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.

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.

Saturday, July 5, 2014

The Dream Carson

As you all know, I hit my six-month mark of injury on June 30. I cannot believe it's been six months, and it seems like so much shorter… Like only yesterday that I was injured. Being at the half-year mark has caused me to reflect upon what I have or haven't accomplished in that amount of time, or how I have or haven't recovered.

In terms of physical recovery, I have much more feeling all over the right side of my torso and left foot. I have back muscles all along my spine and down to my pelvis that are working or firing, some obliques and abs, and some upper glutes. The back muscles are definitely stronger than before, while the others I mentioned are just coming on, or are barely twitching as I struggle to accomplish an exercise. Unfortunately, most of those muscles are not even close to being strong enough yet for functionality. Yet.

Emotionally speaking, I have to admit that I thought that things would have settled much more than they already have. I would have believed that over the course of six months some things would normalize, and that the emotional trauma of such a significant and negative life change would have faded some. Unfortunately, that hasn't happened the way I have wanted it to.

I had a text conversation with a friend about it just last night actually.

Me: "I wonder how many times I can feel it all over again just like it's brand new… My whole life? Well at least I don't have to think too much while I'm asleep. It's my only break."

Friend: "Yeah, what a way to live, right? Looking forward to sleep as an escape."

Me: "Yeah..."

Friend: "Sorry, I'm not helping. I hope you dream about something wonderful."

Dreams actually happen to be some of the only moments when I feel like I did before… let me explain. A few weeks ago I had a terribly difficult day, and went to bed pretty depressed. When I have feelings that are overwhelming, it helps me to write them down and so that's what I did that night. I debated for a while as to whether or not I would share it, but it adequately describes how I feel in some aspects, and especially how I have felt over these past months. I have been tempted to edit some of the things I wrote, but I have decided to share it as it is in my journal, with very few alterations. I'm constantly tempted to sugar-coat things in writing, but I want to stay as real and genuine as possible. 

Dream Carson:

"Despite reality, there still exists a Carson who is strong, tall, happy, and faith-filled. He lives on as he did before, just as passionate, hopeful, and loving as ever... he's happy. He's happy. But you will not find him at the home where he used to live because he no longer lives there. He's not at school and he's not at work... There's really only one place he can be found. This Carson only lives, only runs and dances through the temporary mists of sleep. He lives in dreams alone. The sight of him is glorious, as he is exactly as he should be. He is kind and funny. He cares about you and the light of life shines in his eyes. He is, of course, standing, but rarely standing still. He loves to run and leap and tumble through the meadows. This is the Carson of dreams. The true Carson, but one of the past. 

As quickly as he is to be found, he is to be lost, disappearing with rise of every sun. A sun which ushers in the morning, when wakefulness presents, yet again, the true nightmare of reality. The fading of the Dream Carson invites the existing Carson. Only, the existing one hardly seems Carson at all. He is none of the things the Carson of dreams is made of. In fact, it is as though they are opposites in so many ways.

This Carson is not happy. He has no hope. Not in life, not in himself, and not in God. He is a hostage to a broken life, haunted forever by the Carson of his dreams.  His life seems quite a tragedy. The tragedy is that he was once the Dream Carson . Born with gifts and passion to give, but crushed by the cruelty of life, injured in a brutal way. 

Opportunity and potential were his future, blessed with the tools to succeed... But success never came and he was thwarted in his life's mission. The simple mission to find peace and happiness. Unfulfilled dreams became his reality. As if given the desire to sing, but never the voice to do so; given the desire to soar, but never the wings to fly. The individual once filled with vitality and happiness slowly, and over time, faded away... The once ever present smile on his face is now marred by the permanent stains of despair. A voice once filled with laughter and joy is now replaced by wails, and pathetic sputtering sobs. Once grinning eyes are now lifeless, dark-circled and bloodshot. An immobile body lays in the place of a mobile one, crippled and atrified.

Hope is now hopelessness. Faith is now faithlessness. From trust to distrust, and from desire to apathy. Imploring to live replaced by the pleading to die. This is Carson of Life. He wanders aimlessly, miserably. He seeks in vain that which he cannot have, but so desperately wants. He goes day to day, hoping against hope to find Carson of dreams while the sun still shines. Could ever a human desire something so badly? He exhausts his strength and all resources in his search, but no matter the day or outcome, he is always left with a familiar sense of loss as the day slips into night... For Dream Carson only dances through the quiet of sleep, and is not found while the sun shines. Only when reality succumbs to dreamland, does he run through the grass again. He laughs until he cries. He plays the everlasting day away. He stands and he is happy... He is finally happy again, and the relief of finding him again in such a joyful state goes beyond expression.

