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 I'm immensely grateful for the outreach since my injury, and humbly ask for your continued prayers on behalf of me and my family.

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.

Tuesday, August 19, 2014

Please, Call Me The Stairmaster

I believe it was August 8 that I found myself alone in my house, which is not so common for me. I decided that I would grab myself something to eat while I caught up on some emails. I sat down to eat, and as I try to get into my mailbox, I realized that my Wi-Fi wasn't working. Since all the computer stuff is upstairs where I can't get to, I started to think of some other things I could do which included reading a book, or writing in my journal. Then, the thought came to me ,"I bet I can get upstairs somehow and reset the Wi-Fi..." I had actually wanted to find a way to get upstairs by myself for a long time, but knew that if anyone were home I would not be allowed to (because of safety reasons or something). 

So realizing that this was a prime opportunity and a rare one, I zipped over to the staircase and transferred on to the first stair and began the process! I have to admit, I was pretty excited about the whole thing. I tried to stay close to the banister so that I could hold on if something slipped to make sure I didn't fall. I also had to take special care of my legs to make sure that they didn't flop all over the place, which is actually always a challenge because they're so long. I quickly developed a nice, safe pattern for slowly transferring up one stair at a time. Over the course of about 15 minutes I made it to the top! I checked myself for skin issues to make sure I wasn't too red anywhere, and continued my journey across the upper floor landing, up a few more stairs, and to the office chair at the computer where all of the equipment is. I did some nice big scoots (I don't go to physical therapy for nothing), a few more transfers and got up into the chair. SUCCESS! I was quite pleased with myself seeing as this was another first. It was a pretty enabling feeling. 

I'm not sure why, but I often imagine myself in strenuous circumstances and ask myself if I could realistically survive. So I will be sitting in the van or something and suddenly think, "What if I didn't have my wheelchair, and had to survive alone in my house for three days? Could I do it?" Then I mentally go through the steps. "Well, I would have to transfer out of the car and onto the cement. Not a problem… I would just have to worry about skin problems, but I could just throw this here blanket down first. Perfect. After that, I would have to scoot my way over to the stairs, up to my front door and get in that way. Cake." After that I have to consider what I would do to get food, water, etc. "Once I get inside, I would easily tie a pillow to my bottom so I wouldn't have to worry about my skin, and then I would be free to scoot wherever I needed, even on hard surfaces. I could probably get food out of the fridge, but only veggies and condiments would be within my reach. That being said, if I didn't want to live off of celery and mustard, I would have to find a way onto my counters or something."

That's how I go about thinking. Now that I've conquered the stairs, I can realistically add another dimension to my level of accessibility. I'm sure all of this thinking is motivated by some underlying fear that survival would be a little more difficult than before… but oh well.

Unfortunately, my mission was only partly successful because when I got up to reset the Wi-Fi, I found that it was broken and unfixable at the moment. I decided I would take advantage of the journey and listen to some music (a Vivaldi concerto) and type away at a new blog until someone came home. Eventually my parents did come home and I proudly told them that I had mastered the stairs. I began my descent, and as I started down the very top step I realized that this process was going to be much more difficult than the ascent. I was about six steps from the bottom when my left leg flopped over and began to pull me down the stairs with it... Remember, no core. I tried to sound casual and called my mom to see if she could come over and fix my stuck leg and luckily she was close by to help.

I was a little bummed that I needed help at the end, but it was better than getting injured, I suppose. I had her take this photo, celebrating my upstair dominance.

I also wanted to use this post as a way of giving an update of how things are coming along recovery wise. I always wish I had some new amazing function I could announce, but such is not the case. I keep remembering what they told us in the hospital. They told me, "The recovery of this injury will be like a marathon, not like a sprint." That has been exactly the case, and I continue to struggle with that reality day to day. I have never worked at something harder then I have my recovery, and I have never had something return so slowly. I am used to making progress much more quickly than this. Needless to say, this is trying my patience. I've learned that just because I have to wait (because I'm forced to) doesn't make me a patient person. Patience is waiting well, which is something I am only recently realizing that I truly need to develop. So I'm working on that along with the rest of it.

