Celebrating the Beauty of Imperfection

As I woke up this morning, my thoughts went to the Carson of three years ago. I wondered what time he woke up, what he ate for breakfast, and how he enjoyed the few remaining hours of his able-body, not knowing that at 3:10 PM, he would lose the ability to do so much of what he had loved to do with his 23 year old life. I wonder if I played the piano or flute that day, or if I ran everywhere I went, like I usually did. 

Today means three years of paralysis. It means three years of loss and grief. It also means three years of amazing experiences and victories. As I began writing this, I promised myself that I wouldn't sugarcoat my experience, that I would remain consistent with the feelings that I have.

I tend to set goals that are extreme in nature. I struggle to set smaller, incremental goals because I’m so fixated on becoming the best, making it the farthest, swimming the fastest, finding that elusive cure, solving that impossible problem, walking after that spinal cord injury. The truth is that these impossible goals and standards have been a part of my thinking since birth (ask my parents). This mindset has been a strength in many ways, and a weakness in others, but for better or for worse, this last year of paralysis came with a difficult realization that challenged some impossible goals:

I’m not going to get over this.

I have believed over the last 3 years that if I get strong enough mentally, emotionally and spiritually, that I’ll be able to beat loss and grief. At this point in my life, I’ve adjusted the expectations of my physical recovery to match a realistic outcome. That is, not recovering too far beyond what I have so far. However, in terms of my emotional and mental recovery, I’ve believed that one day I won’t look back and grieve the way I still do at times, and that I’ll accept and embrace what has happened.

I grieve because I love what I lost, and that the only way to take away the grief, is to take away that love… which cannot happen. How can I become indifferent to the love I had of playing the flute with fingers that did as I asked? How can I forget the amazing feeling of my feet burning in my shoes after a run on a hot day, or the freedom of tumbling and flexibility? How can I forget what made me me in so many ways? The answer is I can’t, even I wanted to. I cannot forget what I had, and as long as I remember, there will be grief.

I’m a psychology major. My younger brother is also psychology major, my father a clinical psychologist, my older brother a PA for a psychiatrist, and I work for a psychologist. One of the greatest things I’ve learned from lifelong exposure to this field of social science is that life is incredibly diverse, and that perfection is a concept that rarely, if ever, has found a place on earth or in people. At first realization, this challenged my Pollyanna-like thinking that all people have good intentions, that everything happens for a reason, and that positivity can solve all problems. Side note: Pollyanna is paralyzed at the end of the movie. We a lot in common.

What I have gained, however, is the understanding that perfect circumstances are not a prerequisite to real happiness, and that light and darkness constantly coexist, and require the other’s presence for their own existence. It’s a beautiful and complex dichotomy. 

I mentioned above the realization that I’ll never get over this… but along with that realization came the recognition that I don’t have to get over this in order to be happy. I am learning to accept that on the same day I can both praise and curse God, that I can both love and despise my predicament at the same time, and that none of these feelings undermine the other. Truly, there are aspects of SCI that I despise (which shouldn’t be a surprise to most), but there are also parts of this whole situation I love. I’m never lacking for human connection. Life has a beautiful depth because of what I’ve been through. I believe I have connection to the most beautiful human beings that planet earth has to offer, many of which I have come in contact with or connected with because of my injury. 

Another side note: It's important for me to state that I do not mean to suggest that tragedies are worthy of celebration, or that if we just shift our perception, we will see what a blessing our losses are. I speak only out of the context of my specific life experience, understanding that there are many in painful circumstances who will read this, whose real pain I validate.

As this day arrived, the anniversary of my injury, I’ve wondered what I want this day to stand for. I want the 30th of December to be a celebration of life, and specifically, the celebration of our complex, confusing, and exquisitely imperfect lives. I want to celebrate the reality that I can live a happy and fulfilled life with a partially paralyzed body.  Life is rarely an either/or statement, but is so often an and/with statement.

Today I celebrate living as passionately, authentically and courageously as I can in a body that doesn’t respond to my commands, and that still lies dormant and waiting for the day that it will perform again as it used to.

