I went and visited Carson last night. We had a great conversation about all that has happened over the last month, how things have changed and where they are going. I never cease to be amazed by his outlook and faith. I've never seen someone who is so hopeful in such difficult circumstances. Carson wanted to make a video with some thoughts that have been on his mind lately as well as an update of his progress both physically and spiritually. Enjoy!
Carson's One Month Update
Friday, January 31, 2014
Wednesday, January 29, 2014
Spine Notes 2: Paralyzed, paralyzed, paralyzed.
So, what are Spine Notes anyway? Spine Notes are actually entries from my own personal journal, written initially for me, and only me. Because I don't have the ability to type very well due to my limited finger and hand function, I use my iPhone to document my feelings during this time in the hospital. All of those feelings have ended up being recorded in the notes part of my phone, and are under the label "Spine Notes". Ultimately, Spine Notes is a glimpse into what I am experiencing on a personal spiritual and emotional level. I share these personal feelings because I think they give authentic insight to what I'm going through.
As I have faced other significant trials in my life, writing has been a great source of help to me. It helps me to put a finger on my feelings in a more concrete way, and it also helps me find some solution to what I'm feeling, or exposes some flaw in my perception... anyway, Spine Notes 2.
Paralyzed, paralyzed, paralyzed.
Last night in the wee hours of the morning, I lay in bed muttering that same word over and over to myself. I wondered if the more I repeated that to myself, the more I would actually believe it. It is still so difficult for me to believe that I am actually paralyzed.
This whole predicament is still so bizarre to me. I continue to struggle to realize and accept that this is life. I keep remembering that it was only a month ago that I was walking around, minding my own business, practicing, and getting ready for another semester at school. 2013 was without question the hardest year of my life, and I was happily looking forward to starting 2014 with a clean slate, ready to move forward into new and exciting territory. I had made plans and set personal goals in nearly every aspect of my life, being spiritual, mental, social, and physical. I was ready to go! Just as I was ready to usher in a brand-new year… SNAP. Everything changed in a fraction of a second.
I recently had a break between my occupational therapy and physical therapy appointments. My dad and I went down into the lobby to get a change of scenery. We ended up discussing some of the difficulties of my paralysis. I assure you that the list was more than just a few points long, but one of the things we discussed was how difficult it was to have everything change without warning. There were no symptomatic signs, no predispositions, no gradual lack of function, nothing... It went from all to nothing in the blink of an eye. From one moment to another, my life changed in some of the most fundamental ways possible.
As I have pondered the events of December 30th, I have recognized a significant principle that has helped me through every step of my journey. No matter my circumstance, no matter the nature of the accident, no matter the results of the surgery, no matter the function I gain back, I have the decision to either be proactive or reactive to every circumstance. I can either choose to be the captain of the ship of life, or I can be one of a million barnacles just along for the ride.
For me personally, this is something that I constantly have to battle. I fight to prove to myself that I am in charge, and that I won't let this bring me down. I'm stubborn and proud, and absolutely determined to come out victorious.
I sat a few days ago in bed lamenting and worrying (and crying) about the fact that I have not gained any function back yet. I didn't have any PT or OT, so I just kind of stared at my food for a long time thinking about life, and feeling very sorry for myself. Then, without warning almost, I heard my own voice say in my head "...What are you doing?? How long are you going to sit here and wallow in self-pity??" I consequently picked up my fork, turned on some music on my iPhone, and began eating.
It seems like this principle has been brought to my mind over and over again. It reminds me of a beautiful scripture that a friend recently shared with me. "Therefore, cheer up your hearts, and remember that ye are free to act for yourselves--to choose the way of everlasting death or the way of eternal life" (2 Nephi 10:23)
I learned this lesson initially the moment I broke my neck. Within 10 seconds I was very aware that I could not move the majority of my body. With that realization came an almost instantaneous flood of thoughts into my mind. I immediately thought about the things that I might never do again. Images of myself walking, running, swimming, and a generally active Carson ran through my mind. I knew that that part of my life was gone.
Then, as though something or someone was trying to abate my feelings of despair and anguish, my mind was suddenly filled with a general image of beloved family and friends. This was accompanied by an overwhelming feeling of love both for and from them.
This experience lasted until my father came to my aid. We spoke briefly before I said to him through many labored, shallow breaths, "Dad...it's okay... I still have the love of my family... and friends...That's all that matters...It's okay!"
I cry easily as I recall the tender mercies within the first few moments of that hellish experience. I am absolutely certain that it was the Spirit of God that accompanied and comforted me during that catastrophic injury. In fact, because of that comfort, I do not feel negative feelings when I recall the accident. I am positive that I will never have nightmares of that day, because of the peace that lingered with me as I lay limp and useless. I simply do not associate feelings of trauma to that very traumatic accident, and I thank God for that and know that it was a miracle.
I know it was the Spirit who reminded me of what has always mattered most in my life, and that happiness is always available. I also know that it is He who has taught me through this journey that I am the captain of my soul. He has taught me to look to him, and to trust in his ways. Trust. I have never thought so much about a single word.
My journey may take me through hell, but I will never yield to the howling winds and raging waters that seek to capsize me. I will take control of the helm, and drive my ship fearlessly toward the horizon in an undeviating course to Paradise.
"Yea, I know that I am nothing; as to my strength I am weak; therefore I will not boast of myself, but I will boast of my God, for in his strength I can do all things..." (Alma 26:12)
Be fixed in your purpose, for Satan will try you;
The weight of your calling he perfectly knows.
Your path may be thorny, but Jesus is nigh you;
His arm is sufficient, tho demons oppose.
His arm is sufficient, tho demons oppose.
(The Time Is Far Spent, Vs. 4)
Tuesday, January 28, 2014
Rehab: Week 2
Week two of rehab has been completed! The video attached is a video of physical therapy. At some point in the future I will post some things from occupational therapy as well. I have to admit, this week was far more difficult than I thought it would be. I thought that things would get easier for me medically speaking and that my body would acclimate faster to some of the major changes it's going through.
I continue to have severe low blood pressure as well as lots of nausea. Unfortunately those two have become BFFs and one nearly always begets the other. For those of you who are familiar with blood pressure numbers, I achieved a new record low this week! I came in at 57/35... And I was still conscious! That's right. For those of you who don't know, typical blood pressure should be around 120/80. I suggested to my physical therapists that we have record holders names and blood pressure numbers recorded somewhere on the wall within the physical therapy gym. We'll see if I can get it to happen…
All joking aside though, this has all been extremely frustrating. So much of what I do is determined by how high or low my blood pressure is that day. No matter how hard I'm willing to work, I simply can't perform in therapy if I can't stay conscious. I have also been experiencing some intense nerve pain that also impedes my progress. Most of these things are out of my control, and I just have to wait until they pass. I can't say I haven't shed some angry tears of frustration.
This week I continued to work on the same skills as last week, with some variation. I am making good progress, but sometimes (always) struggle to see my small victories (my dad has occasionally said to me, "Carson, you are an impatient man…" It's true). I would say my greatest gains have been made in my hand strength and dexterity, which has been encouraging. I have also increased in mobility during my PT sessions. Let's hope that next week yields some better results.
This is a clip of me continuing to practice my balance, but in a slightly more difficult way.
Sunday, January 26, 2014
The Flute Returns: Carson
This afternoon I was slumbering away when I woke up to see my long-time flute teacher sitting across the foot of my bed. After a few minutes of waking up, I began to talk with her. About mid-conversation she asked if she could give me something. Of course I said yes, and she proceeded to walk over to the side of my bed with a black case under one of her arms. She opened it up to reveal a beautiful black, plastic flute. Now, I am not talking about a recorder here, but a legit flute with mechanisms, authentic length and tube width, etc.
Just last week I asked my sister to bring me my solid metal flute to see if I could play anything at all. I quickly realized that I could not even lift the instrument because of the great weakness in my hands. A bit disgruntled, I put it away and had my sister take it back home until I thought I was ready for it, which in my mind was no time soon. As I held this new black flute, I realized that it would be the perfect steppingstone into playing my real flute again!
Nancy informed me that she and other mutual flutist friends collaborated to come up with the wonderful idea of this unique flute. I thanked her profusely, and thank each one who was involved in giving me this amazing gift. I really can't tell you how much it means to me. I am certain that this gift will bring me joy through difficult times.