In terms of physical recovery, my hands are recovering more quickly than anything else. I feel very grateful that I have the strength and dexterity that I do. It's far from perfect, and many times not functional, but I believe that I will have most of it back at some point. I enjoy playing the flute more than I ever have since my injury, and I am able to play longer and more fluidly. There are still times when someone in my family will be playing the piano, or when I will be listening to some beautiful music and feel a huge desire to play like I used to. It hurts to know that I'm literally incapable of doing that right now, but I hang onto the hope that one day I will play in the way that's pleasing to me.

I go to physical therapy as often as I can, and still enjoy it. There are times when I get frustrated because of the slow pace like I mentioned before, but I love the environment at Neuroworx and have fallen in love with the staff there. It's a place I like to be. It also feels good to get my heart rate up as much as I can. I still work a lot on my core muscles and try to build general strength throughout my upper body. I continue to have sensation return through the right side of my torso as well as in some scattered parts of my legs. It is very faint tingling, but it is feeling nonetheless.

I am recognizing the continued need for independence and I strive for that goal every day. I have become far more independent in my daily needs and personal care, including bowel care, which is a huge deal for me (and probably my parents ;)) I am also feeling the need to incorporate more of the things I used to do back into my daily life again. This is all happening just a step at a time. 

I continue to seek happiness, which honestly often alludes me, but I continue to seek all the same. I get down, I get angry, I get depressed and anxious, and I definitely get hopeless, but I don't give up. Ever. I'm not sure if it's my pride (ok, I'm sure it's part of it), my intense competitive side, or simply denial but I refuse to surrender. Not because I want to feel heroic, but because I want to prove to myself that I'm in control. I want to prove that I, not the stormy sea, am still captain of this ship, On an especially hard PT day when I don't feel like I'm accomplishing anything, I envision myself pointing a finger in the face of my injury and saying, "You just wait. This isn't over. This game isn't over yet." 

Tuesday, July 29, 2014

I Didn't Land In Paradise. Did You?

Life is like a trip you prepare your whole life to go on. You pack your bags and prepare yourself for all of the exciting experiences you are going to have. You learn the language of the people you are going to be with and get all the gear suitable for the weather. You have maps of the area and know all those you'll visit with and meet. This trip is going to go just as you planned... and it's going to be amazing, because you are going to something of an exotic paradise. The weather is perfect and the people are likable and kind. Just like every other trip, there might be bumps along the path and you understand that, but nothing too big can get in the way because you're the captain of this ship... right?

As you prepare to leave, you get ready for your flight and remember the deal of the trip. You have a one-way ticket to wherever you are trying to get to. There's no going back once you've arrived to your predetermined destination. Understanding that this is the deal and what you are signing up for, you choose to board the plane and take your first-class seat. You are comfortable and enjoy the ride, dreaming the whole way of what you're life is going to be like. You slowly doze off until you fall asleep to the drone of the engines...

You wake up hours later and realize that you have not yet arrived at your destination, and that you should have been there hours ago. Nervous, you check your ticket to make sure that you've made no mistake, and sure enough it shows that you are on the right flight. The plane begins to descend as it prepares for landing and you catch little glimpses of the earth through the cloud cover. As the plane descends, you feel anxious. What if there was a mistake? There's no going back at this point... what if you're on the wrong plane? That would be a living nightmare, to be stuck somewhere you never wanted or prepared to be. No, there couldn't possibly be a mistake, you've truly done everything to ensure your safe arrival at your desired destination.

The plane hits ground and slowly comes to a stop. It's hard to tell at the airport whether or not you're at the right place, so you get off the plane, grab your bags as quickly as possible and head outside where you're hit in the face with a blast of icy cold wind. The sky is dark and gray, and your stomach drops as you realize...

You are in the wrong place.

You feel sick and go through every possible way you could have made a mistake. There was none, you double and triple checked everything before you left and yet here you are, in a place you never intended to be. Panic sets in and you run to the nearest person to ask where you are, but you quickly realize that they don't speak your language or the language you prepared to speak. Within moments, despair begins to set in. You can't go back to what you had and you can't go to where you want to be. This is your reality now, and it's here to stay. This is your life, and it's been turned upside down in only a matter of hours.

Now what? You don't speak the language, you don't know the people, the culture is completely foreign to you and you are completely unprepared for what you are going through. Utter hopelessness sets in and you hear your own voice saying, "No, no, no. This can't be real, this just can't be happening to me." You are used to being able to solve problems and find solutions to those difficulties, but there's no way out on this one. In comparison to how you've always planned on living, this is Hell. "How could this happen to me.... how could this happen to me?"

