Not Alone

I woke up squinting just as the sun was beginning to stream through my bedroom window. Still exhausted from a restless night of sleep, I rolled over and looked at my phone to realize that I had slept in later than I meant to. I sat up slowly and waited a moment to let my blood pressure rise before pulling my legs off of the bed, one at a time. After pausing another few seconds, I transferred into my wheelchair and headed to the shower, grabbing a towel on the way.

I opened my iPhone’s music library and scrolled through until I found an upbeat playlist. Turning up the volume, I set it on a ledge next to the shampoo, just out of the water’s reach, and turned on the shower. I aimed the water against the wall, waiting for it to warm up, and sat with my arms crossed and head lowered. Despite the uplifting music and rising steam that offered to lift my spirits, I couldn’t shake the heavy feeling that I had gone to sleep and woken up with. 

The last six months have been some of the most difficult I’ve lived since my injury. They’ve been full of firsts in the wheelchair, something that always tends to bring up grief for me. Since May, I moved out on my own, got a puppy, enrolled back in fall semester, and started dating more. Progress in these areas is worth celebration, but each came with major challenges that wouldn’t exist were I not paralyzed. I don’t want to have to worry about finding an accessible apartment building, or train a puppy from a wheelchair, and I don’t want to deal with the insecurities of having a disability in the context of a relationship.

As I sat in the shower with the warm water running over the back of my head and shoulders, my mind was filled with thoughts of wanting an easier life, a “normal” life. When will this stop being so difficult? When will I stop grieving? I shut off the water, and reached outside the shower curtain for my towel. I leaned forward to dry my legs off, and as I did so my feet slipped and I fell forward onto the wet bathroom floor. This is the second time I’ve fallen in a month, and I almost never fall.  

I grabbed my towel and pulled it under me before disentangling my legs from the footplate of the shower chair. Finally freed, I sat with my legs in front of me, sopping wet, with Lindsey Stirling’s “Crystallize” blaring from my now out-of-reach phone. I felt my face warm as I became overwhelmed by a combination of self-pity and disgust. There could have been no better image that represented how I felt about life at that moment, than a cold, dripping Carson, sitting naked and paralyzed on the bathroom floor. Filled with rage and pain, I leaned forward onto my elbows and sobbed. 

After a few minutes of trying to collect myself, I pushed my wheelchair out of the bathroom ahead of me, scooted across the carpet, and transferred up onto my bed. I dried myself off of the cold beads of water that clung to my goose-bumped skin, and began dressing while a stream of angry tears ran down my face. “This is pathetic," I thought over and over.

The last few months have brought me into such a turbulent emotional space that I’ve questioned whether or not I actually possess the resilience necessary to overcome my challenges. I’ve felt pushed to my absolute limit, and it’s been sobering and terrifying. I’ve found myself earnestly asking, “How can I make it through these challenges? How can I endure this pain?” 

Not knowing how, or perhaps not trusting my own strength, I’ve turned to others. My dear older brother received several texts a day for many weeks. Messages like,  “Braun, I’m reaching out, I’m struggling”, or “My heart feels so heavy, I don’t know if I can do this”, and sometimes, “I know you’re busy, but can I call you when you have a moment?” From giving me ideas to reduce my anxiety, to offering wise relationship advice, he made himself available to support me. Every time he messaged back, he reassured me that I was never a burden, asked questions to better understand the situation, and expressed love.

The night of the same day that I fell in the shower, I was supposed to meet up with two friends. When I expressed to them that I wasn’t feeling up to making the trip into Salt Lake, they insisted that they come to my apartment, sensing I needed support but not knowing what had transpired that day. I sat cross-legged under my softest blanket on the couch across from them as they listened with concern written on their faces. “You can talk about this as often as you need to”, was their response as I hesitated to share the struggles they’ve heard so many times.

Asking for help isn’t easy for me. It’s especially difficult when I have to ask for support more than once on the same issue, but the other option is that I fight my battles alone. I’ve realized that my response to “How can I make it through these challenges? How can I endure this pain?” is “I can’t on my own.” In my darkest moments, it is always another human being that reminds me that I’m loved, that I can make it through another day, or that I’m doing a good job with what life has given me. It is always another person that gives me hope, or reminds me that I still have what matters most in life. It has been humbling to realize that I’m not as strong as I thought I was, that there are some challenges that I can’t take on alone. But now I know that I don’t have to fight my battles by myself as long as I’m willing to reach out and ask for help.

