I don’t write these posts specifically for people with ankylosing spondylitis or migraines (though these folks certainly know the struggle). I write them for people experiencing any sort of pain. Pain is relative, it’s a matter of perspective. Be it psychological or physical (or both), pain is the ultimate disrupter. I know of no force (anyone who’s experienced pain, knows the power with which it can strike) that is so capable of hijacking our days than pain. For those of us striving to uncover more hopeful optimism, joy, laughter, and sense of wonder in our day to day lives, pain is the ruthless thief, capable of stealing our sense of self, our energy, our creativity and flow. When an idea for a new book, a new chapter, a new blog post enters my mind, pain is often that merciless distracter screaming, “No, don’t do it. Don’t sit down. Who are you kidding, you’ll never pull it off.” Pain likes to think it’s in charge, and seems to thrive most when it keeps us from our mission, from pursuing our dreams, from living intentionally and purposefully. But like any dirty scoundrel, no matter how villainous its intent, we spondy warriors (you can substitute ‘spondy’ for whatever it is you’re battling) have the power to fight back, to hold our ground, to live in accordance with our core values, to live and fight as warriors. We may not have chosen our pain or our struggle, but we have the choice, each and every day, to fight back, to embrace resiliency, grit and tenacity as characteristics we strive to embody in hopes of making a contribution to the cause. We have the power to embrace that which we can control (or at least have some strong influence): our attitude, our effort, our actions, our perspective.
Writing is like any other endeavor I suppose; it’s about casting a ripple in hopes of making a positive impact, inspiring someone, or perhaps simply providing a little lift. I’ve never felt all that comfortable writing or talking about my struggles with spondylitis, migraines, poorly shaped hips or achilles pain. In fact, I’ve been far more comfortable talking to an auditorium or room full of people about depression than I have pain. I’ve made it a mission, every time I speak to a group of young people, to talk about depression and mental health, to share my story in hopes of inspiring young people to seek counseling when they’re in despair. But speaking about pain, has felt taboo, a place I simply shouldn’t go. Just verbalizing my list of maladies and injuries in a recent TED talk, was a dance with the demons of vulnerability.
It’s funny, as an author, I don’t read any Amazon reviews, I just don’t see the point, I put everything I have into a book, and then my philosophy is just to put it out there, into the universe and let things unfold. I did however once read two 1-star reviews of my first book, a memoir/book of essays where I at times referenced the aches and pains that accompany ankylosing spondylitis. The only thing I remember about those reviews were the reviewers making light of my pain. I’m sure if you’re reading this, you too have had others minimize your pain, you’ve likely had others see your pain as nothing more than an ‘excuse’ for your need to cancel your plans. I reckon it says something about the character (or lack thereof) of someone who can make light of another persons suffering. But why is it that I can speak about depression, that I can comfortably work towards destigmatizing mental health, but I struggle to write about pain? I suppose some of it is the athlete in me, the part that takes pride in my physical fitness, my drive, my push, that part of me that gets into the weight room, on the bike, or in the pool, every day, despite the physical struggles. And then there’s the part of me that’s been embarrassed over the years, ashamed of my maladies, afraid that if people really knew all I dealt with on a daily basis, that they’d consider me weak, broken, useless. There’s no doubt a part of me, that part that grew up as an athlete, where we’re supposed to be tough, and push through anything and everything, remembers coaches calling me out, “Migraines? guys don’t get migraines!” Or, “Ankylosing spondy what?!?” like what I was describing was completely incomprehensible or worse yet, contagious.
Strength is an attribute our society has long held in high esteem, especially for men. And what’s the opposite of strong? weak, frail, feeble, certainly not adjectives any of us want to be associated with. So what did I do? I played through everything. Stress fracture in my hip? No problem, I’ll play through it. Migraine? I’ll throw-up and lie in the dark with a towel over my head between quarters. Bruised lung making it painful to breath? No problem fellas, I’ve got you, I’ll lead the charge tonight. It didn’t matter the extent of the pain, as a teenager, if I could walk, I played. Hell, I remember showing up to a game on crutches, with a badly sprained ankle, and playing 30 minutes that night. Is this courage? It was certainly celebrated as such, but in hindsight, it was madness. But to a young man labeled as ‘injury prone’ and ‘not durable,’ how does one combat the labels? There’s only one way: defy them. Re-write the code.
