This blog was originally dedicated to update my friends and family on the details of my recovery from a traumatic spinal cord injury (SCI). I later began writing myself and now use this blog as a means of recording my emotional, physical, and spiritual healing process. I adopted "defy the odds" as my motto, since the odds of beating SCI seemed overwhelming. I use that motto today to define my ever-present quest for peace, happiness and purpose.

Wednesday, May 4, 2016

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.

Sunday, February 28, 2016

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.

Sunday, December 13, 2015

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."

Wednesday, November 18, 2015

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.

Sunday, August 23, 2015

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.

Sunday, July 19, 2015

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. 

Monday, May 25, 2015

The Power Of Pain

When we go through difficulties, we often hear some inspiring ideas like these: "What doesn't kill you makes you stronger", "God never gives you something you can't handle","Storms make trees take deeper roots", etc. In tough situations and especially in the case of my SCI, these quotes initially brought hope into my dark world. However, as I continued to struggle without much change in my condition, these ideas became harder and harder to believe. In fact, I began to actually believe the opposite. When someone would say, "Things will get better, you won't always feel this way", I often thought, "You can't promise that, things may very well get worse and worse". Of course, I appreciated the well-intentioned words of these people, but their words brought me no hope. Contrary to what these quotes promised, I felt as though my trials were destroying me. I felt hardened, bitter, and hopeless more than I felt any positive transformation of character. I felt anxiety that I might be ruined, that the Carson I knew would never return.

Because I did not improve emotionally or otherwise for a very long time, I felt little hope for the future, which was exactly what I needed to get me through. During all this time, my pain taught me a lot and this blog is a record of the lessons I was learning. Some of these lessons were about grief and loss, some about human value, and many were about love. Yet, all that time I was learning I still felt like I was slowly being corrupted by that same pain.

As a senior in high school, I went with a leadership class on a trip to Washington D.C.. We visited many of the memorials and also spent a day in the Holocaust Museum, which had a great impact on me. I remember feeling sad and wondered how humans could perform such atrocities. Last week I visited that museum again, this time with six more years of life under my belt, three of which have been lived in deep grief and suffering. My experience at the museum was a very different one. This time as I went to the museum I felt deeper pain, my heart was heavy, and in more than one moment my eyes were filled with tears. I have not suffered to the extent that the victims of the Holocaust did, but I have suffered many times in a way that his driven me to sincerely wish to die. I have become acquainted with grief at a level that my eighteen year old self could not have fathomed.

The most important part of this visit to the Holocaust Museum was what has lasted since. Instead of feeling only sadness, I feel responsibility. I feel responsible to become a person that fights the evils that begin wars and holocausts. That feeling of duty has remained with me ever since that day. As I toured the museum and realized the depth of feeling I was experiencing, I asked myself what the difference was between the two visits. The answer I found was in depth of empathy that was absent before, an empathy that only comes from living through your own hell.

Later during my trip to D.C. I visited the Lincoln Memorial. As I sat at the feet of the giant statue of the man that brought America through it's most fatal war, I wondered how someone becomes like that. I wondered how certain individuals are brought to a place of such potential to influence the world for good, and wondered how I can become that way. I've always thought in extremes and in world-scale ideas. If there is a problem in the world, I often feel a deep responsibility to fix it. I don't wonder who will fix it or how it will be done, I wonder what I will do to solve it. I had these thoughts at the Holocaust Museum. How will I live so that this never happens again? Always trailing these thoughts of passion and responsibility are the thoughts that challenge the power of one person. I tell myself, "You are unrealistic" or "You are one little person who has no grasp on the world, what could you do?" However, regardless of the doubt that follows, the feeling of duty remains.

There was an interesting mix of emotions running through me the majority of the time touring the National Mall and other sights. There was this constant passion to change myself and the world around me, mixed with a grief at what I am still facing in life. The trip was a physically painful one for me. Perpetual fatigue, bladder and bowel issues, ever-burning nerve pain...  I just wanted to enjoy the trip like everyone else, I wanted to enjoy the feeling of wearing shorts. I didn't want to worry about how/if I could get in the building or where the nearest elevator was.