Faith: Everything I Don't Know

At the church I attend, there is an opportunity for the members of the congregation to stand up at the pulpit to share convictions and testimonies of faith faith. It is called a testimony meeting. 

I have been struggling with my faith in a significant way for the last several years, and each time this meeting arrives, I sit and listen, but usually find myself realizing that I “know” less and less. Within my faith culture, faithfulness and obedience are both highly prized and rewarded. We frequently tell stories of the most faithful, the most obedient, and the strongest, most dedicated saints. We also hear warnings of the teachings of the world, or the dangers of questioning one’s faith. If these messages aren’t explicitly stated, they are strongly implied. But, you know, I understand why this happens in some faith cultures. Painting a picture of faith in only black and white, and good and bad eliminates uncertainly, which is a feeling that we all try to avoid. It gives us the idea that there are solutions and answers to the struggles and difficulties we face. Ultimately, we turn faith into something it is not. We turn it into something certain.

This is a topic that I have wanted to write about for a long time, and yesterday, I sat at that pulpit in front of the whole congregation, and told them everything I didn’t know about my faith. 

The new year always brings with it the sense of a new beginning and an opportunity to change, so naturally I have been thinking about what I want to change in 2017. “Courage” is a word that has defined my journey, not because it is an attribute I possess in abundance, but because every step I take seems to require more of it. According to researcher Brené Brown, The latin root of courage is “cor”, meaning heart. The word “courage” originally meant to tell one’s story by speaking all one’s heart. Essentially, it means to live and practice authenticity.

As I sat in front of the congregation, I told them that courage for me meant saying, “I don’t know” when it came to my faith. My whole life I have believed that faith is knowing something. There is a song that the children sing that states, “Faith is knowing the sun will rise, lighting each new day”. It’s a beautiful song. One of the hardest moments of my life was the moment I realized that faith is not knowing the sun will rise, it is believing the sun will rise. Faith is a choice, and is, by definition, not knowing.

This faith transition was painful because my life suddenly became filled with uncertainty. At first, this transition felt like an absolute crisis, an existential meltdown. At moments, I felt great fear and even despair as I courageously said to myself, “I don’t know”. This was during the early stages of my spinal cord injury when questioning my faith felt like a death threat to the last thing I had to hold on to: hope. Hope for a better outcome, hope for a miracle, hope that there is a life without pain. I spent hours consulting with friends, mentors, and wise therapists about the complexity of the realizations I was having. I counted on their strength for a long time.

As time marched along, hope crept back into my life and I found a form of spiritual faith and divine connection that currently supports me (by “faith”, I literally mean faith, as opposed to religion). I’ve slowly come to realize the strength and utility this type of faith has brought into my life. I now see life experiences in shades and hues of gray, and rarely in blacks and whites. This has made such a realistic space for a kind of diversity and experience that my past faith didn’t have room for. This kind of faith has made me far more compassionate, authentic, and open to the differences of others.

Yesterday in church I expressed that I think that church is for people like me, people who question, people who don’t always know what/if they believe. My story is as real as the story of those who have never questioned. There is room at the table for all of us, hopefully without shame or exclusion. This is what Christ taught, and it is how he lived his life.

I have a lot to figure out and the list of things I know is getting shorter and shorter. But for now, this is my testimony: I know that we are here to connect to each other, and bear each other’s burdens. I know that we need to belong and feel loved in order to thrive. I know that I am happiest when I am living courageously and owning my story, even though it’s hard and even when I wish it were different. And that’s about it for now. It’s not terribly religious, and that’s okay.  I’m owning that.

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.

Swimming Upstream

I'm sitting in my hotel room this morning reflecting on the experiences I've had over the last week. I've been in Bismarck, ND since Monday for the Can-Am Open, an IPC (international Paralympic committee) swim meet. IPC meets are always valuable learning experiences for me on many different fronts, and this meet was no different. I came to Bismarck not knowing how well I would perform, but knowing that I had certainly increased my training time and efforts since the last meet in California (which I never wrote about). In fact, I was worried that I may have flown all the way out here only to drop very small amounts of time off of my races.

I am grateful to report that this week was certainly not a waste! I dropped major amounts of time in all my events, and in my more competitive race, the 50 backstroke, I came much closer to meeting a MQS (minimum qualifying standard). A MQS is a time that must be met in order to compete in the Paralympic games. However, this time is a minimum standard, and by no means guarantees that one will actually make it to the games. After this weekend, I'm confident I'll make the MQS before trials in June, and hopefully drop my time even lower to have a more competitive world ranking.

