This blog was originally dedicated to updating my friends and family of my recovery, and was created only days after my spinal cord injury on December 30, 2013, hence the domain "prayforcarsontueller". Shortly after my injury, I began writing not only about my physical recovery but my emotional and spiritual recovery as well, and have become the main author of this blog. Any further questions regarding my recovery may be asked through tuellercarson@gmail.com. I'm immensely grateful for the outreach since my injury, and humbly ask for your continued prayers on behalf of me and my family.

Friday, January 9, 2015

When Worlds Collide

Friends,

This blog, "Carson's Road Home", is a blog that is used solely for describing my experiences with paralysis. There is another part of my life that I have decided to write about, and that is the one regarding the intersection of my faith and sexual orientation. Many of you are already aware that I am both Mormon and gay. In order to remain true to the nature of this blog, I will continue to make posts on this blog that are only relevant to SCI.

If you are interested, you can visit my new blog with the link below.

When Worlds Collide

Thanks!

Monday, December 29, 2014

One Year Ago...

I have watched the days crawl closer to the 30th of December and I haven’t known how to feel. This last year has been so overwhelmingly full of every kind of feeling, it’s impossible to sum up everything that has happened in one measly blog post, or journal entry. I’m quite certain that there are no words to represent what I have experienced over the last year.

One year ago today, from this moment, I was in perfect health. I was mobile, I was strong, and everyday tasks weren’t even a thought. I remember going into the gym and seeing a man walking who obviously had a spinal cord injury and thinking how grateful I was for what I had. I thanked God very frequently for my physical strength and blessings. It was a blessing I didn’t believe I could live happily without. I remember lying in bed and realizing that I was perfectly comfortable and wondering what it would be like to have chronic pain as some people I knew had. Little did I know that I was moments away from gaining all the problems I had thanked God I didn’t have, and losing all that I had so often thanked him for.

I can’t believe that it’s been a full year. It feels like only a few months have passed… if the date didn’t say Dec 30, 2014, I would never believe that it has already been this long. At 3:09 PM one year from tomorrow I would not walk again. I wouldn’t ever breathe or play the flute the same way. What I enjoyed so dearly for 23 years would be suddenly taken from me in the blink of an eye.

This is an anniversary, and while it was a truly terrible event for me and my family, it causes me to reflect on everything that has happened as a result. The initial flood of thoughts are all negative and painful, but I also realize that I’ve learned life lessons that are meaningful to me.

