A few years after my injury I used to take daily walks around the neighborhood. Around 3 years out from injury I was on a walk and a Fedex truck drives by, pulls over to the side of the road about 100 yards ahead of me on the opposite side and comes to a stop. He gets out of the truck, crosses the street and starts walking toward me. Sensing some anxiety my body immediately began to seize and constrict, making it nearly impossible to walk. I stopped. He approached me with a big smile, stuck out his hand and we shook hands. He introduced himself as Mike. He went on to ask how I was doing, and was curious to know what was ailing me - a bad knee, injured hip? I said it was something much more involved but didn’t elaborate. He went on to say that he been driving this route for years and had observed me walking on a regular basis, noticing steady improvement in my speed and gait. He said he admired my consistency and persistence in all sorts of weather conditions (sans snow and ice). He went on to say that he had wanted to stop and tell me this for months but due to his compressed delivery schedule had been unable to do so, but today he decided to take a few moments. With tears in my eyes I thanked him for taking the time to stop and tell me this. He gave me a hug and said he had to get back to his deliveries. I shared this story with my mental health therapist and she remarked, “you know Jamie, you offered Mike something - hope.” She continued, “you never know what is going on in another person’s life from which they may draw hope and inspiration from what you are doing in your recovery.” Sometimes in my moments and I have plenty of them - frustration, anger, sadness, depression, pain - I forget that it is not just about me. I do get selfish. Everyone reading this and many others lift me up, give me hope, keep me going. This reminded me that I'm giving something too - to the Fedex man, to my neighbors, family and friends - you. Whatever it might be it makes me feel good that I can.
I have been asked on occasion what gets me up every morning. My frank answer is that it is often a struggle, fighting through the overnight hours of frequent awakenings caused by pain, extensor cramps and bladder needs. Despite these I always have goals in my mind for the next day, usually starting out with an early morning workout. The goals for the day extend beyond exercise, whether it is things I want to accomplish at work, website, book or speaking events. The goals give purpose and drive me to push through the headwinds and inevitable resistance this cruel and relentless injury poses. I have a focus now, and that is doing something I haven’t done very much in my life - giving back. For the better part of my 60 years it has often been about me, my professional ambition, my physical fitness, my well-being. I now know there is a larger purpose for me, and that is to use my story, experiences and learnings to affect positive change in the lives of others, especially those facing some kind of life infirmity, not just spinal cord injury. Another factor that drives my daily focus is my two incredible children who in their own ways have suffered as a consequence of my injury. I owe it to them to give my best every day. I want them to know that their father committed to fighting the good fight, aspiring, persevering and prevailing on my terms. Leaving a legacy of commitment, resolve and determination matters a great deal to me and hope those are characteristics they will embody in their own lives.
I have been very fortunate to recover so much lost function over the last decade since the accident. It is not lost on me that I have been lucky to become functionally independent. Despite these accomplishments there are still headwinds that I have to face every day. It is part of this, in my doctor’s words, “unimaginable injury.” The most challenging deficit is chronic pain, which always hovers between 3 and 5 on a scale of 10. I would describe the pain as distressing, meaning much of my time is spent thinking about how to manage it. I use a combination of approaches - exercise, over-the-counter medicines, visualization, stretching, medical mj, icing, massage, acupuncture and reflexology - to name a few. I have a compromised bladder, which is often over-active and often subject to spotting accidents. I have issues with my toes, constantly at risk of infection, fungus, and toenail overgrowth. Fortunately I found an awesome lady, Dawn, who does what are called medical pedicures, or medi-pedi for short. She has been a gift in taking care of my feet. I have serious issues with spasticity, muscles constantly seizing and constricting. I combat it with exercise, frequent daily stretching, muscle relaxant medications, and movement. It is akin to having your emergency brake on all the time, and does impede movement. It also makes it extremely painful to stand, especially standing in place. Unfortunately my gluteus muscles don’t fire properly so all the stress is absorbed by my hip flexors. I’ve discussed some online links that have provided an array of exercises to activate and help wake up these dormant muscles. I’m beginning to see the benefits. Despite these deficits and others I face I remain undaunted in my pursuit to improve my physicality and emotional well-being. I acknowledge them but will not let them derail my efforts to improve my condition.