For many of the athletes here, these meets might simply represent another opportunity to compete in a long-course pool and get another time. That is, after all, what swimming is for most swimmers... but for me, these meets represent indescribable life changes, and a bitter sweet combination of loss, resilience and opportunity. I sat on the pool deck yesterday, observing the meet and thinking about how I came to be here. I thought about the last two hellishly difficult years of recovery and grief. I reflected on the countless God-sent people in my life that have helped me through such a trying time. I remembered the half-dozen times I thought I couldn't stomach getting back into the water because of the emotional turmoil it caused me, always forcing me to remember what I had not too long ago.

Since my injury, swimming has not been about beating the guy in lane four, it's been about beating Carson. Swimming has come to represent life, and my ability (or lack of ability) to look it in the face and refuse to be defeated. Swimming is harder now, and to be honest, I don't swim because it brings me joy to get in the water. As terrible as it might sound, I swim because it's hard and because I don't want to. Of course, I'm competitive by nature and enjoy winning, and I certainly hope it becomes a joy... but when I swim, I'm proving to myself that I'm not giving up and as dramatic as it sounds, it's kind of a representation of how I want to approach life. If I can keep swimming, I can do anything else. Swimming is the easy part, it's what it represents that haunts me every time I drop into the water out of my chair.

Because swimming represents a journey that is so deep and meaningful to me, it causes me to reflect on myself as a whole. I always come away from a meet with a clearer vision of what I want to change about my character. I'm reminded that life is about people, and how we treat others. At this swim meet, I was befriended by a few very kind individuals who made my experience a positive one. I want to be that way. I want to remember what is important and what is not. You know those moments when you realize you are not who you wish you were? And I don't mean in a self-deprecating way, but rather in a constructive way. Well, I had a few of those moments at this meet. It's so much easier to be whatever our circumstances make us and just flow with the current, wherever it goes. Swimming against the current of life to become what we want is the harder path (pun intended). I am banking on it being worth it.

Grieving continues to be an ever-present part of my life, both in the pool and out... and when I think I've turned a corner or moved past something, I'm reminded that I'm a passenger on the grief train, whose conductor I am not. Perhaps it's the grief that drives me to write about pain instead of flip turns after swim meets, but right now, that's where the train is taking me. This is still where I am on my journey, still missing what is no longer available to me. And while loss is a painful emotion or experience, I'm realizing that the associated grief is not the enemy of happiness. Some days I long deeply for the pain-free life I knew before breaking my neck, but can simultaneously feel tremendous gratitude for my friends and family and consequently be filled with a certain happiness. It's as if I feel it all at once, the happiness, the longing, the love, the loss... such a wide range of emotion is the human experience, and I enjoy it (except when all the crappy emotions team up at the same time).

I felt this wide range of emotions throughout this week, including some very positive ones. The last Can-Ams in Toronto was my first big IPC meet. I went and competed, learned a lot, and made a few good friends. At the end of the meet, I was given a medal by a lovely young woman who encouraged me to keep swimming. 

Toronto (I think I posted this pic in another post... but it's a favorite)

Bismarck (Apparently, I wear this jacket when I get medals)

This week, I earned my own medal by winning the S4 50 meter backstroke. I hope this is one of many future medals, but it represents so much more than just a faster swim. It helps me feel like I am succeeding in life in some way, despite my inadequacies and shortcomings. I also readily recognize that I have the best support system a person could ask for, and that I couldn't be doing any of this without the help of many. I thank those who have stuck with me when I haven't deserved it.

I have a lot of work ahead of me and I'm prepared for it! And so the journey continues forward into a very unknown, uncertain future. But I feel like I felt when I was lying in that foam pit just seconds after breaking... "I have love in my life. I have friends and family that love me. Nothing else matters."

Owning A Few Things

I was in my living room one afternoon a few weeks ago, sitting across from one of my piano students. I enjoy teaching this particular student very much. He challenges my creativity, he learns very differently than any other student I've had, and he makes me laugh in every single lesson. This student, Conner, has Down syndrome.