When I have a new flute student, the first song I teach them to play is "Hot crossed buns". I thought it would be appropriate for me to do the same, seeing as I am basically a beginning flutist again. I wish I could play it as well as they do! It is obvious that I am still lacking breath control and lung capacity due to my abdominal paralysis, but I am certain that these things will improve immensely. Please enjoy my crude rendition of "Hot crossed buns" at the end of the blog. :)
Nancy and I have quite a history together, and she has proven to be one of the most influential people to aid in the development of my character. When I first came to learn from Nancy, I had many bad habits to overcome, but she was tirelessly optimistic and patient with my progress. She always believed in me, and I always knew it. There was never a moment when I wondered if Nancy thought I could succeed. She recently wrote me a letter that touched me deeply and boosted my spirits. I thought it would be appropriate for me to share that letter at this time. Enjoy.
Love, Nancy
Hot Crossed Buns
Thursday, January 23, 2014
Parents Working Through: Dad
After speaking with Carson, he wanted to include our thoughts as parents in his journey. I was initially reluctant since our family has been traditionally private, but it is part of what is happening. We fully understand that Carson is at "ground zero", but there are ripples that extend far out that put us as parents in a different world than he is experiencing. Everybody in the family is grieving at a different pace, sometimes dramatically so. I hope to capture some of this from our perspective. We now share the experiences of those parents and children who have already been though similar ordeals, and hope to assist those who will follow. This isn't a sympathy seeking effort, but rather an attempt to capture some of how this injury has impacted living. Hopefully sharing this will have some benefit somewhere. It's long, so if you want to check out now, feel free.
How do you describe an event that took approximately 2 seconds to occur that would alter life so dramatically? As a parent, how do you bring some sort of closure to having a 6'4"+, 200 lb son, superb athlete, gifted musician, full of hope in the prime of life, to now watching him struggle to even roll over? As Carson said two days ago, "I feel like a little baby again----learning to roll over and wearing a diaper." I have to slink off into a dark corner to fight back tears. I have often thought that a death may be easier to deal with than watching him struggle day after day to even move his body around. The fact is I can't stand to watch him suffer. The nights immediately following the injury are the worst. You wake up abruptly about every 30 minutes and your heart feels like it will jump out of your chest as the fog of sleep burns off to the realization that your son is paralyzed. You clock watch until it is evident that you'll never sleep and finally get up to wander the house like a zombie trying to figure out why this had to happen, the whole time lamenting the myriad of losses for your son. Your brain screams, "This isn't supposed to happen us!" Why? Then you snap back to reality and think, "We have no special status; why not?" The guilt-inducing "woulda, coulda, shoulda" vein of thinking further intrudes into the situation. You magically think that somehow you should have had some sort of impression, some small tidbit of information or break in the sequence of events that would have altered the final outcome. Nonsense. Sometimes there just aren't any answers and you feel like you're losing your mind because there is no way out, no option for you or your son. The carnage is done, deal with it. The accident replays in your head night after night--play, rewind, play--and the heartbreak stings the same each time. It's like standing on the beach looking at the expanse of the ocean along the horizon, intimidating, full of power. The emotional waves of anguish come to shore, time after time, no stopping, no pausing, steady, and there isn't a lousy thing you can do about it. You are totally powerless. You may get distracted and even forget for a second about what has happened, but when you remember, it is like someone hitting you in the face with a bat. It is surreal. You get a report over the phone from a technician in the middle of the initial surgery to decompress Carson's spine who provides real time updates. He relates that the procedure is progressing and that the surgeon is placing cadaver bone into your son's neck while you hear the bone saw screaming in the background. Days later, you look into the surgeon's eyes as he approaches you in the waiting room after a second 5 /1/2 hour surgery to remove the exploded bone fragments from your son's neck. You're looking for some nonverbal cue in his face that will hint of a favorable prognosis of walking again. The whole process is so FRAGILE. Small words either sink you or keep you afloat. You think, "Come on, Doc, throw me a bone---tell me something positive!" It's a hammer blow to the stomach to hear his words as if they're slowed down, "The spinal cord is severely damaged." Another surge of adrenaline and your boat starts to take on water again.. Hurry up and wait is the order of the day for any future prognosis. As crazy as it sounds, you are totally overjoyed to see your child in the Surgical Intensive Care Unit looking like a pin cushion, drainage bags full of blood, sucking sounds from suction machines, bells, beeping devices, people shuffling in and out checking him, rolling him over, tubes in several orifices, and you're happy he is alive. You go home exhausted with vampire eyes deep into the night and the whole process starts again whenever you open them. You watch your younger children play and laugh and are grateful of the insulating buffer of youth and innocence, but they exhibit things you haven't seen before. Emotions run high and everything is heightened--anxiety, anger, restlessness, physical complaints, not wanting to go to school or do sports. I watch my nine year old daughter old faint in the ICU while holding Carson's hand, stating to me after I catch her before she hits the ground, "Daddy, I can't see or hear anything" when I hold her up. And she faints again, totally perplexed as to why. Thirty minutes later she's running and playing in the hall, again swept away in the magic of youth. I watch my youngest son rise to the occasion when the pressure is on, delivering stellar grades amidst the chaos, but feeling restless and cagey at home, often remaining safely distant when we visit Carson. I contact my 20 year old son serving and LDS mission in Florida to deliver the bad news. Somehow he knew it was coming, he says. He takes it standing up and knows his brother is up to the fight, resolute in his assessment of the situation and filled with faith. As I complete this sick notification chain by contacting my oldest and his wife in Washington D.C., I can't help but think of the comment by the physicist J. Robert Oppenheimer where he quotes the Hindu scripture Bhagavad Gita following the first successful atomic bomb detonation in White Sands New Mexico......"I am become death, destroyer of worlds." I can't escape my 17 year old daughter fully feeling the results since she also witnessed the accident, and tell her that her birthday just four days after isn't going to happen and that she needs to focus on returning to school and trying to establish a routine once again. We watch her sleep her birthday away on the ICU waiting room couch only to return to the house later the same night to find a birthday banner across the garage door, the house and her room fully decorated by her friends and church leaders, paper hearts cut out and placed all through the house with encouraging writings from friends, coaches and leaders on them. You are grateful for the goodness of people and the depth of compassion that is shown and you watch her eyes fill with tears. You have to rise to the occasion and once again establish a family routine. Trying to act normal for younger children is remarkably difficult when your heart is heavy. It's like being in acting school. You know you have to go back to work when you really want to be by your child's side. It is no mystery now why you have anxiety when the Life Flight helicopter passes over the house like it has hundreds of times previously over the years, only this time en route to pick up someone else in their time of need. The repeated nights spent in the hospital have a numbing effect. You watch your child's body respond to paralysis, being totally helpless to abate his misery, and instead feeling like some impotent bystander while he begs for the pain to stop due to the electrical firestorm of nerve pain that rages in his body. Fevers, blood pressure problems, nausea, vomiting, the threat of pneumonia and aspiration that could easily kill him, sickness, urinary tract infections, bed sores. You nearly go crazy and think, "Now what was I worried about before in life?" It all seems trivial now and totally insignificant. In the night when I'm sleeping next to his bed I hear him gasp for air with an oxygen mask on, pleading, "Dad, can you help me?" We watch his friends also take turns spending the nights with him, talking to him, soothing him, just being present so that he knows someone is there. Watch dogs resolved in their duty. Where do they get their commitment? Visitors come and you see their countenance change when they see the wreckage, the disheveled body with hollowed out eyes and 35 lbs of weight loss. Your marriage is strained due to grieving at a different pace, and you have to divide and conquer the growing and endless list of things to be done, feeling like ships often passing in the night or early morning. You have to accept reality despite spiritual and philosophical late night discussions about suffering, why bad things happen to good people, whether god intervenes, the randomness of events vs. a purpose to everything. It gets complicated. Too complicated. Must simplify. Waters are muddied as you try and figure out the big picture, but one thing is a constant reality: your heart aches in an indescribable way for your child and there seems to be no relief in sight.
And then spider rays of light get through.....