When I had reached four months post-injury I suffered the equivalent of a second “crash, although this time it was a mental crash. Due to a confluence of circumstances I found myself sliding backwards, losing the hard-fought gains I had made and a marked worsening of symptoms including pain and spasticity. So much so that I became reclusive, not wanting to see anyone or do anything. I was ashamed of myself. I became a couch potato and clock watcher, buried in my mind with dark thoughts including how I might end my life. My life was in a delicate place. Recognizing the severity of my depression, a first in my life, I sought out my SCI physician Barry Goldstein, MD. His kind and understanding eyes told me what I needed to hear - I was going to be ok - but some things were going to need to change going forward. Medication management was one change. Therapeutic changes was another. Most significantly was the love and commitment of my family, especially my wife Diane who stayed by my side and continued to love me. There were other things that helped in this “second’ recovery journey. Though difficult I forced myself to become more socially engaged, despite the pain and shame. I became more involved in community, especially at the gym, which being around like-minded athletes helped lift me up. Going back to work, even at limited part-time hours began to reconnect me to some sense of purpose. My new therapeutic interventions involved being connected with a terrific PT practitioner, Chris, and two amazing pool therapists, Linda and Debbie. Their positive energy was a huge factor in helping re-right my mental state and helped me resume my recovery journey.
In medical speak, this term is also referred to as brain plasticity or neural plasticity. Basically it refers to the changes to the brain over time. With regard to physiological trauma such as spinal cord injury it refers to the brain’s ability to adapt and reorganize. While I have no scientific basis or research to back this up I believe that unlocking the brain’s plasticity and why it behaves in this adaptive way is the key to ultimately finding a curative treatment protocol to this injury. The reason I say this is from my own recovery experience. Unlike what common medical beliefs and population studies suggested recovery of lost function continues long after the previous accepted norms of 1-2 years. For decades it was common belief amongst the affected specialties that recovery from spinal cord injury plateau’s after 1-2 years. In the decade since my injury I have had more recovery in the last 7 years than the first 3 years by many fold. Why? I believe the magic lies in leveraging the brain’s plasticity. How do I think I accomplished that? By nurturing my system with the right “food” - proper nutrition, rest, visualization, mindfulness, community, exercise, belief and attitude - I have provided my system the best opportunity to reorganize and adapt to this injury. In recent years I believe this allowed me to push boundaries and accomplish some audacious goals such as riding a road bicycle again, hitting a golf ball (without falling!), rowing in a crew shell and taking a ski run. I believe that plasticity, if properly leveraged, can be harnessed to bring healing and capability to all of us dealing with physical or mental adversity.
From my early days in the hospital I had no hand or finger function. Zero. I couldn’t hold anything in my hand, couldn’t grip a utensil, struggled mightily trying to get my fingers to do anything. I couldn’t even get my thumb to touch my forefinger, let alone touch any other fingers. The journey ahead was daunting. In my maniacal pursuit to get independent, I embarked on this process of making movies in my head of what I wanted to accomplish. These movies were authored, edited, published, scripted, acted, produced and directed by me. I choreographed the movie of what I wanted to accomplish in great detail, every movement, every nuance I could think of. In the case of getting my two fingers to touch, I scripted a movie whereby I did the exercises I was asked to do - playing with silly putty, handling dominoes, marbles and coins, trying to pinch clothespins, picking up playing cards off a table and more. I wove into the movie script gradually bringing my two fingers closer together after every exercise, until one day two weeks later I was able to get them to touch. Pedestrian goal? Perhaps, unless you're neurological system is compromised. Victory? Absolutely!