(Some of) What I Have Learned From Being Paralyzed
  • Happiness is a complex thing. There are things that make us happy that we don’t realize make us happy. I didn’t know how happy it made me to be in shorts in the summer and walk around in the grass. I didn’t know how happy simple things made me.
  • I have learned that grief is a train. There is nothing, I mean nothing, that can stop the train of grief. You are a passenger, and regardless of your intellect, understanding of grief’s patterns, mental capabilities or anything else, there is little that can alter the course that a grieving individual will take. I have learned that I have to ride the wave and try and wait it out. I can’t problem-solve my self through this one. It takes patience and everyone grieves differently, each individual’s grief train as uncontrollable as the next.
  • True human value is found in character. Nothing else, not prestige, power, good looks, wealth, or even education determine the value a person has. We are defined by the characteristics we posses. Many things can be stripped from a person in the blink of an eye, but no one can take away your goodness, your benevolence, your kindness, your determination to succeed. Conversely, no one can strip you of your arrogance, your hatred, your selfishness, your laziness. Under the façade that we all put up is the core of a human being. It’s worth ensuring that that core is something you like, because one day you might not have whatever is covering for what lies at the center of who you are.
  • People are generous. I have been astounded, simply astounded by the generosity that others have demonstrated to my family and me. Whether it has been through financial donation or sacrifice of time, people have been there to help me through every step of this journey to ensure my success. Financially speaking, I can’t describe the expenses that follow someone with an SCI for the rest of their life. That being said, I have been beyond grateful for the generosity of others that have helped me to get back on my feet. Pun intended. 
  • There are many who suffer. Though their losses may be invisible to the eye, many people around us experience legitimate losses all the time. I have learned that there are few of us, if any, who have a life that goes as planned.
  • Faith is a choice. Over the last year, my faith in God has been tested to its core in a way that has made me nervous. This has given me insight and empathy towards those to leave their faith and why. I get why they leave. I have learned that the nature of faith requires an element of doubt, and that to doubt is okay. To say, “I don’t know” is also okay. 
  • People change the world with their hearts. Although being paralyzed presents to me an unbelievable amount of loss, one thing it does not change is my ability to influence the lives of others. I desperately long to feel the ground under my feet again, but Carson will go on all the same in his plans to change the world around him. Whether that happens on his own two feet or on four wheels doesn’t make a difference. 
  • Ups and downs are to be expected. If I am up I can absolutely count on having a hellish day some time soon. If I am having a hellish day, I can count of coming out of it and feeling like I can live on.
  • Family relationships are complex and require great effort. I have never had the intensity of conflict between my family members and me like I have had this year. I have also never felt greater love for them and from them. I have learned that conflict and communication are essential for resolution. These conflicts end in greater understanding and appreciation, though they are uncomfortable at the time. I have seen that our love and dedication to each other always easily outweighs any differences we might have. Love always wins at my house.
  • Loss usually comes not with a ripple effect, but a tidal wave effect. Family members and friends also suffer great loss with the individual directly affected. When we love others and their happiness is connected to our own, their suffering is also connected to ours. 
  • I cannot will myself through everything. There are some things I simply can’t do. I have felt with nearly everything else I have done in life that I could achieve it if I put my mind to it, but not this one. I cannot will my spinal cord to be healed. I cannot will my legs to move. This is not only a physical defeat, but an emotional one as well. I have had to accept that I cannot will myself through or past the grief I will experience, and that’s okay… 
  • Small acts of kindness make a tremendous difference, even something like a smile. I was at Sports Authority before Christmas doing some shopping and I was having a rough time. I wasn’t really in line, but a woman with a kind, big smile insisted that I get in line in front of her. The feeling of kindness surrounding her was so genuine that it took me off guard. It did something to me inside. I recognized the change of mood that took place within me was thanks to that woman. Other thoughtful notes, gifts, and messages of encouragement have made a horrible day a bearable one.
  • I can’t live without the power of music in my life. There is a power in music that has healed me many times. It lifts me, elevates me and changes me in a way that nothing else can.
  • Social media has an incredible potential for good. I thought about this the other day when I made a simple post about making my bed. I truly wasn’t fishing for support by making the post, but received an unexpected amount of encouragement that made me feel accomplished. I thanked God for the blessing of social media because of the support I’ve received through it. 
  • If you have love, if you have family, if you have friends… you have what matters most. The first moments I realized I broke my neck were scary ones. I felt initial worry about all that I would be unable to do. For some reason, right after that I suddenly thought about all the people in my life that I loved, and believed that I would be okay if I had love. I’ve always believed in the power of love, and though it’s cliché, I have always truly, deeply believed that love saves. In the past, I have thought myself foolish for believing in such a way, but that belief has been confirmed over the last year as I have watched what it can do for a person. There is no greater attribute that will benefit mankind than that of true, selfless love. I don’t just believe that anymore. I know that. I wasn’t a fool for feeling that during those first moments of paralysis. I was right to feel it. 
This list is a miniscule representation of what I have learned and experienced. There are other good things I have learned, and other not-so-pleasant things. If I were to choose one word to describe this year, I would choose “hellish”, but closely following that would come the word “educational”. As I attempt to look back on the year to see what I’ve come through, it’s hard to do because I still feel like I’m in the depths of it. It doesn’t feel like I’ve come anywhere, or achieved anything. Yes, I am better at transfers, but I don’t feel better. I would be a fraud if I tried to end this post with a nice coat of sugar, so I won’t. I’m nervous about the upcoming year, though I hope it yields better, happier things than the last.

I’m ending this post in a way that makes me a bit uncomfortable for several reasons, but here I go. A few weeks ago I realized something. I realized that any significant future recovery probably wouldn’t be a natural course that my body would take. It would take a miracle at this point, either a medical miracle from future advancements and discoveries, or a miracle from God. While I don’t necessarily wait for either of these things to happen, I believe that both are possible. While I was in the hospital, I received a priesthood blessing from an apostle of God, who said that even a full recovery was possible. This has been the cause of much thinking and pondering. While I have learned that I need to accept the here and now of my recovery, I have also thought about miracles and the power of faith. Though my faith has wavered, I choose to maintain it and seek to strengthen it.

The good friend that started this blog chose “prayforcarsontueller” as the domain… I believe that I have been the benefactor of those many prayers, and believe from my own experiences that God hears and answers them. I thank those of you who continue to pray for me and now I ask more. I ask all those who exercise faith in God to continue to pray for me and for a full recovery. On days when I feel I cannot go on, knowing that people are still praying for me has strengthened me. I have hesitated at making this request because it appears to be the height of denial of my injury. Perhaps it is, but this is what I believe will be a strength to me this upcoming year, even as I come to accept the natural timing of everything.

This moment occurred last Christmas. This picture would have more
significance that I knew at the time

So, here’s to another year and probably another very difficult one. I hope to be more resilient to the difficult changes that life may present me, but I do find confidence in one great truth. I know that regardless of what I may experience, if I have love, if I have my friends, and if I have my family, I can make it through alright.

