Chronic Pain Tales and Poesy, 1: Choosing My Words

Last May, while worn-out and extremely pissed off after two visits to the emergency room, I wrote a very short poem, titled “Mixt Attitudes towards Disabled Veterans”:
Scream,
I’ll know you need me;
Scream,
I’ll know youre weak.

Drives me mad.

It was primal venting—a howl of frustration with a few words in it.

Then that same night, I was surprised by an inbox full of emails. Some of the messages came from Wicked Darlings who have been reading this blog for years, but more were from people who just stumbled into my words for the very first time. They said things like, “I know what you mean” and “Being in pain can be very lonely.”

I was intrigued by the fact that so many people would not share their thoughts publicly. I asked them about it: “Why not leave your insight as a comment under the post? It might alleviate some of the loneliness. I know your words made me feel better.”

Their responses spoke of “shame, fear, stigma, weariness, past rejections…” The reader who touched me the deepest said, “After family and friends started tuning me out, I felt it was better to swallow it up. It’s easier to lie when they ask me if I’m hurting too bad and then roll their eyes as soon as I tell them that I’m in pain.”

I’ve been thinking about those words for weeks; feeling hurt (and angry!) on behalf of those whose pain has been dismissed; thanking my Piano Man and other family and friends who always have time to listen when I tell them, “I’m hurting so much today, would you please distract me from the pain? Or I’m hurting so much today, would you give me some privacy to ache on my own? Or I’m hurting so much today… No, you can’t do anything to ease the pain. But knowing you care gives me strength (I didn’t think I needed) to push forward, to get to a place where you, me and the pain can be together without wanting to rip each other to pieces.”

A tad melodramatic, I know. But when a hip hurts so much that you can’t open your mouth to say I’m not dying; when a shoulder throbs so intensely that you scream when you shift in your sleep; when the two pains conspire to fill your lungs with anxiety and overwork them until desperation paints your night and day in different shades of nosebleeds… When things are like that, a touch of histrionics fits just fine. 

Wondering where I’m going with this? Of course you are. Most of us know each other well enough to understand that my words always have purpose (or at least that’s my intent). Well, I’m planning to use the energies put out by my personal brand of chronic pain and reshape those flows into flash fiction and poetry, which I hope can show anyone reading it that although Pain is an imp that never leaves my back, I will refuse to let its existence overshadow my living.

Pain can steal our words or free our speech;
it can destroy us, or we can use it to build new things.
I’m choosing to speak, to build, to live…
Would you walk the path with me?
How do you deal with lifes more difficult bits, my Luvs?
 

36 comments:

  1. Magaly, you continue to inspire me day after day with your strength. You have truly become a hero to many including me, you not only overcome your own chronic pain but you go out of your way to help and be there for others.

    Magaly I send you healing energies to help with your pain, and send a prayer up to the universe that one day you and others will be pain free.

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    1. Thank you so much for the healing energies. May you, too, find relief.

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  2. Magaly you are an example to many, you're strong and sassy and have no trouble saying what you mean. I respect you greatly for that and I think it's wonderful you've got people around you who care so much. Sadly thought I know you are not the norm, at least not among the people I know who suffer from chronic pain, myself included. Chronic pain is called an invisible illness for a reason, people can't see it, and people have always been bad at taking notice of anything that isn't in their direct line of vision.

    When people ask how you are 99.9% of the time they want a lie in return. People seem happier being lied too. They want to hear you are fine so that they can move on. Among the people I know I think I'm more outspoken than most, my aspiness often leads me to blurt out truth to a question asked, any question because that to me seems logical but many others I know learned long ago that the required answer to such questions is 'Oh I'm fine, thanks' to do other wise is seen to be boarding on self pity, being mardy and a general sign of weakness. Plus when the pain is chronic and seemingly never ending the subject rapidly becomes boring to many, if not a standing joke among some. After many years even I've managed to work this out now, and realised people really don't want the truth in answer, that's was makes us silent and gradually we learn not to make a fuss because nobody is interested.

    When you do answer truthfully people don't seem to listen anyway, in exchange for saying how you feel you get 'oh I've got that too' in reply and by the end of the conversation it's turned around to them and you end up sympathizing more with them and feeling even worse that you bothered anyone with your troubles when obviously they have their own and after all yours don't really matter. I find it easier to talk about things on line than in person but even on line the stigma is still there. I've written things on my blog and then either deleted them or worried that I'd gone too far and think it will put people off visiting the blog. I don't want to come across as seeking pity, sometimes I just want to put words down how I feel but reading back I just see weakness and know I really should shut up, even writing this I fear some will just read it and think 'what a mardy cow', but there is some safety from behind a screen.

