ON A SCALE OF 1–10
WHEN CHRONIC PAIN HIJACKS YOUR LIFE
A Book Proposal by Ellen Sue Stern
When I was seven years old, I overheard my parents use the phrase, “A fate worse than death,” while talking about a friend who had been diagnosed with cancer. I didn’t understand. What could be worse than death?
With all due respect to the bereaved, and as the author of books for grieving widows and widowers, the phrase now makes sense. The only thing worse than dying of a terminal illness is living in interminable pain.
According to a report from the Institute of Medicine, one ( out of three people in the U.S. are living in pain.
If you, too, are living with chronic pain, consider yourself a Superhero for summoning the will, energy, and resilience to get out of bed in the morning. You deserve a standing ovation, maybe even a brand of ice cream or nifty new gizmo named after you, which isn’t going to happen, and even if it did, it wouldn’t actually change anything. Because in this case, knowing that you’re a Superhero adds insult to injury; after all, a real Superhero could easily access the power to reverse what is, frankly, a miserable toss of the dice.
Chronic pain diminishes, and in many cases, destroys an individual’s quality of life. It robs us of the capacity to create and maintain relationships, destroys our careers, causes financial ruin, and diminishes our ability to care for our children. Our sense of self-worth tanks, rendering us needy and dependent.
It takes ’s enormous effort to simply maintain the day to day demands of bill-paying, house-cleaning, meal-making, doing laundry, maybe even remembering the name of our neighbor’s dog- and that doesn’t even include the basics, like taking a shower and brushing our teeth.After spending the past twenty five books, writing twenty books, making lemonade out of lemons as a way to cope with two difficult pregnancies, MS, divorce, parenting challenges, the loss of a love, a medical misdiagnosis leading to intractable pain, and my own fair share of heartbreak, I’ve come to the conclusion that suffering doesn’t necessarily build character. I used to believe in silver linings. No longer. Which is not to say that something good can’t come out of pain.
You know the saying: “Everything happens for a reason.” This used to make me crazy, as if there was some mysterious gift at the bottom of the Cracker Jacks box. As someone with respect for the power of transformation, while maintaining rigorous intellectual questioning of “new aged” salvos, here’s where I’ve landed: Yes. Things may happen for a reason. But the reason is YOU!
I’ve come to believe that there’s nothing inherently redemptive about being in pain. It may make us more empathetic, but it also can turn us into bitter, grouchy monsters. It may enhance our sensitivity or make us want to shut out the world and crawl under the covers. It may inspire us to acts of service, make charitable contributions, reach out to others in need, find ways to offer hope to fellow sufferers OR it may just as easily make us want to give up.
I think most people do some of both. I have tended to be somewhat of a “Pollyanna” throughout my life and my career. I like to believe that the hard things — some really hard things- were just openings to grow, explore myself more deeply, and to my good fortune, enable me to help others.
Arguably, at this moment in history, chronic pain is the Number One health concern in the country, and growing, due to an aging population. Chronic pain sufferers struggle with being treated like drug addicts, even when they have no history of substance abuse and are responsibility using medically prescribed opiates. Appointments with the pain management physician include signing “pain contracts,” mandatory drug testing, and the humiliation of being interrogated, as if to presume guilty until proven innocent.
To make matters worse, there’s considerable confusion between drug addiction and drug dependency; one describes abuse of recreational drugs, the other is the inevitable outcome of building up a tolerance, making it necessary to increase the dosage in order to get the same effect. In the end, it doesn’t matter. Because whether you’re a junkie or verifiably in need of narcotics, ultimately you still end up counting your stash, licking the inside of your purse and screaming at the pharmacist at the CVS. It’s the nature of the beast, although many individuals say they’ve stayed on the same dose for years, without having to up it. Unfortunately, one morphine led to two led to three…….