I admit I was intimidated when I first took Conner as a student. I didn't know what to expect, and I didn't know if I had the creativity or ingenuity to teach someone with a learning disability. In our first lesson, I realized that Conner couldn't discern a beat in music. I worked almost that whole first lesson on hearing the beat and clapping together to songs with slow tempos... he couldn't do it and I wondered how long he would want to continue lessons. As weeks went on and we both kept working, Conner began to learn to clap with me, and he is now able to play a beautiful Mary Had a Little Lamb on the black keys. He practices everyday and has earned whatever improvements he has made. I love teaching Conner.

But I don't just love teaching Conner because of his unique situation, I also enjoy teaching him because of his unique personality that inevitably keeps me grinning in lessons. In one very special lesson, Conner pointed out something that made me stop and think about an important part of my self-perception.

I was sitting on the couch in the middle of the lesson as I listened to him review a few songs we had learned. I prepared to transfer into my chair so I could instruct at the piano, and I watched him observe me as I moved my legs manually, using my hands. In past lessons, Conner has shown concern for my recovery and said things like, "All better?" or, "Legs better?"as he reaches out to touch my legs. But on this particular afternoon he made a different comment. As I finally got into my chair and rolled up to the piano he muttered to either himself or me, "...Handicapped."

I died. Because it's already too difficult to keep attention on the piano, I try not to reinforce any behavior that would detract from that focus, but I definitely did not succeed this time. I laughed out loud, and before I could say anything his aid (who regularly attends lessons with him) said, "Hey Conner, so are you!" We all laughed even harder, including Conner. Then I turned to him and said, "That's right, Conner. We are both handicapped and that's why we make such a good team." Conner calls things for what they are, with only very little filtering.

My mission since injury has been to prove to myself and the world that I won't be deterred in any of my goals, aspirations, or dreams. In a way, I've tried to prove to myself that I don't have limitations at all. I even sometimes find myself daydreaming about horrible situations where, for example, I'm escaping out of a burning building without a wheelchair (who knows why I would be without it), and try and convince to myself that I could still make it. I have been unwilling to say to myself, "I, Carson Tueller, have some limitations".

But why is that so hard to say? Of course it's true, I know that, I've known it all along. But why has it killed me to look it in the eyes, even in my own head? I think it's because admitting that would somehow solidify that this unsavory reality is just that. My reality. My life. And it is unsavory (well, parts).

What I am beginning to learn is that I can go on undeterred in all my same goals, aspirations and dreams and simultaneously accept that I am limited in some ways, or that I have to go about achieving those things by different means. That word "acceptance" is a tricky one. I don't think it's so much about accepting that the reality exists, because I could have told you I had limitations a year ago (duh). It's about finding peace in our imperfect realities.

Let me share a small victory, and I mean small. Shortly after having that humorous experience with Conner, I was at the gym by myself. Whenever I go to the gym alone I understand that I'm taking a risk since I have to find, uh, creative ways of working out. Some of these methods include transferring onto workout equipment. On this particular day I was attempting to get onto a shoulder press machine, which has a seat at a pretty intense incline. I was transferred but one of my legs slipped off of one side and ultimately ended up on the ground. Normally this wouldn't be such an issue because I could just scoot over to my chair and transfer up, but one of my leg was kind of twisted around the base of the machine making it impossible for me to adjust myself in any inconspicuous way. Oh, and I had basically de-pantsed myself during this ordeal, which definitely made me feel better about the situation.

Only moments after this, I was approached (while I'm pretzeled on the floor around this machine, with my undies showing) by a fellow lifter who offered to help me up. He moved my chair and I instructed him to move my legs here and there until I was freed. I thanked him, he offered his apologies for not knowing how to help better, and we went on working out. I was grateful for any help at all.

In the past, this kind of experience would have been supremely humiliating to me, especially because this helpful guy wasn't terribly bad looking... But for some reason, and definitely with the help of Conner, I've started owning a few things about my situation. I feel less embarrassed when I have to accept help in simple ways, even as a grown adult. I am beginning to own the chair and sometimes I don't even care when people see my skinny legs. I feel a deeper sense of self that is unattached to my level of able-bodiedness. Am I independent? Yes... but do I need help with some things (like stairs)? Of course. And that's getting to be more okay than it was in the past.

