My brother was out for the past week with his girlfriend, it was a wonderful trip, as it always is when I get to see my bro (that’s him in the pic with me), but he said something to me that really got me thinking, something that kind of brought together a number of ideas for me, a culmination of things that finally meshed and merged when I attended the San Diego Pain Summit last month. A pieces falling into place sort of thing.

Me and my brother, facing pain and uncertainty

What he said was that even when my pain levels were the same as they were the year before, I seemed to be doing so much better now. And he’s so right – my life is so much better now, even when the pain isn’t all that much better. My mindset is so much better now, my approach to pain so much better now, my outlook is so much better now.

Why is that?

Because I’m not waiting anymore. I’m not waiting to resume my life once the pain is gone anymore. I’m not waiting to start the next big thing or to enjoy this or do that once the pain is gone anymore. I’m not in the pain holding pattern I feel like I’ve been in for the last 5+ years anymore.

I’m living my life now. Even when there’s pain.

Even though I’ve learned a lot and have progressed a lot over the years, as you have witnessed if you’ve followed this blog, I was still kind of waiting for the pain to be gone for good before I started up my life again.

I don’t know that I knew I was waiting.

It wasn’t a conscious or vocalized statement of “once the pain is gone, I’ll do x, y, and z”. Rather, it was just sort of an expectant, hesitant, anxious-y kind of feeling over the matter that we all get at times (well, that I get at times) when we’re waiting for something to happen: an upcoming presentation, a vacation, a big event, a phone call, a doctor’s appointment. So even though I may have never formally vocalized the thought, even to myself, I felt like once the pain was gone, then I could finally figure out the rest of my life.

Once the pain was gone, then I could write my book. Once the pain was gone, then I could start writing this blog in earnest. Once the pain was gone, then I could find my new sport, my new activity, my new running (I still miss running. Oh running, you done me good back in the day). Once the pain was gone, then I could really start to help others because only then would I know what this pain thing was all about. Once the pain was gone, then I could start a new career. Once the pain was gone, then I could start…

Once the pain was gone, then I could start life again

But the thing about life is, it’s happening right now. It’s not waiting on me while I wait on my pain to be gone.

So, even though I had a major breakthrough last year when we were here in Colorado – a time when I finally realized that I wasn’t weak, fragile, and breakable, a time when I finally stopped fearing movement, in particular, moving wrong – and even though I knew the breakthrough was a giant leap forward, I still thought of it more as a giant leap toward getting me closer to that day the pain would be gone for good.

The day that my life would start up again.

I didn’t realize I was in this holding pattern of pain until the San Diego Pain Summit this year. As I mentioned in an earlier post, a couple things really stood out to me at the conference. The first was when Lorimer Moseley– my pain mentor and the neuroscientist who’s work on Explaining Pain changed my life, who’s work helped usher in the aforementioned breakthrough because I finally understood that pain didn’t equal damage – said that we will never really understand pain until we understand consciousness, because pain is a conscious experience.

Starting life again and self-expression

It finally clicked to me that pain isn’t just about science or medicine, it’s about humans, too. It gave me permission, so to speak, to not worry so much about the scientific underpinnings of my own pain, the scientific cause of my pain, the scientific solution to my pain, and allowed me to accept and embrace some of the uniquely human underpinnings of my pain, perhaps less well understood but no less important.

The second piece of the puzzle that made the picture a bit clearer for me was when Eric Kruger talked about how important it is for people with chronic pain to be able to fully express their pain, to be open and honest and real about their pain. Only by expressing our pain can we open ourselves up to being reassured that we’re ok, that everything is alright, and that we are safe.

This full, honest self-expression allows people in pain to move forward, to get out of their own holding patterns, to get on with life, even if the pain is still there, even if there is still some uncertainty.

The truth is, there is likely always going to be an element of uncertainty with our pain; the causes and the fixes may never be clearly understood. And that’s ok. Much of our world, much of our existence, comes with a dose of uncertainty. We don’t have it all figured out. We don’t have to.