Saturday, November 15, 2014

Me and Edgar the Mole

A few weeks ago I had another first. I swam in a USA swim meet for able-bodied swimmers as the only disabled athlete. I thought it would be a small meet with a small audience where I could just race against myself for a faster time to further qualify for more Paralympic events. I had no idea what I was getting myself into, nor do I think there is anything that could have prepared me for what I experienced.

The swim meet took place at the University of Utah swimming pool (which should have been my first clue that this would not be a dinky meet). When I passed the building on my way to the elevators I could see through the windows that there were tons of people both in the audience and in the pool. It was crowded and busy, and there were close to no lanes available to even warm-up in.

In the other meet I went to in California, I was one of many disabled swimmers. Some were in wheelchairs, others had birth defects or lost limbs, but all were different than your average swimmer. Even at this event where I was among other athletes who understood what I was going through, it was hard for me to see myself as a disabled athlete. So you can imagine how much more I felt that way being among fully capable athletes

I should preface this whole story by explaining that the couple of days leading up to this meet were tough. October 30th was my ten month mark and Halloween was the day after. These days were a harsh reminder of what has happened, and as the year mark draws closer each 30th grows more painful. Above anything else, the pervading feeling that I inevitably feel is hopelessness. No matter what I try to do to feel lasting hope, it always seems to elude me. This feeling of hopelessness waxes and wanes of course, but it is almost always present. I recognize that I have improved in some areas, but in terms of real spinal cord recovery, I am simply dissatisfied (that's an understatement).

These experiences and feelings all rolled over into the day of the swim meet. I was feeling discouraged and very, very sad. I got to the meet and slowly made my way over to the least occupied area of the swimming pool. I watched the swimmers warming up, observing the starts, flip turns, and drills that I am so well acquainted with. I looked for a lane that had few enough swimmers for me to warm up, since I knew I would slow down anyone else in the lane with me. My mom was on deck at this point and helped encourage me to get in the water and get moving. I said over and over, "I don't want to be here. This is the last place I want to be."

I took off my shirt and shorts and rolled over to the edge of the pool, goggles on, aware that everyone around me was staring and probably wondering what I thought I was doing at the meet. I let myself down into the cold pool water. After a few moments of muscle spasticity, I began to try and warm up but only after a lap or two, my emotions got the best of me and I had to let out a few sobs under the water before trying to continue.

After warming up sufficiently, I got out of the pool, dried off, and began the wait until my first event, 50 m butterfly. While I was looking over the meet schedule, my coach walked over with her arm around a young girl wearing a swim cap and goggles with very red eyes. She was introduced to me, and it was explained that it was her very first meet and she was very nervous about it. I explained to her that it was my first meet too, and that I had been crying just like her only a second ago ( My coach looked up and asked, "You were!?") I told her that the first one was the worst, and that it would be easier the next time. I said, "I bet you every other kid in the pool is nervous too." It was good to know I wasn't the only one worried about swimming.

When I was signing up for this swim meet, I thought that a 50 m butterfly would be a good challenge for me. I hadn't actually finished a full 50 m butterfly before without stopping, but thought that it would work out... it didn't turn out the way I had hoped. The 50 m butterfly is only swam amongst the younger swimmers so I had to swim against the 10 year olds. The time arrived and I went over to lane 8, got in the water and took off at the start buzzer. I swam the first 25 m relatively well, but started dying near the end at the wall. I turned around, got slightly caught on my legs in the shallow water and tried to take off again to get some momentum. In normal butterfly I can breathe every stroke if I get tired, but now that I can't keep the rest of my body up, if I lift my head to breathe the rest of me sinks. That being the case, I really have to breathe every other stroke if I want to get anywhere in the water, but at this point I was depleted of oxygen and was forced to take a breath every stroke. It was a long, grueling remaining 25 m to the end, consisting of me trying to get my arms out of the water, sometimes very unsuccessfully. I had to modify my stroke to breathe, just so I could finish the race.

As I finished, the crowd was cheering and screaming and I was absolutely humiliated... I have never been so embarrassed. I work hard to not only be and feel capable and in control, but to appear capable and in control. Swimming makes me feel more exposed than normal, but swimming that event was another thing entirely. I felt like I left the last bit of dignity I was trying to hold on to in the pool. I made my way back to the family and kept my head down to avoid making eye contact with anyone. I had about forty-five minutes between the next two event, and I seriously asked myself if I could or even should finish this meet. It was one of the first times in my life that I felt defeated by something.There was something about that race that I felt destroyed by... I felt like I had been beaten emotionally by that event (which I was actually disqualified in because I had to modify the stroke... to breathe) and wondered if I could possibly do that two more times. I decided that I would stay and finish. I'm happy to say that while the other events were hard still, they were at least better than the first.