It has taken almost two years to even begin addressing my internalized stigma of having a disability, or to not care about the many, ever-present stares. It's taken a while for me to own my limitations, but it's starting to happen. Recognizing distasteful or unwanted aspects of each of our realities is difficult. I know I'm not the only one whose life is turning out different than imagined. But despite our dissimilar life experiences, I believe the process of finding peace is universal. It is the first step out of denial that we start to see reality for what it is, and not just what we wish it was. For me, peace has only ever come after weathering a storm I really never believed I would sail out of. Don't get me wrong, the storm still rages, but I'm simply grateful for these moments when I sense a spark of hope for life, or feel a fleeting feeling of peace. You know, like when a sunbeam breaks through the dark. It's that kind of hope that makes me feel (and just almost believe) that one day I could be deeply happy again.

Useless Comparisons

We all compare, don’t we? We do it all the time, and I’m certain I’m not alone in seeing how I measure up to those around me. There is nothing inherently harmful about comparing, but I recently became aware of some comparisons I’m making that are taking a toll on the way I view myself.

Not long ago, I had some friends and family very close to me experience some of the most beautiful experiences life has to offer. There were several events of this nature that happened back to back over the course of a few weeks. I am overjoyed at the happiness these individuals have found! After all, I love them dearly. Unfortunately, I recognize that sometimes as I witness this happiness, I become aware of the contrast between their lived experience and my own, and usually find theirs to be more appealing. I feel the desire to find what they have found and achieve what they have achieved. It is not a feeling of malicious jealousy; I feel absolutely no ill will towards these people, I just long for the same happiness. As I feel this emptiness while viewing the situation, I start making useless comparisons.

Now, this process of comparing has been more intense because of recent events, but it’s usually something simple that begins it. For example, I remember last fall watching my brothers and sisters go back to school, realizing my friends and peers would begin their final semesters before graduating. I felt sadness knowing how behind I would be in my academic career. I felt pathetic about what I was doing compared to what they were accomplishing. Many of those I graduated high school with were getting married (or already were), having children, getting degrees, going to graduate school, starting their careers, etc., and what was I doing? I was hoping bowel care would go well that morning, I was going to occupational therapy to get the smallest joint of my smallest right hand finger to move a bit more so I could use my hand better, and I was going to physical therapy five days a week to improve my transfers.

Needless to say, when I compared point to point, it was a pretty pathetic looking comparison. Yes, I recognize that the things I was doing were and are important, but for me, success looked like a job, perfect grades, and a family. You know, the life with the white picket fence, or at least something that resembled it.

Well, this very thing happened to me in excess last week. I was comparing and in doing so, felt utterly pitiful. I was with my mom on one occasion when I voiced some of these feelings. She pointed out all the positive things she thought I was accomplishing, but I dismissed her points and tried to prove to her why my life has been a sad attempt at success and happiness. She didn’t budge. In fact, she said, “It doesn’t matter what you say, I know who you are”, or something very close to that. We have had these discussions before, but for some reason this one made me stop to question my habit of comparing.

During self-reflection I noticed that I have a preconceived idea of what success looks like. Like I said before, it was marriage, school, family, and financial security. It was an idea that was taught to me by my family, friends, religious culture, and society. I was essentially given a template of success and was told to follow the instructions until my life matched the template. For some people, this works out and they eventually have a life that resembles their idea of success (which is great!). But I notice that for many, it is not uncommon for their lives to take unexpected turns until their life fails to match up with what their vision of success is. For example, in all my plans growing up, I didn’t anticipate having a spinal cord injury. So, as my life progresses, I have serious barriers to achieving what my peers are on the same timeline, or in the same way. But I find that this is my problem: I make NO adjustments in my definition of success. I am still comparing apples to apples when it would be more accurate to compare not just apples to oranges, but apples to elephants. My life looks so unbelievably different that what the template says it should look like. This isn’t just the case with my SCI either, I have had detours in all my relationship goals and future family plans due to my sexual orientation. Basically, I am everything I didn't plan on being, and doing none what of what I intended to do.

A teeny tiny light bulb turned on that day with my mom. I have choices. I can choose to compare or not. I can also choose my definition of “success”. I really believe that we have the option of assigning the definition of “success” to new things as we go through life. As we determine what we want, and what is realistically available to us, we have the choice to redefine success for ourselves. This is a necessary skill to develop if we want to be happy despite being unable to attain our original dreams. I actually think this is a key to finding peace.

I am determined to find happiness, and I cannot be happy if I continue to compare apples to apples. I feel a little bit stupid even writing these words because I have only just started the process of avoiding comparisons, and I am realizing that it is going to be a long road to adjust the expectations I have in my life. I have to redefine success to put it within my reach. Okay, so maybe I won’t have a degree until a few years. Yeah, maybe I won’t be getting married in the next year, but I have some great opportunities that I am neglecting to notice. I want to choose to see them.

