me. I’m at peace with my health, but it’s a management project.
Similarly, considering my partners enforced need to think about this ‘experiment’ every day as part of managing a chronic debilitating condition - versus my ‘endless choice’ mode is sobering.
I too, hoped someone else would comment. Melissa (ouch!), a very honest & touching assessment. Limitations can be so hard when they're always here with us. Having someone like Chris come up with this scenario really hit home because that hour (& spaced out of course), is about all food, chores, movement & a feeble attempt to pretend I can push through & have a small business.
Thank you all for your thoughts on this. It is very centering. And kind.
So beautifully shared. Thank you.
I do this all the time with chores I don’t want to do. I give myself x minutes to do y. Example, 15 minutes to clean the kitchen.
But the real issue is paid employee work. I’ve been working a long time, in different functions. I am questioning everything including the concept of an eight hour day. If I can zero in, plan, organize something in an hour or two and execute, that most people could never do, what is that two hours really worth?
It’s high time to reevaluate the 8-hour workday and the 5-day work week. I could see back in 2008 that we had the technology for MANY PEOPLE to work from home which cuts down pollution, cuts down excessive traffic and allows more time for spending time with family or friends and time for creative enjoyment which is GOOD FOR THE BRAIN. But thanks to the capitalist industrial complex, we are still stuck with an 8-hour workday/5-day workweek which barely serves anyone, not even the capitalist who makes money off the backs of our hard labor. There are studies that show the BENEFITS of more time for creative play on the brain, and it actually IMPROVES PRODUCTIVITY, but the powers that be refuse to believe it and the insist on seeing butts in seats.
As someone who has been a hard worker all her life, its galled me to see employees who got paid more than I did simply goof off more on the computer or they did some work in a half assed manner while I worked hard to insure my department had what they needed, and much of that work could have been done from the comfort of my own home and without the stress of a horrible commute which has been researched to show that driving in traffic NEGATIVELY IMPACTS ONES MENTAL HEALTH. More world from home and less hours of work will do wonders for the mental health of many people, it would certainly have kept me from having burnout/nervous breakdown 👍🏼
This question alone gives me a pang of low grade anxiety as I tend to operate from a time scarcity mindset and the "you need to be productive" guilt trip bestowed upon me by my family ethos. Despite my awareness of statrting every day by first counting the hours I slept (which informs me of how exhasuted I should feel) and then how many hours I have to work that day (which are seldom enough to complete the tasks alloted) I get caught in the "not enough" hype in my head. This began the year I started my own business AND had a child — where every day feels like a race to aptly serve one or the other — and with luck, carve out time for a hike with the dog (my mental + emotional health regime).
Since its a pro d day with my daughter home from school and a work day — I'm giving this some deep consideration as I plan my calendar.
I have done this with my art work only time wasn’t the restriction. Choosing different restrictive parameters opens the gate to creativity… not limiting one’s creativity. Figuring out as many ways to stay within ser restrictions is actually freeing.
Indeed! A sonnet is a great example!
If I only had 1h I would do the work. Because then I could do something more fun and interesting.
the only thing I can think about, is how would I live? How could I do anything to make enough money in one hour to live on? How much would I have to charge? And one hour -- is that one student contact hour, or one hour of any work tasks, at all? What about time I spend thinking about work? If it's student contact time, how much outside time would I have to spend, to make sure that one hour was so amazing, it was worth my being paid a day's wages for it?
Having a business BEFORE having a child and then realizing I only had a certain amount of hours to work, it’s helped me prioritize. It’s also helped me realize what’s important and say no and set better boundaries.
I love this exercise and it can be seen through different filters, maybe you are have a disability, caretaking of elderly parents, children or others who need you or work different jobs. The more you can focus on what’s the most important thing and what’s going to make the most impact now can help.
Goodbpost!
This is a common theme for folks who have autoimmune issues or other chronic diseases.
There's a whole community built up around spoonies.
Sometimes folks wake up and they get an hour, sometimes four... The tricky part is if you overdo it, it steals spoons/hours from the next day.
https://alsnewstoday.com/social-clips/what-is-a-spoonie/#:~:text=Spoonie%20is%20a%20term%20coined,like%20washing%20or%20getting%20dressed.
Hi Chris. It’s fascinating that you have taken on this topic. For the past four years, it is what I have lived. (Perhaps I’ll write about it one day on my page.)
I’ve been living with a rare condition called Spinal CFS leak. It’s where the fluid surrounding and cushioning the brain and the spinal cord is leaking out somewhere along the way. (My leak was caused by an error made by a resident.) It often takes years to find it, and usually many treatments to obtain resolution. I’m one of the fortunate people for whom it’s only been four years thus far. It is not only work that I have lost, but living life as I knew it.
The debilitating CSF leak causes many issues, (too many to go into) which can only be responded to by laying flat for 99% of the time. I used to have an hour of upright time each day, recently it is down to about ten to fifteen minutes at a time.
My point here is not to collect pity. Not at all. I’m recovering from a second spinal surgery and the neurosurgeon thinks he’s fixed it. (Fingers crossed) I am patient.
What I have done to continue living independently is to select one thing to accomplish each day. Just one thing. It might be cook a big pot of chili, or make a lasagna.(I can then freeze portions for later). It might be change the sheets on the bed, or take a shower, or wash dishes.(etc). I break tasks down into ten minute increments of upright time. It has been a challenge that my loving friends and family, and kind neighbors have helped me with. I have not been able to drive, have had periods of brain fog, was losing my vision as my brain stem pushed down on my occipital nerve, I couldn’t walk very far, as I would fall or faint. And it is, exactly what you say, a challenging life.
It has brought me many hours of reflection about the world, my place in it, and what truly matters.
I have learned to cope with chronic pain, inability to socialize and have barely worked.
I’m not losing hope though.
I have learned to do things while laying down. For months it had been difficult to hold a book and read for any length of time. One of my family bought me a gizmo that holds my iPad over my abdomen, so I can see and read. I’ve learned that using two things at a time to distract and busy the mind works best to cope with the pain. So. I listen to audio books sometimes, and do jigsaw puzzles on the iPad. I now have a headset I can use to speak in the phone with clients. I’ve limited the number of clients I work with greatly, and am not accepting new ones and I only work by telephone right now, but hopefully this will improve.
I have learned to respond to all these changes with meditation and gratitude. I use Metta techniques to focus loving kindness to specific people and the whole planet. I look only at what is here right now, to deal with today. My condition has created a space in my world where I can write more. This is good. All of this has deepened me. And for that I am grateful.
Thanks for allowing me to share.
Well, considering I do zero hours of work for the last two years... I MEAN, NOTHING!
I try this whenever I am in a world building mood. I don't want to have an overload, but I also know I need to keep a little bit of momentum. It was the same with LinkedIn for a little while, trying to write and interact, but that yield was not as fulfilling.