I enjoyed watching the other swimmers compete at first, but realized that it slowly made me feel very sad and realized where much of my emotional turmoil was coming from. Not only was I having a hard time looking so disabled in front of tons of people, I was simply longing to feel the glide and the speed through the water again. Here I had to watch people do so well, the very thing I was missing so much. I watched the finals to the mens 100 butterfly and while fly was not my most competitive stroke, I would have competed in the final heat and been in the top three. The contrast of what I was experiencing was nearly overwhelming to me. I was fighting tears most of the meet because of the deep sorrow for what has happened. It still seems unbelievable to me at times.

Leaving the meet
After finishing my events, I sincerely thanked my coach who was an indispensable support to me through the whole deal and I felt for home. As I left I thought, "I have to take a picture of me here. This is the hardest thing I have ever done", so Paul snapped a quick one of me in front of the pool.

In retrospect I asked why the whole event was so difficult for me, and why I felt defeated when in reality, I had improved on all of my times. It was physically very hard to finish that first race of course, but it was by far more difficult mentally. I kept thinking of dignity and feeling like I had lost it. A lot has happened since my injury, and at this point I've been naked in front of most of my friends, been catheterized by nurses (also in front of my family and friends), I've pooped my pants, peed my pants and thrown up on other people. That's a lot to feel embarrassed about, but for some reason none of it compared to what I felt at that meet. I felt like Edgar from Once Upon a Forest when he is caught by the humans. I'm assuming there will be few who know what I'm talking about so I'll briefly relate the story to you. 

The context of the story is really unimportant, but Edgar is a little mole that is trying to stay alive with his friends and avoid human contact. At one point as he is running away from the humans, he trips and his glasses are knocked off and then a branch catches his coat and rips it off. He runs around naked, blind, and bumping into everything around him as he tries desperately to make an escape. I remember watching as a little kid and thinking that he looked so exposed and vulnerable.

Edgar with his clothes and glasses on
It's funny that twenty years later, that is the story that comes to mind as I try to find a way to describe how I felt at a swim meet! Exposed and vulnerable... and embarrassed. The fact that I swam before definitely makes this all trickier since I can easily compare everything I'm experiencing.

So, I took a small break from swimming to recalibrate and I believe it's time to get back on the horse. It was all definitely a learning experience, and I while I'm still not convinced that swimming at this meet was a good thing for me to do at this stage, it did provide me with an experience to draw from in the future, if nothing else. I will also know to make sure that any other "normal" meets I go to in the future are at least much smaller!


Wednesday, October 15, 2014

Returning To The Stage

Only days after my accident I found myself laying in my bed in the ICU with my dad. I only have memory of a few things that happened that day, but I clearly remember two doctors coming in through the door of my room and sitting down at the foot of my bed. They came to look at how I was doing and to look at how my injury was presenting itself. As they looked me over, they stopped and asked me what my goals were. I told them that I wanted to play the flute and piano again. They looked at each other, nodded and one of them said, "I think that's going to be a real possibility." Something about their visit seemed especially angelic to us, as though two messengers had just come in to give us news. As my father and I look back on that day, we agree that there was something extraordinary about their visit. My mom was not present for that moment, but upon hearing my dad recount the experience, she said it was the first true ray of hope she witnessed in him.

Not long after my injury, I was given a plastic flute from my flute playing colleagues, and began to attempt playing again. Hot cross buns was a stretch at first! While I was in the hospital, I picked up my silver flute to try and play, but was unable to even hold it up to my face. I was a discouraged, but I stuck with my new plastic flute. Over these last many months I have worked on playing and started with simple tone production, and then moved on to playing music that had slow moving notes. Now I find myself being able to play music that is almost satisfying for me to hear. Every so often I get a glimpse of the feelings I had before as I played the flute.

The day I received my plastic flute
On October 10, I returned to the stage for the first time. Mercedes Smith and I performed the well-known Flower Duet. Mercedes is the principal flutist of the Utah Symphony and was my teacher prior to my accident. Every year the Utah Flute Association has a guest artist come and perform at a recital and teach a masterclass the next morning. Mercedes requested of the UFA that there be a place where donations could be made to help with the expenses of my Paralympic swimming competitions. The UFA was kind enough to allow this and allow me to play the duet at the recital. Over $1,000 were raised to help fund my journey towards the Paralympics! I don't know quite how to feel at such gestures of generosity from both the donors, as well as Mercedes and the Utah Flute Association. It's a humbling experience. The flute community has been incredibly generous to me and has provided me with all the opportunities to succeed since the beginning. So thank you. 


