Latin for “to aspire and to persevere” these are the words that represent the motto of the boarding school I went to from 1971 to 1975, Avon Old Farms School. Both my father and brother Rob were alumnists of Avon. These words certainly had meaning and focus while I was in high school. As I have grown older, and particularly as I have faced the challenges of spinal cord injury, these words have taken on a whole new level of meaning. I coined this phrase post-injury and it goes like this: Define Your Terms. Take A Stand. Choose To Win. When I think back to high school, I realize now that this mantra I’ve embraced had its origins in Aspirando et Perseverando. In parallel fashion, this phrase I coined could easily read like this: Aspire. Persevere. Prevail. Avon taught me a lot of life lessons but none as significant as this. Finding focus in trying to recover from this injury has had me reaching, pursuing, goal setting and committing; it has had me resolute, unwavering, determined and persistent; it has had me visualizing, accomplishing, achieving and prevailing. It is amazing to think that over 46 years ago when I first walked through the quadrangle of Avon Old Farms School I would quickly learn about the school’s motto and what its founder Theodate Pope Riddle intended as she created a school for young boys that would transform them to young, capable, impactful men. The school’s motto has been a timeless instrument of focus in my life and has helped me embrace the enormous challenge of this injury.
I was asked recently what if any gifts I have learned about myself since the injury nearly 10 years ago. I said that one of the gifts I’ve learned is that I do have a heart and that I am open, willing and happy to share it. I can’t say that was case twenty years ago. Back then I kept my heart and emotions for the most part in a protective shell, selectively and cautiously deciding who I might share it with. Even then I did it with reluctance not wanting to fully open myself up express my feelings and emotions. My mother-in-law Muriel would occasionally poke at me saying my personality was even mechanical, robotic at times. Ouch. What a difference my later adult years makes. Since my injury, and particularly since I authored Will Your Way Back I have to give a lot of credit to my developmental editor Tess who in her gentle and understanding way was able to draw out of me deep rooted emotions I would never have shared with anyone - family, siblings, parents, friends, let alone people I don’t know. What I learned over recent years is that I feel completely safe sharing who I am - faults, strengths, mistakes and achievements. I am comfortable being myself, Jamie, and speaking in terms that are genuine, unfiltered, authentic, raw and real. The veneer is gone. The protective shield I used to protect my vulnerabilities are gone. It feels great and many ways a relief. I don’t have to be anyone other than who I am. For years when I was growing up my father would often remind me, “Jamie, just be yourself.” I didn’t know at that time who myself was. Every time my Dad said that I was all the more confused. Perhaps I am a slow learner but it has only been in very recent years, especially after working with Tess, and before that Sherryll, who me really is. I am a determined, persistent, detail-oriented, analytical and sensitive person. I have feelings and I am no longer embarrassed or ashamed to express them. When I feel a need to cry, I cry. When I am angry or frustrated I have learned productive ways to process those feelings, which usually isn’t any further away than the gym. The gift I realize I have is one probably many already know - I am comfortable with who I am. After so many years of feeling inadequate or trying to be someone else I wasn’t it is gratifying to be in place now where I am ok.
For most of my professional career I often managed with my head. I was logical, rational, reasoned and as my good friend Atsuko would often remind me I am a very linear thinker. Captain Linear she would jokingly refer to me. I was also at times considered to be a little unapproachable, not in a bad way, but not exactly magnetic or a person people were easily drawn to. I was generally pretty reserved. I was an introvert by nature although I could easily toggle between intro and extra-version. In late 2006 I was being considered for an officer level position at the company I was working. During an interview with the CFO whom the position reported I was asked a very difficult question. “Jamie, I have spoken with many small groups in the IT department and there doesn’t appear to be a lot of advocacy for you in this new position. Do you have an idea why?” I answered the question as directly as I could surmising that perhaps some of it had to with others feeling I was a little too distant, or not engaged enough in their lives. I provided some other thoughts but I realized then that I was out of the running, at least for that period of time. The company offered to connect me with an executive coach who worked with other officers of the company to help me work through a development opportunity, specifically people development. What I learned in the 7 months we worked together, right up to the day of my injury, was that I had a disconnect between my head and heart in the way I was relating to fellow employees. Sheryll helped me understand the importance of bringing the two together to help me open up more and be willing to open and share more of my heart in my leadership style. Unfortunately my work with her came to an abrupt halt in June 2007, however my desire to connect my heart more outwardly only got stronger. I’ll say more on this in a future post but suffice it to say a process was put in motion that has allowed me to author a book and speak to people in a way I could never have dreamed of twenty years ago. It has made all the difference in the world.
While living in Phoenix a few years ago I met a man in the local gym named Paul. Paul was a self-proclaimed “gym rat”, 5 years older than I and a total stud. While stretching on the mat after a workout we introduced ourselves and struck up quite the conversation. He shared with me some of his life’s journey, including a very tragic event where he sadly lost one of his three sons to a motor vehicle accident, strangely enough less than ½ mile away from where we had been working out. Somehow his son’s pickup truck edged off the side of the road, struck a telephone pole head-on and exploded in a ball of fire. His son never had a chance. I could feel heartfelt emotion as he told the story. I shared my story, as he had observed for some weeks my awkward movements in the gym and was always curious to know what had happened. After I finished he went on to tell me that one of the things he was most proud of was “overcoming” this terrible tragedy in his life. Notice that he didn’t use the overcame as in past tense, but the ongoing, hard fought journey of continuing to overcome such unimaginable loss. He asked what I was most proud of. I said to that point I hadn’t really thought about it. I said I had to agree that I was with him, that I too was proud of overcoming, not as if it was something I had achieved but rather was achieving, every day, every hour, every moment of every day. Although I don’t see Paul anymore now that I am back in Seattle I will always be grateful for the bonds we formed and for his gentle, watery-eyed reminder that loss like we have both experienced in our lives is an ongoing, day-day to struggle to overcome. Be well my friend.
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.