It comes through people. It comes in the form of nurses and other medical care givers who are there for a reason. Their optimism. If you only knew how you affected your patients! It comes from the two physicians who visited Carson early on and asking him what he wanted to accomplish. When Carson told them he wanted to play the piano and flute, they looked at each other and stated, "I think we can make that happen." Carson's spirits soared. It comes in the form of letters written by friends, family, leaders, mission presidents, the people he served in Chile, and even people who he hasn't met. I watch my son shed tears from closed eyes as these letters are read to him. He feels your love and prayers. It comes in the form of immediate family who provide blessings and endless support. They have known him well as a little boy and know our family needs, and his needs, as brothers and sisters, grandparents, and extended family. I watch my 93 year old father visit Carson in the ICU, his old battle hardened hands that have known loss, war and despair beyond measure, take my son's hand while whispering, "We'll never quit." My father in law goes on a 48 hr. fast even as a diabetic and in poor health, to exercise faith, perhaps at his own peril. It comes through having food dropped off at the house and the confidence in knowing that your neighbors and church ward members will take care of things behind the scenes that you couldn't possibly attend to. The outpouring of love is staggering to us. The monetary contributions simply fill us with gratitude and reduce the anxiety and pressure of changes that will inevitably be mandatory to the home and environment. The light comes through others fasting and praying----on Sundays---on New Year's Eve, while the rest of the world celebrates through food and drink. It comes through visitors like Luke and Sydney Jepson. Luke was completely paralyzed when he rolled his truck some 4 years ago and simply comes in to visit, never having known Carson. He delivers his experience to a silent packed room of visitors and concludes his story by getting out of his wheel chair and standing tall like the phoenix rising from the ashes. Can't let hope die. Hope comes through the rehabilitation team led by who is arguably the finest spinal cord injury physician in the intermountain west. No rosy picture here or unrealistic outcomes. They work Carson hard and he works hard. The two physical therapists remind me of the "dynamic duo" who will teach my son new ways of doing old things, constantly pushing and encouraging, expectations high. They take time to listen, and what a gift this is to my son. Occupational Therapists make his hands fatigued with work to strengthen them for another day so he has confidence in motor functions spared. The compassion that is shown him by his nurses and aids, all of whom he depends on for assistance encompasses all that is good about people. I know he is grateful because he tells me. As a friend of mine told me recently, "We can do hard things." He is right, and we will. Ultimately, I am reminded of the simplicity of the Savior's response to a question posed to him in Matthew 22:36-40, when he was asked "Master, what is the great commandment of the law? Of course the first is to love God, and the second to love your neighbor as yourself. I am witnessing charity from others "loving their neighbor---my son--up close and personal and it is breathing life into him. It is giving him hope.
How do you describe an event that took approximately 2 seconds to occur that would alter life so dramatically? As a parent, how do you bring some sort of closure to having a 6'4"+, 200 lb son, superb athlete, gifted musician, full of hope in the prime of life, to now watching him struggle to even roll over? As Carson said two days ago, "I feel like a little baby again----learning to roll over and wearing a diaper." I have to slink off into a dark corner to fight back tears. I have often thought that a death may be easier to deal with than watching him struggle day after day to even move his body around. The fact is I can't stand to watch him suffer. The nights immediately following the injury are the worst. You wake up abruptly about every 30 minutes and your heart feels like it will jump out of your chest as the fog of sleep burns off to the realization that your son is paralyzed. You clock watch until it is evident that you'll never sleep and finally get up to wander the house like a zombie trying to figure out why this had to happen, the whole time lamenting the myriad of losses for your son. Your brain screams, "This isn't supposed to happen us!" Why? Then you snap back to reality and think, "We have no special status; why not?" The guilt-inducing "woulda, coulda, shoulda" vein of thinking further intrudes into the situation. You magically think that somehow you should have had some sort of impression, some small tidbit of information or break in the sequence of events that would have altered the final outcome. Nonsense. Sometimes there just aren't any answers and you feel like you're losing your mind because there is no way out, no option for you or your son. The carnage is done, deal with it. The accident replays in your head night after night--play, rewind, play--and the heartbreak stings the same each time. It's like standing on the beach looking at the expanse of the ocean along the horizon, intimidating, full of power. The emotional waves of anguish come to shore, time after time, no stopping, no pausing, steady, and there isn't a lousy thing you can do about it. You are totally powerless. You may get distracted and even forget for a second about what has happened, but when you remember, it is like someone hitting you in the face with a bat. It is surreal. You get a report over the phone from a technician in the middle of the initial surgery to decompress Carson's spine who provides real time updates. He relates that the procedure is progressing and that the surgeon is placing cadaver bone into your son's neck while you hear the bone saw screaming in the background. Days later, you look into the surgeon's eyes as he approaches you in the waiting room after a second 5 /1/2 hour surgery to remove the exploded bone fragments from your son's neck. You're looking for some nonverbal cue in his face that will hint of a favorable prognosis of walking again. The whole process is so FRAGILE. Small words either sink you or keep you afloat. You think, "Come on, Doc, throw me a bone---tell me something positive!" It's a hammer blow to the stomach to hear his words as if they're slowed down, "The spinal cord is severely damaged." Another surge of adrenaline and your boat starts to take on water again.. Hurry up and wait is the order of the day for any future prognosis. As crazy as it sounds, you are totally overjoyed to see your child in the Surgical Intensive Care Unit looking like a pin cushion, drainage bags full of blood, sucking sounds from suction machines, bells, beeping devices, people shuffling in and out checking him, rolling him over, tubes in several orifices, and you're happy he is alive. You go home exhausted with vampire eyes deep into the night and the whole process starts again whenever you open them. You watch your younger children play and laugh and are grateful of the insulating buffer of youth and innocence, but they exhibit things you haven't seen before. Emotions run high and everything is heightened--anxiety, anger, restlessness, physical complaints, not wanting to go to school or do sports. I watch my nine year old daughter old faint in the ICU while holding Carson's hand, stating to me after I catch her before she hits the ground, "Daddy, I can't see or hear anything" when I hold her up. And she faints again, totally perplexed as to why. Thirty minutes later she's running and playing in the hall, again swept away in the magic of youth. I watch my youngest son rise to the occasion when the pressure is on, delivering stellar grades amidst the chaos, but feeling restless and cagey at home, often remaining safely distant when we visit Carson. I contact my 20 year old son serving and LDS mission in Florida to deliver the bad news. Somehow he knew it was coming, he says. He takes it standing up and knows his brother is up to the fight, resolute in his assessment of the situation and filled with faith. As I complete this sick notification chain by contacting my oldest and his wife in Washington D.C., I can't help but think of the comment by the physicist J. Robert Oppenheimer where he quotes the Hindu scripture Bhagavad Gita following the first successful atomic bomb detonation in White Sands New Mexico......"I am become death, destroyer of worlds." I can't escape my 17 year old daughter fully feeling the results since she also witnessed the accident, and tell her that her birthday just four days after isn't going to happen and that she needs to focus on returning to school and trying to establish a routine once again. We watch her sleep her birthday away on the ICU waiting room couch only to return to the house later the same night to find a birthday banner across the garage door, the house and her room fully decorated by her friends and church leaders, paper hearts cut out and placed all through the house with encouraging writings from friends, coaches and leaders on them. You are grateful for the goodness of people and the depth of compassion that is shown and you watch her eyes fill with tears. You have to rise to the occasion and once again establish a family routine. Trying to act normal for younger children is remarkably difficult when your heart is heavy. It's like being in acting school. You know you have to go back to work when you really want to be by your child's side. It is no mystery now why you have anxiety when the Life Flight helicopter passes over the house like it has hundreds of times previously over the years, only this time en route to pick up someone else in their time of need. The repeated nights spent in the hospital have a numbing effect. You watch your child's body respond to paralysis, being totally helpless to abate his misery, and instead feeling like some impotent bystander while he begs for the pain to stop due to the electrical firestorm of nerve pain that rages in his body. Fevers, blood pressure problems, nausea, vomiting, the threat of pneumonia and aspiration that could easily kill him, sickness, urinary tract infections, bed sores. You nearly go crazy and think, "Now what was I worried about before in life?" It all seems trivial now and totally insignificant. In the night when I'm sleeping next to his bed I hear him gasp for air with an oxygen mask on, pleading, "Dad, can you help me?" We watch his friends also take turns spending the nights with him, talking to him, soothing him, just being present so that he knows someone is there. Watch dogs resolved in their duty. Where do they get their commitment? Visitors come and you see their countenance change when they see the wreckage, the disheveled body with hollowed out eyes and 35 lbs of weight loss. Your marriage is strained due to grieving at a different pace, and you have to divide and conquer the growing and endless list of things to be done, feeling like ships often passing in the night or early morning. You have to accept reality despite spiritual and philosophical late night discussions about suffering, why bad things happen to good people, whether god intervenes, the randomness of events vs. a purpose to everything. It gets complicated. Too complicated. Must simplify. Waters are muddied as you try and figure out the big picture, but one thing is a constant reality: your heart aches in an indescribable way for your child and there seems to be no relief in sight.