We don’t need to figure it all it out to exist, to be, to live. To love and laugh and learn and grow and give.

We can live with uncertainty. We can live with pain. We can search for answers, but we are not failures if we don’t discover them. We are successful with each attempt, with each step closer to understanding.

That’s the science.

But the key is understanding that we don’t have to wait for the answers, that we can live life right now, even if we never fully understand the cause of our pain.

We can live well with our pain. Through education, movement, mindfulness and addressing our responses to stress. Through self-expression and creativity. Through nourishing foods and nourishing relationships. Through play and enjoyment, love and gratitude, and appreciating the simple things and celebrating the small victories.

That’s the art. That’s living.

Loving and being loved

When I interviewed Lorimer Moseley for a paper last year, I asked him what was the one thing he would tell someone in chronic pain that he thought would best help them to manage their pain. His response was “to love and be loved”.

I think that’s incredibly powerful and incredibly important. And, incredibly, rarely talked about. I think it refers not only to loving and being loved by others, but also to loving and being loved by ourselves.

Pain often comes with a lot of guilt, shame, feelings of failure, anger, sadness, fear, and hopelessness. It can be hard to love yourself when you’re in pain, which makes it harder to love and be loved by others.

The permission I didn’t know I needed

I feel like now I have permission to love myself, even though I have pain, even though I don’t have all the answers as to why, even if I may never be rid of it. I can love myself, and love and be loved by others, even though sometimes I’m scared or angry or frustrated or sad. I finally feel like I can express my true self, whether I’m up or down, happy or sad, in pain or not.

I can move forward. I can live without asterisks.

I am finally permitting myself to accept some of the uncertainty that comes packaged with pain and allowing myself to exit the holding pattern I’ve been holding myself in for so long.

I don’t have to wait for the answers to live right now.

We don’t have to wait for the answers to live right now.

The art and science of life

So I felt, in a sense, that the Pain Summit gave me this permission to not have the answers. It gave me permission to not have to be so science-y, and that I could be a bit more human and humane in my approach to pain, both my own and others’.

The totality of the human experience isn’t well understood. It’s something we take for granted. But it’s our human experiences that do much more good (or harm) for pain management than any specific procedure or treatment modality, in my experience.

It’s the interactions between peoples: between doctor and patient, between friends, between partners, between cohorts in a group therapy setting, between strangers on the subway, between coach and client, between speaker and listener, between members of a community, between peoples of the world.

It’s the interactions between ourselves and our world: with nature, with our communities, with our culture, with our society, with our local and global environments, with all the things we enjoy and appreciate in the world, be it art, literature, music, food, poetry, parks, nature, photography, dance, theater, movies, books.

It’s the interactions within ourselves: our self-talk, our creative outlets and ability to express ourselves, our values, our purpose, our thoughts, our hopes, our fears, our dreams, our actions. Our meaning.

It’s ok not to have all the answers

It’s ok to have some pain and some uncertainty. We don’t need pain to be solved, or life to be solved for that matter, to talk, touch, hug, listen, share, love, relate to, laugh, cry, tell stories, share meals, travel, dance, live, learn, grow, give.

We don’t need to be certain in order to be creative, be happy, be grateful, be hopeful, be helpful. To love and be loved.

We also don’t need to apologize for being cranky or mad or frustrated or lost sometimes. We don’t need to apologize for our pain, we don’t have to hide it.

And it’s ok to talk about pain or to express it in some other way: through writing, through art, through movement, through music, through photography, through therapy…through sharing our stories in our own unique ways.

For me, fully expressing myself means I can live right now, rather than continue waiting for the pain to be gone in order for my true self to come out.

This is my true self.

This is who I am right now, pain and all. Tomorrow may be different. But that’s true of all of us all the time, not just when we’re in pain. Hopefully we’re all continuing to learn, grow, develop, and change over time.

So, I feel like I’ve been given permission to stop waiting for the pain to go away to be me again; I am free to just be me, right now and always.

