Survivor stories - persons living well despite chronic pain.
April 15, 2013 10:58 AM Subscribe
Encouragement and survivor stories from persons in chronic pain? Symptoms of what may be fibromyalgia and an inability to manage the pain well are depriving my life of beauty, art, and color; I am looking for underdog stories.
I'm curious to hear from people, preferably musicians, in video interview, but written is also welcome, who have some combination of: chronic pain, a joint issue, fatigue, a diagnosed or undiagnosed medical something-or-other, that has proven to them a great struggle to overcome. Essentially I'm looking for stories of people desperate to retain some sense of freedom, control, and joy in their lives, and what that struggle has been like .
Myself I'm not sure what I have, maybe fibromyalgia, maybe something else, but yet another semester has come to pass and I've had to slow my life down to a crawl in order to get the most simple of assignments in; the pain has been so distracting. I added a fun class to my course lineup but even that feels as though stripped away from me.
As the semester began, playing guitar in class felt manageable, but practicing at home is no different then trying to read, write, or study; painful. And painful in ways I know not yet how to manage. Sit this way and that, metronome slow, fast or off. Different rooms, chairs, footrests. I even bothered to get a decent, well made for its price of $200, acoustic as opposed to something of the cheaply made entry-level variety as a kind of encouragement to myself that the financial investment was a self investment and so that when it came time that the cheapo guitar was falling apart, hurting my hand to play across the fretboard due to poor construction, I wouldn't feel I wasted my money. All that is to say, I had faith.
I still do, just need some encouragement is all. As far as musicians I'm hoping for a well done Vimeo short of a guitarist doing his thing in between cuts of an interview of the pain he encounters and his remarks on his determination to not let it best him.
I'm curious to hear from people, preferably musicians, in video interview, but written is also welcome, who have some combination of: chronic pain, a joint issue, fatigue, a diagnosed or undiagnosed medical something-or-other, that has proven to them a great struggle to overcome. Essentially I'm looking for stories of people desperate to retain some sense of freedom, control, and joy in their lives, and what that struggle has been like .
Myself I'm not sure what I have, maybe fibromyalgia, maybe something else, but yet another semester has come to pass and I've had to slow my life down to a crawl in order to get the most simple of assignments in; the pain has been so distracting. I added a fun class to my course lineup but even that feels as though stripped away from me.
As the semester began, playing guitar in class felt manageable, but practicing at home is no different then trying to read, write, or study; painful. And painful in ways I know not yet how to manage. Sit this way and that, metronome slow, fast or off. Different rooms, chairs, footrests. I even bothered to get a decent, well made for its price of $200, acoustic as opposed to something of the cheaply made entry-level variety as a kind of encouragement to myself that the financial investment was a self investment and so that when it came time that the cheapo guitar was falling apart, hurting my hand to play across the fretboard due to poor construction, I wouldn't feel I wasted my money. All that is to say, I had faith.
I still do, just need some encouragement is all. As far as musicians I'm hoping for a well done Vimeo short of a guitarist doing his thing in between cuts of an interview of the pain he encounters and his remarks on his determination to not let it best him.
You might check out interviews with Melody Gardot. She was critically injured at age 19 after being hit by a truck while bicycling. She deals with chronic pain issues. Here is a TV interview with her from a couple of years ago.
posted by kimdog at 11:37 AM on April 15, 2013
posted by kimdog at 11:37 AM on April 15, 2013
While it did eventually claim his life Vic Chesnutt lived with chronic pain for years. I would argue that the shitty US healthcare system is what claimed his life, but that's a rant for another post.
I could have written about 80% of your post. I suffer from chronic low grade pain and discomfort. Mine's also an undiagnosed something or another. I've had various meds that help to various degrees, but at the end of the day I dislike the side-effects more than the discomfort, so I live with it.
Low grade pain, continuous pain can really grind a person down. I think you're on the right track. Realizing this and doing something about it will help. I often have to force myself to do something other than just laying around watching TV. Often while I am engaged in an activity it's distracting enough that I don't notice any difficulty.
Fill your life with music.
posted by cjorgensen at 11:54 AM on April 15, 2013
I could have written about 80% of your post. I suffer from chronic low grade pain and discomfort. Mine's also an undiagnosed something or another. I've had various meds that help to various degrees, but at the end of the day I dislike the side-effects more than the discomfort, so I live with it.
Low grade pain, continuous pain can really grind a person down. I think you're on the right track. Realizing this and doing something about it will help. I often have to force myself to do something other than just laying around watching TV. Often while I am engaged in an activity it's distracting enough that I don't notice any difficulty.