The trip was overall a success, and the flight home in the cramped airplane brought opportunity to think about what I'd learned and felt. I plugged in my headphones and listened to some TED talks. I listened to the mother of the man who started the ALS ice bucket challenge. The mother spoke passionately of her son who is now so paralyzed that he can't speak. And her message? The power of the individual. The influence of the one.

As I heard the voice of that mother echoing through my head, a moving part of a song I was listening to came up and I almost felt chills. Side note: A strange side effect of my SCI is that I don't feel chills when I listen to music, which is actually a great loss to me. I feel my body try, but it ends up being a strange shudder. This was the last straw. I broke into tears as this seemed like the harshest moment to remind me of my reality. With tears streaming down my face, I struggled to relieve the ever present neck and nerve pain through my body. I worked in my cramped airplane space to push my body up with one arm (I had a sprained left wrist from transferring). At this moment I experienced an epiphany and a clarity of thought.

I realized something very significant. The words I heard were, "My suffering fuels my passion". With increased emotion I realized that because I continually suffer, I am continually impassioned about life, love, and the plight of the human race. For perhaps the first time, I saw utility in my pain, both emotional and physical. My suffering never lets me sit in complacency, which means I am filled with deep feelings, for better or for worse. This does not mean that I am grateful for my situation. In fact, I despise it. I constantly long for and weep for an easier life. However, I write best, learn the most, and feel deepest when I am suffering. I have a constant source of fuel for passion; it's pain. Perhaps that will drive my love and embolden me most in my quest to change the world.

This changed my perception of pain from being something totally destructive to something terrible, yes, but possibly useful. I'm still not convinced that what I'm going through will make me stronger, but I do see the power of my pain. Though I don't have a choice regarding this pain, if I were given the choice to either live a pain free life without a depth of passion, or live with greater passion and vision, but with a painful grimace on my face, I would think twice before choosing a pain free life. I have wondered in (ridiculous) hypotheticals, "What if it were up to me to save the world, but had to be in this condition to do it. How could I possibly justify choosing my own comfort in place of alleviating many others of their own agony?

I am reconsidering my approach to the ideas at the beginning of this post. Maybe we are stronger through suffering, but maybe stronger doesn't mean "fixed" or "better". Maybe stronger doesn't even mean we don't feel pain still.  Maybe we are stronger not after our tears, but in our tears and as we weep... and maybe we aren't stronger after the suffering, but during the suffering.

Perhaps all this suffering is really an art. The art of conversion, converting the pain of tragedy into a power source of passion, healing, and deep, deep love.

Wednesday, April 8, 2015

A Miracle In Toronto

Two weeks ago I stepped off an airplane after a week-long trip to Toronto, Canada, where I went to compete in the CanAm Swimming Championships. This was my first international swim meet and I had no idea what to expect from an athletic perspective as well as an emotional one. The meet was held at the new Toronto PanAm Sports Centre, which has recently been built in preparation for the PanAms later this year. This swim meet turned out to be a fantastic experience, but I did't think it would turn out that way. I have a confession to make. I was quite positive that this would be the last swimming event that I ever participated in. I was ready to quit.

Many of you already know from past posts that swimming has been difficult since having an SCI. While it would be a lie to say that I've had no good swimming experiences over the last year, the truth is that most of them have turned me toward the idea that swimming is something I will no longer enjoy... which made me very sad. So, I came to the CanAms sincerely believing that I would be done, and to be honest, I was relieved at the thought. I have other interests (primarily music) that I am heavily involved in and thought I would find most of my emotional fulfillment through that aspect of life. I didn't feel like a "quitter" at the prospect of not swimming any longer, but thought that while life is already so hard for me all by itself, I should be careful to do things that edify my emotionally. Just recently I was the keynote speaker at a music festival, and was asked to spend some of my time on my journey with swimming after an SCI. I told the audience that no matter how long it took, I was going to keep trying to swim until it was something that I liked, that I wasn't going to give up. As I looked back (before the meet) I thought, "Carson, you idiot, you've made a promise you might not be able to keep!" I'm glad it all worked out differently than I had anticipated.