I have been asked about how I feel about this subject. Do things happen in life for a reason? Are all things meant to be? Do I believe in fate? I’ve heard preachers in church talk about how the divine doesn’t put anything in front of our lives that we are not equipped to handle. Further, some have said that the reason we face adversity in life is to challenge us and come out the other side with a revised and strengthened sense of purpose. I struggle with this notion and have a different view. I believe that much of our lives come down to the choices we make and the relationships we hold. There’s no question that sometimes bad things happen to good people and we have no control over it. Things happen, often times cruelly, abruptly and without warning. So why do these things happen? I don’t believe it’s fate, or ordained or part of some grand master plan. I believe that life isn’t fair, nobody ever promised it would be. We get dealt a lot of hands in our life, and some of them are very difficult. We play the hand we're dealt. Being dealt a bad hand doesn’t mean there aren’t many more good hands to play. There are. I believe if we keep the focus on making the most of what we can do, and not dwell on the things we can’t, that we have best positioned ourselves to maximize the time the divine has left for us on this earth. I believe in a simple yet profound statement from my mother-in-law Muriel, “Jamie, just make the best of it.” Absolutely Muriel, I apply your simple words every day I wake up trying to make the best of what I can do and not dwell on the things I can’t.
My spinal cord was damaged at C7, suffering central cord damage rendering me an incomplete quadriplegic. From the MRI and CT studies the cloud of damage in the cord is clearly visible. Early on during my hospital stay I formed this picture in my mind of a light beam emanating from the heavens. I imagined this light beam focused directly on the injury site, acting like sun, focused on the ‘cloud’ in my central cord and dissipating it much the same as an early morning sunrise might burn off early am fog or low clouds. I have always held onto this vision. I’m especially tuned into this when I am in quiet moments stretching either at home or the gym. I think of this light beam as coming from a universal energy force and its healing energy focused directly on my spine. This energy force could be likened to a God-force, or in my way of thinking a kind of Jedi-force - a force for good. I’m not particularly spiritual. I do believe there is some kind of force in the universe that we can all tap into. Many do this through prayer. I do it through visualization. I do pray from time to time, and believe in its power. I believe its power is sourced from this universal energy force. Visualization, a form a mindfulness, is a powerful force that can enable healing.
I believe that most of what happens in our lifetime is a consequence of the choices we make. Some choices we make are routine and pedestrian, like when will we get up or what will we eat for breakfast. Other choices we make our more profound and durable, like whom will we marry or where will we live. Certainly there are things that happen that we don’t choose. I didn’t choose to have a catastrophic injury that day in 2007. I don’t believe that you, relative or loved one chose to be diagnosed with some terrible illness or disease. There are times when stuff just happens. We do exercise choice in how we respond to these involuntary events. Will we succumb, surrender and give in OR will we choose to fight the good fight - aspire, persevere and prevail? I contend that I am by choice. I contend that you are by choice. Without choice there is no way forward. We are just idling, orbiting in circles, going round and round on the merry-go-round. Choice gives us direction, and most importantly a way forward.
There is not a moment during the day or night when I don’t pay a price. Whether I sit, stand, walk or recline my body suffers. It might be pain in my back, seizing in my waist, spasticity, and extensor cramps at night, or having a bladder or bowel accident. Even though I have had a strong recovery these residual deficits are challenging and part of what makes this injury so cruel and relentless. My system is never “off”, even when I am sleeping – if you can call it that. Sleep is in increments and is continually interrupted by pain, cramps, or a squeaky bladder. Chronic pain always hovers between a 3 and 5 out of 10, meaning that it is distressing. It is constantly on my mind and always trying to figure out how to manage it. How do I deal with this? I think back to the words of my poem by the same title, which reads, “So what does get me through it? What is there to take away from the challenges I face? That’s part of the price I pay. Define my terms and take a stand. It’s the place I start and say. Choosing to win and getting better overcomes the price I pay.” You too can live life on your terms, not what others say or think you can do, or residual deficits you may have. It starts with choice. Once you choose you have a way forward.