What complexity do you celebrate?

I cannot finish this post without thanking the many individuals in my life that have stood by me with perfect love and loyalty. I must especially thank my parents who would give their lives for me or take my position without hesitation. Mom and Dad, we made it through another year.

Unpopular Courage

As I left my house to head for the gym yesterday, my eleven-year-old sister stopped me and asked, "Carson, are you afraid to wear that outside?" I looked down at my tank top and pointed to the letters that spelled "GAYNZ" (Gaynz Athletics is a friend's company that donates a portion of all its proceeds to LGBT charity). "Do you ask that because people will know I am gay? Are you afraid that I won't be safe, Kate?" She nodded her head with a sincere look of concern on her face. With a smile and an attempt to comfort her, I responded, "I'm sure I'll be fine."

Many of my family members and I have talked about some of the changes that have taken place in our social/political environment recently, including the impact that these changes have had on people of minority status, LGBTQ people included. We've discussed the ways in which some of these people have been mistreated. Some are people we know personally. These conversations have brought to us an increased awareness that while the national environment for LGBT individuals has slowly improved, it is still far from perfect, the progress seeming to wax and wane.

After trying to console her of her immediate fears, I decided to take advantage of an important teaching opportunity. "Katie, even if I knew that people didn't like to see what is written on my tank top, I would wear it anyway. It's so important that I keep expressing myself, even when it's scary and unpopular. Maybe especially when it's scary and unpopular."

She nodded and understood what I meant. I later thought that while I tried to show Kate that I'm confident about my position and decisions regarding this subject, there have recently been moments in which I've asked myself exactly what Kate asked me. Should I adjust my expression of self in response to increased hate speech, bigotry, and violence as a way of protecting myself? Should I remove the rainbow pin from my backpack, or refrain from holding my date's hand in public to avoid making others uncomfortable during this time of heightened social and political unrest?

I am fortunate enough that I don't feel that I am in obvious physical danger by being open about my LGBT experience, but I know many who are. These are hard questions for all of us to answer, and I know there are times when such adjustments are wise and necessary for the sake of both physical and emotional/psychological safety. I want it to be clear that I am not advocating for individuals to put themselves in harm's way. However, as I questioned making adjustments to my behavior, simply to make others more comfortable, I realized that such a responses act as reinforcement to the very behaviors that create fear in the first place. I realized that it is during such times of fear that acts of courage are most important.

I live in a very politically and socially conservative location and to be honest, I have found myself modifying my behavior in order to keep others comfortable. Such modifications uphold the current environment, and so often come at the expense of my authenticity and sense of self. So, I am frequently faced with the choice to either "fit in", or act in courage to live authentically and allow myself to be seen and heard as I am. After many years of soul searching and experience, I have found that, for me personally, vulnerable and courageous living is nearly always worth its cost. Even when that cost is high. Not only do I feel a deep sense of inner consistency and peace, I also contribute to a more inclusive world.

Any social change that has ever occurred has required courage by those who are willing to wade into unpopular opinion. At one point that looked like women who were fighting for the right to vote, at another time it looked African Americans and allies who were fighting for the abolishment of slavery. Regardless of the situation, tremendous courage was required to lean into the discomfort of being different or unacceptable to some degree. For some, such acts of courage did ultimately cost them their lives.

After my conversation with Kate, I realized that even though the GAYNZ tank top fits me the best and is the most comfortable, I wear it the least because I don't want to draw attention or make others uncomfortable (the gym I frequent is on the local Air Force Base where, until 2011, the LGBT "don't ask, don't tell" policy was in place). I have shirts that say "Utah Flute Association" or "Team USA" or "Defy the Odds". Each of these expresses a part of myself, so wearing something that expresses my LGBT experience feels neither pushy nor political in nature.

