on giving up hope

I’ve blogged before about how people bombard chronic painers with lists of solutions they think we should try (ex. My Aunt Lizzie’s cousin’s uncle’s friend had migraines and stubbed his toe on a live rattlesnake eating a piece of cherry pie and he hasn’t had a migraine since!), and how I find myself explaining, ad nauseum that:

Migraine is a lifelong neurological condition that is inherited. It is realistic to learn to manage it, but there are no known cures. (And then in my head: thank you for your suggestions, but they’re mostly just bunk to keep you from sitting with the discomfort of this moment where I’m telling you I live with chronic pain.)

To which people sometimes respond with: Well don’t give up yet! Don’t give up hope! Keep hope alive! Hope is powerful!  Hope hope hope! Look at my hope flag! I’m waving it in the air! I put hope on a big stick for you to hold onto!

hope

And while hope is helpful and important and necessary in so many situations, this is not one of them.

I still find myself dreaming of the day where I wake up and go to work, full-time, to teach music. Where I wake up and sing in the shower and ride the subway and teach the children and skip lunch ’cause I’m so busy and eat some artificially flavoured red candies and come home with a bit of fatigue and then watch something on the telly. But it AIN’T GONNA HAPPEN. Or if it does, it’ll be a miracle against all medical evidence, and I’ll convert to some sort of religion immediately following.

The thing is, hoping for a cure, or hoping for the migraines to go away even for long periods of time means that I’m pretty busy wishing for an alternate reality, and that’s time I could be using to enjoy the reality I’m in.

So I’m going to give up hope. Yup, I’m consciously GIVING UP HOPE in order to live better.

For me that means grieving my career as a music teacher. It means grieving red candies and (for now) full-time work, and tv binges. It means grieving all kinds of things. But it also means moving on.

It means taking better care of myself. It means getting really, really into yoga. It means exploring visual art and becoming a master crafter. It means reaching out to people to ask for support. It means being ok with receiving financial support from the institutions that exist to support people in situations just like this (lucky me). It means eating well and making quiet time. It means making long term plans around my other, quiet interests, that might not move me the same way as my past endeavours, but will move me nonetheless. It means eating chocolate every damn day!

It means acceptance and freedom, and not being broken, and not needing to be fixed.

So there. Keep your hope all to yourself. I don’t need it.

(Image source unknown)

11 comments

  1. Laurie Brown · · Reply

    I think you have uncovered a healthy zone to operate in. It might be hopeless – but hope has never cured chronic migraine. xoxo

  2. lynnesherman · · Reply

    Spot on about the solutions people suggest – and very funny! And Laurie’s right – hope is not a cure. I gave up hope a long time ago, and just focused on coping mechanisms. However, after 53 years of migraines, I don’t think I’ve reached acceptance yet! I will try to emulate your shining example…rock on, Brain Storm, and enjoy the chocolate!

  3. This kinda reminds me of what people experience after a disappointing birth experience. A birth where Mom and baby lived and are healthy, but mom had an experience she hated, like a surgical birth. Or felt really scared during birth, or for whatever reason is feeling disappointed, traumatized, sad, angry or otherwise needs to grieve a birth she did not get. Ask around, and 9 out of 10, or 10 out of 10 people will tell this sad panda of a mom “at least you have a healthy baby!!!” or “Well it all worked out fine thank goodness!” There is not space to grieve provided here! Its completely dismissive of how this person feels, or what reality is. Its uncomfortable for people to sit in the presence of grief and sadness, and worse yet to have nothing they can do to fix it. So, instead of offering things that actually help, like an accepting safe space where it is acceptable to feel whatever comes up, or like, I duno, an fing hug and the simply words “im so sorry this happened to you” They resort to SAYING STUPID STUFF for their OWN COMFORT!! Brian Storm, Im sorry this is the way it is, and you can come be super hopeless (and sit in darkened rooms with peppermint oil and chocolate) at my place any time!

    1. How’s I get so lucky to have a friend like you? Agreed… Having the emotions, and being supported while you sit with them, not moving to FIX or bury them, eventually leads to a more satisfying release/ resolution. Nothing wrong with the sads, so long as they have their moment and you can move on I suppose. Xox

  4. […] I wrote about giving up hope I asserted that it is counter-productive to focus on miracles where no evidence of miracles […]

  5. Thank you. It has been a rough week for me and it is good to know I’m not alone in giving up hope for a cure. I really liked the boggy about chocolate too. Thanks I’m excited to Reed more.

    1. Glad you got something out of it! Here’s to a better week ahead 🙂

  6. I agree. However, science is advancing and there is a solution now. It is a most unconventional solution because you eat it every day without thinking about it because up until now no one explained WHAT migraine is. But now we know–I know and now many scientists have confirmed that I was right—mine was published early this year–I had migraines for several decades and as a scientist, I had the chance. I created a Facebook group for those who are serious about their migraine, who are willing to try to stop the medications the pharma pushed on us (off label, by the way!), and who are willing to keep at it for life because yes, it is genetic and at this point we have no solutions–but rest assured I am pushing for one! The migraine group is here: https://www.facebook.com/groups/219182458276615/ and all the solutions are available there for you free–this is a closed group by the way so no one other than the members can see you and your posts. The group assumes you get the book but you really don’t need to–I am not making any money at it anyway; I paid for it to be low priced. The solution is free and works 99% of the time. The 1% for whom it does not work are still on medication that prevent it. But one of the migraineurs in my group just got her scuba certification!! That is a huge success for a migraineur (or x-migraineur I should say). 🙂 I am glad to help! Cheers, Angela

    1. Hi Angela,

      I whole heartedly agree with the failure of “big pharma” to address chronic migraine effectively. All the drugs I’ve tried have been temporary helpful at best, and have sometimes caused more pain and dangerous side effects.

      I’m not totally closed to the idea that there is one simple solution out there (there has to be, eventually! Right!?), but I’m sure you understand my skepticism and need to move towards acceptance after so many management tools have failed to make a significant, lasting dent in the problem (even though lots of non-pharmaceutical approaches have helped, to be sure).

      I will check out your Facebook page.

      Thank you for visiting 🙂

      Anna

      1. Thanks Anna for joining my group. I totally agree with your skepticism! I am glad to be put under the microscope for examination by your curiosity. You will find everything you need to get rid of your migraines and to prevent them in my group. 🙂 Angela

  7. […] I wrote “on giving up hope” I was working really hard to accept a new life with chronic pain. I had every hope that my […]

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