I took off to the airport on a Wednesday with my mom, who was my travel buddy, and prepared for our exciting adventure. We had a quick layover in O'Hare, Chicago that caught us off guard since our flight was delayed about 30 minutes. When we got off the plane they informed us that the shuttles were not wheelchair accessible, which meant that we were about to take a long jog around a HUGE airport, with the help of an escort. Fortunately for me, I got a nice push the whole way while I had a carry-on on my lap. My poor mother had to run the whole way with luggage, but we at least got a good laugh out of it after we barely made our flight... well, at least I got a good laugh. We refer to the experience as the "O'Hare hustle".

Anyway, we had no issues once aboard the Toronto-bound aircraft. We made it to Canada and through customs without any problems and made it to our hotel. We were happy to arrive at the right destination, all in one piece, and with my wheelchair still intact. We rented a car, and took off to the hotel, which was only a nice 7 minutes from the Toronto PanAm Sports Centre. We got into our room we positively crashed, I'm not sure we even had the chance to eat before going to bed. We were exhausted and my neck was destroyed. You know, even before I had a SCI, I never had enough leg room on the plane and my butt always went numb. Now that I can't shift around as easily, I'm  paranoid that I'm getting a numb butt and that I'm going to develop a pressure sore (my worst fear, Google it and you'll find out why). I also don't have the core to support my already overused neck, so it's very painful after the flights. Anyway, I was happy to lay down.

The next day, Thursday, was the day to check in, register, attend a technical meeting for coaches and staff, and explore the amazing venue. Since I didn't have a coach that came with me, my mom and I both planned on attending the meeting and hoped we might gain some insight as to how we could successfully navigate an international swim meet. I think we were both a little bit apprehensive about what was to come the next few days, since neither of us had any experience with this kind of meet. We went to Subway for lunch and there met a few other swimmers and their coaches. We quickly became friends and I realized that I would be dealing with some very kind, helpful people. One coach in particular went out of his way to help me the rest of the time I spent in Toronto. He was truly a God-send and helped us to steer ourselves through this new Paralympic world.

Toronto PanAm Sports Centre
Throughout that first day and the next, I slowly became acquainted with some incredible individuals who generously reached out to me. That next morning when I would swim the 50 m backstroke, I got the first full taste of the crowd I belonged to. No one fit a mold, and no one's disability seemed identical to another's. There were several in wheelchairs (for various reasons), many amputees, many who were born with their disability, and others were blind. As I sat in my tank-top and suit, perhaps for the first time, I wasn't concerned about my atrophied legs, or lack of abs. It was a good feeling. I got into the pool for warm-ups and prepared for prelims. But before I actually get into the how-I-did-swimming part, I have another confession to make. Because swimming has been so hard up until this point, I prepared very little for this meet. I swam only a handful of times before going and was riding off of old swimming abilities that existed before my SCI. So that being the case, I didn't have high expectations for getting faster times and such.

Day one at the pool
I swam relatively well in the prelims for what I usually swim, and went about a second faster. That evening I swam again in finals. I realized (with the help of a coach) that I lose much of my technique when I get into a race, and end up dying hard on the second half. I tried to maintain my stroke better in finals, and swam far more efficiently with more to give in the end, though I swam a second slower. It will take time for me to learn to pace myself better. I watched the other swimmers and felt awe at the incredible adaptability of human-beings, as well as admiration for the evident resilience these individuals demonstrated.

On Saturday, I didn't end up having a race, so my mom and I looked for some places to visit in Toronto. We found ourselves at Scarborough Bluffs for the afternoon. We drove down around some massive cliffs that stood on the edge of a beautiful, blue Lake Ontario. It was blustery, cold, and very muddy, but nevertheless very beautiful. Every so often, in small, serene moments like that one, I realize that what I am experiencing is a result of my SCI. This happened more than once in Toronto. It's a strange bitter-sweet feeling where I wonder what other positive opportunities I might be afforded thanks to a traumatic injury. Regardless of what lay in the future, I was happy to be there enjoying the clear blue skies with my mother.