At this point, you've got what you've got, and the only thing that remains within your power to change is you. You are faced with some questions. Is adaptation to these strenuous circumstances feasible? What can you do to change yourself in order to be more compatible with this unappealing life? Are you going to rise to the challenge, or are you going to submit to your circumstances? Can you be happy living a life that is so far from what you ever wanted? Is happiness even within your grasp anymore? How will you cope with your great loss? What will you do now?

Note: Regardless of how you choose to adjust to this tragedy or how you answer the above questions, if you open your eyes and look around you, you'll notice something important.The people in this "Land of Loss" are not native. Everyone is different. If you observe those around you, you'll see that they are also adapting. They may even seem to you as though they, much like you, have also arrived in a land they never intended to be in. They didn't land in paradise either. You have come from different places and from different lives, but you share something in common. You're all here together. Others have done what you are doing, or are currently doing it along with you, and there is strength in that.

The story ends here. How it finishes is unique to you and how you choose to live with your challenges and disappointments. I have thought about this analogy for some time now. Two parts of the story were especially important for me. One is that I can't change what has happened to me, and that the only thing within my power to change is myself. The second is that I'm surrounded by others whose lives have also progressed differently than they have planned. In other words, they didn't land in paradise either.

I made the latter realization over the last six or seven months, as I have been incredibly blessed with outreach. Outreach from people I know, and outreach from people that I've never met in my life. These people often tell me stories from their own lives and seek to show empathy and understanding. I've spoken with women who have lost their children to illness, couples who battle infertility, and individuals who struggle with mental and emotional disorders. Others speak of divorce, wayward children, or abuse within the home. The list of struggles is endless, and I've been taught important lessons by those who have confided in me. I inevitably leave feeling like I am not alone in my pain and grief.

Before my accident, even when I was going through extraordinarily difficult times, I thought that a normal life was a perfect life. I believed that the majority of people truly ended up in their planned paradise and that I was some anomaly. I thought that because some of my life dreams had been crushed, that I was one of the few unlucky ones. Then I broke my neck and received an outpouring of love and support. It was at this time and since that, through the blog letters, I have realized this very perspective-changing truth. A normal life is not a perfect life, a normal life is a hard life.

I have been astounded by the number of people around me who have been struggling without me having any idea. I believe that this is almost always the case! I believe that we often go unaware of the trials others are going through. I sometime imagine how it would be if we could easily see the worries and anxieties that those around us experience. I imagine that we would realize how similar we are, and how we much we could help each other.

Early in my recovery process, I had the decision to either keep my experiences to very close friends and family members, or to share them openly. I (obviously) decided to take the vulnerable route, and knew that I may consequently be perceived as weak, emotional, needy, or hungry for attention. I have been surprised by the positive reaction that has occurred as a consequence of my decision to be real.

When speaking of this with a dear friend, she said, "It takes a strong person to be able to share the rawness and depth of true emotion.  We all feel it, but we don't often share it and by our not sharing it we create a facade of perfectionism that does't really exist and in the end hurts us." How can we receive help if we never have the courage to make our concerns and worries known to another? And it does take courage among other things, including trust. I have realized that there is always a risk in vulnerability. I can't say that I've had strictly positive experiences in opening up, but I have found that for me personally, it's nearly always been worth the risk.  I have been humbled and genuinely surprised by the kind response that I receive from others, and always find that they are grateful for being a trusted source. More often than not, these trusted individuals also confide in me in return.

I just heard my own voice ask, "Why are you writing about this??". I'll answer my own question. I'm writing about this because life is hard, and for the longest time I thought that I was the only one who was living with pieces of a ruined life. I'm writing this because I realize that we are linked together not just by our humanity, but through our suffering as well, and because I see that there is great potential strength available to us if we have the courage to discard the "facade of perfectionism". I'm grateful for those who have helped me to survive my own hardships in life, and mean it when I say they have been lifesavers. I didn't land in paradise, but it seems the more I realize what is still within my power, and how many loving people are around me, just trying to get through like I am, the more my cold winds give to warmth, and the more my dark skies give to the sunshine.