I received your email asking for stories about Quell users and their #smallvictories. I am not a visual artist or someone able to encompass how much the Quell has meant to our family in a single image or song or video. I’m a writer, and I wanted to share with you our story. It’s not something that I’m able to summarize because in order to put a value around how much the Quell has helped us, you have to understand what life was like for us when there wasn’t any hope of relief from pain.
It may be difficult to identify a pre-pain and post-pain threshold for some people. For Patrick, that dividing line is October 8, 2013, 5:13 pm, rush hour on Homestead Road in Santa Clara, CA. The sun was setting behind him as he rode his bicycle home from work on that wide boulevard and its well defined bike lanes. Just days before, he’d been forced off the road across from the library by a belligerent driver. That night, he’d mounted a GoPro video camera to the handlebars of his beautiful carbon fiber Trek Madone bicycle. Just in case, he laughed with a tinge of rage, just so I can show the cops how dangerous it is to be out here.
You can hear Patrick scream on the video of the accident from the GoPro that the police recovered from the bicycle that had been thrown 15 feet in the air and 25 feet down the road away from where his body landed. First, through the muffling of the waterproof case, you hear the squeal of tires, the crunch of the bumper hitting his left knee, and then rider and bicycle separate in the air and the camera spins and spins. Freeze frames capture still moments of a body, limbs akimbo, flying, and then the stillness of the ground. And his screams.
Some days I wonder if he’s ever stopped screaming.
Pain makes a ghost of you. It pulls you away from yourself, from every identifiable part of your soul that makes you human, slicing through your connections with the external world and consuming your every waking thought. I could watch it come over him, those first few months, like taking a brush slathered with black paint and covering over a portrait with obscuring strokes. Sometimes it was a slow onset, as the narcotic pain medications wore off, and the pain built and built. Sometimes it was precipitated by something as benign as our boys, desperate for contact, needing a Dad hug, but squeezing too hard. Sometimes it was sudden, like the chop of a cleaver severing his facial expressions, his ability to hear me, tunneling his vision and tensing every single muscle on his body. I would rub his toes (not the ones that were broken), calling his name softly, while he sat rigidly in his chair, a heat pad laying across his shoulders and his hands curled inward on his chest, shaking. Are you there, love? Can you come back to me and tell me how to help?
The likelihood of survival from that kind of impact is so infinitesimally tiny that I cannot even calculate the odds. Patrick hit the pavement tucked and rolled so that his shoulders and back took the brunt of the damage, not his head: impossibility #1. His backpack absorbed a significant amount of the impact and prevented road rash from shredding the skin and muscles of his back: #2. At the moment of impact, his C3 vertebrae dislocated off of C4 and did not sever his spinal column: impossibility #3. Four of his cervical vertebra were pulverized with facet fractures: #4. His vertebral artery was dissected, sliced open by one of the bone fragments, but he did not stroke out: #5. His spinal cord and nervous system remained intact: #6. He stayed on the ground and was immobilized by a bystander immediately: #7. The Santa Clara FD was 1/2 block away and the ambulance arrived in minutes and put him on a back board: #8. En route to Kaiser Hospital, the EMTs made the decision, in rush hour traffic, to take him to a level 1 trauma center: #9.
He should not have lived. He was conscious the entire time.
He was conscious through the air, hitting the ground and feeling his bones pulverize, bleeding all over the pavement, jostled onto a backboard and loaded into the ambulance. Conscious enough to show the police officer in the back of the ambulance how to stop and replay the recording on the GoPro. Conscious to tell me “I love you” as the sirens spun up and the EMT held his cell phone to his ear.
He was conscious through the hours of waiting for evaluation in the ER when I finally made it to see him with a screaming baby in the stroller, just as the CT and MRI results came back, and the trauma team bustled in to prep him for emergency surgery. They gave him mental tests during the closed reduction surgery to pop the dislocated C3 back onto C4, to ensure that his brain damage would be minimal, if he even survived the procedure. The drilled into his skull to attach a six point Halo harness and then tilted his bed and put successively heavier and heavier weights onto it, until failure required them to simply brace their feet on the head of his bed, grab the Halo, and pull with all of their strength.