While we definitely took more flattering pictures than this one,
this on is my favorite. It was windy.
The last day of the competition arrived and I prepared to swim the 50 m breaststroke. Breaststroke kind of scares me because in the past, I have struggled to make it to the other side of the pool. My wee little forearms start locking up, I lose my horizontal position in the water and I begin to go from swimming across the pool to bobbing up and down towards the wall. It kind of feels like a survival mechanism to keep myself from drowning. At one meet I was struck with fear when I realized I had half a pool to swim and thought, "What if I actually need to be rescued because I completely freeze up?"  So, I was a little worried of locking up...

I'm happy to report that I did not bob too badly, and that I made it safely to the opposite end of the pool with a fastest time by a second. My breaststroke time is much slower than my backstroke time, relatively speaking, but I'm trying to see if I can get it up to something more reasonable than what it currently is (which is unacceptable). I sat around for a while while I waited for finals to begin and went over to the table where some of the US Paralympic coaches, staff, and team members were. I was introduced to some new friends and talked with the coach of the US Paralympic team. He was very personable and let me ask him my many, many questions. As I met more and more swimmers and coaches, the more I started becoming interested in being a part of this group, and a part of the US team.
Conversations with USA Paralympic team coach
Finals for breaststroke came and I went in to the warm-up pool. Someone had mentioned having a more efficient pull in breaststroke, so I thought that I would try to engage my lats and the whole scapular-protraction thing to see if I could get it better. It's probably not a wise thing to try something new in finals, but since I didn't feel like I knew what I was doing to begin with, I had nothing to lose. I could always go back to bobbing in a worst-case scenario. So, I tried it and while I still locked up and swam like a jellyfish, I did so five seconds faster. It was a great way to end the meet and I was actually pleased.
The PanAm mascot and myself
The meet came to a close and I started feeling a bit sad that it was time to say goodbye to so many fantastic people. To this point, I haven't written about how throughout this entire experience, I felt some subtle but significant changes within me. Since my injury, I have spent a lot of time and energy trying to convince myself that I am still whole and valuable as a man with a disability. But despite my best efforts to tell myself that I am not a compromised human, and despite all of the previous posts I have written about self-worth, I have seemed incapable of internalizing those feelings, still feeling broken to one degree or another. As time has moved forward since my injury, I've been concerned that I may never feel whole again, and wondered if I would ever cross that bridge into a place of inner peace.

As I sat on the pool deck and looked around at the other athletes, something happened within me. I saw humanity. I saw beauty. I don't know exactly when it occurred, but everything that I have been trying to tell myself about my own worth finally sank in. I felt the value of the individuals at this meet, and felt my own value not only as an athlete, but as a human being. I was amazed at certain moments at the courage and strength I saw in these swimmers. I thought that for many of us, we work through all sorts of other challenges that can seem overwhelming. For example, even working through social stigma alone can be exhausting. Yet, in the face of all other challenges many of these athletes face, they make it to the pool everyday to have a rigorous workout, and then travel internationally to race. I observed with deep respect what these people were accomplishing. I began to feel honored that I belonged to a group that exemplified such admirable characteristics. Characteristics that many work for a lifetime to acquire.

Previous to this event, I have been embarrassed that I belonged to a group of people with"disabilities" and have wanted to distance myself in an effort to feel normal or something. At this meet, I felt proud and am proud to be a part of a group that consistently demonstrates courage in the face of terrible odds, and consistently defies those odds in a literal way. These individuals seek to redefine the perspective that society has on the"disabled".

These positive feelings slowly dissolved the internal stigma that I'd developed within myself and replaced it with some love of self. I developed a different measuring stick for determining value than the one I used previously. I can't express my gratitude for that experience... it was truly a healing one. Our society values perfect beauty, talent, intellect, achievement, etc... but often neglects the value of the quality of the soul and character. Of the many lesson my spinal cord injury has taught me, learning that nothing is as valuable as the development of the heart has been among the most important.

So, I came away from that meet with a renewed perspective on myself and turned a corner that I've been longing to turn. I've been to the pool many times since this meet and I am no longer embarrassed, or as self-conscious. Before, I had a hard time going to the gym and letting everyone watch my obvious struggle as I fall over, drop weights, or constantly lean over to catch my blood pressure as I do a workout. I have a greater vision now, and more meaningful goals help me maintain a healthy perspective, despite all the stares and comments (though usually well-intentioned). As I go about working toward my goals, I now have a greater context within which I can find support and commonality.