                                 

I know there will be times in the future when a variation of Kate's question will enter my mind. "Carson, aren't you afraid to say that? Write that? Do that? Believe that? Be that?" To that fearful question I hope to respond, "Yes, I am. But my integrity is worth being uncomfortable." It is authenticity that I believe opens he door to greater understanding, love and progression. After living in the proverbial closet for most of my life, there is little I prize more deeply or guard more fiercely than my authenticity. It is the key to my happiness, my wholeness, and my ability to contribute uniquely to the world around me. It is my goal to practice courage and act consistently with my values and morals, even when it is unpopular... perhaps especially when it is unpopular.

Predicting the Unpredictable

It was in that first year of my spinal cord injury that I remember laying in bed on a sunny Sunday afternoon, feeling the most despair I had ever felt in my life. I remember sobbing until I literally ran out of tears, thinking over and over, "This is how things will always be. This is how I will live the rest of my life. I can't do this. I will never be happy again. I need to escape this."

The idea that I would never take another step or feel the freedom of an able body was overwhelming. Those words that spoke permanence hit so deeply and felt so true... "always", "never", "forever". My clear dilemma was the knowledge that I could never improve, that despite all my best efforts, I remained in the chair with so little neurological return. Previous to this, I had been so accustomed to finding solutions to my issues, but this had no work around... and thus, great darkness set in. I know that I am not alone, many of you know this feeling so well. This is the nature of loss and grief, and it is part of the human condition.

I believe that the experience of loss is so much broader and pervasive than is usually acknowledged. The best definition of loss I know is that loss is, "the loss of hopes and dreams that are core to who you are, core to your identity". Under this definition, loss extends to all and the many aspects of our lives. Have you ever had a dream be crushed? I think most have... I often hear individuals say before sharing something painful with me, "This is nothing in comparison with what you're going through". I don't believe we need to lose all our mobility, or have a beloved one die in order to experience loss (though of course those are forms of legitimate loss). All loss is valid. All loss hurts.

I recently attended a QPR training about suicide and its prevention. My mind was naturally taken to moments of darkness when death seemed like an appealing option to what I faced. I've thought over and over about what a miracle it is that I no longer feel despair or hopelessness regarding my paralysis, and how confusing it is that I can feel so differently over the exact same situation. I've realized that in all my depressed moments I failed to consider the possibility that I would change, that I would get stronger and adapt. I could only see what would not change at the time, and committed the sin of prediction. "I'll always feel this way".

I am now sitting in that same bed, waking up early most days of the week to make it to campus for full-time school. My life is full of meaningful activities and I'm finding passion in my work and studies. My cup is full (well, almost), and I can truly say I'm as happy and healthy as I've ever been, pre-injury or otherwise. This is something I never thought I would be able to say, "How could I ever be happy?", I thought, "I'm paralyzed". But I am, I really am. That's certainly not to say that I'll never revisit grief and such, but it comes very infrequently.

The future is truly unpredictable, for better and for worse. Previous to coming out or having an injury, I wondered why my life was so perfect and thanked God that it would always be perfect (I chuckle at my ignorance now). My life experience seemed to suggest that things would always go the way I wanted them to, and I had no reason to believe something life altering was coming my way. Conversely, I felt totally jaded after having come out and been injured in the same year, believing that only bad things were to come, and that hoping for a better future was foolish. Predicting life's outcomes is a pitfall for all. and usually ends poorly. Who can predict an accident, or the onset of illness? But who can predict the sudden changes in life for the better, perhaps through a relationship or life opportunity that brings fulfillment and joy? The only thing we can realistically predict is that the future will remain unforeseeable, as cliche as it feels for me to type those words.

Prophesying our life outcomes makes us feel safe, I think. Human beings don't love uncertainty in general, but understanding that I cannot foresee what's ahead actually brings me hope. It is this fact, this unpredictability, that lends to the feeling of possibility for a better future. While we do not always get to choose what happens to us, we certainly do play a large role in shaping our owns future. We can make better lives for ourselves.