    People with chronic pain will understand where you are coming from Magaly, I fear many others won't. We don't want pity, we often just want to be listen to and the opportunity to vent. In our society thought Strong and Silent is applauded In Pain and Vocal is looked down upon as weak. So our voice gets lost, what is the point of speaking truth when you know nobody really wants to listen, lies, all lies, that is what society is happier with.

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    1. You are so correct, Witchy J! That is exactly how it plays out!

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    2. Sometimes, I wonder if I'm a bit too hopeful... and then I tell myself, "No, I just want something better." I don't think that every person who has never lived with chronic pain will understand exactly what we go through, but I have hope that if we make the information available--if we give it different shapes--perhaps a few will get an idea. And those few are worth the effort. We are worth the sight of the one or two face with eyes that open and then open again.

      If it doesn't work... Oh, well, at least we know we did all we could. Also, keeping busy feels good. ;-)

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    3. And yes, it is terribly sad that society prefers the lie. Such limited hearts and brains.

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    4. You keep shouting Magaly, if anyone can get people to listen it will be you. :)

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    5. Hooooowwwwlll! :-D ♥

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  3. I suffer from chronic pain myself, and I would like ot say, I admire you. I do understand where you are coming from. Each night as I go to bed I wonder what part will hurt when I wake up the next day. Like you, I don't let it keep me down. I'm 68 years old now and worked for over 50. Now I retire and I refuse to give up and not do the things I missed out on all these years so I keep going. You are my hero.
    Mary

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    1. It's funny, in a mildly horrible sort of way. Every night before bed my Piano Man asks me, "How is the pain?" We assess it and see which needs more rubbing if the hip or the shoulder. Then in the morning, the same question comes, "How is the pain?" And the day goes depending on the answer.

      You and my friend Lorelei are the true heroes. I've been with this for about 10 years--things began to get really bad about 3 years ago. But you tow have been living with it with more decades than I've been alive. That is commendable. Take THAT pain! ♥

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  4. “Being in pain can be very lonely.”

    “After family and friends started tuning me out, I felt it was better to swallow it up. It’s easier to lie when they ask me if I’m hurting too bad and then roll their eyes as soon as I tell them that I’m in pain.”

    I think the above about covers it. People don't understand chronic pain. And they don't want to understand.

    I'm sitting here this morning with not a part of me that doesn't hurt and waiting for the pain medication and anti-inflammatory to kick in and partially dull the pain. I keep trying to focus on the positive, but more and more is being taken away from me and the positive is harder to reach.

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    1. Positive sometimes is so far away... I get annoyed when people say something like, "But just try to sit. It might not be that bad." I just look at them (considering eye-gouging). What do they think that I stand all the time because I love being on my feet? Those days are difficult to stay positive, but I trust (I hope!) that if more of us talk about it (vent) maybe at least we can sooth each other. And who knows, maybe a few people who have never understand stumble into the light and see...

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  5. Oh Magaly, your poetry says it too well. I'm not sure why pain is the shameful secret in our society but hopefully your words will be a comfort and inspiration (seems they already are) to others who have chronic pain. I'm going to pry not to say someone is 'suffering' pain - I will say someone 'has' pain. Moves the person from victim to fighter. You are a fighter.

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    1. "pain is the shameful secret" That sounds like a poem or a story. I wonder if I can make it funny. I know there is no humor in being part of a world that is afraid to feel, but you know what they say, "If you can't peel their eyes open, you can at least get a laugh out of it." Okay, they might not say that. But they should.

      Fighting on!

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  6. I've read your happy, chirpy posts with no clue that you deal with chronic pain. Then I read your self-medicating post. I agree with Francie, you are a fighter. Keep dancing! Keep loving! Don't let the blind comments of those who don't understand pain get you down. You are not melodramatic ~ been there, done that with the shift in bed at night that wakes you up moaning or gnashing. Thank you for having the courage to discuss it!

    My first husband was a quadriplegic (disabled vet ~ sorry!), and he had bouts of pain when his body was on fire. He'd be as white as a ghost, and buckets of sweat would drench him. Nothing, nothing would help except marijuana. This was 40 years ago when little was understood about chronic pain. You can be sure that I voted for the legalization of medical and recreational MJ in Colorado.

