I’ve been reading Brisbane by Eugene Vodolazkin, which is a contemporary novel about a Ukrainian/Russian musician who is losing his ability to play due to Parkinson’s. I’m not done with the novel yet, but as I near the end he’s putting on a concert with a girl who is dying from liver failure and the beauty of them both coming together in this struggle to make music despot their illness is absolutely heartbreakingly gorgeous.
I just finished Brisbane, it's beautiful! The main theme is very appropriate here. The character Franz-Peter sums it up in this way: "life is one long habituation to death." (p. 302)
I'm always, always going to recommend Heather Lanier's Raising A Rare Girl for anything even remotely related to this. It truly drives home what it means to live as if you believe human life is infinitely valuable without any regard for its usefulness.
In my own life, I'm finally in a place where I can not only recognize my limitations but act on them. I'm starting to say no to things if I don't have the energy for them, which sometimes means that if I've worked my usual five or six days in the week, I can't go see friends on Saturday night, not if I want to have energy for church in the morning without having to "borrow" that energy from what I need to be ready to do well on Monday, starting off the next week right. The limits of what I can do without wearing myself out haven't moved much: the change is not in myself, but that now they are becoming visible to other people. I am very fortunate to have good people around me who don't try to make me feel bad for taking care of myself, or shame me for being less outgoing than someone else, but I often catch myself berating me for being lazy or a weakling or not caring enough about the people who want me to do things with them.
A very unchosen gift --- both very unchosen and very much a gift, which sometimes I can recognize --- is that sometimes I have to let people help. I don't like being vulnerable to people or letting myself become indebted, or on a more superficial level, letting people see just how bad the state of my house has gotten when I let them in to help clean it, because I'm supposed to be a capable adult with her priorities straight, which means taking good care of my surroundings. But, as I've read in several places, if nobody ever needed help, nobody would ever /get/ to help anyone else, and would be prevented from doing good deeds that way. I'm making an occasion for the people around me to do noble things because of my inability to go to Walmart, or do the dishes this week, or whatever it might be.
Obviously because I'm still able to go to work most days every week, I'm a lot more able than a lot of other people, and that still often makes me wonder (though logically I know it's wrong) whether, because so many other people have it so much harder, I even deserve to ask for help for my petty troubles. There too I can be an opportunity for people to do a good thing by reminding me of the proper way of looking at things.
While not *exactly* a debility, the experience of having newborn twins and a sickly 2yo (followed by one newborn, two 2yos, and a sickly 4yo; followed by husband losing job when the last newborn was 4 mos old) was definitely a gift. While it was incredibly hard and utterly exhausting, I say all the time that it "cured" me of perfectionism. The need to constantly triage all the urgencies, the need to choose between sleep and picking up toys, the need to socialize in spite of the effort to get everyone dressed, presentable, and into and out of four car seats, the need to get dinner made by starting it in the morning so I could work on it on and off all day - these taught me what was really important. It was simply impossible for everything to be important. Before that, my ridiculous standards were so "high" that I lost sight of relationships; since then, I know that a house can go a very long time with puzzle pieces everywhere and it won't cause the world to end. I'm grateful for the experience, despite it being the hardest few years of my life.
In terms of the frustration of having to "lower" my standards, the only possible way to deal with it was to accept it. I did this kicking and screaming and very gradually over many years, but I am grateful to have arrived. Now after 14 years of homeschooling I am experiencing the grace of enough time to recover our home from the ravages of being really, really lived in for a decade-and-a-half. It's a painful but beautiful process of saying goodbye to my children's childhoods and welcoming their young adulthoods with open arms and the ability to surrender.
"What do you do with the real frustration of losing a capacity, no matter what consolations accompany it?"
Honest answer: I'm not sure, and I wish I knew. "Correct" answer: Channel that frustration into something "productive". (And who decides what is "productive" enough to count, anyhow?)
"Over the weekend, I’d love to hear any of your own recommendations (poetical or otherwise) about the gifts that can come from dependence. And it’s fine to also share works that are about real grief at what is lost; whatever else is gained."
Sometimes I write music. Typically choral music, since I'm a frustrated singer — not frustrated for lack of talent (mine is adequate) but inadequate symptom control for health problems that interfere, and dashed hopes for discovering good symptom control before my voice ages. I respond musically to news of someone I know beaten during a mugging, having to "pull the plug" on a loved one, or grieving over suicide.
It might be mannerist-inspired (manner-ish?) polyphony on psalm passages (here, Psalm 42; < 5 min.):
(Is high-church Taizé blues a genre? Should it be?)