There are few events since my injury that have been so impacting and positive for me. I felt more capable than normal, and I felt so loved by those in attendance. There are few things in this life that mean more to me than music does, so it was fulfilling to share it once again. I'm grateful that I can play. In many ways I am unhappy with how my spinal cord has healed over the last nine months, but I am beyond grateful for my hands. That is one place where I am pleased with the progress that has returned, and I would be ungrateful and a fool if I didn't recognize that progress. 

While I was able to play the Flower Duet at this recital, I still have a lot to work on! That piece was the perfect length and difficulty for me. I was worried toward the end that I wasn't going to make it because my fingers were slipping off of the keys, but it all worked out and I was pleased with the performance. 

Here is a link to a video of the duet. My younger brother Dallas is holding my shoulders up because I fall forward without some support. I am working on getting a chair and some kind of strap that will allow me to play upright without assistance. That will allow me to bring the flute to me, rather than having to lean so far forward to play. I'm thankful to have music in my life, it does something to me that nothing else can. I believe I was inspired as a little 10 year old to choose the instrument that has brought me so much enjoyment throughout my life. I am grateful to be able to continue to both play and teach (I still have room for more students!) and I look forward to more of these opportunities in the future.

Wednesday, October 8, 2014

From California To Canada

Yucaipa, California is home to the 2004 Olympic Trials swimming pool where Michael Phelps began his Olympic career. It also happens to be the pool I swam in last week at my first IPC (International Paralympic Committee) sanctioned swim meet.

Before my SCI, I enjoyed swimming competitively both in high school and in USA swimming clubs. Many of you know that I have used swimming over the last many months as a part of recovery. Initially, swimming was a way to strengthen my upper body and core, but over the last few months it has slowly changed from being just another form of therapy to being somewhat of a competitive outlet.

During the summer I had my first meeting with a swim coach at the University of Utah who said she was willing to assist me by way of private instruction in my efforts to swim. When she first saw me swim, I was swimming with hand paddles and a float belt on in the pool at physical therapy. Shortly after that, I began swimming without any flotation assistance and worked at swimming one length of the pool at a time, swimming more backstroke than anything else. At first, I could barely stay afloat and stayed well hydrated from all the pool water that went up my nose as I swam! As time progressed, I began to manipulate my body slightly better and was able to swim a full 50 m without any assistance. Just me, a speedo, and goggles.

In many Paralympic sports, athletes are separated into groups or classifications based off of their disability to ensure that competition is fair among the athletes, and this happens to be the case for swimming. Getting classified in your sport is the first step before you can even begin competing. In swimming, classification is done at an IPC swim meet the day prior to the competition. As I began to be more and more comfortable in the water, my therapists, coaches and I began looking for the next opportunity to be classified. When I saw that the next meet was in Yucaipa, California in September, I admit that I wondered if I was up to the challenge! This would mean a lot of firsts for me; it would be my first time competing, but even more daunting was the idea of flying an airplane for the first time. This would be uncharted territory for me which I would normally invite, but being in a wheelchair tends to make me feel slightly more vulnerable than I normally would be. Go figure...

After some discussion between my parents, support team and I, I decided that I would go for it! While deciding this, we found out that swimmers had to be one year post-injury in order to classify and I had been injured only slightly more than eight months at the time. A call was made to the director of Paralympic swimming who then acquired medical clearance from my spinal cord doctor and I was good to go. My dad was out of town the weekend of the meet, so it would be a mother-son weekend in California, which I was very happy about. We made plans, bought the tickets a few weeks out, and I even bought a travel shower chair. Early in my injury, I knew that I wanted to do some Paralympic swimming competition, but did not foresee it coming so quickly!

Between my swimming with my coach and swimming on my own, I was swimming a few times a week. I thought that maybe I should swim a bit more often since I was going to a meet where others would watch me swim. At this point I had been in open water about ten times. This was strong motivation since I was worried about simply finishing my events more than actually competing in them. I'm apparently quite concerned about how I look when I swim. My coach suggested that I swim 3 events: 50 m free, 100 m back, and 50 free. A few nights before she suggested this, I had a dream that I was swimming my modified breaststroke in a lane next to normal breaststrokers and that I was keeping up quite well (I was so impressed with myself in the dream). I interpreted this as a sign that I was to swim breaststroke, so I added that as the fourth event. As I mentioned earlier, I was concerned about my ability to actually finish my races, and as I worked at this I realized that breaststroke would be the most difficult to finish. I would start off swimming somewhat normally, and basically end up treading water with my hands in a panicked effort to get to the opposite wall. I sometimes joke that we paralyzed individuals only swim fast because we slowly drown throughout the race, and the one most motivated by the will to live ends up being the winner.