Patrick says he has nightmares of that crunch as his spine popped back together. That all encompassing sensation of wrongness and the wrenching dissonance of bone on bone, of tissue resisting, hearing your spine’s forced realignment from the inside of your own head. Blooming pain like he had never known before that moment.
Discharged home for a week, trying to heal some of the total body trauma from the accident before surgery, the pain became so severe even through the fog of massive doses of opiates and muscle relaxants, that Patrick began having seizures. My mom, who had flown out the night of the accident, took the children to the playground when the ambulance came to get him for his surgery so that they wouldn’t be scared. And I thought, it can’t be more terrifying than watching their Dad sob and whimper, unable to move from his bed, trapped in his own mind by fear and agony. The fire fighters arrived with the EMTs after I called 911. “Is that him?” One of them asked me. “The guy we peeled off the pavement a few weeks ago?” I nodded, as Patrick walked on his own two feet out of the house in front of the awed and stunned EMTs who hadn’t been able to get a backboard up the townhouse stairs.
The double level anterior cervical discectomy and fusion surgery fixed what we called his bobble-head problem. The very first relief that Patrick had experienced in 2 weeks was so palpable that we couldn’t help laughing our way through the discharge from the hospital. At our driveway, I stopped the car so he could get out and walk the two feet over the speed bumps because we were both sure he would likely vomit and pass out from the pain if his neck was jostled that much. Being fixed is not the same as being cured.
We like to say that recovery is never linear. It’s a meandering, circuitous pathway that you cannot control, no matter how much you sprint, or how often you sit down in the middle of your life and say no, I can’t, don’t make me, I’m not strong enough. Recovery has set backs, like getting severe bronchitis two months after the accident, or more than a year of extreme pain and numbness in his hand and arm from Ulnar nerve damage. The landscape around us for recovering from this type of injury was so foreign and unknown to anyone that we felt like we were wandering around blind for months without guidance. Is this normal? We would ask the surgeon. Just wait, he would say. I don’t know, he would mean. The medical equivalent of a shrug.
Normal is the enemy when pain is a constant. Nothing about recovery is normal. If one day Patrick found that he could eat well, and laugh at the boy’s impromptu dance parties in their PJs, and read books at bedtime, then that was normal for that day. If the next, he couldn’t get out of bed because of the gripping pain that fogged his brain, flushed through him like a fever, his stomach clenching, unable to eat, unable to move, then that was normal. Because if we clung to the hope that someday we would be able to return to something normal, something better than this moment, then we would be living in a constant state of disappointment.
At first glance, the landscape of pain management is vast and full of promise. Ask anyone what they do to manage their pain from a lingering injury or a bad back and you will begin to gather the infinite variety of choices that work or don’t work for different people. Every time we would see a new doctor, we would be asked, “Are you in the medical profession?” because of how literate we had become with the current research and scientific theories on pain and pain management. We tried everything we thought had a chance to work on Patrick’s pain, to give him even the smallest chance at relief.
You can’t talk about chronic pain and spinal injuries without addressing the first line of treatment: opiates. I used to say that they existed for this exact situation, for people like Patrick who would not be conscious or capable of surviving the levels of pain that he was experiencing without them. But opiates are a special kind of insidious fuckery, that permanently alter the way that your brain experiences pain and not-pain, and constantly increase the demand for more and more to reach a therapeutic level. There is no “pleasure” when you take Oxycontin after a traumatic injury. There is no high. There simply becomes a level of existence on Oxy that brings you closer to a slight measure of relief, closer to what you vaguely remember as normal. And here’s where normal again turns out to be a toxic concept. When you have to take more and more high dose Oxy just to get to a place where you can breathe without screaming, something’s very, very wrong in your body and brain.
At the beginning in the hospital, Dilauded barely touched Patrick’s pain. We would count down the seconds between the 15 minute pain pump intervals, desperate to stay on top of a schedule to keep him from screaming. After his surgery, we set out a plan based on his surgeon’s recommendations to help Patrick step down off of Oxycontin, and limit his use of Percocet. Patrick was utterly terrified of becoming addicted to them. We looked at them as necessary tools that he would soon be able to leave behind in his recovery. We were wrong. Making the decision to step down off of the opiates was terrifying because there is absolutely nothing that exists between narcotics and OTC pain meds. There was nothing to fill that gap to help him through not only the pain from the trauma, but the pain of mentally rewriting his brain to work without opiates. And it was hell.