I know now that how I currently feel, no matter how low, is not an indication of how I will always feel. There are solutions to hopelessness. I am grateful, deeply grateful, for the human capacity to adapt and change. It is because of our shared ability to do this that we can work through loss in healthy ways, and find ourselves again on the other side of the grief, depression or hopelessness. Life is challenging, and loss is devastating, and I am in no way suggesting that we can all simply put our predictions aside and suddenly find some magic solution... but the unforeseeable nature of life gives us time, opportunity, and hope that, one day, we can leave whatever darkness we are in, and find the light that will provide more meaning and purpose than we now see.

From One Hope to Another

It was only about two years ago and no more than four months after my SCI that I was back in the water, doing my best with the help of a physical therapist to stay afloat (and alive). A lot of swimming has happened in the last two years, and even more soul-searching and healing. I had so many moments when I was ready to quit, contrasted with the highs of meeting elite athletes and inspired friends along my Paralympic journey.

I spent all of last week in Charlotte, NC, where Paralympic trials were held to select athletes to compete in the Paralympic Games in Rio, Brazil. This weekend was one I had looked forward to since I was laying in the hospital bed in the ICU. I didn't know how it would all work out, and I certainly didn't know all the hell I would have to go through along the way, but I did know that I wanted to get to at least the trials, and maybe even the 2016 Games.

I felt a sense of gratitude and accomplishment as I rolled through the airport and saw dozens of other individuals all coming together to compete for a spot in Rio. I felt like I was a part of something great, and I was proud to be one of the many athletes involved. In some ways, being at trials had some special significance because of some recent barriers I've had get in the way.

As some of you already know, a few months leading up to trials, when training was most crucial, I had a series of infections hit back to back that kept me out of the water and gym for almost two months exactly. Half way through this battle with infection, I emailed the director of the team and asked her opinion as to whether or not my participation in trials would be justified, given the context of my situation. I was encouraged to go, and was also wisely invited to recall the reasons I started swimming in the first place. She must be aware of my occasional all-or-nothing thinking.

I decided to go and didn't regret a minute of the experience. I had my typical triggers at the pool that reminded me of the able-bodied life I once lived, or how I wish I had a less involved disability like so many of the other athletes. But once I started connecting with my friends and fellow swimmers, I remembered that it's the connection with these amazing people that makes the experience so enjoyable. I was accompanied by both of my parents, who to this day support me wholeheartedly in my quest to find peace and happiness post-injury. I enjoyed having them all to myself for so long, and also enjoyed bringing them into the Paralympic arena that they don't frequently get to visit.

I came to the trials knowing that I would not qualify to compete at the Paralympic Games, and such was the result. I had come to terms with this to some degree even before arriving, so I was (almost) content to just swim hard and make sure I left it all in the water... and that I did. And to be completely honest, while it was a dream, there are others who earned and deserved that slot more than I did for various reasons, and I'm okay with that. I am ecstatic for every individual who will either walk or roll out to the inspiring music of the Olympic Fanfare (which has been my ringtone for over a year). Yes, I will definitely cry here and there through of the Olympic and Paralympic Games, but those athletes earned their right through their own losses, blood, sweat, and tears. I will gladly support them as they represent Team USA.

Saying goodbye to a dream is hard, and calling losses for what they are takes straight up courage and bravery. No one wants to look into the pit of loss at all their hopes and dreams, realizing that it didn't come together as hoped... but learning to do just that and move on with a gaze set on some new horizon is an experience that I've learned to value. Learning to accept a loss is sometimes what allows me to close an old chapter so I can start a new one. Of course, that's much easier said than done, I know because I'm feeling some of the difficulty of closing a chapter even while I write this.

One of the trickiest parts of loss is not just feeling the emptiness, but knowing how to effectively fill the void or replace the empty feeling. I've had to become a sort of new-dream creator, learning to fashion new aspirations to my own new limitations or lost dreams. I find myself doing that now as I meditate on what my future will hold for me as an ever-aspiring Paralympic athlete.

So it is from one hope to the next, from one dream to another. No one ever really capable of predicting the outcome. This is life, and I believe the greatest yields go to the risk taker and dreamer... so I still plan on risking and dreaming. There are still moves to make. The game is far from over.