We made our preparations to leave and took off early Friday morning to make it to the SLC airport. My mom said the first thing that came to her mind were the words of Kevin McCallister in Home Alone. It's the scene where he says, "This is it. Don't get scared now", as he cocks his gun at the top of the staircase. You can bet I was not the only one nervous about traveling and making this trek a success! We took off while it was still dark, and arrived at the airport with plenty of time to make it through. We didn't know quite what to expect with security, but were pleasantly surprised that being in a wheelchair can have a few perks, including cutting huge lines. Silver linings, people, silver linings.

Needless to say, we arrived with time to spare. The stewardess at check-in was very kind and allowed me to be bumped up to comfort economy, which gave me much more leg room. This made flying so much easier! I had a great time drinking my OJ and eating Biscoff cookies while enjoying conversation with my mom. We disembarked the plane, took a shuttle ride and got our rental vehicle. After a thirty minute drive or so, we checked into our hotel (after a stop at Trader Joe's), I changed into my swimwear, and we headed to the pool. My classification appointed started at 3:15 so we arrived around 3:00 to check in and get warmed up in the water.

Classification is a process of determining the level of disability of an athlete. The athlete is tested muscularly on every level, each muscle receiving a ranking of one to five.. Five being the strongest and one being the weakest. They took my back into a room and asked if I had any movement below my injury, to which I replied "no". They continued to test my biceps, triceps, shoulders, pecs, wrists, fingers, etc. I was a five on all of these except for my finger strength in my right hand which was a four. I also received a zero in finger adduction on both hands. Those are the muscles used to bring my fingers together. After these tests, they added up my score and we headed back to the pool where they asked me to demonstrate my ability to swim each of the strokes. There were two present during this process, one of which was the "Director of Payalympics High Performance Swimming" and the other being the classifier as well as a physical therapist. As I was swimming they were vocal about how symmetrical my injury is, meaning I have equal strength on both sides of my body. I was told that this is rare, but very helpful.

In swimming there are ten classifications, S1 is the most disabled and S10 is the least disabled. These disabilities can vary greatly, but many of those I saw competing were amputees, or had birth defects that resulted in missing limbs. I was classified at S4. With every classification the qualifying times change. In looking at qualification times previous to my classification, I had seen a big jump in time between S3 and S4, so I was hoping I would be S3! I tried to convince them that I should be in S3 but they wouldn't have it. They said I was "a classic S4", so S4 it is.

Saturday morning I woke up bright and early and made it over to the pool to begin warming up. My first swim would be a 50 m freestyle, followed by a 100 m backstroke. I usually have a good amount of muscle spasticity when I initially get into the water. Perhaps because of all the sensory input from the water, my muscles become rigid throughout my legs and stomach until I get used to it. Before my injury, getting into the water was by far the worst part of the sport because it was usually very cold for the competition. I no longer have that problem since I don't have sensation where the cold would be most shocking, if you know what I mean. This includes my underarms. I sometimes forget that this is the case and I am pleasantly surprised when I get in the water, since I am so used to bracing myself for the plunge.
During morning warm-ups
I chose this one because I thought I looked pretty normal...
 I swam my 50 m freestyle but instead of swimming front crawl, I swam backstroke. In the freestyle events it is legal to swim any stroke... the crawl is most common by far because it is the fastest stroke but since that is currently not my case, I chose to swim back. I swam the 100 m back shortly after. I finished the races and admittedly felt pretty upset. I got out of the water and just felt unhappy about the everything. I didn't feel like I swam well, and I was just down about the whole situation (being at a Paralympic meet alone meant I was disabled, which I'm still really working through emotionally). Swimming is hard for me now. Before, I would get in the water, push off the wall, and glide in streamline and enjoy the water before surfacing for breath. Now, I fight the drag and weight of my paralyzed torso and legs (which happens to be a lot of body). It's hard for me to ever feel like I've had a good swim because I compare how swimming felt to how swimming now feels, and there's a big difference. I don't ever feel fast, and I'm rarely satisfied with a swim. I was thinking all of these things, and went over to talk to the directors who greeted me with many congratulations. They seemed so pleased and I was so surprised! They informed me that I had made the Can/Am meet cut in the 50 m backstroke for the upcoming meet in Canada, which is the next step up the Paralympic swimming ladder. I was shocked (but pleased), and I realized that I needed to reset my standard of performance to an appropriate level. This will be hard for me, but I hope that one day I will feel pleased again at my own performance in the water

My mom and I with my aunt and cousin at the mall between events
I came back later that evening for the second half of the meet where I got some great tips in breaststroke and starts and then swam the other two events. I am grateful to say that I successfully finished my events, even breaststroke... which was not pretty. I wondered myself if I was going to make it, but it all turned out in the end. And that was it, I finished my first meet! It was a major learning experience, but it was an overall success. I have A LOT of work to do before the next meet in Canada, and I hope I'm up to the challenge. Thank you to all who have been such a powerful support to me over the last many months. I couldn't do it without you!