But Dream Carson fades quickly alongside the mist of slumber, always evaporating with the impending arrival of the sun. A sun that brings pain. A sun that brings the execution of hope... A sun that brings Hell. For the sun brings with it dawn... and another day of the reality that murdered the Carson of my dreams."

Now, because I wondered if this were too much to share, I sent it to a few people for feedback before posting, and there are a couple of things that I wanted to explain. What I was really trying to express was that the Carson I used to know was happy, and the loss at feeling like that very Carson has been destroyed. These feeling stem in most part from my injury and the difficulty I have had in finding things that bring me happiness. I wasn't trying to say that I don't feel like I have worth, but that I long to feel inside like I used to. I still feel passionate about many things and I still care about and love people.  Admittedly, I was a bit worried that by posting this some would feel like I was fishing for certain comments or feedback. Not the case. 

These feelings have been the common theme of these first six months. I suppose that the reason I get up every morning is because I am determined to find that Carson again. It's similar to what I wrote about in my "Shattered Pearls" entry. I wake up every day hoping to find pieces to my shattered pearl. Sometimes I feel deeply that I seek an impossibility, but I still seek. I recognize that with time comes experience, recovery, and possibility. I also recognize that my happiness must come separately from my recovery. If my happiness relies on my physical recovery, then it is dependent upon something that is out of my control, and that simply cannot be. I must be the one in control of my happiness.

I hope that the next six months are more fruitful in recovery and purpose than the first, and you better believe that I'll do everything within my power to make that a reality. So, here's to the next chapter!

Thursday, July 3, 2014

A Million Thanks Would Never Be Enough (parents)

Steve:  Six months have passed since Carson's injury, and through this time the outpouring of support has been nothing short of incredible. Now that we are settling into a new and difficult long-term family rhythm, we have struggled to know how to thank everyone who has been involved in support since the accident, and have concluded that we simply can't thank everyone at the level we would like.  How does one thank people who have donated their time and money who wish to remain anonymous, and other unsung people who have been working in the shadows many hours to make events happen such as "Anything for a Friend"? The task would be overwhelming and we collectively feel inadequate in our effort to recognize everyone who has had a hand in helping our son. But we are grateful. We know the effort that goes into these events with all the organizing, coordination, and hours upon hours of preparation, taking away personal and family time from those involved. It makes us feel guilty in many regards. All the demands that have transpired over the past six months have been crushing. The myriad of things to worry about and coordinate have been nearly a full time job. At times we questioned our ability to get everything done that was needed and it has only been through the help of others that has kept our heads above the rising water. We do wish to call attention to the highlights of the support for our family.


Before discharge from the hospital, certain modifications to the house were required. Occupational Therapists made several visits to the house with recommended changes. This was difficult because we really could not test or try out what was going to work because we didn't know what changes were going to happen with Carson's functioning. Shortly after the accident, representatives for "Anything for a Friend" presented Carson's case for consideration to Home Depot for possible assistance with home renovations. Home Depot has a program that partners with the United Way of Northern Utah to locate recipients for their efforts and resources.  In our specific case, not only did they respond to the needs of Carson, but also recognized we are a veteran military family. Very quickly, the two managers of the Riverdale and Layton Home Depot's (Andy Olsen and Derek Carver respectively) came to the home and began to make plans to renovate the basement bathroom and change the flooring in Carson's room and hallways. The amount of effort that took place in a incredibly short time was staggering. We had a small army of Home Depot personnel come to the house on a rainy day to get the major portions of the renovations completed.  They installed flooring and continued to work on bathroom/basement modifications.  Later, both store managers and the regional manager came in and finished off the cabinetry (see second photo below).  Of course, Ken Taylor (second from left in first picture below) may just as well have slept at our house he was putting in so many hours.

Before Renovation

After Renovation...... wheelchair accessible!

From L-R: Andy Olsen (Riverdale Home Depot), Derek Carver (Layton Home Depot), Joe Alvarez (Regional Manager), the ultimate workhorse, Ken Taylor (Riverdale), and Carson

Steve: In the midst of all of this I had to travel for business trips. When I left before this renovation project, my basement looked the same---like a storage room with sick green carpet that had been there a million years, old paint that came with the house, poor lighting etc. Five days later I hardly recognized the same basement. Carpet gone, new paint, and cabinets installed. I was dumfounded. Little did I know that half the neighborhood had been in the basement helping to paint, alter Carson's room to accommodate his wheel chair and a host of other things. In the ensuing nights, I would go down to the basement and find someone in there on their hands and knees painting baseboard or putting a second coating of paint on the wall etc. Many times people would let themselves in through the north entrance to the basement and I didn't even know they were down there. I still shudder to think what verbal family transactions they heard among the chaos. It was truly an "all hands on deck" effort.  We know that it took personal and family time away from these people and we felt truly blessed.

