I was studying for a PhD in Education (I was working full-time as a literacy/arts teacher in elementary school at the time) with a toddler and a baby. I was also a concert pianist (dream of becoming a conductor stopped when I went to teachers’ college, but student loans needed paying, and so I taught it to keen young musicians on the side.
This was my excellent life. One day I fell, and couldn’t get back up. Lost the use of my legs (and of course, hands…no playing for me). Turned out I have Multiple Sclerosis.
Had to “retire” from my job in my early 30’s. No PhD. Am back playing a bit, but I have nowhere near the strength or coordination to play at a level that was commonplace for me, so playing doesn’t give me too much joy, but at least my left hand works a bit now.
Not dead! :) Mourned my life for a while, and now I do what I can, when I can. Learned a lot about being brave, accepting what you can, fighting for what may be worth it, letting go what you must. Appreciate the smaller things so much more. Mindfulness helps, gratitude, too.
Exactly as you say - if you are alive, you are doing well (generally speaking). Every event can be an opportunity for positive growth, and I mean even the most horrible. :)
Keep reminding yourself after dealing with these smaller things that you did it. You got through it, and if you can do that, you can handle the next one.
There is no timeline, nor judgement. We all find our way in our own time. I still have very down days, which is normal (for some ;). Just as you say, each day is a gift and a chance at better things. :)
Oh I wish I could, and I think of grand schemes, but because I can’t be consistent it is incredibly difficult. I can wake up one day and feel relatively well, but have a terrible afternoon. Or, wake up feeling awful - for three weeks, then just a bit worse than flu-like for months, with a good day slipped to confuse me and give me false hope. It’s incredibly unpredictable for me, as it is for most people with MS. I’m very lucky that my mobility improved and is still relatively good, compared to the typical patient (I use a cane, not all the time, or a walker if I’m feeling up to a long day doing something like a theme park or mall with my kids). I’ve lost almost all my hearing in one ear, my vision is affected, not that I’m
going to bore you with every symptom because you can look
up MS if you like and I don’t ever want to sound like a complainer. Many of my symptoms are ‘invisible’ so if you met me, especially on a good day, you may not even think anything is wrong, so I am very lucky that my progression is slow. I may try teaching music privately from my home in the fall, just a few half hour lessons peppered through the week - that would give me joy (and some income). I’ve thought of online copywriting or editing, maybe virtual tutoring, but there’s nothing I can do with absolute commitment on my part, as far as working with deadlines or being able to promise a certain amount of hours in a day are concerned. I’m not ‘dependable’, which has cost me close friendships, as well as the ability to work.
We’ll see. I miss my career, and the drive and hope I had to climb that ladder, too. Still - life changes for everyone - and if you don’t change with it, to some degree, you were will wither. I am lucky that I can still do some fine art when I’m up to it. My left hand wasn’t great for a while but I’ve seen improvement, so I can still play the piano, not to my previous ability, but active gratitude is a practice I work at so I don’t live each day with resentment. I have mourned my old life, made peace with my new one, and I work at finding joy and fulfilment in other ways. I may finish the novel I’ve been working on for years. I consider myself lucky that I didn’t get sick until my mid 30’s, so I was able to complete some education (not quite as far I wanted to go, but I did finish some post grad) and I was healthy enough to have two excellent children. I was actively raising them through their toddler years and only needed help when they got older, which my husband at the time could do. I could be so much worse, so I focus on the positive, as much as I can. I have MS friends who died in their 40’s, horrible deaths, while others are wheelchair bound or worse. And, I can confidently contribute to some wonderful communities of readers, writers, and thinkers, like the one Athena has here. Like you. :) Thanks for the sympathy and interest.
"No deeply felt love and no deeply felt loss". Yes. And even amongst neurotypicals, the degree of love and loss and emotional investment varies a lot. For the least resilient, setbacks are experienced either as losing the possibility of an intense and profound and rare pleasure, or else as the prospect of having to endure severe pain, or both, and the resulting storm in the head and the heart and soul can destroy people, and no sensible advice to go with the flow makes any difference at all.
I can easily see that you were not passionate about ballet. I'm curious, though, about something else that the term "passion" might apply to in your life. Namely, your level of commitment to explaining to NT's and the world at large what psychopathy really is, and what it's like to be one.