I understand that this will be a hard process for me. Changing ones dreams and hopes is not an easy thing, and doesn’t happen overnight… but this is the process of loss and acceptance. Someone once described grief as the process of replacing lost hopes and dreams with new ones. I think we all have to do this to one degree or another throughout our lives, because so rarely does life ever happen just the way we want it to.

My comparisons only create greater distance between those I compare myself against. It fosters jealousy and emptiness. I hope that I can create a template for success just for Carson, one that is attainable, one that allows me to focus my energy on what I can do, and not on what I can’t. I hope to be more productive, more understanding, and a happier, healthier me.

The Grief Train

How much can one heart take?

This is a question that has entered my mind often as I've experienced loss in my life. How much more of this can I endure? How can I possibly keep going in this circumstance? These questions float around my head frequently. 

Grief is a runaway train and I am a passenger on that train. I am only along for the ride, wondering when it will slow down, wondering when it will come to a stop so I can finally step off and direct my life in a productive direction. In the past I believed that I could control the train, that I was the conductor. I tried to reason myself through the grief, attempting to control which days were good and which were bad, trying to predict when the train would nearly fall off the tracks or when it would take a sharp turn. I wanted control.

I realized many months ago, to my dismay, that I was actually a passenger, and that the only thing that was within my power to do was to submit myself to the process. This understanding has allowed me to be patient and kind with myself. It has allowed me to forgive myself for going over it all again. Today I am going over it, recounting it, and repeating it all over again. I'm a passenger and that's okay.

Today is a day where the train feels out of control, twisting and turning, inducing vertigo in every aspect of my life. I asked myself through tears to my family today, "How much can one heart take?" When I was injured, my dear family in mourning wept together on the floor of my living room and slept side by side all night long. They came together in their collective loss, they comforted each other. Today, slumped in my chair, I scooted to the edge, transferred onto that same living room floor, and cried. All my sibling in tears, again grieving our collective loss, came to my side and cried with me. Heaped all over me, I was reminded that within the deepest grief is born the deepest love.

My family is altered by my accident. We are not the same as we used to be, for better or for worse... but one thing I feel is deeper connection, stronger commitment, and unbreakable loyalty to each other's wellbeing. As I felt their warm tears wet the shirt over my chest and arms, I felt guilt that I was the source of this tragedy, this sorrow. But I was again reminded, that this is the price of love. When we love in a way that puts another's happiness above our own, we take a great risk. We no longer face our trials alone, but take upon ourselves the sorrow of the loved one. This is a Christlike place to be. This is what God asks us to do. This is how we will survive whatever comes our way. The love of others has seemed to give me a literal strength, knowing another is also carrying my burden. Does that change the fact that I remain paralyzed? No. Does that fix the immediate problem, obviously not. But it does something immensely important. It provides healing to my broken soul.

Yesterday I sat in the presence of a family whose mother is fighting a brutal cancer. As I have followed the progress of this incredible woman who has been in and out of hospitals for years, the question arose. How much can her heart take? How much can the hearts of her dear husband and children take? As she stood up yesterday to address an audience to support a fundraiser for her, I saw unbelievable strength. A strength that confuses me, a strength I do not know, but certainly envy. She spoke, and as she spoke I watched her husband and felt his undying love for her. I realized at that moment that perhaps one heart really cannot take all that life can offer in it's hellish ways. But many hearts linked in sacrificial love can form a bond that is simply impervious to life's challenges. It astounds me. This is how we survive and (hopefully) come to thrive through our setbacks and losses.

I have had hundreds and thousands take my burden and place it on their own backs. This woman is one of them who told me that she continues to pray for me with her family. That gave me strength. We value independence so much in our society, but I don't believe that is God's way. I believe that interdependence is the quality he wants us to develop through life. That was Christ's mission and life, and that is how I want to be. 

The grief has definitely eased as I have adapted, and I'm confident that one day (I pray soon), I'll step off and move on. It's only been a year and a half after all... but as I continue to bounce around the bumpy ride of this train, may I humbly thank every prayer, every thought, and every act of kindness. I hope that beautiful horizons await us after all is said and done, and that maybe this crazy runaway will have taken us farther in life than some smooth riding, little choo-choo train.