L-R: Linda Romney, Kathy Smith, Becky Taylor and Diane Austin
L-R: Frank Romney, Brent Florek and Judd Taylor

Camille: During the week that  Home Depot was working feverishly on the bathroom trying to finish in time for Carson's return home, we had neighbors come in who expressed a desire to help make the basement user-friendly for Carson. I listened to their ideas and then shared our thoughts of what we hoped to do to the basement. Unbeknownst to me, Ken Taylor (Riverdale Home Depot) had heard the conversation from the next room and came in and said, "I think we can make that happen." I couldn't believe it since we didn't really have the time and ability to take on a larger project on our own.  Ken talked with his manager the next day, they worked some numbers and he came back and said they could provide supplies for our neighbors to complete the work. I had several concerns and worries about pulling a makeover off that fast (one of them being my husband was gone), but they all pressed forward knowing it was now or never since Carson would soon come home. I was told "This neighborhood knows how to mobilize!" and they were right. They took it into their own hands and in about a week's period of time the majority of our basement had been renovated. I was so humbled watching these proactive, positive people that I posted a Chinese Proverb on the front door for all those who were coming and going. It read, "THOSE WHO SAY IT CAN'T BE DONE SHOULD GET OUT OF THE WAY OF THOSE WHO ARE DOING IT."   I didn't really need to have my faith restored in our community (especially after the wind storm of December 2011)  but I was impressed beyond words.  I had someone ask me if the additional chaos that comes with a major construction project was adding additional stress to our already upside down life. No.... it did just the opposite for me. I felt an amazing spirit of charity in our home that buoyed me up. When I would come home from the hospital at the end of a long day, I would see more progress in the basement and longed to know who had been there. Our home was blessed in more ways than one by these people! When Carson came home he was greeted to a neighborhood full of blue ribbons, "Welcome Home" signs and a newly remodeled  basement living arrangement. Knowing Carson would have difficulty coming home (which he did), the changes in his environment have made this transition easier.


Steve: Even though "Anything for a Friend" is the name of the formal fund raising organization, the name also encapsulates for us the remarkable generosity shown by people donating their time, money, individual talents and sacrifices for another person. These include the leaders of organizations, individuals, anonymous donors, friends who know Carson, and also incredibly, those who don't know him!   

Spinal Cord injuries are cruel. They leave the person intact intellectually and personality/character remains just as it has, but now without bodily functioning below the injury level. I knew from the outset of Carson's injury what the long term ramifications would be. This is not a terminal illness and the battle will rage for the next 50+? years. If statistics are any indication, the future is full of emotional and physical challenges, some of which can be life threatening. The cost of adaptive equipment has already been astounding without even entertaining the future of complicated medical issues that Carson has already written about. 

That being said, we would like to highlight the fundraising that has taken place, because quite frankly, it is the means to take care of the necessary demands of the injury. Those who have donated have anticipated this, and given generously of your hard earned money. Thank you! We know it is a sacrifice to give in tough economic times. It underscores the goodness of people, exemplifies charity, and represents everything that is good about human beings who have the capacity to love. Within days of the injury a neighbor set up a way to contribute to Carson through the blog site, herself having a disabled son and anticipating the costs involved. This, along with the movie event and amazing fundraiser efforts through "Anything for a Friend" that included many sponsors and donations of businesses and goods, filled us with amazement at people's generosity.

Ashley and Patricia Barson made 2,400 bracelets for Carson's Event....over 400 hours!
Talk about doing  anything for a friend  :) 
Weeks prior to the event  Teena Stucki and Lori Florek  organized  a very hard working
"Team Carson."
The race begins!
The food was generously catered by the Cottam Family/Bella's Fresh Mexican Grill
The Kid's Corner
Dinner and Auction Pavilion
Final balloon launch!
Becky Anderson (director of Anything For A Friend) w/ Carson @ Lorraine's Event

Camille:  Carson's event was amazing... a day we will never forget. In some ways it was hard to take it all in and we struggled to comprehend such generosity. We were able to relate to what past recipients of "Anything For a Friend" have expressed when they said they felt embarrassed and  unworthy.  For our family we just wanted to see the event go well for those who had put in so many hard working hours on behalf of Carson and our family. I know the greatest desire of the organizers of this fundraiser was wanting people to come and feel the spirit of the day. We felt it. We saw a community unite in goodwill hoping to make a difference in someone's life. This time it happened to be our son, for which we are eternally grateful. Now that we are 6 months out from Carson's accident we can look back and count literally hundreds of acts of service of every kind. We have felt every positive vibe you have sent our way and we have survived because of your love and support. We know we will continue to struggle to help Carson through his  hard times, but we are not alone in this battle. We have friends.