Shortly after I was discharged in July 2007 I continued with outpatient physical and occupational therapy at Harborview Medical Center. My Occupational Therapist Beth said to me, “Jamie, there are four words I want to explain to you that will be important in your recovery. Planning, preparation, prioritization and pacing.” I thought it was great advice. The only problem is I didn’t follow it, at least not in the first four months post injury. The most important of those words was “pacing”, and I didn’t pace myself well at all. In fact, I felt this incredible sense of urgency in those initial months to do everything possible to get better, often times going to 8-12 therapy appointments a week. I wouldn’t let myself rest during the day, even though my body was screaming at me to do so. I had this misguided belief that if I rested I was somehow giving in to the injury. This maniacal march took me to the edge, and I suffered a terrible setback, deep depression, suicidal thoughts, and an exacerbation of symptoms. I crashed a second time, this time mentally. It took some time to climb out of the hole, but this time around I was mindful about all four words of Beth’s advice, especially pacing. This time I listened to what my body was telling me, and rested when I needed to. It has made all the progress since then possible.
It was three years after my accident that I rejoined the athletic club I had belonged to years before when I was an active squash player. I had been through rigorous physical therapy during those early years post-injury and my therapist in early 2010 suggested I join a gym and continue with my exercise program. I knew exactly where I would go, the Seattle Athletic Club in downtown Seattle. I met a friend there who became my workout mentor and partner. In the early days of working out together I said to him, “Sam, when I say enough is enough, you have to trust me when I say it’s enough.” He replied, “Jamie, you need to learn to trust yourself.” Those words changed everything in my recovery trajectory. I realized that what was in the way of making further recovery progress was fear. It was getting in the way. Sam’s statement set in motion a whole new approach, and challenged me to go places in my recovery I never thought possible. Those words changed my life. They could change yours too.
Often times what we are capable of doing lay dormant, suppressed, and even hidden in the recesses of our being. Harnessing those capabilities can take concerted effort, digging deep, going places we never thought possible. For me, recovering lost fine and gross motor function from the injury I sustained has been monumentally difficult work. Through encouragement and challenge from others I’ve discovered capabilities I didn’t think I possessed, particularly as pertains to my physicality. I’ve had to overcome barriers to reveal those capabilities. It’s been hard work. The results speak for themselves and tell me that our bodies possess much more than we might otherwise give them credit. My advice to those who are facing uphill climbs in whatever journey is in front of you is to explore, locate and unleash the amazing potential you have. It’s there, waiting to be harnessed!
If I had a chance to do it over again I would have sought out mental health counseling right after being discharged from the hospital. Instead I waited a year until I finally partnered with a clinical psychologist. I’ve never been depressed before and figured I could macho my way through the initial months of recovery without any kind of intervention. I was so wrong. Four months after being discharged I slid in to a deep depression, even suicidal. I felt like I was falling and there was nothing there to catch me. Depression is a scary place. Fortunately my physician was able to get me stabilized with medicine and a new round of therapies. I had experienced a “second crash” and it took several years of hard work to climb out of that hole of depression. I finally did seek mental health intervention, which I did consistently for the next 6 years. My advice is there are no shortcuts when it comes to the grieving process, and encourage anyone facing a life adversity to seek out mental health support.
It was a few days after the accident, while lying in that lonely hospital room that my doctor came in for a visit. In the course of the conversation he looked at me and said, “Jamie…you need to choose…get independent!” It didn’t resonate until a few nights later, once again in my hospital bed, perspiring profusely, anxious, motionless immersed in sweat-soaked sheets. In the course of the longest night of my life, I flashed back to that exchange and realized I needed to choose. My life was at a fork in the road, which way was I going to go? Surrender, let this injury defeat me OR fight the good fight and aim with all my effort to get independent. I resolved that night to do everything in my power not to be enabled by anyone or anything, especially no assistive devices. Ten years later that choice to get independent has guided all of my recovery efforts and continues to do so. I chose, you can choose to.