Sunday, September 7, 2014

The Illusion Of Failure

I have a confession to make to you. There are many subjects I have wanted to write about, but have hesitated to do so for fear of being a hypocrite. That is, speaking or writing of a principle that I want to acquire but have not yet attained. Sometimes I feel like this blog should be called, "Things Carson Truly Wants to Internalize, But Hasn't (Yet) Been Able To." I keep making disclaimers throughout my blogs and I hope this is the last one. I'm quite sure almost anyone who is trying to improve in almost any aspect of his or her humanity would feel this to some degree. Isn't it the plight of every Christian, or every good man or woman for that matter, to become or internalize what he or she believes? It's a quest that takes more than a lifetime. This post is about one of those subjects.

That subject is patience. However, I've found patience is exercised in conjunction with other principles like faith or hope. For example, the very definition of faith implies that one has yet to arrive at some sort of destination. The journey leading up to that destination always requires patience and hope. Patience in the waiting for something not yet realized, and the hope that one day it will be. They are by nature interconnected, I think. So, I guess it's more than just about patience!

Over the last few weeks, I have been feeling like my efforts towards recovery have been in vain. These feelings are greatly motivated by my dissatisfaction with how function has returned below my injury level. I am grateful for what has and continues to return, but it's at a rate that I find... depressing. While feeling somewhat hopeless about the future, I've had some experiences that have given me new insight and perspective, and have caused me to reconsider my attitude towards the current circumstance.

Some of you may already know that my physical therapy can essentially be broken down in two parts; the working of muscles above injury level, and the working of muscles below injury level. Working out areas below injury level means working muscles that work very little, if at all. This is terribly frustrating work for me. I've described my efforts at physical therapy to some by way of an example. I invite you (whoever's reading this) to try something. I want you to take a moment to find an object that's close to you. It can be any size, but something relatively small would probably be good. Now that you have found the item, your objective is to move the object using only your mind. You can do anything you'd like to move it, just as long as you're only using your mind to do it. Stare at it. Try your very hardest! You can move it, you can do it!... Now, repeat this exercise for a few hours, for 4-5 days a week. For some this works faster than it does for others, and for some it doesn't end up working at all, but keep at it.

I've spent the last eight months doing this exercise and I know many who have been at it ten times longer than I have. What I have described above is how it can feel day after day, trying to exercise certain parts of my body. I go to therapy and try to accomplish an exercise over and over again, but to no apparent avail. It tries my utmost patience. There are many days where I feel I am wasting my time as much as you would be, trying to move that object with your mind. It was probably only a week or two ago that I was feeling especially frustrated and hopeless during therapy. I turned to my PT and said, "Jan, I'm afraid I'm plateauing..." She looked at me and said something to the effect of, "Sir, you are way too early in your injury to be worried about plateauing." So, I was given the "plateau talk", which was helpful and got back to work. Shortly after that, I had the following experience that taught an me an important lesson.


Me before the "plateau talk"
I was at physical therapy like any other day of the week, and my therapist decided that I would do some standing in a walker. I sit on the bench and have a therapist sitting in front of me with his knees on mine, blocking them so that they don't just shoot out from under me when he pulls me up. I have a walker between us that I can grab onto, and the therapist has a belt around my hips to pull me up when it's time. I lean forward as he pulls me up, and I get into a standing position. Once I'm standing, I do a number of different exercise to challenge the muscles responsible for keeping me upright. I have to find the "sweet spot" where I feel like I'm falling but have just enough control to keep myself from going down.


I have stood many times in the walker, and always try to stay upright as long as possible. That is, after all, the point of the exercise. As I was standing there working to execute my task effectively, another therapist came behind me to feel which muscles were firing (contracting) within my abdominals and low back. As she tried to feel for them, I would try to flex and contract everything, but the therapist monitoring me remained silent, feeling no change in the muscles. As I continued to do my best to find my balance, I would often lose control and have to catch myself in frustration, needing to put my hands back down on the walker. However, right at the moment I failed to stay upright, the therapist behind me would say, "Hey, good muscle contraction!"

Surprised and frustrated, I tried again. I tried to find the sweet spot, but it wasn't until I had failed at my attempt that my muscles would give that last bit of effort required for contraction, that the therapist would feel something fire. In essence, I was succeeding only when I experienced what I thought was a dismal attempt at standing upright. I began to think about the possibility of this being the case in every aspect of my recover. Could it be that more is happening below the surface that I am aware of?
This is a similar balance exercise, but on a ball
This learning experience has motivated me to keep working hard even when no progress seems to be made and I have tried to change my perception of success during therapy. Recognize my use of the verb "try" in the sentence above. I still get frustrated and still want to throw in the towel sometimes, but during these hopeless times I have to remind myself that at least some progress is occasionally masked as failure, as experienced in the walker. In short, all this walker business inspired me to reflect on the virtue of patience. The experience said, "Keep working hard because something unseen is occurring, be patient, and don't call the game early".