And then spider rays of light get through.....
It comes through people. It comes in the form of nurses and other medical care givers who are there for a reason. Their optimism. If you only knew how you affected your patients! It comes from the two physicians who visited Carson early on and asking him what he wanted to accomplish. When Carson told them he wanted to play the piano and flute, they looked at each other and stated, "I think we can make that happen." Carson's spirits soared. It comes in the form of letters written by friends, family, leaders, mission presidents, the people he served in Chile, and even people who he hasn't met. I watch my son shed tears from closed eyes as these letters are read to him. He feels your love and prayers. It comes in the form of immediate family who provide blessings and endless support. They have known him well as a little boy and know our family needs, and his needs, as brothers and sisters, grandparents, and extended family. I watch my 93 year old father visit Carson in the ICU, his old battle hardened hands that have known loss, war and despair beyond measure, take my son's hand while whispering, "We'll never quit." My father in law goes on a 48 hr. fast even as a diabetic and in poor health, to exercise faith, perhaps at his own peril. It comes through having food dropped off at the house and the confidence in knowing that your neighbors and church ward members will take care of things behind the scenes that you couldn't possibly attend to. The outpouring of love is staggering to us. The monetary contributions simply fill us with gratitude and reduce the anxiety and pressure of changes that will inevitably be mandatory to the home and environment. The light comes through others fasting and praying----on Sundays---on New Year's Eve, while the rest of the world celebrates through food and drink. It comes through visitors like Luke and Sydney Jepson. Luke was completely paralyzed when he rolled his truck some 4 years ago and simply comes in to visit, never having known Carson. He delivers his experience to a silent packed room of visitors and concludes his story by getting out of his wheel chair and standing tall like the phoenix rising from the ashes. Can't let hope die. Hope comes through the rehabilitation team led by who is arguably the finest spinal cord injury physician in the intermountain west. No rosy picture here or unrealistic outcomes. They work Carson hard and he works hard. The two physical therapists remind me of the "dynamic duo" who will teach my son new ways of doing old things, constantly pushing and encouraging, expectations high. They take time to listen, and what a gift this is to my son. Occupational Therapists make his hands fatigued with work to strengthen them for another day so he has confidence in motor functions spared. The compassion that is shown him by his nurses and aids, all of whom he depends on for assistance encompasses all that is good about people. I know he is grateful because he tells me. As a friend of mine told me recently, "We can do hard things." He is right, and we will. Ultimately, I am reminded of the simplicity of the Savior's response to a question posed to him in Matthew 22:36-40, when he was asked "Master, what is the great commandment of the law? Of course the first is to love God, and the second to love your neighbor as yourself. I am witnessing charity from others "loving their neighbor---my son--up close and personal and it is breathing life into him. It is giving him hope.
Tuesday, January 21, 2014
Rehab with Carson: Week 1
As of last Friday, I officially completed one week in rehab. I have to say that it might be one of the hardest things I have done both mentally and physically. You would not believe how draining it can be to try and touch your thumb to your pinky 10 times in a row!
Rehab can be both rewarding and discouraging. I sometimes feel like an infant trying to relearn very simple tasks. I practice rolling over, sitting up straight, passing a ball, moving from a wheelchair to another surface, and scooting along a mat. As difficult as it is physically, it is also emotionally draining to try and remain positive about my progress.
Because I still have no core strength at all, I am working to manipulate the 75% of my body that is simply deadweight. I have to practice using lots of momentum and upper body strength.
I will be posting a video each week to summarize the progress that I have made in rehab. These videos can be difficult to watch sometimes, but I think they give a realistic perspective on my experience in rehab. Enjoy.
P.S. I want to give a shout out to my occupational and physical therapists for the amazing work they do.
Carson
Friday, January 17, 2014
Perhaps the Toughest 6 Minute Video You'll Ever Watch
During my visit with Carson tonight a number of emotions went through my mind. The more time I spend with Carson the more I begin to understand, in a small way, the emotional and physical struggle that he is going through. Carson's positive attitude and love toward people is always the same. He smiles and laughs with everyone who visits him. He always has a story to share that leaves everyone in the room laughing louder than they probably have in a long time. I've never seen anyone who can lift a room while lying in a bed like him. Whenever I leave the hospital, I am always more inspired than before I came.
I know I'm saying things that everyone already knows. Those who have known Carson for a long time know that even through a life of arduous trials, Carson, even on his toughest days, leaves you wanting to be a better person. He makes you wish you were a little bit closer to the Savior, as he is. You repeat and ponder his profound words for days and weeks following your conversation. You ponder the immense depth of his soul. You wonder why you are so blessed to associate with someone so sincere and influential. You thank God just for the opportunity to interact with someone who seems so close to heaven. I know that if I were to say these things in his presence, he would simply shrug them off and compliment me even more.
Those who have known Carson, whether for years or even a couple of minutes, I'm sure you've experienced that same feeling of gratitude. I only give that introduction to this video to give a brief glimpse of the difficulty that Carson is going through but also those giving him care. It would be so easy to step in and help, but Carson, has determined to feed himself. This just gives a small idea of the constant struggle Carson goes through all day, every day. While there are moments of distress and despair, it is a miracle to me to see someone affront such an intense emotional battle with such optimism and faith.
This video was difficult for me to watch, but it gives a realistic look at the struggle that Carson is going through every day. It is awesome to see his determination to do it on his own from start to finish. There were a number of videos from physical therapy that are even more frustrating to watch. We probably won't post those videos. Please keep him in your prayers.
Carson's Meal Eating
I know I'm saying things that everyone already knows. Those who have known Carson for a long time know that even through a life of arduous trials, Carson, even on his toughest days, leaves you wanting to be a better person. He makes you wish you were a little bit closer to the Savior, as he is. You repeat and ponder his profound words for days and weeks following your conversation. You ponder the immense depth of his soul. You wonder why you are so blessed to associate with someone so sincere and influential. You thank God just for the opportunity to interact with someone who seems so close to heaven. I know that if I were to say these things in his presence, he would simply shrug them off and compliment me even more.
Those who have known Carson, whether for years or even a couple of minutes, I'm sure you've experienced that same feeling of gratitude. I only give that introduction to this video to give a brief glimpse of the difficulty that Carson is going through but also those giving him care. It would be so easy to step in and help, but Carson, has determined to feed himself. This just gives a small idea of the constant struggle Carson goes through all day, every day. While there are moments of distress and despair, it is a miracle to me to see someone affront such an intense emotional battle with such optimism and faith.
This video was difficult for me to watch, but it gives a realistic look at the struggle that Carson is going through every day. It is awesome to see his determination to do it on his own from start to finish. There were a number of videos from physical therapy that are even more frustrating to watch. We probably won't post those videos. Please keep him in your prayers.
Carson's Meal Eating
Wednesday, January 15, 2014
Spine Notes (Carson's First Personal Entry)
I am Carson's father. I have also been a clinical psychologist for 25 years and have seen my share of people suffering across the full spectrum of what life has dealt them---in prison systems, in war, and even working in a neurological rehabilitation unit similar to the one Carson is in now. I have a good baseline from which to gauge a person's coping. However, I can't be fully objective in this situation because my role of father comes first, and being a professional second. This injury has been crushing to us as parents, and we will never be able to adequately articulate what it is like to watch our child suffer. I'm not sure any parent can who has been through critical situations with their child. Again, in this regard we are not unique.