On that last night after I had left the pool, I went out into the freezing cold and found it had began to snow. As I approached my car, I heard someone call my name and turned around to see who it was. I could see two cute girls I had met at the meet (both have competed in past Paralympic games) coming toward me through the snow and wind. With smiles on their faces, one of the girls pulled out her gold CanAm medal she had won at the meet and said, "I want you to have this!". Laughing and a bit confused, I refused, telling her that I wasn't about to go home with her medal. She continued to explain that this was a tradition for her, that when she found someone that she believed needed to keep swimming and had something to give, she would give that swimmer her medal to say, "Keep swimming!". I didn't know what to say... I thanked her as genuinely as I could, and put the medal around me neck, grinning. There could have been no ending more touching than that to end an already marvelous weekend.

(If you look closely, you can see the medal around my neck)
My fire has been relit and I'm moving forward to keep getting faster and stronger in the pool. I'm still not sure what to expect for future meets, but I'm going to go for it. If nothing else I look forward to continued contact with such wonderful people. The next meet I hope to get to is coming up in June, and I've got to really whip myself into shape! Had you told me one month ago that this is how I would feel about swimming and myself today, I wouldn't have believed you. It all seems a bit miraculous to me.

Saturday, February 7, 2015

Inspiration In Florida

At this point in my recovery, my firsts are becoming less frequent but two weeks ago I accomplished another. I completed my first long distance trip without a family member. As with mosts firsts, it was a difficult experience, but an overall rewarding one. I traveled down to Fort Myers, Florida to speak at an Affirmation conference, a group for LGBT Mormons. As I have explained before, I save most of what I deals with LGBT issues for my other blog, but since this was a great milestone for my SCI, I wanted to keep it here.

When I was asked late last year if I would be the keynote speaker for this conference, I thought, "I have little credibility, I have no academic specialty, and I am only 24 years old! What do I really have to offer?!" I was told that the theme of the conference and my keynote address would be "Be Inspired, Be Inspiring", and began to formulate ideas for material that would help me cover forty-five minutes of speaking. I ran into some walls and found myself feeling frustrated that I had accepted with so little experience. I have given talks in church, speeches in high school, and had spoken to some youth groups, etc... but I hadn't traveled across the country to give those addresses, and the longest any of those other experiences had lasted was thirty minutes. What I'm saying is, I was a bit concerned.

I began to think about inspiration in general and put out a request for some help on Facebook and basically asked, "What inspires you?" I got a range of descriptions of what inspires people, ranging from mountains, to the universe, to influential individuals. I realized quickly as I talked with others that I needed to narrow down what kind of inspiring I would be talking on. I looked up a few definitions and found one that I liked the most.


verb (used with object)inspired, inspiring.

to fill with an animating, quickening, or exalting influence:
His courage inspired his followers.

So even though people are inspired by many difference things,  I chose to focus on people, since that was what seemed most practical. Be Inspiring. I made a list of influential individuals who have had an impact on the world, or who have accomplished magnificent things. Here's a small list. 

Mother Teresa: A catholic woman who dedicated her life to serving the poor and sick. Won the Nobel Peace Prize in 1979 and lived most of her life in India. Founded "Missionaries of Charity".

Martin Luther King: Won the Nobel Peace Prize in 1964, leader of the African-American Civil Rights Movement. Assassinated for his efforts. 

Michael Phelps: Olympic swimmer and most decorated athlete in olympic history. World record holder.

Abraham Lincoln: Led the United States through the Civil War, abolished slavery and was a great moral leader. Assassinated for his efforts during the Civil War.

Helen Keller: A blinddeaf woman who overcame her disabilities and became the first blinddeaf woman to receive a bachelor of arts degree. An author and activist. 

Wilma Rudolf: Contracted polio at age four, and suffered partial paralysis as a result. Recovered, but suffered from a twisted foot and leg for years later as a result. Received frequent treatment and later became a two-time olympic athlete, and was considered the fastest woman in the world during her time.