I mean, would you say you are passionate about doing this? Or if not, what word would you use?
That is, I realize that your commitment is probably not especially emotional even though it appears to be quite strong. Or maybe it is somewhat emotional?
And clearly you do feel -- or possibly experience is a better term -- what one might call the intellectual emotions: curiosity, surprise, awe at landscape beauty, disgust at "ugliness" eg disinformation, Spock's "fascinating". What about emotions like annoyance? Irritation? And you've mentioned that boredom is a biggie.
I wouldn't describe that as a "passion". More like it's something that I am capable of doing, and I noted a distinctive lack of information from the point of view from an actual psychopath. I do enjoy writing, so it is a decent overlap of both information sharing, and something that I enjoy doing.
Cool. I appreciate your sharing and the clarity and eloquence of your writing. There aren't a lot of places anymore where I learn new stuff. Your articles are one of them.
Emotions can make you and they can brake you. For some each day is a struggle. Picking yourself up and moving on, is not always a choice. Sometimes just making it through the day can be a challenge, a loss can be so great that it changes everything.
You're fortunate not to be hindered by this. Yet somewhat unfortunate not to feel the great love and joy that this comes from . That is the flip side.
Having children runs that spectrum and losing one can be so painful that some people never recover from it . I think that the amount of love or joy one feels for someone or something dictates how much pain comes from the loss of said, simply put, and sometimes emotional pain is just too much to bare. Not something you can really understand. Which is not necessarily a bad thing.
I don't know if that is the best way to think about it though. I have seen a lot of people mourning children that see it that way, and they won't allow themselves to accept that loss, and become mired in it. I don't think that the degree of mourning informs how much that child was loved, just different coping mechanisms. My parents of course loved my sister deeply, but they adjusted to her suicide over time, and were able to continue to function in their lives.
If you allow the depth of your grief to be the measurement of your love, you are effectively allowing your grief to write the story of the lost child. It seems that they wouldn't want their parents to stagnate in a well of grief, nor would they want that level of pain to demonstrate how loved they were in life.
Of course, everyone experiences grief very differently, and however a person moves through that time in their lives is very personal. As I haven't that experience, I can only give my perspective from outside.
I can see from a logical point of view how you would think this way. Maybe I wasn't clear enough, there are of course many things that come into play when it comes to grief, like you said, but how much you love someone does play a significant part in how deep your pain will be. If you love your pet and it dies, you'll be sad, but a child is on a whole other level of love, and so is the amount of grief you feel at the loss. I'm not saying it's the only influence, but what I'm saying it will strongly effect you. Support is important, coping is important as well, a persons limitations are important, but generally the more you have invested emotionally, not so much as a measurement as cause and effect, will impact how you will feel. Love defies logic very often. Of course no child wants their parents life to stagnate, but it does happen and there are some parents who can't get past it, so they survive one day at a time, as opposed to thrive . There are some who just can't bare the pain, very few but some. I was told by more then one psychologist that losing a child is the worse grief a person can feel. I think in part because it is not the natural course of life .
It was the course of life until very recently in history. Child mortality has been very high even as recently as the twenties, and women could expect to lose many, most, or even all of the children that they bore.
Deaths of children one year of age, per thousand live births fell from 85.8% in 1920, to 7.2% in the 1997. Substantial global progress has been made in reducing child deaths since 1990.
I am certainly not underplaying the loss of child. I only mean to say that it was more a part of history, than children surviving consistently to adulthood.
Yes I'm aware of that. I was talking about a child at any age not just infants. Personally I think losing ones child after years of life is harder to adjust to. But that's just my opinion from personal experience, I could be way off.
Definitely agree that with plans it’s definitely a good idea not to put all your eggs in one basket and have a plan b (even a c if possible) and change course if plan A gets totally messed up!
I was studying for a PhD in Education (I was working full-time as a literacy/arts teacher in elementary school at the time) with a toddler and a baby. I was also a concert pianist (dream of becoming a conductor stopped when I went to teachers’ college, but student loans needed paying, and so I taught it to keen young musicians on the side.
This was my excellent life. One day I fell, and couldn’t get back up. Lost the use of my legs (and of course, hands…no playing for me). Turned out I have Multiple Sclerosis.