Recently I wrote a commentary piece in which I expressed my anger at doctors blowing off my request for info on clinical trials, the difficulties of being prescribed medical cannabis in Minnesota (despite its being legal), and the general lack of compassion I’ve experienced as a chronic pain patient. I also shared my love/hate relationship with opioids; they were the only things that came close to touching the pain I was in, and taking them was a miserable life of tyranny which revolved around being on drugs that made me out of it, combined with side effects that were as bad as the source of the pain they were treating.
It’s one of the many shared challenges exchanged on Twitter, blogs, and interactive websites at all hours of the day and night, Empathy born of shared experience promotes on-going support (remember chronic pain sufferers spend an inordinate amount of time on-line.) Finding them, listening to them, sharing with them is both heart-wrenching and life-saving. There’s a fellowship of sorts, in which chronic pain is the great leveler, where compassion is the norm, and people truly care and take each other’s difficulties to heart.
So what, if anything, CAN help? It’s a question I struggle with every day. The conclusion I’ve reached is that the only thing that makes a difference is to face reality and find creative ways to change how WE lives our lives, given the random hand we’ve been dealt. We all have Bad Days, Not So Great Days. Made It Through Another Day Days. And Day that just suck, for lack of a more descriptive adjective.
One of my hitting bottoms happened last summer, as I was making my first, desperate effort at getting off opioids:
It was nearing dusk. Standing on my tiny balcony, overlooking the pool where my neighbors were enjoying late summer Happy Hour, I stared at the scene, so foreign from my reality that I may as well have been watching a movie or real time footage of something happening halfway across the world.
Writhing in pain on Day 11 of weaning myself off the eight Vicodin a day prescribed for the incessant throbbing pain in my lower back, the result of a two lb. titanium internal cast with four screws inserted post spinal fusion surgery, which you could feel with your fingers because I was so emaciated. Drenched in sweat, shivering despite standing directly in the sun, dehydrated almost to the point of disorientation, desperate for relief, and more than anything else for the numbers on the scale to rise above 80, my pre-op weight after nearly four years of battling seven herniated discs, numerous pinched nerves, pushing through with hot baths, epidurals, physical therapy, opiates, and sheer will: Anything to avoid surgery that I had been advised by four different neurosurgeons would require a full lumbar spinal fusion, bone grafts, at least six months in a body cast, and at best, a twenty percent chance of success.
The surgeon’s worst fear was that I was so thin that I might end up trading one sort of pain for another, given the very real possibility of the lack of padding around the screws inside the cast or “monster” as I had come to not so fondly refer to it, His recommendation: Gain 10–15 lb.
In an effort to gain weight, I went off the Vicodin. After being on medically prescribed narcotics for over thirty-five years, starting in my late twenties to treat migraines, then Trigeminal Neuralgia, often referred to as the “suicide disease” for which there was no treatment save narcotics, brain surgery, and a handful of other risky options, this wasn’t going to be easy. But after three months of brutal withdrawal, I realized my plan wasn’t working; any weight gained was immediately lost in the purge of withdrawal. Each time I weaned down by half a Vicodin, within a few hours the runny nose, chills and sweats started, then agitation, the creepy feeling of wanting to crawl out of my skin, curled up in a corner of my darkened bedroom rocking back and forth, literally pulling out my hair (people really do that and not just on Celebrity Rehab), keening and begging for relief, then the violent runs, pounding headache and other side effects, which usually lasted two to four days.
I knew the drill. I was equipped with water, mint tea, ginger cookies, bananas (for potassium), zinc and electrolyte infused vitamin C, and, as I gradually stabilized, dry toast, baked potatoes, and the few other bland foods that would stay down. Once I’d get through withdrawal, I’d return to my discipline of setting the clock for every four hours for STUFF TIME-as in stuff your face with the highest possible caloric food ranging from fatty steaks, pasta, avocados, mangos, dark chocolate Ensure, anything drenched in butter, and a whole pumpkin pie smothered in whipped cream, which on occasion I shot directly into my mouth.