Fill your life with music.
posted by cjorgensen at 11:54 AM on April 15, 2013
I came to recommend the Thernstrom book. Really good.
posted by BibiRose at 11:59 AM on April 15, 2013
posted by BibiRose at 11:59 AM on April 15, 2013
You might be inspired by both the biography, and the high quality color reproductions of her paintings which tell her story in their own way, in Frida Kahlo: The Brush of Anguish by Martha Zamora.
posted by third rail at 12:19 PM on April 15, 2013
posted by third rail at 12:19 PM on April 15, 2013
Journalist and playwright Paula Kamen has been dealing with chronic daily headache since 1991, and I wholeheartedly recommend her book All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable and Only Slightly Enlightening Headache.
I don't have chronic pain, but I do have a chronic illness (epilepsy), and Kamen totally gets it. I have an invisible disorder. Unless someone actually sees me having a seizure, it's hard for them to grasp that epilepsy affects my daily life. For example, my daily dose of anticonvulsant medication causes a certain amount of brain fog that I've had to learn to work around.
And I'm a journalist who just was promoted to a position with a regular, daytime schedule after 15-plus years of irregular hours (sometimes 6 p.m.-2 a.m., other times 10 a.m.-6 p.m.) that screwed up my sleep and made me more vulnerable to seizures -- a concept that is hard to explain to people other than neurologists and other people with epilepsy. It's a frustrating and lonely place to be in.
Here's my full paean to Kamen, and a transcript of an interview with her.
Jenni Prokopy, who has fibromyalgia and runs the site ChronicBabe, puts it best in her review of All in My Head:
I don't have chronic pain, but I do have a chronic illness (epilepsy), and Kamen totally gets it. I have an invisible disorder. Unless someone actually sees me having a seizure, it's hard for them to grasp that epilepsy affects my daily life. For example, my daily dose of anticonvulsant medication causes a certain amount of brain fog that I've had to learn to work around.
And I'm a journalist who just was promoted to a position with a regular, daytime schedule after 15-plus years of irregular hours (sometimes 6 p.m.-2 a.m., other times 10 a.m.-6 p.m.) that screwed up my sleep and made me more vulnerable to seizures -- a concept that is hard to explain to people other than neurologists and other people with epilepsy. It's a frustrating and lonely place to be in.
Here's my full paean to Kamen, and a transcript of an interview with her.
Jenni Prokopy, who has fibromyalgia and runs the site ChronicBabe, puts it best in her review of All in My Head:
Kamen recognizes her limitations, does everything she can to maintain optimal health, and even with big pain, manages to produce work that's entertaining and informing. ... And when she has bad days, big pain days, she accepts that. Somehow, she balances everything, achieving her goals. She's not waiting for the "cure" to live her life. And she's not claiming that her experience, and the gift of her writing, has enlightened her in some cosmic way that lifts her up above her pain. She's just being Paula, writing what she knows and is passionate about, helping people in the process and enjoying it immensely.posted by virago at 12:22 PM on April 15, 2013
It's not chronic pain, but there is this book written by the wife of a musician who had a stroke and is now back to performing:
Falling and Laughing: The restoration of Edwyn Collins
posted by kadia_a at 2:01 PM on April 15, 2013
Falling and Laughing: The restoration of Edwyn Collins
posted by kadia_a at 2:01 PM on April 15, 2013
These are all writers, but:
Laura Hillenbrand (who wrote Seabiscuit) has struggled with chronic fatigue syndrome for decades. She wrote a very moving but utterly un-self-pitying article about it in the New Yorker (link to unpaywalled article).
Katherine Boo ("Behind the Beautiful Forevers") has severe rheumatoid arthritis, alluded to here in a NYT article.
Both of them still have very severe symptoms but have managed to structure their lives in such a way that they are able to seize opportunities to work while acknowleging that there are days when they cannot.
posted by The Elusive Architeuthis at 2:06 PM on April 15, 2013 [4 favorites]
Laura Hillenbrand (who wrote Seabiscuit) has struggled with chronic fatigue syndrome for decades. She wrote a very moving but utterly un-self-pitying article about it in the New Yorker (link to unpaywalled article).
Katherine Boo ("Behind the Beautiful Forevers") has severe rheumatoid arthritis, alluded to here in a NYT article.
Both of them still have very severe symptoms but have managed to structure their lives in such a way that they are able to seize opportunities to work while acknowleging that there are days when they cannot.
posted by The Elusive Architeuthis at 2:06 PM on April 15, 2013 [4 favorites]
John F. Kennedy lived with tremendous chronic pain, up to and including his presidency.
posted by postel's law at 2:32 PM on April 15, 2013
posted by postel's law at 2:32 PM on April 15, 2013
Not music but a major "comeback story": http://www.businessinsider.com/ramona-pierson-the-most-inspiring-person-2013-4.
posted by PickeringPete at 3:42 PM on April 15, 2013
posted by PickeringPete at 3:42 PM on April 15, 2013
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posted by a fiendish thingy at 11:11 AM on April 15, 2013