I could quite literally be "writing songs that voices never share". Music more banal than mine is often used in church, but it's not like mine is so outstanding the world would beat a path to my door upon hearing a few computer-generated samples. People who write music for worship usually write it in a community, *for* a community, while filling certain *recognized roles* in the community, roles harder to carve out and fill if you're not 100% able-bodied. So I have no idea if my channeling grief into musical composition is "productive" or just vanity (in all senses of "vanity"). But it is work about real grief and loss.
And exactly what I needed today (though I didn’t know it till just now).
This pair of lines:
“but the way you cause me to move
securely where I'd never move on my own”
really resonates with me as my disability has required me to stand up for myself in ways I never would have chosen if left to my natural tendencies. This week, in fact.
I have an energy-limiting disabling illness that was very common pre-pandemic and is already 4x more common now. But the medical community is still largely ignorant of it. One of my hopes has been that my experience with the disease would raise awareness of it and enable doctors to become more comfortable with it . . . and the opposite has happened. So this week I’ve found courage and words to take it to the insurance company and “file a grievance” asking that they look into their lack of service for my disease. An out-of-comfort-zone action, but being able to have the words (firm yet compassionate, I believe) is indeed a sign of the gifts I’ve been given through this disability.
Another gift: the gift of grappling with human value apart from what I can and can’t do.
And John Milton’s sonnet “On His Blindness” has been a help to me over the years.
“What do you do with the real frustration of losing a capacity, no matter what consolations accompany it?”
Bump into it often. Feel all the feels about it all over again.
Having an energy-limiting illness means that today’s wrestling with the healthcare system may greatly reduce the energy I have for being present with friends and family during this weekend’s get-togethers . . . or may mean I have a severe symptom flare in a week or so. It will definitely affect my ability to sleep (overtiredness = insomnia).
Because there’s no “gas-gauge” by which to measure how much energy is in the tank, it’s impossible to be completely accurate with how soon it will give out. So flares and crashes are almost always a bit surprising.
And because my energy levels differ so much from friends and family, I’m also always running up against all their feels about my limitations, too. Which isn’t a bad thing, but definitely hard. Esp when someone takes it personally that I have to tap out from something, or when another person continues to get hopes up that I’ll be able to do something big today that’s been off the table for me for multiple years now. Part of me wants to say “when will you just accept that this isn’t ok for me to do?” Part of me dreads the day when she does accept and stops inviting me.
There’s not really much to “do” with these daily, weekly, monthly losses except to meet them one by one with as open a heart as I can. And to try to embrace them as part of my own personal human Hard. Because no one gets out of this world without living with Hard.
I hear you! In my own experience I would say the unpredictability of it is often the hardest. It's hard to know what to commit to, and I always feel terrible when I back out of commitments, and bored and lonely and useless when I don't have any commitments.
In my patient support group, we were discussing what this unpredictability means for romantic love once. I said I thought we a special duty not to overpromise in romance, to resolve "maybes" into "nos" if they need resolution.
That's what I did for my own husband, turning down his proposal first, telling him I was turning it down because I wasn't certain yet, and I didn't want to give a "yes" that was only "maybe".
It can feel so good to promise something when you're in love, even when the cold light of reason reveals the unlikelihood of fulfilling the promise. We'll already let enough people down quite by accident, without being careless with others' hearts when we're carried away by fleeting sentiment.
The art of aiming for promises you can keep, especially when, even with your best aim, you'll leave many broken, is hard to master.
I've been pondering your questions for a few days as I think about those I know who have experienced dependence enforced by debility.
What is interesting is that they are seeing the debility and dependence as an experience of grace, of "taking up one's cross," or of humbling oneself.
However, their debilities are the result of chronic conditions that they have had for years but which they mismanaged, going so far as to neglect their health.
It seems to me the moment of enlightenment would have been before the chronic conditions worsened, to see a diagnosis as a moment of grace to improve upon one's quality of life.
But that wasn't what happened. Notwithstanding all the admonitions, they went down the path they chose, and now they are experiencing the results.
With respect, this comes comes across a little insensitive. My story is only one example, but my daughter's chronic illness began when she was 15 or 16, and was possibly the long-term effects of an unknown virus. I'm just not sure a 15yo has the maturity, life experience, or even luck to anticipate what is happening and prevent it; in fact, as soon as her symptoms began we started trying to manage them, and they just kept getting worse.
I don't think my comment was insensitive. You're talking about a 15 year old. I'm talking about people diagnosed with conditions like diabetes in their 40s and 50s but who are now in their 80s and suffering from complications that were preventable.
I’ve been reading Brisbane by Eugene Vodolazkin, which is a contemporary novel about a Ukrainian/Russian musician who is losing his ability to play due to Parkinson’s. I’m not done with the novel yet, but as I near the end he’s putting on a concert with a girl who is dying from liver failure and the beauty of them both coming together in this struggle to make music despot their illness is absolutely heartbreakingly gorgeous.