There’s a belief in some segments of the psychology community that we are largely who we are by the time we’re twelve-years-old, as far as our personality and mindset goes (I kind of hope this is true, because my 12-year-old daughter is the most kind, generous, compassionate and thoughtful little human I’ve ever known). There may be some truth to this, but I clearly don’t buy into this as gospel, or else I wouldn’t have spent so much of my thirties in counseling, diving deep into CBT (Cognitive Behavioral Therapy) and IFS (Internal Family Systems). I do know that it takes a lot of heavy lifting (metaphorically) and work to re-program those pathways and beliefs, especially when our society reinforces these ideologies as what it looks like to be strong as ‘truth.’. There’s a lot of talk out there about compassion (a buzzword of sorts) in our society today, but I’m afraid I don’t see as much of it out there as I’d hope, and I see even less in the way of empathy. Living in pain, gives us a different perspective. Living in pain makes us more aware, more acute, more capable of compassion and empathy, and I like to think, it makes us more capable of inspiring it in others. In fairness to our friends and family who just don’t seem to ‘get it’, it’s an awfully big ask to expect someone to know what it’s like to walk in our shoes, to feel our pain, to truly understand what it’s like. So, I think it behooves us to be patient and tolerant of those who simply don’t ‘get it’ or don’t try ‘get it.’ Perhaps they too, are simply doing their best (or perhaps not), but when we’re living in pain, energy is a resource we must not waste, so I think embracing patience and tolerance represents a best practice of sorts.
So what does it look like to be ‘strong’? Is strong the injury free, durable athlete that deadlifts twice his or her weight? How about the Ironwoman digging deep on the final push down Ali’i drive? Well sure, those certainly represent a form of strength. But what about the spondy warrior, or person fighting depression, or Meniere’s or Chrohn’s, or Psoriatic arthritis, or the loss of a loved one, or any other number of maladies that makes it hard to get out of bed in the morning? What about the person who hasn’t had a good night sleep in months because of the chronic nature of their pain? What about the child courageously struggling each day at school with a learning disability nobody else can see? Are they any less strong or any less worthy of our love, admiration and respect, than those that won the genetic lottery? We as a society know to respect the physical feat of someone with a visible disability, the person that courageously finishes what brings most able body athletes to their knees, but what about all of those out there enduring the burden of an invisible battle? Where’s their encouragement and support coming from? You see, it’s important to remember that most people dealing with physical or psychological challenges, didn’t get drunk and wrap their truck around a telephone pole. Most people living in chronic pain, especially those with any kind of auto-immune disorder, or disease, didn’t do it to themselves and their pain most often isn’t even visible to the outside world. They simply didn’t win the genetic lottery. So, back to my question, what does strong look like? Like pain, I suppose it’s relative and a matter of perspective.
Like one of my favorite human’s I’ve never met, the great Bill Walton (a national treasure and icon of the American West) and someone who knows a lot about pain having undergone 38 surgeries, I’m a gym rat, I love to ride my bike, I look forward to my swims, and I relish my time in the weight-room. When it comes to riding a bike, swimming and lifting, I’m regimented, I’m disciplined, I’m dedicated, I’m devout. But I’m also learning more about my body, embracing the art of training more intuitively (something I’ve been forced into since my 20th birthday, but only in recent years have I begun to truly embrace), listening to my pain, versus always attempting to suppress and overcome it.
They say that courage is not the absence of fear, but the ability to act in the face of fear. I’d say the same applies to strength. Strength is not the absence of pain (or disability), it’s the courage and fortitude to put one foot in front of the other (again metaphorically speaking) despite the pain.