The pressure is off. A bit (a lot a bit) of the stress and anxiety and fear of failure at this pain thing has been lifted. It’s like I can breathe a bit easier, be a bit easier.

See, prior to this, I had felt like I was doing this pain thing wrong, thereby doing life wrong. So it was incredibly freeing to realize that I wasn’t doing it wrong, that I wasn’t a failure because I still had pain, that I am doing my best and my best is pretty damn good.

I’m giving you permission, too. Whatever your outlet is, go ahead and express yourself. It’s ok. Not only is it ok, it feels awesome.

We are allowed to just be us. 

We don’t have to wait for better days, for the next big thing to happen, for that certain something to be checked off the list, in order to live right now. We don’t have to wait for answers, for guarantees, for certainty.

Now is all we have, it’s the only guarantee.

We can stop circling in a holding pattern above our lives and finally land in the midst of it and live it. It won’t always be pretty. It won’t always be easy. It won’t always be ideal.

But it will always be ours.

Living with pain and uncertainty - life is now and now is all we are guaranteed

And sometimes it will be pretty. And pretty awesome.

As always – thanks for reading my post, folks! I truly appreciate your support as I share my thoughts and my journey. If you like what you read, please share with your friends! Or sign up for the newsletter, which comes out somewhat monthly and has additional links, recipes, photos, and interestingness in it :)

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15 Responses to "Permission to exit the holding pattern of pain and uncertainty"

  1. Love it! I am so glad to have come across you blog. I’ve said it before, but when reading your blogs I feel l’m reading my thoughts. :)

    Uncertainty is something that I have been thinking about a lot over the past year or so it seems. Experiencing chronic pain feels like the ultimate of being out of control. It’s true for me that the more I learn to accept and surrender what is not in my control in any area of my life, and live my life as fully as I can, the less I suffer — even if pain (physical or emotional) is present. I can’t remember whose quote this is but it’s quite true, “pain is inevitable; suffering is optional”.

    And, like you, the more I pursue my life fully, the less pain I seem to experience.

    The concept of Mosley’s that you mentioned about pain and consciousness was very interesting. I would love to hear more about that!

    And his response about love — how beautiful.

    Thanks for putting your experience out there!

    ~ Tami

    • Thank you for the kind words, Tami! It means a great deal to me and I’m happy that my words resonate with you. This pain stuff isn’t easy, eh? It’s hard to convey that sense of acceptance without implying giving up, you know what I mean? I’m as hopeful as ever, probably more so, even though I have accepted the pain and that it may never be gone. I feel like accepting it allows me to live right now and whatever comes, comes. But sty least I know I’m maximizing my present moments as much as I can.

      Another part of acceptance for me has been accepting that it sucks sometimes. Hard. And that’s nothing to be ashamed of or to feel guilty about. I feel like the more I talk about it openly and share with people, the more they understand and the less they make assumptions.

      I think people in pain often feel like they have to put up the strong front, the brave face, all the time. That’s exhausting. And stressful. And it doesn’t allow them to express all of themselves, only a part. I think full expression, warts and all, helps.

      But who knows. I’m just bumbling my way through this!

      Thank you again, Tami. I’m so happy our paths have crossed!

      • I totally know what you mean. I could not agree with everything you said more. For me, acceptance is not giving up, it’s being present to what is with the humble acknowledgement of what is not within my control AND as you said so well, “maximizing” those moments. In this I too am more hopeful than ever.

        “But who knows. I’m just bumbling my way through this!” I say this a lot these days in regard to lots of things — and it’s quite freeing actually!

        I too am glad our paths have crossed! The solidarity is so nice — even virtual solidarity. :)

  2. Jo,
    This is an incredibly beautiful and well written piece, and for those of us working with patient in pain, pretty much sums up what we would describe as “success” in helping people to approach their pain. Its really interesting, and very insightful to read back on your journey and see how your understanding of these concepts has translated more and more over time to a lived experience of them, rather than just a recognition of the ideas as having merit. I love your blog and will definitely share it as a resource for patients.
    Alison

    • Alison,

      I cannot thank you enough for your kind words and your encouragement. I am so happy to know that my words resonate with some folks and that they may possibly be used to help others.