I've encouraged Carson to log his thoughts through this ugly chapter in his life as soon as he is able. I think writing for many people can have a cathartic benefit when emotion is put to written form. You'll notice that this blog has several voices in it. A voice from his friend who launched the blog, us as parents, and now Carson's. You'll also notice that the views of each have their own distinct flavor of each person's perception of what is going on. Now it is time for Carson to speak. More of these will come and Carson wants people to understand the journey---tragedy and triumph. While optimistic by nature, he has equally worked hard on skills that allow him to look at things from different perspectives---to understand people and situations in a more complete way and to also understand himself through others feedback. Leaders and friends have been invaluable in this regard. When we have had late night talks about a wide variety of difficulties long before this injury, I often felt like he was several steps ahead in his understanding of the "big picture." Optimism often turns to courage when waters get murky.
-Stephen Tueller
Here is Carson's first entry he sent me from his IPhone today:
Spine notes
The hard times in room 2607
It's Wednesday morning and I have been staring up at the ceiling with tears running down my face for hours... crying because I am mourning the loss of one of the most significant parts of my life. I am mourning the loss of my very being, and feel that many of my most sincere wishes for my life have been destroyed.
I had some extra time this morning and went on to Facebook to look at my blog to perhaps find some consolation and support. As I passed my own profile pictures I stopped to scroll through them. As I looked at picture after pictures of an upright, healthy Carson, I genuinely felt as though I was looking at someone dear to me who had passed away, and would never ever come back. I felt mourning at it's deepest. As I continued to scroll through the pictures, I stopped at a photo of myself slumped in a wheelchair. I struggled to recognize and accept the now crippled, deteriorating Carson staring back at me on the screen.
The most simple things have been taken from me. It's difficult for me to believe that my life is not ruined and that God has taken everything away from me.
I cry as I look down at my completely useless legs and remember what they used to do for me. Now they sit dead, usually splayed out in awkward angles, being completely worthless and cumbersome.
Once menial tasks have become indescribably difficult. I grit my teeth as I try to pick things up, because I sit and fumble, re-gripping over and over, coming from every possible angle to pick up something that weighs only slightly more than a feather. I cry as I imagine the future without the same physical freedoms I have enjoyed my whole life. I am bitter as I recognize that I will be someone's burden. The quality of my life has taken a dive and seems to spiral endlessly downward.
While I do mourn, I do not curse God. He can give, but he can also take away. I owe him my life in whatever form that may be. I know without a doubt that I am in his care. I believe that he has allowed me to face such great adversity because he knows of my love for him, and that I am willing to do whatever he asks of me.
I know who is in charge. I know who controls the stormy sea. I trust him completely. During this time, the words of Job have come to my mind and I hope to one day be able to as confidently express what he did. "Though he slay me, yet will I trust him."
I know that what he wants for me will ultimately be the best for me. I know that while he has taken the functions of my physical body from me, he is only strengthening my spirit, my character, my courage, my empathy and love, my faith, my sheer grit, and all of the most important aspects of being a human being. You can take away nearly every facet of my life, but you cannot take away my character and resolve to come through victorious. My agency and ability to decide who I want to be is absolutely immovable. Neither heaven nor hell can impinge upon my power to ultimately shape my destiny. The attributes and characteristics that define who Carson is do not change, and for that I am grateful. One of my New Year's resolutions was to make God's purpose my own. That is, to bring to pass the immortality and eternal life of man. God works in mysterious ways, and I will do my best to continue to spread the good news of the gospel of Jesus Christ. If I can do this best as an incomplete quadriplegic, then so be it.
Though I speak as though this will be a permanent condition through life, I sincerely believe in miracles. I want to believe with every part of me that I will walk again and that my now lifeless legs will be brought back to life by some miracle. There are times in the scriptures where the faith of an individual has been so powerful that God could not withhold himself from working mighty miracles. I want that faith.
I am grateful for this trial, in some way at least, because I know that this struggle will make me more the man I have always longed to be. There is much that I have to learn, and that's why the Lord allows me me to suffer. It is because he loves me. I know that I will walk and run again, once the Lord has accomplished his purposes through me.
I've encouraged Carson to log his thoughts through this ugly chapter in his life as soon as he is able. I think writing for many people can have a cathartic benefit when emotion is put to written form. You'll notice that this blog has several voices in it. A voice from his friend who launched the blog, us as parents, and now Carson's. You'll also notice that the views of each have their own distinct flavor of each person's perception of what is going on. Now it is time for Carson to speak. More of these will come and Carson wants people to understand the journey---tragedy and triumph. While optimistic by nature, he has equally worked hard on skills that allow him to look at things from different perspectives---to understand people and situations in a more complete way and to also understand himself through others feedback. Leaders and friends have been invaluable in this regard. When we have had late night talks about a wide variety of difficulties long before this injury, I often felt like he was several steps ahead in his understanding of the "big picture." Optimism often turns to courage when waters get murky.
-Stephen Tueller
Here is Carson's first entry he sent me from his IPhone today:
Spine notes
The hard times in room 2607
It's Wednesday morning and I have been staring up at the ceiling with tears running down my face for hours... crying because I am mourning the loss of one of the most significant parts of my life. I am mourning the loss of my very being, and feel that many of my most sincere wishes for my life have been destroyed.
I had some extra time this morning and went on to Facebook to look at my blog to perhaps find some consolation and support. As I passed my own profile pictures I stopped to scroll through them. As I looked at picture after pictures of an upright, healthy Carson, I genuinely felt as though I was looking at someone dear to me who had passed away, and would never ever come back. I felt mourning at it's deepest. As I continued to scroll through the pictures, I stopped at a photo of myself slumped in a wheelchair. I struggled to recognize and accept the now crippled, deteriorating Carson staring back at me on the screen.
The most simple things have been taken from me. It's difficult for me to believe that my life is not ruined and that God has taken everything away from me.
I cry as I look down at my completely useless legs and remember what they used to do for me. Now they sit dead, usually splayed out in awkward angles, being completely worthless and cumbersome.
Once menial tasks have become indescribably difficult. I grit my teeth as I try to pick things up, because I sit and fumble, re-gripping over and over, coming from every possible angle to pick up something that weighs only slightly more than a feather. I cry as I imagine the future without the same physical freedoms I have enjoyed my whole life. I am bitter as I recognize that I will be someone's burden. The quality of my life has taken a dive and seems to spiral endlessly downward.
While I do mourn, I do not curse God. He can give, but he can also take away. I owe him my life in whatever form that may be. I know without a doubt that I am in his care. I believe that he has allowed me to face such great adversity because he knows of my love for him, and that I am willing to do whatever he asks of me.
I know who is in charge. I know who controls the stormy sea. I trust him completely. During this time, the words of Job have come to my mind and I hope to one day be able to as confidently express what he did. "Though he slay me, yet will I trust him."
I know that what he wants for me will ultimately be the best for me. I know that while he has taken the functions of my physical body from me, he is only strengthening my spirit, my character, my courage, my empathy and love, my faith, my sheer grit, and all of the most important aspects of being a human being. You can take away nearly every facet of my life, but you cannot take away my character and resolve to come through victorious. My agency and ability to decide who I want to be is absolutely immovable. Neither heaven nor hell can impinge upon my power to ultimately shape my destiny. The attributes and characteristics that define who Carson is do not change, and for that I am grateful. One of my New Year's resolutions was to make God's purpose my own. That is, to bring to pass the immortality and eternal life of man. God works in mysterious ways, and I will do my best to continue to spread the good news of the gospel of Jesus Christ. If I can do this best as an incomplete quadriplegic, then so be it.
Though I speak as though this will be a permanent condition through life, I sincerely believe in miracles. I want to believe with every part of me that I will walk again and that my now lifeless legs will be brought back to life by some miracle. There are times in the scriptures where the faith of an individual has been so powerful that God could not withhold himself from working mighty miracles. I want that faith.
I am grateful for this trial, in some way at least, because I know that this struggle will make me more the man I have always longed to be. There is much that I have to learn, and that's why the Lord allows me me to suffer. It is because he loves me. I know that I will walk and run again, once the Lord has accomplished his purposes through me.
No Tube, Mo' Food, Life Is Good
I was able to go visit Carson last night. We had a great chat and letter reading session, it was good to see him in such good spirits. When I got there Carson said he was physically exhausted. He had a very long day of therapy which left the muscles in his hands, arms, and shoulders worn out. He proudly boasted that he had won a game of "jenga" in physical therapy against his occupational therapist. It sounded like a hard-fought battle. Simple exercises like that help him to gain control and steadiness in his hands while building strength as well.