Think of the worst portrayal of opiate withdrawal that you’ve seen on TV or in the movies. The shakes, sweats, nightmares, hallucinations, vomiting, nausea, diarrhea, anxiety, heart palpitations, insomnia, muscle cramping, agitation, and most of all, the rage. It’s not fiction. Then add an anxious caregiver and two very young children to the mix. How do I protect the kids from Dad’s suffering, his unpredictable rages and misery? How do I let him know he’s not alone, that I can be his strength and center to find his way out of the suffering and back to us? How do I keep us all safe and sane and together?
Months after the accident, after his opiate withdrawal left him weak and nearly unable to ease his daily pain, when Patrick and I were consumed by anxiety, depression and fatigue that could not be eased, we came up with our Toolbox. I liked to shout “Deploy the Toolbox” like some pirate king on the high seas summoning a kraken from the depths. Our toolbox was a jumble of techniques that we could use to raise our spirits, ease our fears, soothe his pain, connect with each other, find brightness in life, even if just for a moment. Part of coming to terms with pain being Patrick’s constant companion was relearning how to savor joy and happiness in each moment. It took exceptional mindful effort every day to compartmentalize his pain, and to look beyond it to the comfort of a hug, or the silliness of a great knock-knock joke from our eldest, or the exuberance of our adventurous toddler climbing on top of the dinner table and smashing his lentils between his toes with glee.
Some parts of the toolbox were techniques like acupuncture, which held peer-reviewed promise, worked only for a period of hours after a session, and provided no long term effects. Some approaches, like using scents to brain hack our way out of anxiety and depression, turned out to be enormously effective. Enough that our children slept with lavender buckwheat filled stuffed animals every night to ease their fears. Patrick would douse his heat pads with lavender and keep an infuser going at all times when he was in the midst of a pain spike and find that he was better able to focus his mind outward rather than inward to ease some of the intensity of the pain through mindful meditation. Sometimes we texted each other stupid cat gifs in the dark hours of the morning as I slept with the baby in the nursery, and Patrick slept downstairs because the damage to his vocal cords from the surgery and accident caused him to snore and choke awake as the fusion plates rubbed against his swollen esophagus all night.
The Toolbox is constantly evolving. What worked four years ago, does not work today (although cat gifs are always effective at raising our spirits). There have been a few constants in his life that have dramatically affected his ability to function with pain, and sometimes even lowered his pain levels: deep tissue massage, meditation, yoga, daily exercise, years of PT, a specialty mattress and supportive pillow, limiting travel or time in cars or airplanes, lowering stress, no alcohol and eating a nutrient-dense vegan diet.
Medications have also helped, but we have learned the hard way after several scares that long term use of different pain modulator drugs can cause dangerous injury to your liver or kidneys. And prolonged muscle relaxant use can cause injury or rebound pain spikes that make it difficult to consider whether they’re worth the risk. And so the farther we get from the accident, and the more that each day feels like a slightly less threatening idea of normal, the more we find space to simply live with what is, existing in this moment without expectation or desire for change. Patrick in his worst moments will say “Pain is here. Pain is present.” Not, “I am in pain.” Naming it as something outside himself is one small way to put distance between the subsumed identity of pain and self together, always.
To people looking at Patrick now, meeting him for the first time, working with him or passing him on the trail on a morning run, you wouldn’t know a thing about his accident. Nor would you have a clue about his pain unless he specifically made an effort to tell you about it. And he is a man of few words. He works a full time job, runs dozens of miles a week, makes killer pancakes for dinner, is an avid science fiction fan, adores gaming with the boys and playing tag in the backyard when the weather’s warm. He’s here, as a Dad and husband and friend and neighbor. But pain is also here. It simply is, as immutable a fact as Patrick’s strength and my boundless love for him.
I’m the data miner in the house. The person who makes the lists, gets shit done, the social secretary and researcher of all choices, options and life paths, to help us make decisions fully cogent and informed. And I am the one who can bear living with the “what if” question: What if this one works? I can look into peer-reviewed research and decide whether or not to ask Patrick if he’d like to try something. To consider his feelings with every possible cure. Because with every new treatment or doctor or medication, there is a very good chance of failure. Our rate is about 100% up until to now. And to hope is only human. And hopeless grief is what faces you on the other side of failure.