Had to “retire” from my job in my early 30’s. No PhD. Am back playing a bit, but I have nowhere near the strength or coordination to play at a level that was commonplace for me, so playing doesn’t give me too much joy, but at least my left hand works a bit now.
Not dead! :) Mourned my life for a while, and now I do what I can, when I can. Learned a lot about being brave, accepting what you can, fighting for what may be worth it, letting go what you must. Appreciate the smaller things so much more. Mindfulness helps, gratitude, too.
Exactly as you say - if you are alive, you are doing well (generally speaking). Every event can be an opportunity for positive growth, and I mean even the most horrible. :)
This is the sort of attitude and determination that I can respect.
Now this is a compliment indeed!
I am in awe of people who manage to do as you did when life deals severe blows. Despite years of diligent effort, I still struggle with smaller ones.
Keep reminding yourself after dealing with these smaller things that you did it. You got through it, and if you can do that, you can handle the next one.
Oh I do, I do all the things, it's a lifelong job.
There is no timeline, nor judgement. We all find our way in our own time. I still have very down days, which is normal (for some ;). Just as you say, each day is a gift and a chance at better things. :)
Very true
I’m really sorry to hear that. Have you been able to return to doing any kind of work at all- even if it’s just part time from home at all?
Oh I wish I could, and I think of grand schemes, but because I can’t be consistent it is incredibly difficult. I can wake up one day and feel relatively well, but have a terrible afternoon. Or, wake up feeling awful - for three weeks, then just a bit worse than flu-like for months, with a good day slipped to confuse me and give me false hope. It’s incredibly unpredictable for me, as it is for most people with MS. I’m very lucky that my mobility improved and is still relatively good, compared to the typical patient (I use a cane, not all the time, or a walker if I’m feeling up to a long day doing something like a theme park or mall with my kids). I’ve lost almost all my hearing in one ear, my vision is affected, not that I’m
going to bore you with every symptom because you can look
up MS if you like and I don’t ever want to sound like a complainer. Many of my symptoms are ‘invisible’ so if you met me, especially on a good day, you may not even think anything is wrong, so I am very lucky that my progression is slow. I may try teaching music privately from my home in the fall, just a few half hour lessons peppered through the week - that would give me joy (and some income). I’ve thought of online copywriting or editing, maybe virtual tutoring, but there’s nothing I can do with absolute commitment on my part, as far as working with deadlines or being able to promise a certain amount of hours in a day are concerned. I’m not ‘dependable’, which has cost me close friendships, as well as the ability to work.
We’ll see. I miss my career, and the drive and hope I had to climb that ladder, too. Still - life changes for everyone - and if you don’t change with it, to some degree, you were will wither. I am lucky that I can still do some fine art when I’m up to it. My left hand wasn’t great for a while but I’ve seen improvement, so I can still play the piano, not to my previous ability, but active gratitude is a practice I work at so I don’t live each day with resentment. I have mourned my old life, made peace with my new one, and I work at finding joy and fulfilment in other ways. I may finish the novel I’ve been working on for years. I consider myself lucky that I didn’t get sick until my mid 30’s, so I was able to complete some education (not quite as far I wanted to go, but I did finish some post grad) and I was healthy enough to have two excellent children. I was actively raising them through their toddler years and only needed help when they got older, which my husband at the time could do. I could be so much worse, so I focus on the positive, as much as I can. I have MS friends who died in their 40’s, horrible deaths, while others are wheelchair bound or worse. And, I can confidently contribute to some wonderful communities of readers, writers, and thinkers, like the one Athena has here. Like you. :) Thanks for the sympathy and interest.
No worries. Glad to hear that you’ve been able to find some positive ways forward despite your situation.
Great advice.
Thank you
"No deeply felt love and no deeply felt loss". Yes. And even amongst neurotypicals, the degree of love and loss and emotional investment varies a lot. For the least resilient, setbacks are experienced either as losing the possibility of an intense and profound and rare pleasure, or else as the prospect of having to endure severe pain, or both, and the resulting storm in the head and the heart and soul can destroy people, and no sensible advice to go with the flow makes any difference at all.
It is an experience that I do not envy nor wish for.