      I love your observation of how I have transitioned from understanding these ideas have merit to actually living them. I think one of the hardest things for people in pain is the time it takes (at least for a lot of us!) to get a handle on it, accept it, and live (truly live!) with it; you can ‘know’ but still not ‘live’the ideas and concepts behind successful pain management (and successful living, for that matter!) for quite some time. It’s also hard, at times, to make the distinction between acceptance and giving up, to realizing that accepting pain and living fully in it’s presence doesn’t mean you’ve consigned yourself to a life without hope of it ever being gone.

      I don’t even know when the transition happened for me, and I still have my days full of doubt and frustration and I’m sure there will be more transitions as I learn more, grow more, do more, etc. But now when I am sad or frustrated or having a bad day I don’t freak out as much :)

      Thank you again for your kind words and for taking the time to share them with me. Your patients are lucky!

      Most sincerely,

      Jo

  3. Joletta,

    My heart hurts for you after reading that you are still in so much pain, and I can’t believe that there is something in medical science and research that can’t do something to give you relief. John always tells me how much you walk each day, and I see it on my fitbit each week, but I didn’t realize how much pain you are still having.. Have you thought about seeing other specialists and doctors at some point?

    Sounds like you are at one with nature in Colorado and loving the springtime. It must be beautiful after all the snow. Love the pic of Buster among the beautiful flowers. I guess Buster will miss the long walks with you and John in the snow and now with all the new blossoms of springtime. On the other hand, I miss all of you and can’t wait ’til you’re home.

    I was so happy that Lani was able to be here a whole week. She cooked for me and bought clothes and shoes for me and we shopped ’til we dropped. We were both worn to a frazzle when she left. I’m sending her a copy of your email.

    Take good care and see you in a couple of weeks!!

    Nell

    • Nell, I am doing really well, no need for your heart to hurt! There are millions of people who live daily with chronic pain, I am fortunate that I am able to manage mine so well. Most days I have very little pain, as long as I get my movement in, go on my walks, and meditate and practice mindfulness. When I start to get away from those things, my pain will flare up but I don’t freak out over that anymore, I’m not as devastated with each flare up as I used to be. That’s a good thing!

      I am going to miss Colorado. I feel my best self when I’m out here. We didn’t get nearly as much snow this year but it’s been lovely all the same.

      I am happy you enjoyed your trip with Lani, it sounds like it was a great time.

      We’ll be seeing you soon!

      Jo

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  5. Hi Jo
    I heard of you a year or so ago, through the SDPS and several related FB manual therapy pages and couldn’t help being impressed by what you are doing for yourself, with “your story” and knowledge, and for blazing the way for others to follow.
    Your honesty and thoughtfulness touches me deeply – thank you for sharing your journey.
    When you wrote: “It’s like I can breathe a bit easier, be a bit easier”, I was so happy for you because I know that feeling and I’m excited for you too, as I think there’s no keeping you back now (not that anything did before – obviously ;-)
    I’m really looking forward to reading about what you’re going to be getting up to next.
    Much love and gentle hugs

    • What a lovely message, Victoria, thank you so much. It means a great deal to me that you’ve taken the time to read some of my posts and reach out to me, that’s awesome. I, too, look forward to what’s next. I have been working on a book for 3 years now, I’m hoping that will be *next* in some capacity! I’m a terrible editor and rewriter, though! But it’s fascinating to me to write the story I’m in, the story I’m living, the story I’m figuratively and literally writing.

      We’ll see :) One thing I do know is next is that I will be on a discussion panel at next year’s SDPS. I’m so excited! The tide is definitely turning, and I’m ready to ride this new wave.

      Thank you again so much for connecting. Love and gentle hugs my friend!

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