I just finished Brisbane, it's beautiful! The main theme is very appropriate here. The character Franz-Peter sums it up in this way: "life is one long habituation to death." (p. 302)
I'm always, always going to recommend Heather Lanier's Raising A Rare Girl for anything even remotely related to this. It truly drives home what it means to live as if you believe human life is infinitely valuable without any regard for its usefulness.
In my own life, I'm finally in a place where I can not only recognize my limitations but act on them. I'm starting to say no to things if I don't have the energy for them, which sometimes means that if I've worked my usual five or six days in the week, I can't go see friends on Saturday night, not if I want to have energy for church in the morning without having to "borrow" that energy from what I need to be ready to do well on Monday, starting off the next week right. The limits of what I can do without wearing myself out haven't moved much: the change is not in myself, but that now they are becoming visible to other people. I am very fortunate to have good people around me who don't try to make me feel bad for taking care of myself, or shame me for being less outgoing than someone else, but I often catch myself berating me for being lazy or a weakling or not caring enough about the people who want me to do things with them.
A very unchosen gift --- both very unchosen and very much a gift, which sometimes I can recognize --- is that sometimes I have to let people help. I don't like being vulnerable to people or letting myself become indebted, or on a more superficial level, letting people see just how bad the state of my house has gotten when I let them in to help clean it, because I'm supposed to be a capable adult with her priorities straight, which means taking good care of my surroundings. But, as I've read in several places, if nobody ever needed help, nobody would ever /get/ to help anyone else, and would be prevented from doing good deeds that way. I'm making an occasion for the people around me to do noble things because of my inability to go to Walmart, or do the dishes this week, or whatever it might be.
Obviously because I'm still able to go to work most days every week, I'm a lot more able than a lot of other people, and that still often makes me wonder (though logically I know it's wrong) whether, because so many other people have it so much harder, I even deserve to ask for help for my petty troubles. There too I can be an opportunity for people to do a good thing by reminding me of the proper way of looking at things.
Strongly seconding the recommendation of Raising a Rare Girl.
While not *exactly* a debility, the experience of having newborn twins and a sickly 2yo (followed by one newborn, two 2yos, and a sickly 4yo; followed by husband losing job when the last newborn was 4 mos old) was definitely a gift. While it was incredibly hard and utterly exhausting, I say all the time that it "cured" me of perfectionism. The need to constantly triage all the urgencies, the need to choose between sleep and picking up toys, the need to socialize in spite of the effort to get everyone dressed, presentable, and into and out of four car seats, the need to get dinner made by starting it in the morning so I could work on it on and off all day - these taught me what was really important. It was simply impossible for everything to be important. Before that, my ridiculous standards were so "high" that I lost sight of relationships; since then, I know that a house can go a very long time with puzzle pieces everywhere and it won't cause the world to end. I'm grateful for the experience, despite it being the hardest few years of my life.
In terms of the frustration of having to "lower" my standards, the only possible way to deal with it was to accept it. I did this kicking and screaming and very gradually over many years, but I am grateful to have arrived. Now after 14 years of homeschooling I am experiencing the grace of enough time to recover our home from the ravages of being really, really lived in for a decade-and-a-half. It's a painful but beautiful process of saying goodbye to my children's childhoods and welcoming their young adulthoods with open arms and the ability to surrender.
"What do you do with the real frustration of losing a capacity, no matter what consolations accompany it?"
Honest answer: I'm not sure, and I wish I knew. "Correct" answer: Channel that frustration into something "productive". (And who decides what is "productive" enough to count, anyhow?)
"Over the weekend, I’d love to hear any of your own recommendations (poetical or otherwise) about the gifts that can come from dependence. And it’s fine to also share works that are about real grief at what is lost; whatever else is gained."
Sometimes I write music. Typically choral music, since I'm a frustrated singer — not frustrated for lack of talent (mine is adequate) but inadequate symptom control for health problems that interfere, and dashed hopes for discovering good symptom control before my voice ages. I respond musically to news of someone I know beaten during a mugging, having to "pull the plug" on a loved one, or grieving over suicide.
It might be mannerist-inspired (manner-ish?) polyphony on psalm passages (here, Psalm 42; < 5 min.):
https://drive.google.com/file/d/1ugzsq_NFkCj3WxrLjOpVAfnqmBEHwa7c/view?usp=sharing
or re-setting well-loved hymn lyrics to mournful canon to bring out their darker side (here, "What a friend we have in Jesus"; < 4 min.):
https://drive.google.com/file/d/1S86o_wIi39JYd-yIgb-z_qY-FScX6oHa/view?usp=sharing
(Is high-church Taizé blues a genre? Should it be?)