Despite the announcement by his parents, Carson didn't receive very many visitors last evening. As word spreads that he is willing to see visitors, I'm sure there will be a long line of people waiting to see him every night.
When I arrived last night it was so great to see him without his feeding tube in! He hated that blasted tube! Looking back on the last couple weeks it is cool to see that the number of tubes attached to is body is down to zero. When I first visited him he could hardly lift his arms without getting some tube or cord caught on the bed, or under a blanket. There was a mess a tubes and IV's and whatnot strung across his body. Now, when you enter the room, you see Carson, with a neck brace and some cool looking boots, that's about it.
Carson is eating like a regular person. When I got to the hospital he was chowing down on a hamburger and vegetable soup with some root beer and creme brulee. He also topped it all off with some well deserved cheesecake. He had an extra root beer and offered it too me. It was difficult but also very cool to watch him struggle to pick up the can. It took him four or five tries to get a good enough grip to lift it off the table. He brought it close to him and grabbed a fork which he used to pry open the lid. His hands seem pretty weak, but as of yesterday, the nurses no longer assist him in eating.
I struggled having to watch him fumble with objects before finally being able to grip them. My natural inclination was to reach out and help him, but you can tell that he is determined to get stronger. It's going to be a test of everyone's patience to watch him go through recovery. Carson said he feels like he is a baby again because people celebrate when he does such menial tasks.
Carson's spirits are still high. He makes everybody laugh when they walk into the room, and he loves everybody who takes care of him. He has a couple thoughts that he wants to put into a video later this week. We will make sure that we get that posted as soon as possible. Before leaving, we wanted to take a picture of Carson in his bed. After taking one photo he made us readjust him in a number of ways in order to make him look good. One of his friends brought him some hair gel and he did his hair for the photo. While he was putting in the hair gel he said, "my vanity is still well intact despite my injury." His friend Shalese held up her phone so he could look at his hair while he did it. After about 15 minutes we finally got the final product for everybody! Enjoy!
Despite the announcement by his parents, Carson didn't receive very many visitors last evening. As word spreads that he is willing to see visitors, I'm sure there will be a long line of people waiting to see him every night.
When I arrived last night it was so great to see him without his feeding tube in! He hated that blasted tube! Looking back on the last couple weeks it is cool to see that the number of tubes attached to is body is down to zero. When I first visited him he could hardly lift his arms without getting some tube or cord caught on the bed, or under a blanket. There was a mess a tubes and IV's and whatnot strung across his body. Now, when you enter the room, you see Carson, with a neck brace and some cool looking boots, that's about it.
Carson is eating like a regular person. When I got to the hospital he was chowing down on a hamburger and vegetable soup with some root beer and creme brulee. He also topped it all off with some well deserved cheesecake. He had an extra root beer and offered it too me. It was difficult but also very cool to watch him struggle to pick up the can. It took him four or five tries to get a good enough grip to lift it off the table. He brought it close to him and grabbed a fork which he used to pry open the lid. His hands seem pretty weak, but as of yesterday, the nurses no longer assist him in eating.
I struggled having to watch him fumble with objects before finally being able to grip them. My natural inclination was to reach out and help him, but you can tell that he is determined to get stronger. It's going to be a test of everyone's patience to watch him go through recovery. Carson said he feels like he is a baby again because people celebrate when he does such menial tasks.
Carson's spirits are still high. He makes everybody laugh when they walk into the room, and he loves everybody who takes care of him. He has a couple thoughts that he wants to put into a video later this week. We will make sure that we get that posted as soon as possible. Before leaving, we wanted to take a picture of Carson in his bed. After taking one photo he made us readjust him in a number of ways in order to make him look good. One of his friends brought him some hair gel and he did his hair for the photo. While he was putting in the hair gel he said, "my vanity is still well intact despite my injury." His friend Shalese held up her phone so he could look at his hair while he did it. After about 15 minutes we finally got the final product for everybody! Enjoy!
Monday, January 13, 2014
Update and Visiting Hours
Carson continues his adaptation to the rehabilitation schedule and actually had his first good night (relatively speaking) of sleep since the injury. He was previously waking every ~30 minutes with pain and breathing difficulties, but last night he was able to go 1.5-2 hrs in between episodes. After spending the night with him, he had no place BUT to improve in sleeping. As a result, he was able to put forth better effort in his PT sessions, which mainly focus right now on getting him to sit upright for longer periods of time while controlling his blood pressure. Following a spinal cord injury, the regulation of blood pressure decreases and the body needs time to adapt. This is slowly improving. Carson was already very strong in his upper body at the time of the injury and this will be HUGE in his recovery, since he will be lifting his own legs around and propelling himself along in a wheel chair. Also, to clarify any prior confusion, he finally had his feeding tube removed today, hopefully for good. The doctor purposefully left this in until Carson could demonstrate that he could adequately swallow and process regular food, which he has done over the past several days. Once he met the caloric intake necessary, they removed the tube. Even though they left this in, he hasn't been fed through this for multiple days. One more hurdle eclipsed. His arm strength is good for biceps/triceps, shoulders, but fine motor movement, grip, and finger strength are all still very crude. He still has no sensation below his upper chest.........nothing......for now.
After speaking with Carson and looking at each day's schedule, visiting hours should be between the hours of 5:30 to 7:30 P.M.----(1730-1930 for you military oriented folks) M-F. Saturdays are more flexible, but mostly the same times. Sundays are open. Generally speaking, he is busy from early morning through the above mentioned visiting times in OT, PT, eating lunch/sleeping. Also, please be aware that he is often tired after treatment sessions and may not be able to fully attend to conversations. If they are moving him or taking care of personal needs, visitors may also have to wait a few minutes. Finally, there is a "commons" area in the rehabilitation unit where multiple people can meet and talk rather than in his room proper. He is currently located at the University of Utah Rehabilitation Unit on the 2nd Floor. I'm sure he will look forward to seeing you.....
All of you may not realize it, but your support is helping to keep this man emotionally alive and full of hope for a brighter day---I see it in his eyes when letters and cards are read to him. I can virtually guarantee that when Carson is able, he will acknowledge this to each of you personally.
Stephen Tueller
After speaking with Carson and looking at each day's schedule, visiting hours should be between the hours of 5:30 to 7:30 P.M.----(1730-1930 for you military oriented folks) M-F. Saturdays are more flexible, but mostly the same times. Sundays are open. Generally speaking, he is busy from early morning through the above mentioned visiting times in OT, PT, eating lunch/sleeping. Also, please be aware that he is often tired after treatment sessions and may not be able to fully attend to conversations. If they are moving him or taking care of personal needs, visitors may also have to wait a few minutes. Finally, there is a "commons" area in the rehabilitation unit where multiple people can meet and talk rather than in his room proper. He is currently located at the University of Utah Rehabilitation Unit on the 2nd Floor. I'm sure he will look forward to seeing you.....
All of you may not realize it, but your support is helping to keep this man emotionally alive and full of hope for a brighter day---I see it in his eyes when letters and cards are read to him. I can virtually guarantee that when Carson is able, he will acknowledge this to each of you personally.
Stephen Tueller
Saturday, January 11, 2014
Turbulent Waters
Carson continues to hold steady. With the weekend there is limited therapy. He was having difficulties breathing at night due to constantly being on his back and the symptoms were consistent with obstructive sleep apnea. He has consistently gone many seconds at a time without breathing and wakes abruptly, gasping for air. This results in fatigue and continually waking during the night. Fortunately, he was fitted with a CPAP machine and we will see how the night progresses with some higher quality sleep. The machine forces oxygen into his lungs and nearly always the individual reports a better sleep. He desperately needs it.
Despite Carson's upbeat nature and presentation on his recently YouTube clip, he has certainly jumped into turbulent waters. I use the word "jump" on purpose because he is choosing to tackle this menace head-on. I suppose one can either take a passive or an active role in their own treatment, regardless of what it is. Passivity leads to letting things happen to you. An active role allows you to make things happen---it puts you in charge, but involves substantial risk. Sounds like a investment strategy, doesn't it? In some ways it is. The risk is a lot of discouragement and set-backs, but the reward for actively engaging may be the advantage Carson needs to make it through this ordeal. I often force myself to be optimistic even when I don't want to or don't feel it. I waver at times but can't let him see it. For the first time since the injury we discussed potential outcomes and how we would all cope with this challenge. I saw something on his face tonight I hadn't seen previously----uncertainty, and a more full realization of what this all means. We talked of not walking. We talked of wasting away muscles and altered physiology. We spoke of scriptural references of healing and miracles of Christ, and talked of accepting the Master's plan regardless of what it is. One thing Carson isn't, is afraid. Fortunately, he has an advanced knowledge of suffering and the purification process of having to taste bitter waters before enjoying the sweet. Our family will see him through this. His friends will see him through this (the support is something that continually amazes me). He will see all of us through this.