On the eleventh day of this nightmare, tears streaming down my face, I wearily stumbled into the bathroom, clutching yet another bottle of water, downing another Zofran for the nausea. I stood on the scale, steeled myself to open my eyes and looked at the number. 79. Clearly this was hopeless; what was the point? The refrain in my brain was “How could I end up like this?” I thought it. I screamed it. I wept it.
Like over half of all chronic pain sufferers, I often considered suicide. My bathroom drawers were filled with enough partly used bottles of opiates to flatten an elephant. I could end this nightmare by taking everything in the house and falling into a deep sleep.
What stopped me are the same things that stop everyone:
Piles of dirty clothes on the floor. Unpaid bills, used ice packs, empty water bottles, and stale Saltine crackers under the bed. Manuscripts, books, royalty statements, love letters, not so loving letters from bill collectors, a disorganized mess comprising the paperwork of my life, including 1200 pages of medical records.
I was perilously close to giving up. After thirty-five years, chronic pain had destroyed my life as I knew it-and as hard as I tried, I couldn’t see around the corner.
Tackling this topic has been instrumental in helping me turn the corner, although there are plenty of days I still crawl under the covers, chew on saltines and bemoan the crumbling state of my existence. There may be ways to lower the volume on the pain scale, including the use of creativity as ammo in the battle between hope and despair, or, at the least, a welcome distraction. As is true of all the books I’ve written, the payoff isn’t from the royalties, which are statistically elusive, or another fifteen minutes of fame which I’d happily trade for one pain free day (this Saturday would be great since I have a family wedding, if anyones’ listening up there.)
The deepened sense of purpose and meaning, combined with the sheer joy of writing just because I love words, are a reward in and of themselves. If they speak to your heart, that’s icing on the cake.
I’ve tried to avoid stereotypes, generalizations, and the lure of retaliation at the people on my proverbial shit list-you know who I’m talking about, the ones who don’t get it, don’t try to get it, or worse, just walk away. Maintaining a senses of proportion has been key, including the power of truth telling, even when it portends the possibility of further alienating friends or family members.
Hopefully it will have the opposite effect, enhancing awareness, which would add sprinkles to the icing, but I’ve tried to not let that influence my mission: To share my dime’s worth of wisdom acquired honestly in the service of bolstering the spirits of the half million people living in chronic pain. To entertain, provide clarity and open a window into our collective experience. And to get through the day, in spite of The Pain.
This book is a work in progress; throughout the book, you’ll be invited to post your input on various topics at the website https://www.onascaleof1–10.com. As readers share comments, the book will expand, making this more of a group project. So consider yourself a “contributing editor.” There is also a complimentary downloadable journal where you can complete the exercises offered in the book. The books stands on it own, with or without the journal or posting on the website, but the more and varied vantage point, the better understand all of will have when it comes to living with chronic pain.
You have my gratitude for coming to the party. It’s not a pity party, though there’s certainly a place for commiseration, as long as we can turn up the music, shift our attention, and as the airlines say: “Sit back, relax, and enjoy the ride.” I mean “read.” read more…
TABLE OF CONTENTS
CHAPTER ONE: Getting Out of Bed in the Morning and a Gbizillion Other Reasons You Deserve a Gold Medal
CHAPTER TWO: It’s All In Your Head and Other Stupid Things People Say
Chapter THREE: Get Mad
Chapter FOUR: Stop Explaining. Stop Apologizing
CHAPTER FIVE: Take Off Your Mask
CHAPTER SIX: Stop Asking Why?
CHAPTER SEVEN: Ask for Help. You Need It.
CHAPTER EIGHT: It’s Not Addiction. It’s Chemical Dependency.
CHAPTER NINE: 1 + 1/2 + 2 1/4
CHAPTER TEN: Create a New, Different, Maybe Even Better You
CHAPTER ELEVEN: Advocate for Yourself and Other People Who Live With Chronic Pain. Being Proactive is Empowering