I could quite literally be "writing songs that voices never share". Music more banal than mine is often used in church, but it's not like mine is so outstanding the world would beat a path to my door upon hearing a few computer-generated samples. People who write music for worship usually write it in a community, *for* a community, while filling certain *recognized roles* in the community, roles harder to carve out and fill if you're not 100% able-bodied. So I have no idea if my channeling grief into musical composition is "productive" or just vanity (in all senses of "vanity"). But it is work about real grief and loss.
I read this (definitely Catholic) book about accepting and doing God's will for your life, called "Into Your Hands Father," and I loved this line:
"I need this sickness. Otherwise God would not have sent it."
Oh, my goodness! So so good!
And exactly what I needed today (though I didn’t know it till just now).
This pair of lines:
“but the way you cause me to move
securely where I'd never move on my own”
really resonates with me as my disability has required me to stand up for myself in ways I never would have chosen if left to my natural tendencies. This week, in fact.
I have an energy-limiting disabling illness that was very common pre-pandemic and is already 4x more common now. But the medical community is still largely ignorant of it. One of my hopes has been that my experience with the disease would raise awareness of it and enable doctors to become more comfortable with it . . . and the opposite has happened. So this week I’ve found courage and words to take it to the insurance company and “file a grievance” asking that they look into their lack of service for my disease. An out-of-comfort-zone action, but being able to have the words (firm yet compassionate, I believe) is indeed a sign of the gifts I’ve been given through this disability.
Another gift: the gift of grappling with human value apart from what I can and can’t do.
And John Milton’s sonnet “On His Blindness” has been a help to me over the years.
“What do you do with the real frustration of losing a capacity, no matter what consolations accompany it?”
Bump into it often. Feel all the feels about it all over again.
Having an energy-limiting illness means that today’s wrestling with the healthcare system may greatly reduce the energy I have for being present with friends and family during this weekend’s get-togethers . . . or may mean I have a severe symptom flare in a week or so. It will definitely affect my ability to sleep (overtiredness = insomnia).
Because there’s no “gas-gauge” by which to measure how much energy is in the tank, it’s impossible to be completely accurate with how soon it will give out. So flares and crashes are almost always a bit surprising.
And because my energy levels differ so much from friends and family, I’m also always running up against all their feels about my limitations, too. Which isn’t a bad thing, but definitely hard. Esp when someone takes it personally that I have to tap out from something, or when another person continues to get hopes up that I’ll be able to do something big today that’s been off the table for me for multiple years now. Part of me wants to say “when will you just accept that this isn’t ok for me to do?” Part of me dreads the day when she does accept and stops inviting me.
There’s not really much to “do” with these daily, weekly, monthly losses except to meet them one by one with as open a heart as I can. And to try to embrace them as part of my own personal human Hard. Because no one gets out of this world without living with Hard.
I hear you! In my own experience I would say the unpredictability of it is often the hardest. It's hard to know what to commit to, and I always feel terrible when I back out of commitments, and bored and lonely and useless when I don't have any commitments.
In my patient support group, we were discussing what this unpredictability means for romantic love once. I said I thought we a special duty not to overpromise in romance, to resolve "maybes" into "nos" if they need resolution.
That's what I did for my own husband, turning down his proposal first, telling him I was turning it down because I wasn't certain yet, and I didn't want to give a "yes" that was only "maybe".
It can feel so good to promise something when you're in love, even when the cold light of reason reveals the unlikelihood of fulfilling the promise. We'll already let enough people down quite by accident, without being careless with others' hearts when we're carried away by fleeting sentiment.
The art of aiming for promises you can keep, especially when, even with your best aim, you'll leave many broken, is hard to master.
I've been pondering your questions for a few days as I think about those I know who have experienced dependence enforced by debility.
What is interesting is that they are seeing the debility and dependence as an experience of grace, of "taking up one's cross," or of humbling oneself.
However, their debilities are the result of chronic conditions that they have had for years but which they mismanaged, going so far as to neglect their health.
It seems to me the moment of enlightenment would have been before the chronic conditions worsened, to see a diagnosis as a moment of grace to improve upon one's quality of life.
But that wasn't what happened. Notwithstanding all the admonitions, they went down the path they chose, and now they are experiencing the results.
With respect, this comes comes across a little insensitive. My story is only one example, but my daughter's chronic illness began when she was 15 or 16, and was possibly the long-term effects of an unknown virus. I'm just not sure a 15yo has the maturity, life experience, or even luck to anticipate what is happening and prevent it; in fact, as soon as her symptoms began we started trying to manage them, and they just kept getting worse.
I don't think my comment was insensitive. You're talking about a 15 year old. I'm talking about people diagnosed with conditions like diabetes in their 40s and 50s but who are now in their 80s and suffering from complications that were preventable.