The English Poet William Ernest Henley wrote the poem "Invictus" in 1875. I think it is appropriate for the situation. It reads:
Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
for my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed
Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
-Stephen Tueller
Despite Carson's upbeat nature and presentation on his recently YouTube clip, he has certainly jumped into turbulent waters. I use the word "jump" on purpose because he is choosing to tackle this menace head-on. I suppose one can either take a passive or an active role in their own treatment, regardless of what it is. Passivity leads to letting things happen to you. An active role allows you to make things happen---it puts you in charge, but involves substantial risk. Sounds like a investment strategy, doesn't it? In some ways it is. The risk is a lot of discouragement and set-backs, but the reward for actively engaging may be the advantage Carson needs to make it through this ordeal. I often force myself to be optimistic even when I don't want to or don't feel it. I waver at times but can't let him see it. For the first time since the injury we discussed potential outcomes and how we would all cope with this challenge. I saw something on his face tonight I hadn't seen previously----uncertainty, and a more full realization of what this all means. We talked of not walking. We talked of wasting away muscles and altered physiology. We spoke of scriptural references of healing and miracles of Christ, and talked of accepting the Master's plan regardless of what it is. One thing Carson isn't, is afraid. Fortunately, he has an advanced knowledge of suffering and the purification process of having to taste bitter waters before enjoying the sweet. Our family will see him through this. His friends will see him through this (the support is something that continually amazes me). He will see all of us through this.
The English Poet William Ernest Henley wrote the poem "Invictus" in 1875. I think it is appropriate for the situation. It reads:
Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
for my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed
Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
-Stephen Tueller
Video Update from Carson!
I visited Carson last night. It was one of the first nights all week that he was awake and feeling pretty well when I came. We laughed and cried together. I read him a couple messages that people had sent him. There have been some incredible stories of how Carson has influenced those around him, before and after the accident. Thank you everyone for writing him.
There were a few things that I wanted to add to the blog last night, but Carson says pretty much all of them in these two videosHe says it much better than I ever could. Enjoy!
Carson's Message 1-10-14.
Superman Stickers: a shout out from Carson to his brother Dallas
There were a few things that I wanted to add to the blog last night, but Carson says pretty much all of them in these two videosHe says it much better than I ever could. Enjoy!
Carson's Message 1-10-14.
Superman Stickers: a shout out from Carson to his brother Dallas
Friday, January 10, 2014
The Bare Knuckled Brawl Begins
Following two major surgeries, not eating for 5 days, being massively dehydrated, in incredible amounts of pain, throwing up, low blood pressure, tubes running everywhere in and out of his body, beepers going off all through the night with equipment, nightmares about being "beaten on the back of my neck by people", gasping for air at night because he can't turn his body, Carson was officially introduced to the street fighting world of rehabilitation today. He is in the fight of his life and just watching the process was difficult. His rehabilitation team operates their craft with a mild pace of urgency, tempo fairly high, and expectations even higher. I can see why people don't like rehabilitation. It is difficult. It hurts. It results in levels of discouragement and despair for many, and if done right, will likely be the most trying and challenging thing of a person's life with this type of injury. The team plucked Carson from his bed via a lift and harness, and placed him into a motorized wheel chair where he was taken to a lower floor to be introduced to the rehabilitation "gym." They placed him on a table and had him sit upright to begin the process of knowing how to balance using his arms only, since he cannot currently utilize any muscle group below his upper chest. To appreciate this, try and totally relax all your core muscles that you use to sit up and balance, and then just use your arms to bear all the weight and keep from falling to the front or rear. No balancing with legs or any other muscle group beside your arm strength. It should be hard....and it was.
Before his injury, Carson had requested a painting of Christ walking on the water by the artist Julius Sergius von Klever as a Christmas present. He loved this particular rendition because of the theme, and also the aesthetics of the painting which depicts Christ defying the turbulent waves, head slightly down, silhouetted against a setting sun. Now, in the context of his injury, this same painting that sits in his room takes on an entirely new meaning.
Stephen Tueller
Before his injury, Carson had requested a painting of Christ walking on the water by the artist Julius Sergius von Klever as a Christmas present. He loved this particular rendition because of the theme, and also the aesthetics of the painting which depicts Christ defying the turbulent waves, head slightly down, silhouetted against a setting sun. Now, in the context of his injury, this same painting that sits in his room takes on an entirely new meaning.
Stephen Tueller
Thursday, January 9, 2014
Off to Rehabilitation
All,
Carson has been moved to the inpatient rehabilitation unit at the University of Utah Medical Center on the second floor. Our goal was to keep him at the U due to continuity of care and are grateful this was successful. This is the point where things are going to get pretty rough. Up until now he has been medically taken care of, but now he will be required to take on more of his own care. At this point, Carson is in a kind of in between zone where he doesn't have the strength to do many of these tasks, but has the great desire to do so. Rehabilitation will push him beyond what he feels he is capable right now. Discouragement and frustration are going to be part of this process.
We will know more about his schedule soon and let you know. A million thanks to all of you who continue to send blessings Carson's way. He will need them all.
Stephen and Camille Tueller
Carson has been moved to the inpatient rehabilitation unit at the University of Utah Medical Center on the second floor. Our goal was to keep him at the U due to continuity of care and are grateful this was successful. This is the point where things are going to get pretty rough. Up until now he has been medically taken care of, but now he will be required to take on more of his own care. At this point, Carson is in a kind of in between zone where he doesn't have the strength to do many of these tasks, but has the great desire to do so. Rehabilitation will push him beyond what he feels he is capable right now. Discouragement and frustration are going to be part of this process.
We will know more about his schedule soon and let you know. A million thanks to all of you who continue to send blessings Carson's way. He will need them all.
Stephen and Camille Tueller
Swallow Test: Check
Carson passed his swallow test today! Now he can get rid of that blasted tube up his nose! He has successfully swallowed chocolate milk and a spoonful of Jello! Feel free to do a victory dance with Carson and the rest of us as you hear this news!
Wednesday, January 8, 2014
Food, Glorious Food! 8 Jan 14
Well, sort of. If you can imagine a bite or two of Jell-O, or some chocolate pudding and water through a straw, then it qualifies! Carson has told me that he has literally dreamed of eating Jell-O, and today his dream came true. The speech therapist was confident in his ability to swallow and gave him the above food. When he ate the chocolate pudding, his eyes rolled up in his head for a couple seconds in ecstasy! They still have his feeding tube in pending good consistency handling soft food, but we hope this is taken out soon. They also insisted that Carson feed himself, which he did successfully, though his finger dexterity is still fairly crude. Finally, the Occupational Therapist then had him clean his upper body with cleansing wipes. Overall, the day was exhausting for him, but rewarding. They are consistently monitoring his blood pressure when placed in a wheel chair and he often gets waves of nausea. Some of the biggest potential obstacles continue to be any respiratory illness, accidentally vomiting and then aspirating, thereby increasing his chance for pneumonia, and blood clots due to the sedentary nature of the injury. We are waiting to see if he will be admitted into the University of Utah Inpatient Rehab Unit, (he is on an orthopedic trauma unit there currently) or transferred to another facility. More to come on this by the end of the week. As always, we appreciate those of you who write, pray, and inquire of his well-being.