    I was diagnosed with fibromyalgia over twenty years ago, and I was scared that I would no longer be able to work. Kudos to those who loved me at a time when fibromyalgia was dismissed as something imagined by an hysterical female! Gentle massage by a gifted healing touch therapist has carried me through, probably saved my life. So has walking and swimming. I have an emergency supply of prescription painkillers (tramadol) that I resort to if pain overwhelms me. Fortunately I have a personality that enables me to use the drug sparingly and not become dependent on it.

    And sometimes I have dental pain that damn near makes me insane, despite the fortune I have spent on my jaws and teeth. I get the dancing part! Sometimes turning up music very, very loud and dancing or rocking back and forth to the music is the only thing that will help me tolerate the pain. I don't think there is any better feeling in the world, than that moment when chronic pain stops, and I sag and tear up with RELIEF.

    I'm sharing these things only to let you know that you are not alone in suffering chronic pain and that those who deal with it absolutely get what you're going through. You can fight it and milk every bit of happiness out of life or retreat into recluse. Keep fighting ~ you have an awesome spirit! That said, I'll not criticize those who choose to retreat, because I haven't walked in their unique shoes.

    As you deal with it, you will find things that help you to endure and even ease the pain ~ and distraction can be powerful! I count an understanding and patient husband as a miracle; an amazing gift from the universe! Kudos to your loving Piano Man! Take care!

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    1. My dearest lady, this comment is one of the reasons why I've started this conversation (this kind of posts). Reading your words about your husband, about you living with this pain for decades, other people who are doing the same... It reminds those of us who have been at it for just a few years that life doesn't have to end. It will suck royally every now and again, but we can push forward and be all right.

      And yes, my Piano Man is a gift. I always tell him, and will continue to do so...

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  7. Speak your truth, Warrior Woman. Those with ears to hear will understand what you are saying.

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    1. Speaking for people with ears. I sooo love the sound of that. ;-D

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  8. You are so focused and insightful with your words. I know that is why people respond to what you have to say, whether in the positive or the negative. This issue of pain and how to "deal" with it is such a shameful one in our society. The stoic silent sufferer is a model that is so out of order but it is easier for the observer as you know.
    Pain is relative also. What nags me might make no difference to someone else and vice versa. But all in all it has been my experience that most folks want the falsehood of reassurance that "you're doing better, right?" My own Sweet Man said to me one time, "can't you just try to feel better for one day? Maybe it will become a habit". So I went back into the silent shell of shame alone. ANd look where it got me. I will never get back the time, the energy, the effort I put into making them feel better and sucking up the hurt and loneliness of being in pain and not being allowed to voice it.
    BUt you my wickediest of all wonder witches, have the gift of writing, the spark of vital truth and our unending loyalty to your voicing for so many. Rock on with your bad self my darling.....we need your voice, courage and passion. xoxo Oma Linda

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    1. "What nags me might make no difference to someone else and vice versa." If only we could find a way to aim people's empathy in the right direction. We are so "evolved," but lack enough brain (or heart) to realize that pain is pain. I think that some might get the message if we shove it, um... share it enough.

      Some time back a very bright young lady (Ms Misantropia) told me that for her being unhappy every now and then wasn't a choice. I might have said some nonsense about how happiness is a something that we can do for ourselves. It took me a while, but now I know that isn't true. What I do know is that we can find better tools to understand our unhappy moments, to deal with them...

      I think the same can be said about chronic pain--the way we handle it and the way we deal with those who can't understand it. I don't have many answers yet. Heck! I don't have any answers, but I know that Neruda was right, "everything exist in the word." I believe that we speaking to each other will bring something good. Maybe not for those who can't (or don't want to) see, but it will be good for us.

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  9. I only need to say: Yes! Love you Magaly <3

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    1. And you are loved right back, my Snowy. ;-)

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  10. I have been thinking a lot about this lately. I have a lot of friends on Facebook and in my offline world that have forms of chronic pain. Lupus, fibro, ms, arthritis among them, some with more than one. I know the pain they suffer. I have had them on my table, under my hands. What I feel coming from them is not a lie, or in their imagination, nothing that they would do just for attention. They (and you) are brave beyond comprehension. I am so sorry that the public and yes, even the mainstream medical profession, have not taken you seriously or if they did, could find no way to help you. I know you will stay strong because that is who you are and you know no other way. My heart is with you and the many others that share chronic pain.

