“Pain is intensified from trying to control the uncontrollable. Acceptance and resilience have made me stronger.”
This is a quote from Backbone: A Memoir but these two sentences alone epitomise my own experience with chronic pain.
Karen Duffy’s book is part memoir, part how-to guide for living with chronic pain, part lesson in philosophy and etymology, part ‘do you know this quote or cool fact?’, and part funny anecdote. I wound up loving the etymology and the information about philosophy in Karen’s book. I’m always on the prowl for new areas of interest to learn about and I can now add Stoicism to my list.
Having lived in chronic pain world myself for 7.5 years, I’ve read the books, become an expert at timetabling my medication regime, done the breathing techniques and the mindfulness, and honed my patience while waiting for specialists at the hospital. My social interactions mostly consist of doctor’s appointments, and all of the receptionists and pharmacists know me by name. I was the woman that upon stepping into my first pain management appointment and being told the name of the book their treatment plan was solely based on responded by listing what I’d implemented in my life as a result of my reading said book and gave a critique of what was unhelpful.
While I don’t have the same condition as Karen, haven’t lived with chronic pain for even half of the time that she has and doubt I understand the level of pain she lives with, I do know chronic pain. Because I have read the books, medical journals and news articles, Karen’s prescription for pain management wasn’t revolutionary. She covered a lot of the usual techniques – exercise, self care, medication, trips to the doctor and hospital, managing your symptoms, managing your friendships.
What Karen adds that was refreshing is an authority that I find lacking from even the most respected works on chronic pain. Because she’s lived it you can’t very well dismiss what she’s saying with a “Sure, that’s the theory but would you be asking that of me if you understood the pain I face every day?” or “How can I apply that to my life?” because she’s been there, done that, and has the practical examples of how she’s applied it right there in black and white. I don’t know about you but I find it much easier to hear someone who has lived what they’re describing. Karen also understands too well the isolation and uncertainty that come with chronic illness, something textbooks don’t deal with well, if at all.
Karen’s writing style is engaging and I felt like I was chatting with a friend, albeit one who couldn’t hear my responses. I initially found the lack of fluidity between chapters somewhat off-putting and the plethora of quotes distracting but I got used to both. While there were some things said in humour that I didn’t find funny, there was a lot that I related to and found really funny. The quirkier the story, the more I appreciated it. The descriptions of the fun medically based gifts she’s given her neurologist were priceless and I can only imagine that her doctors love having her as a patient, with her optimism and ‘will find a way around the problem’ attitude.
While I admire Karen’s resilience, optimism and penchant for making the best out of a truly awful situation, I equally respected that she is authentic in giving her readers a peek inside what bad days look like as well. What I got from this book above everything else was acceptance, hope and encouragement. One of the hardest things initially about living with chronic pain is the chronic part. While it may fluctuate in severity (even within the same day), chances are you may have it for the rest of your life, and that is an extremely difficult concept for you, your family and friends to accept.
What Karen gave me while reading is encouragement to do the best I can each day. Her attitude of focusing on what she has instead of what she hasn’t and her gratitude is a gentle nudge in the direction I’m trying to keep steering towards. Above all, the “me, too” moments reminded me that although I don’t see many people because I spend most of my time inside the house, I’m not alone and the comfort of that knowledge is everything when you’re surrounded by people who, as a specialist (not mine) told me last week, run rings around you.
I expect this book will be helpful to different people at different stages of their life with chronic pain. Some will read this book soon after their diagnosis and learn vital tools to help them manage their new normal. Had I read this book early on its overall positivity would’ve made me want to hurl it across the room. However, 7.5 years later I read it with appreciation for Karen’s experience and how well she deals with it.
I found I was able to reflect on how I used to deal with my pain (hint: not well at all) and realise that I’ve come further than I realised. I fought against chronic pain for years, pushing myself so hard to try to maintain the life I had before that eventually it all came crashing down around me and I wound up in the worst shape I’ve ever been in in my life. Once I finally learned to accept it for what it is, the pain didn’t magically fade away, but it became so much easier to coexist with.
I’ve been living with the ‘do your best at any given moment’ motto for a few years now but I was encouraged to continue doing that and to look for ways I can help others and to be a better advocate for my health. I am inspired by all of the ways that Karen finds opportunities to be a giver in life.
I adored the idea of your primary doctor being your ‘team captain’. My whole medical team are unbelievably caring, compassionate and resourceful, and go above and beyond all the time for me. I don’t know what I’d do without any of them. It took 1.5 years to find the right team captain for me but they are absolutely incredible and because that’s just who they are, I don’t even know if they realise how extraordinary they are. I had already been mentally writing letters of thanks to my superhero medical support team but Karen’s example has given me the courage to decide to finally put pen to paper.
My favourite sentence in this book is
“My Kindle is my electronic opiate.”
My second favourite sentence in this book is
“Researchers at the University of Liverpool have noted that reading has similar effects to the brain as Cognitive Behavioral Therapy.”
I could’ve told them that if only they’d asked me but knowing the benefits of reading in relation to chronic pain is being studied makes my book nerd heart sing. I look forward to adding reading to my list of pain management techniques I rattle off to doctors when asked and citing this study if queried.
Thank you so much to NetGalley and Arcade Publishing, an imprint of Skyhorse Publishing, for the opportunity to read this book.
Once Upon a Blurb
Over one-third of the United States population – nearly one hundred million Americans – is currently living with chronic pain, while another 133 million Americans live with some form of chronic illness. Half of the United States population suffers from these invisible illnesses where their symptoms are not always obvious to the casual observer. Among them is Karen Duffy, New York Times bestselling author, former MTV DJ, Revlon model, and actress: she suffers from sarcoidosis, a disorder that causes the growth of inflammatory cells on different organs of the body. In her case, her sarcoidosis is located in her brain, causing her unimaginable pain. For two decades, Duffy has managed to live a full life, despite living in a state of constant pain. In Backbone, a powerful, inspirational, funny, and important manual for surviving pain, Duffy draws on her experience as a patient advocate, trained recreational therapist, and hospice chaplain to illuminate gratifying methods people can use to cope with chronic pain. Backbone is for the massive population of sufferers who are eager to be understood and helped and sends the message that despite the pain, there is a way to seek a good life.