So, where Patrick is finding peace in the present, living with the presence of pain, I still keep my eyes open for the possibilities beyond. I have news alerts on dozens of keywords on my feeds to investigate any new research and products in the field of pain management. Early September, Quell popped up in my news feed. Just a brief promotional release about it’s potential benefits for chronic pain sufferers. I added it to my growing mental list of dozens of other things to investigate.
I casually asked him about the Quell one night over dinner after doing some research and talking to our physician: Do you want to try this? Sure, he shrugged, if you think it might be promising. I countered, it’s non-invasive, no doctors, no prescriptions, no major impact on your overall health or life, FDA approval, 24 hr therapy. You had moderate success with a Tens unit and this works similarly. Let’s try it for a few weeks. But, the research cautions it might take a while to work.
On September 14, 2017, Patrick put on the Quell in the early afternoon and we went about our every day business of playing tag with the kids in the back yard and helping with homework and vacuuming goldfish from under couch cushions. By dinner time, I noticed that Patrick had withdrawn into his own head, just a little. It’s not unusual when he’s having a pain spike, or just being his normal introverted self. He phoned in the bedtime rush through showers and books to read and teeth to brush, going through the motions without fully engaging. In the silence that followed Rockabye’s and Goodnights and doors closed on sleepy kids, he sat in the living room and said, “I’m not in pain.”
After four years.
We flew to Minnesota from the East Coast for a cousin’s wedding the next day. Airplanes and extended travel are always tough on Patrick’s pain levels, as are demanding social situations where his energy has to be channeled into social niceties rather than coping with pain. Post-travel pain spikes are always expected and debilitating. In the hotel room that night, I held his hand and breathed with him through anxiety that hit him harder than any PTSD panic attack after the accident. He struggled to find the words for long moments, while the noise of the kids watching TV washed over us and grounded us.
“What if it stops working?”
What a terrifying thing it is: hope.
We talked through it all that night. Is this really what most people feel like most of the time? What do we do if it stops working? Is it okay to feel scared? How do I embrace this moment of no pain and not fear the next moment and what it brings?
The days and weeks went on and we started to settle into life with the Quell in ways we hadn’t realized would be affected. We’ve both lived with some level of sleep deprivation since the accident, since it’s uncomfortable for Patrick to lay in one position for a long time at night. He wakes, frequently, turns, stretches, aches, and I rouse to some extent, each time. Enough that our quality of sleep has been poor for years. Those first few nights with Patrick wearing the Quell hit me like a ton of bricks. I woke bleary eyed, unable to put my thoughts together, as though I had a taste of what I’d been missing and my body simply couldn’t remember what it was like. Sleep. Uninterrupted quality rest, body and mind. It felt so good.
The sundown effect has eased. Where most days Patrick has to push through pain and fatigue in the evening to get through the boys bedtimes, now, he has more focus and energy at the end of a long day. His exercise has become more frequent and beneficial, and the rebound aches of sore muscles and nerve flares is much lower. Occasionally he forgets to put the Quell on after a shower, or after exercising. And I know, just looking at his face after an hour. “Go put your Quell on.” Oh right, he says, his face bunched with ache and soreness.
It’s not a perfect solution. The pain spikes come and go with no constant trigger or pattern we can track, and the Quell is not an acute pain solution. But most days, the Quell brings those enormous sine waves of peaking and troughing pain and levels them out into tolerable background noise. Patrick’s skin is sensitive, and the electrodes will occasionally pull at skin and hair and irritate his legs. Shifting around a lot at night knocks off the connections. Sometimes the Quell won’t fit underneath dress slacks, or he forgets to charge it and needs to leave it off for longer than expected. But the relief, however much he feels it each day, is still there when he puts it back on.
I wouldn’t call this a #smallvictory. It’s like a tectonic shift in our existence as a family. The boys and I get more and more of Patrick back in our lives. And Patrick can remember that it’s possible to define himself outside of the identity of a car accident survivor, or a person with chronic pain.
Writing this all down, looking back at this history, has given me a chance to see something that I haven’t admitted to myself yet. It’s okay to hope. It’s okay to wish for and dream for a new normal. Because maybe, just maybe, you might find something that makes a difference.