I can easily see that you were not passionate about ballet. I'm curious, though, about something else that the term "passion" might apply to in your life. Namely, your level of commitment to explaining to NT's and the world at large what psychopathy really is, and what it's like to be one.
I mean, would you say you are passionate about doing this? Or if not, what word would you use?
That is, I realize that your commitment is probably not especially emotional even though it appears to be quite strong. Or maybe it is somewhat emotional?
And clearly you do feel -- or possibly experience is a better term -- what one might call the intellectual emotions: curiosity, surprise, awe at landscape beauty, disgust at "ugliness" eg disinformation, Spock's "fascinating". What about emotions like annoyance? Irritation? And you've mentioned that boredom is a biggie.
I wouldn't describe that as a "passion". More like it's something that I am capable of doing, and I noted a distinctive lack of information from the point of view from an actual psychopath. I do enjoy writing, so it is a decent overlap of both information sharing, and something that I enjoy doing.
Cool. I appreciate your sharing and the clarity and eloquence of your writing. There aren't a lot of places anymore where I learn new stuff. Your articles are one of them.
That's really excellent. Thank you for reading.
Emotions can make you and they can brake you. For some each day is a struggle. Picking yourself up and moving on, is not always a choice. Sometimes just making it through the day can be a challenge, a loss can be so great that it changes everything.
You're fortunate not to be hindered by this. Yet somewhat unfortunate not to feel the great love and joy that this comes from . That is the flip side.
Having children runs that spectrum and losing one can be so painful that some people never recover from it . I think that the amount of love or joy one feels for someone or something dictates how much pain comes from the loss of said, simply put, and sometimes emotional pain is just too much to bare. Not something you can really understand. Which is not necessarily a bad thing.
I don't know if that is the best way to think about it though. I have seen a lot of people mourning children that see it that way, and they won't allow themselves to accept that loss, and become mired in it. I don't think that the degree of mourning informs how much that child was loved, just different coping mechanisms. My parents of course loved my sister deeply, but they adjusted to her suicide over time, and were able to continue to function in their lives.
If you allow the depth of your grief to be the measurement of your love, you are effectively allowing your grief to write the story of the lost child. It seems that they wouldn't want their parents to stagnate in a well of grief, nor would they want that level of pain to demonstrate how loved they were in life.
Of course, everyone experiences grief very differently, and however a person moves through that time in their lives is very personal. As I haven't that experience, I can only give my perspective from outside.
I can see from a logical point of view how you would think this way. Maybe I wasn't clear enough, there are of course many things that come into play when it comes to grief, like you said, but how much you love someone does play a significant part in how deep your pain will be. If you love your pet and it dies, you'll be sad, but a child is on a whole other level of love, and so is the amount of grief you feel at the loss. I'm not saying it's the only influence, but what I'm saying it will strongly effect you. Support is important, coping is important as well, a persons limitations are important, but generally the more you have invested emotionally, not so much as a measurement as cause and effect, will impact how you will feel. Love defies logic very often. Of course no child wants their parents life to stagnate, but it does happen and there are some parents who can't get past it, so they survive one day at a time, as opposed to thrive . There are some who just can't bare the pain, very few but some. I was told by more then one psychologist that losing a child is the worse grief a person can feel. I think in part because it is not the natural course of life .
It was the course of life until very recently in history. Child mortality has been very high even as recently as the twenties, and women could expect to lose many, most, or even all of the children that they bore.
Deaths of children one year of age, per thousand live births fell from 85.8% in 1920, to 7.2% in the 1997. Substantial global progress has been made in reducing child deaths since 1990.
I am certainly not underplaying the loss of child. I only mean to say that it was more a part of history, than children surviving consistently to adulthood.
Yes I'm aware of that. I was talking about a child at any age not just infants. Personally I think losing ones child after years of life is harder to adjust to. But that's just my opinion from personal experience, I could be way off.
Same
No matter what my goals are or how I plan to reach them, they're all really just a way to reach this point:
https://www.youtube.com/watch?v=y6yCmdIkw_E
It's always inspiring to read your articles
Definitely agree that with plans it’s definitely a good idea not to put all your eggs in one basket and have a plan b (even a c if possible) and change course if plan A gets totally messed up!