I have remembered one of my favorite quotes by Neal A. Maxwell. He said, “Patience is... clearly not fatalistic, shoulder-shrugging resignation. It is the acceptance of a divine rhythm to life; it is obedience prolonged. Patience stoutly resists pulling up the daisies to see how the roots are doing. ” In other words, patience does not suggest that you pull out the white flag to give up the fight, nor does it suggest that we should become apathetic to our plight. It does suggest that we learn to accept the timetable that has been given to us, regardless of the context of our life struggle. I've struggled to find the line between acceptance and resignation, wanting to accept what has happened, but wanting to never give up on the hope for change. I believe that patience is part of that answer.

Waiting is tough, but patience is especially tried when the future is not clear. My SCI has gone above and beyond in testing my patience, since the outcome of my injury is unknown. I don't have the blessing of knowing that I'll achieve my desired outcome. It's not like what I've experienced before in life. In anything else like sports, music, or academics, I know that I'll have to practice, sacrifice, and suffer to get better. I know that I'll have to focus and push my limits to improve, but I have at least been fairly certain that I would be rewarded with improvement. However, this is not so for my SCI recovery, nor is it so for many people in other circumstances. Sometimes we don't know what the outcome of our efforts will be, so we simply try to hope for the best as we do what we can. This has been the true test for me since I have found it difficult to find a basis for hoping at all. I hear myself ask, "What can I hope for in this? I don't even know if what I seek is within reach..." This hoping without evidence reminds me of Abraham in the scriptures, who "against hope, believed in hope..." as he patiently awaited the fulfillment of God's promises. If you know how his story ends, you know that his hope was not in vain, but that the fulfillment of those promises required time.

Like in Abraham's case, certain final outcomes do not rise to the surface until later, and like seeds, some things grow down before they grow up... Which is exactly the reason I want to keep at it! Working with faith and patience is a risk for me since I can't promise myself certain results, but I consider giving up an even greater risk. What if the seeds we've planted are about to burst into life? What if the plant we've cultivated has healthy roots, and is on the brink of shooting up above the surface into the daylight, revealing the fruit of all our hard work?

The last 8 months have been hellish for me, and I cannot describe the angst I feel over my whole recovery. I dream about walking over and over again, feeling the freedom I had before. I dream that I'm better, weak but better, and that everything has somehow miraculously worked out. I dream that life is the way it was again... and then I wake up. I wake up paralyzed in bed, probably aching and sore from therapy, and struggle to get out of bed to start another day. It's depressing and painful to realize that from this there is no escape. What's happened has happened, and there's nothing I can do go back to December 30th to stop myself from jumping, or at least tell the management at the park to replace the flat, deteriorated foam. And no matter what I do, this will be my life experience... so it all comes back to choice. I have to wait, so how will I choose to wait? Will I choose to learn patience and gain something from this in spite of what has transpired, or will I choose to rot? Will I choose to hope for positive change to occur at some point, or will I resign myself to a ruined life? 

I say it all the time, "I want to be happy again". I know I can't be happy if I give up, and I have chosen to try and learn with the hope that I will be content with life one day. In the back of my mind I think, maybe, just maybe those dreams I have every night could come true. Maybe one day the Carson of real life will become the Carson of my dreams... but in the meantime, I have to learn patience, which for me means a lot of suffering. My hope is that while I grow the daisies of my life, I can learn this patience.

I imagine that the truly patient have learned to enjoy the warm sunlight while watering their flowers, or take time to notice the sweet scent of the soil they work in. The truly patient do not say, "I'll be happy when...", though they still long to see the hard green bud they tend erupt into soft white petals. These have learned to live now, though it's difficult. Their positive outlook does not diminish their suffering per se, but perhaps it does allow them to avoid a few more thunderstorms than the rest of us. 


I am not one of the patient, but I want to be. I personally have flowerbeds full of upturned daisies as a result of my desperation to know that something is growing. The skies over my gardens are overcast more than they are sunny, by some choice, and it's generally colder than it is warm. I am learning that I have less control over how the seed grows, but have more control over environment it grows in. It's my goal to learn to let the flowers grow on their own time, and choose the sunnier days over the darker ones. It's my goal to learn to live now and not "when", and it's my goal to generally enjoy the surroundings of my garden as I watch for the transformation from bud into blossom.