When You're The Fainting Robin...

If I can stop one heart from breaking, 

I shall not live in vain;

If I can ease one life the aching,

Or cool one pain,

Or help one fainting robin

Unto his nest again,

I shall not live in vain.

-Emily Dickinson

This poem is short and has a simple message, but few words have resonated with me as consistently throughout my life as these have. They express the simple truth of caring for another in pain and need, and ends with a bold assertion that simple adherence to this principle gives meaning to our lives. "I shall not live in vain". There are few principles I value as much or buy into as wholeheartedly. Actually, while I've struggled to do so, I've sought to center my life around these concepts.

For as long as I can remember, I have approached the world with the sense that it was a beautiful place with many wonderful opportunities waiting for me. I've believed that people were inherently good, that love was the great healer, and that good would always win out against bad. Through my childhood and long after, life had mostly good things to offer me. I recognized that blessing and wondered why I had been given such a life of good things. There were few things that challenged my rose-colored perception of the world.

Until I started gaining difficult life experience...

When I came out and addressed my sexual orientation, my life gradually took a turn down a road of rougher terrain, my confusion causing me to reassess my perception of the world and the human experience. I began running into the first of what would end up being a never-ending stream of questions about life in general, but especially about my own. The hopes and dreams for my future were brought into question. During these periods of darkness, I watched my own departure out of bliss and ignorance into a space of real-life challenges and hopelessness, and seriously wondered if my heart would become irretrievably hardened and then ultimately break. Despite these storms, I remained optimistic that above the layer of black cloud was shining a beautiful bright sun that would eventually break the tumult and shine down on me again.

It wasn't until my spinal cord injury that I felt so beaten down that I truly challenged my own sense of optimism and hope. Life wasn't beautiful anymore, it didn't feel like there were good things to come. Happy endings were out of sight, and finding relief to my anguish felt impossible. I questioned everything that I thought was good and right in the world. I began to bitterly reprimand myself for the fairytale thinking I had bought into as a young, naive boy with such little life experience. I wanted validation for my deep suffering and sense of injustice, and tried everything I could to derail the optimism of my mind. In essence, I was feeling jaded and hardened, and began to mourn the loss of the Carson who believed that life was beautiful.

Because I didn't believe I could endure any more disappointment, and worked to avoid any thinking that might set me up for such, like hope and optimism. If I believed that life was only one big mishap of loss and pain, there would be no disappointments to be had. Despite my efforts to remain what I was calling "realistic" about life, every so often, during very depressed times, I would be blindsided momentary feelings of light that were too brief to measure... And the feeling always whispered that life was beautiful.

I would attempt dismiss the feeling and move on, but these feelings began to happen frequently  and came from such a deep place inside of me that it became difficult to avoid or ignore them. Sometimes it was a song that brought the feeling, sometimes it was a thought, but it was usually an experience dealing with people. It was knowing my family slept together on the floor of my living room the night of my injury, or it was receiving over 600 letters of love and support in the hospital from many people I had never met, or seeing strangers with "Team Carson" or "Defy the Odds" written on their T-shirts.

I slowly found the courage to re-reassess all the same things, vacillating back and forth between two ends of a spectrum, feeling the fear that accompanied the hope... The hope that life could still be beautiful.

The truth is that my life experience has brought my fairytale thinking to an end in many ways. I now understand that tragedy strikes unexpectedly, and that in many ways loss is an inherent part of life. Bad things happen to good people, and good people sometimes do bad things... but in other ways, my same childhood thinking has only been reinforced, but this time against the backdrop of experience and testing. While I haven't experienced the worst this world has to offer, knowing that beautiful ideas have withstood the most hellish of times brings me a great amount of confidence as I adopt these views as my own.

I do believe that life is beautiful. I also know it can be terribly difficult... but more than ever before, I believe that a life of helping others and alleviating pain is a life of great worth and a part of the path to finding happiness. I once worried that the words to this poem would feel cheap and meaningless at some, but they carry far more weight than they ever have, for which I am grateful.