I got to this point and hit another wall, not knowing how to take my remarks into a practical arena. I obviously couldn't just tell everyone, "Okay, go out and do your best to make the most-inspirational list. Ready... go!" There was a practical application that I was searching for. It was then that I made a realization that altered the trajectory of my comments and vision. I realized that anyone could be giving a talk about inspirational people, but asked, "What do I have to give? I don't have official credentials, but I do have experience. What does Carson know personally?" I continued to consider the ways I have been inspired since having a SCI.

I have been inspired time after time by small and seemingly insignificant gestures of kindness and especially love. I realized that on the days when I really need to be "filled with an animating, quickening, or exalting influence", as the definition says, I don't usually look to the world-level inspirers. The individuals on the list above have proven that people can do and overcome great things, and inspire within me a vision of what I can become, should I demonstrate the same qualities. Though I am grateful for their influence, it is not to them that I look for support and inspiration when it really counts. I go to the inspirers of my everyday life. I look to my parents, siblings, and friends for that kind of day-to-day inspiration.

An experience that I have recounted a few times on this blog gave me insight, and was something that I felt that I could share that was unique to me. Humor me as I describe some of the experience again. From the minute I felt my neck break and realized that I couldn't get myself out of that foam pit, I had a million thoughts and images fly through my head; realizations of what an SCI could mean for my life. For the first thirty seconds I felt some despair, some angst over what I was experiencing, then I felt something that, to this day, I cannot describe adequately, nor can I decide where it came from... but there was a voice in my head that told me that I had love and because of that I was going to be okay. That idea did not only provide momentary comfort to me, but also served as foresight as to where I would derive my hope and happiness from during a hellish time. It would be from people. Every-day people. 

I have often said/thought that I wanted to make an imprint on the world in some constructive way. I want to be a world-changer, for the better. I used to believe that I needed to change every person in the world to change it, but now realize that I change it by changing just one person... by serving just one person. That was the message that I ended up giving to this group. We don't need to be world-level inspirers to do our part. We can do great things in our own circles of influence.

I'm not sure where this quote comes from, but it reads something like, "No single raindrop thinks itself responsible for the flood". It is more a quote about blame, but I think it can be read in the light of responsibility. We sometimes don't think our efforts can contribute greatly if we are not doing incredible things. I believe that each drop is indeed responsible for the flood, whatever the nature of that flood may be. We cannot go through our lives without affecting the life of another.

From my own life, I have many examples of humble supporters that have done great things for me, but one seems to stand out in the context of being an inspirational raindrop. When I was first injured, I experienced an outpouring of support and love which lasted for many many months and even continues today. This got me through hard moments. Hellish moments. There was one individual who told me in the hospital that she would send me an inspirational quote everyday. So, I began receiving texts while I was in the hospital. A message came almost every day, and if I didn't get a quote one day, I always got a makeup quote the next day. I have been amazed that, to the current date, I receive a thoughtful text from this person every day. There was one message that stood out to me in particular, because this young lady explained to me that she experienced some intense learning disabilities. I got the impression that she thought that these were somewhat limiting to her. I thought of the days where I have been angry and upset, and had suddenly received a messages a day that has been not only thoughtful but even relevant. Her learning disability certainly didn't change how effective her kindness was to me. This young lady is a great example to me of what simple acts of love can do. By reaching out to me she's not exhibiting any outstanding gifts or abilities (though I'm sure she has them), but is exhibiting great thoughtfulness. I greatly admire her consistency. She inspires me as a powerful raindrop in my life.

The above ideas on inspiration were the ones that I shared with this group. I am grateful that it went smoothly and that I felt passionate about the topic I was speaking on. I especially revere the demographic I was speaking to in particular for their desire to be authentic in every aspect of their lives. They inspire me to do the same. 

I continue to struggle, and I always pray that the day will come when I feel a bit more comfortable in my "new" skin. I'm not sure what the future holds and I'm not certain that will ever happen... My experience in Florida will be one I can draw from in the future, seeing as it was both very rewarding and very difficult. Boy, did I want to get in the water at the beach! But what I did enjoy was the presence of some incredible people, and felt the love of friends.  And at the end of the day, that's usually what makes me happy...