I don’t like to call my migraines migraines, so I call them ‘heads.’ I don’t like to call my migraine medication ‘Zomig’, so I call them ‘megs.’ I don’t like to call my ankylosing spondylitis, ankylosing spondylitis, so I call it ‘spondy.’ It’s my way of lessening their strength, minimizing their control.
I’ve got some big goals on the bike and in open water this summer. Goals are a catch 22 however when living with ankylosing spondylitis, battling migraines, functioning with poorly shaped hips (and labrum tears), because you really don’t know how you’re going to feel from one day to the next, one week to the next, one season to the next, let alone six months out. So all of the training, all of the grinding, all of the laps and turns, and planks, and push/pulls, and sweet-spot spins, that I put myself through in hopes of experiencing magic on the trails, a sense of wonder in the mountains, and a rhythmic swimmer’s high in the water, could be just out of reach when the time actually comes to pull off these big bike and swim goals. And just like this morning, when the pain in my hips made getting out of bed feel herculean, or New Year’s Day, when the hip pain made making gluten free chocolate chip pancakes and savory waffles for my daughter and wife, feel like a far greater task than a 90 minute threshold spin (standing is far and away the most painful thing I do, hence my “a stool” request when event planners ask me what props I need for a presentation or assembly), I’m striving to be patient and tolerant with myself and my pain, knowing that tomorrow may bring something slightly more tolerable.
Perhaps today is another active recovery day (something my most compassionate and wise physiotherapist has prescribed into my workout routine), and though my schedule is calling for two-a-days (a morning spin and afternoon lift), that simply may not be in the cards. Does this make me less man? Less athlete? Less strong? Less of a spondy warrior? Less inspiring of a dad? I suppose I’m the only one that can answer that, and you’re the only one that can answer this kind of question for yourself. But my wise mind and true self know the answer.
Here’s to a 2020 filled with cozy mornings, good books, tasty breakfasts, moving music, loads of laughter, hopeful optimism, meaningful adventures, purposeful endeavors and connection to the people and places that most inspire and uplift us. Here’s to ODAAT: one day at a time.
Pain matters my friends. Pain is the hijacker of all hijackers. We may not be able to control our pain, but we do have the power to work on where we put our focus and attention (like being kind and generous) and even if we can only turn our attention to something joyful such as love and laughter for a few minutes each day, we are winning the moment, perhaps we are even winning the day. I’m not sure if I’ll make it to the gym twice today as planned, or if I’ll pull off a fraction of the rides and swims that are on my 2020 goal list, but I know one thing for certain, I’m going to rise and hook up GF chocolate chip pancakes for my daughter EVERY Sunday, come hell or high water. I’m going to pack her lunch and write her a note, every day. I may fight more depression when I’m experiencing greater levels of pain, and there will inevitably be disappointment and a sense of loss for every ride and swim that I’m unable to pull off, but I’m not going to stop dreaming about those rides and those swims, and I’m going to keep on channeling that part of me that’s hopeful and optimistic, I’m going to keep on channeling my inner Bill Walton, and I’m going to keep on battling to be a force for good in hopes of making a positive contribution to the cause, and that will be enough.
I’m convinced the most debilitating thing about pain, is how little control we have over it. It requires patience and acceptance, qualities that don’t come easy for most of us. But effort is a place we have full control. So let’s put our energy there. I’m not a New Year’s resolution guy, I’m more of a personal growth, rituals and routines, daily habits kind of guy, believing that our words influence our thoughts, and our thoughts influence our actions, and our daily habits go a long way in determining how our life unfolds. Anyone living in pain is a warrior. Anyone living in pain demonstrates strength. All we can do each day is give our best to the people and causes that matter most to us. Pain is complicated, effort is simple. Let’s keep it simple. It’s all about the effort my friends.
Head up, eyes forward, feet moving (metaphorically speaking).
With nothin’ but love, mwl