In retrospect, I realize I've been a "fainting robin" of Emily Dickinson's poem. So many of the moments that challenged my dark perception of the world around me were moments when I was scooped up by some kind soul and put back in the nest, only to inevitably fall out again. It has happened countless time. If there is something that I am both intensely grateful for and perplexed by, it is the number of times someone has been willing to help me along my sometimes helpless journey. I'm not sure I realized the power behind small acts of kindness until I was the one that relied on them for my survival. Sometimes we are the helper and sometimes we are the helpless, and for me, both bring the light that haunted me in my nightmarish moments... the light that told me that life is still beautiful.

The Canvas of Life

Grief is an unpredictable thing. It has its ups and downs and twists and turns, and right when you think you've got it figured out, you're taken for another ride. You readers must get tired of hearing me make the same realizations time and time again, and I'm doing it again I suppose. But hey, it's the grief train and it's out of my control.

To be honest, I'm actually not in a bad place at all. I've had a lot of wonderful things happen over the last few months. I have been swimming and training harder than ever, taking more classes, teaching more students, and was privileged to give the keynote address at the annual Suzuki music teacher conference. I'm grateful for how life continues to progress and I occasionally have moments when I think, "Wow. I am seriously happy and loving life". That's something I wondered if I'd ever have again and here I am two years out from injury, finally feeling it some... And hoping to feel it more and more.

For some reason, over the last few weeks I've been more aware of my losses. Most days I wake up and just get to my normal activities of daily living. But recently I've been waking up thinking, "I don't want to transfer into a shower chair, I want to stand up. I want to go to the bathroom standing up, and I want to shower standing up. Life is so hard..." The confusing thing is that I wasn't remembering all these kinds of things even four to six months ago, but here I am again reliving some of that same pain without rhyme or reason as to why it has resurfaced.

I was at the gym the other day, lifting away to my music which often happens to be classical. A song that is very close to my heart came on and I was totally thrown into a strange sobbing mess. There I was in a tank with my lifting hooks on, with tears welling up so much that I had to lean over to let out a few silent sobs and dry my eyes. I miss it all so deeply. It's a pain that is indescribable, not so much because of its intensity, but because of its unique quality. There is truly a bitter-sweet quality to loss. The feelings associated are comprised of the love of what I had as well as a sadness of the loss of said love.

Emotion is a beautiful thing to me, even the difficult emotions, and I often imagine human emotions to be very much like the paint palette of an artist. On this palette is a wide variety of colors ranging from the lightest of lights to the darkest of darks, ensuring the contrast and shading of any conceivable image.

When my canvas is filled only with dark shades of black, charcoal or grey, I only wish I could have never known the darker side of the palette. I find myself wishing that I could have spent my life painting a mural of Easter pinks and yellows, without any thundercloud colors to rain on the perfect image of what I wanted for my life. But after some meditation and life experience, I find myself deeply valuing the dark shades nearly as much as the lighter ones. Not only do the grey and blacks make the whites whiter, but they also carry with them a beauty of their own.

There are some beautiful images that simply cannot be painted using only the pretty, bright end of the spectrum. In any art form, depth requires contrast. Some of the most stunning images or passages of music seem to carry with them the very powerful disparity of color and light, or tension and resolution. In a similar way, some of my most beautiful and vivid memories carry with them deeply contrasting feelings. Truly, the brightest whites I have ever had the privilege of experiencing only ever existed because they were preceded by moments of pitch black. 

We all know that tar-black paint on a solid black background would not be likely to yield an appealing image... but after the last several years of life, I'm not sure the white on white would look so good either. Life is beautiful, because life has contrast. Life is beautiful to me not only because it has wonderful parts to it, but also because it has difficult and tragic parts to it. There are parts of my life that are tragic. There are parts of my life that are beautiful. I am who I am because of both... and I hesitate every time I think I would change the ratio of darks to lights on what is the beautiful canvas of my life.