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    1. I have actually being lucky with most of my doctors. I think the fact that most of my pain is associated with some kind of trauma has helped quite a bit. It's kind of hard to dismiss pain allegations from someone who had a fender pierce more flesh than it is decent to talk about. The same goes for my shoulder and for my recent jaw issues. All my pain is related. The problem is getting access to the right care, which by the way is not problem at the moment--thank goodness! People's reactions are the real issues. As you might have felt from those who you've offered healing to, it is more difficult to deal with the contemptuous looks and comments than with the pain itself.

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    2. I think it's the contemptuous looks and throw away comments that can end up hurting more. I've been battling this pain for nearly 20 years now as it gradually got worse overtime but my body I can do battle with. Sometimes it wins, sometimes I do, sometimes we call it a draw. Those comments and rolling of eyes don't do any more damage to my body, but they do pierce the soul and heart. It's much easier in to deal with my physical health, that's a private battle within me, but the pain others cause in my soul and heart by not letting me have a voice is much harder to fix or remove.

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    3. Indeed. That kind of outside dismissal, criticism and straight up disrespect crushes the spirit in such a way that after a while emotional hurt turn physical. No wonder some people end up in seclusion or choosing not to share their hurt with anyone. The monster can't put its finger in bleeding wound if it doesn't know that it's there.

      If only we could find a way to show the monster that pain really hurts...

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  11. You are an amazing strong and talented woman, and such an inspiration! How do I deal with pain? I have a bad sacrum which can be crippling when it flares up. I also have arthritis in my upper back, and two bad knees, I get migraines, and I have occasional spells of depression. I deal with my multitude of pains in a variety of ways: cry, soak in a hot bath, take pain meds if its real bad, hide in bed in my very dark room with either a heating pad or an ice pack, I seek nature, I go see a good movie, have drinks with friends, or I turn to my art (paint, draw, or write) :-)

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    1. Right now, I'm cooling off the room before getting close and personal with my heating pad. Thank goodness for small hot miracles! ;-)

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  12. Chronic health problems can definitely be lonely and frustrating. I think Linda put it brilliantly:

    "But all in all it has been my experience that most folks want the falsehood of reassurance that "you're doing better, right?""

    Dealing with pain or sickness is hard enough, but what's worse is feeling like your health issues are inconvenient or uncomfortable for others.

    You are an inspiration, Magaly! And "poesy" is a great word!! ;)

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    1. I just laughed really loud. You've said it so well. And the idea of someone feeling uncomfortable knowing that I'm hurting has always hit me as hilarious. I might have to write a bit of satire about that... ;-D

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  13. "Invisible illness" as they call it is the worst. People don't understand how things like depression, aches and pains that aren't easily visible, or an illness that can't be seen can debilitate people! You are an inspiration because you live your life with a fiery, beautiful passion and remind the rest of us to keep living, loving, writing!

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    1. Depression, anxiety, eating disorders... such nightmares. That get scarier after having to listen to people who insist they aren't real. Hm... I wonder if poking their eyes might help them see. Can you feel a story bubbling? *hehehe* Yep, "living, loving, writing" and smirking every now and then. ;-D

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  14. I hope some of your pain lets up soon, Magaly. I can't imagine living with that kind of chronic physical pain, but I do understand having bad days and worse days. I hope the hot weather brings you some relief - but for goodness sake, stay hydrated :)

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    1. The hot weather does make things a better. The fact that I don't have to wear so much clothing can be quite the blessing. Same goes for heavy shoes. And I do know you understand about "bad days and worse days." I've used your journey (what I know of it) as an example when I talk about strong young women. And purple. ;-D

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  15. You are a caring, brilliant soul!
    My mom has been going through a lot of pain for the past 4 years. Somedays, good, somedays bad! She gets so frustrated! She hates to keep asking for help. I think what hurts more, is when, my brother will say, all you need to do is exersize more! Ugggg! Then my sister-in-law will say, well, I am fed up with suggesting things, when people don't listen! I feel like telling them to both shut up! It's hard to be so perfect!!!
    Big Hugs ;o)
    P.S. For the past week, I have screwed up my left leg! I don't know what I did with it! I keep calling it a bitch! It keeps waking me up at night, I hate that!!!
    Please take care of yourself!!!

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    1. So many people come up with so many different suggestions. It makes you almost wish for them to feel the pain for a few hours. Just long enough to feel and understand. But that kind of wishes don't come true, lol!

      You tell that leg to behave!

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