ON A SCALE OF 1–10
WHEN CHRONIC PAIN HIJACKS YOUR LIFE
*Excerpt from upcoming book
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.It takes 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. 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.
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. I wholeheartedly embraced the idea that “everything happens for a reason,” as if there was some mystical upside, like the prize at the bottom of the cracker jacks box to somehow justify misfortune. For years, I repeated the new age Buddhist saying, “Pain is necessary. Suffering is optional,” the assumption being: Pain is an inevitable part of life, but if you just have a good enough attitude……
Here’s what I have to say: Attitude, shmattitude. After more than a decade coping with chronic pain-and enough years on the planet to have developed a more sober view of what people actually go through, the simplistic Improve Your Attitude and You’ll Be a Better Chronic Pain Patient Formula just doesn’t cut it. Sure, we can get it up to put a smile on our face when we’re out in the world. Post on-line photographs of frolicking puppies, double rainbows, and every manner of positive affirmations, (as the author of eight daily meditation books, I plead Guilty for contributing to the Positivity Movement), and yes, trying to find hope in the midst of despair can make a difference. But show me anyone struggling with chronic pain and I promise you that for every moment of transcendence and hope, there are at least as many times of of feeling defeated.
Which is not to say that something good can’t come out of pain. Sure, some things may happen for a reason. But 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 OR it may just as easily make us want to give up.
Arguably, at this moment in history, chronic pain is the Number One health concern in the country, and growing, due to an aging population. Technology is enabling people to live longer, but its a double edged sword. What we’re gaining in longevity we’re losing in quality of life. Despite mind-blowing strides in technology, bodies wear out; no matter how hard we try to keep up ( the best and brightest in the fields of health care, science, biology, genetics, and bio-medical research are working at record speed), but in the race between Nature and Technology, Nature is winning.
With the exception of a a few friends who have enjoyed relatively good health, almost across the board, my friends and colleagues in their late sixties, seventies and eighties are having joint replacements, seeking treatment for a wide array of chronic conditions, and in some cases, facing terminal illness. As we continue to age, at some point, chronic pain and the normal infirmities of time are eventually going to intersect. Its what we used to call getting old, whether we’re coping with arthritis, cataracts, back pain, …………eventually we will ALL have to find a way to adapt to daily aches and pains. So what is the distinction?
With normal aging, there are good days/bad days. We may need to slow down or medicate, need support, or tolerate difficult-and expensive procedures. We may require rehab to recover from surgery, need temporary assistance, or even move into elder communities or even assisted living in order to accommodate the losses that come with being mortal. Difficult as this is, at least there are Options. Answers. Strategies to adapt our bar so that we can continue to live full, meaningful lives.
That’s where chronic pain is different. We may find temporary fixes, ways to adapt so as to manage the pain, find short lived optimism in cutting edged medications or new treatment modalities that help a little, or maybe for awhile (assuming we can afford them), or, in many cases, cause side effects equal or worse than the pain itself or the meds prescribed to help it. But no matter how hard we try to rise above our reality, no matter how exemplary our attitude, chronic pain-defined as constant, intractable pain lasting longer than six months for which there IS NO CURE-permanently diminishes, and in many cases, destroys an individual’s life. To some degree or another, it robs us of the capacity to create and maintain relationships, destroys our careers, causes financial ruin, and affects our ability to care for our children. Our sense of self-worth tanks, rendering us needy and dependent. And if you ask most chronic pain patients, often makes us question whether life is worth living.
One of the worst casualties of living with chronic pain is the isolation. Friends walk away. Family disappears. Work colleagues become a thing of the past. And then there’s the so-called “Opiod Crisis,” a frenzied media circus which brilliantly coopted what is actually a Chronic Pain Crisis by linking the rising statistics of opiod overdose–a very real and disturbing problem–with chronic pain patients when it has been widely proven that they make up a very small percentage of actual overdoses. The result: Pain patients stigmatized, 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, for the majority, like many drugs, there is the likelihood of building up a tolerance.
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 spend hours under the covers with a heating pad or or lie on the bathroom floor with spasms from intestinal side effects, bemoaning the crumbling state of my existence. I continue to search for ways to cope: By consciously lowering the volume on the pain scale, distracting myself reading or playing the piano or the best: Being there for someone else, one of the few ways I manage to forget about my pain for significant periods of time. Socializing-when I can muster up the juice to make plans (which also means initiating, getting dressed, factoring in time to lie down or wait for a pain pill to click in, getting there (wherever there is), a whole other challenge, given that like many chronic pain patients I no longer drive, all the while knowing I may need to cancel and boom-there goes another round of guilt, shame, and fear of losing the few remaining friends who have stuck around. And for me, work is the best ammo against giving up. The more engaged I am, whether I’m writing, teaching or speaking, the less aware I am of the pain. The deepened sense of purpose and meaning I get from any creative pursuit is the best antidote I’ve found, which is why I’m writing this book.
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 because its just too hard to be around someone in pain.. 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 and bolstering the spirits of the half million people living in chronic pain, even if I piss a few people off. 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 understanding all of will have when it comes to living with chronic pain.
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
to be continued………