Stephen and Camille Tueller
Stephen and Camille Tueller
Tuesday, January 7, 2014
Small Victories 7 Jan 2014
Rehabilitation from a brain or spinal cord injury often comes in "small victories". Because nerves are so very delicate and don't grow back like other body tissues, any damage to them results in long, painstaking rehabilitation. The body has to learn new ways of doing old things and does its best to compensate The rehabilitation process is also often referred to as a "marathon" as opposed to a "sprint." How true this is! Carson achieved one of these small victories today. Following a rougher night due to the aforementioned nerve pain, the physical therapy staff removed Carson from his bed via a lift and placed him in a reclining wheelchair. For the first time he was able to get outside on the deck for a few minutes after going down several floors in the elevator. While this may not have been huge in his rehabilitation of motor skills, it was a huge psychological boost. We don't fully understand the mind/body connection, but what we do know is that the greater the mental outlook, the better the overall prognosis in nearly any injury. To place things in perspective, Carson requires moving every two hours in his bed, and there are only three positions; slightly on his left side, slightly on his right, or flat on his back. With the neck collar in place, a nasogastric tube in place for feeding, catheter, IV's, inflating wraps on his calves to prevent blood clots, and boots that position his feet at an angle that attempts to prevent muscle and tendon atrophy, one can imagine the psychological boost that would come from ANY deviation from this routine. I could tell that this primitive "road trip" elevated his mood and provided a temporary, but important small victory. Carson has improved his upper arm movement and hand skills. Again, these are subtle, but nonetheless improvements. He will have a swallow test to determine whether he can get the feeding tube removed within the next few days. As we talked about the injury and what the ramifications would possibly be for the future, we both know it is too soon to be making any predictions about recovery of function. One thing is for certain with Carson; any lack of recovery won't be as a result of failure to try. This man continues to look forward, not back, and demonstrates the indomitable spirit. Your letters of encouragement are akin to stopping at a gas station and filling up his "emotional" tank with high octane fuel. Regardless of the ultimate outcome, he FEELS your love. Thank you for leaving a bit of you, with him.
Stephen Tueller
Stephen Tueller
Monday, January 6, 2014
Parent's Update 1-6-13
All,
The overall "flavor" of this blog represents Carson's support network who not only reflect their own faith and optimism, but Carson's as well----we don't want to detract from this and we love it. It will be these friends, his family, and faith that will serve to pull him through this life altering injury. Carson has had, and will continue to have, discouragement associated with this battle. It is just beginning. The trauma shock is wearing off and the realization of the challenges that lie ahead are becoming clearer. Carson CHOOSES to approach this in a positive, faith based manner and understands the role of adversity in order to improve and progress. The video clips so far, in our opinion as parents, represent Carson's gratitude that he is still alive and made it through two difficult surgeries. We share his joy. We also know that each day is going to be different than the previous one, for good and bad, and he may not appear so "chipper" as he would say.
From more of a "clinical" view, Carson's body is attempting to heal and he is quickly entering into a phase of recovery that often results in extreme discouragement and acute pain. As the spinal shock wears off and Carson's nerves attempt to "wake-up", the messages from the nerves are being confused due to the injury, creating an incredible amount of muscle spasticity and overall agitation. Carson stated today that it feels like "An electrical storm is going on in my back" and further described the general sensation as an "Intense, clutching feeling." The doctors are giving him help for the pain.
We would like to thank those of you who have taken time to write Carson letters. I read many of them to him yesterday and both of us were overwhelmed several times from the contents. These are so critical to his progress as he continues his journey.
Stephen and Camille Tueller
The overall "flavor" of this blog represents Carson's support network who not only reflect their own faith and optimism, but Carson's as well----we don't want to detract from this and we love it. It will be these friends, his family, and faith that will serve to pull him through this life altering injury. Carson has had, and will continue to have, discouragement associated with this battle. It is just beginning. The trauma shock is wearing off and the realization of the challenges that lie ahead are becoming clearer. Carson CHOOSES to approach this in a positive, faith based manner and understands the role of adversity in order to improve and progress. The video clips so far, in our opinion as parents, represent Carson's gratitude that he is still alive and made it through two difficult surgeries. We share his joy. We also know that each day is going to be different than the previous one, for good and bad, and he may not appear so "chipper" as he would say.
From more of a "clinical" view, Carson's body is attempting to heal and he is quickly entering into a phase of recovery that often results in extreme discouragement and acute pain. As the spinal shock wears off and Carson's nerves attempt to "wake-up", the messages from the nerves are being confused due to the injury, creating an incredible amount of muscle spasticity and overall agitation. Carson stated today that it feels like "An electrical storm is going on in my back" and further described the general sensation as an "Intense, clutching feeling." The doctors are giving him help for the pain.
We would like to thank those of you who have taken time to write Carson letters. I read many of them to him yesterday and both of us were overwhelmed several times from the contents. These are so critical to his progress as he continues his journey.
Stephen and Camille Tueller
Another Inspiring Letter
You heard Carson say how much he loved everyone's letters in the video we posted yesterday, I wasn't kidding, he REALLY likes them! There have been so many that have helped him stay positive and that have boosted his faith. We've had a number of people write him about the times when Carson influenced him the most. There have been many, many people whose faith has been heavily influenced by Carson's, before and after the accident. Last night, when we visited with Carson he said that we needed to read this letter. We looked through almost the entire stack of letters to find it, and it was well worth the search. I wish I could share all of the letters that Carson has enjoyed, but we would have well over 200 pages worth of text. This one stuck out to Carson, so I thought I'd share it with you all.
"Dearest Carson,
I found your blog through an LDS lady's Facebook who used to watch my son while I worked. She has always been an amazing lady, so I thought that I should check out the link... and can I just tell you how incredibly touched I am reading it all! I was raised LDS, but fell away during my abusive marriage. I was angry and disappointed at God and many people in the church that I had kept all of my covenants, but the eternal marriage I had been promised fell to a million terrible pieces the moment our sealing was over and tore my life apart. I left the church several years ago, and have never looked back..... until now. While I was reading your blog, the spirit was so overwhelming that I couldn't help but cry. I haven't felt the spirit in a very long time, and as a single mother I want my son to feel the spirit, but it's hard to teach him how to when I don't feel it myself.. You are an amazing man who has an incredible gift to touch others, even when you are at your lowest point. I wish I had had that strength to keep on keeping on, and serve the Lord out of habit, as you do. Even though my heart hurts for you and your current struggle, I want to tell you that I also feel comfort that no matter what, Heavenly Father knows what he is doing.. and you are fufilling a purpose no one in this world could fulfill. I know for a fact that part of that was touching my heart, and helping open my heart and mind to God again. Thank you. Even though I don' t know you, my son and I are so grateful for you and your incredible story. We hope you heal quickly, and that you recieve as much comfort and love that you give. God bless you."
"Dearest Carson,
I found your blog through an LDS lady's Facebook who used to watch my son while I worked. She has always been an amazing lady, so I thought that I should check out the link... and can I just tell you how incredibly touched I am reading it all! I was raised LDS, but fell away during my abusive marriage. I was angry and disappointed at God and many people in the church that I had kept all of my covenants, but the eternal marriage I had been promised fell to a million terrible pieces the moment our sealing was over and tore my life apart. I left the church several years ago, and have never looked back..... until now. While I was reading your blog, the spirit was so overwhelming that I couldn't help but cry. I haven't felt the spirit in a very long time, and as a single mother I want my son to feel the spirit, but it's hard to teach him how to when I don't feel it myself.. You are an amazing man who has an incredible gift to touch others, even when you are at your lowest point. I wish I had had that strength to keep on keeping on, and serve the Lord out of habit, as you do. Even though my heart hurts for you and your current struggle, I want to tell you that I also feel comfort that no matter what, Heavenly Father knows what he is doing.. and you are fufilling a purpose no one in this world could fulfill. I know for a fact that part of that was touching my heart, and helping open my heart and mind to God again. Thank you. Even though I don' t know you, my son and I are so grateful for you and your incredible story. We hope you heal quickly, and that you recieve as much comfort and love that you give. God bless you."
Sunday, January 5, 2014
Video Message!
Here is a quick video message from Carson tonight! Now you can have the video to go along with the audio!
Carson's Message 1-5-14
Carson's Message 1-5-14
1-5-14, What a Night!
I just got back from the hospital from an incredibly uplifting visit with Carson. When I arrived he was awake, though he had been sleeping most of the day and was still pretty wiped out. Again, thank you everyone for your faith and patience. Carson was astounded by the many letters we got from people around the country saying they were fasting and praying for Carson today. What an encouraging feeling it brought to him. He thanks everyone for their prayers. (But you'll see that in the youtube video that will soon be posted!)
A bunch of ward members at church today wrote Carson notes on thin strips of Carson's favorite colors of paper. (Blue and yellow, "but not pee yellow!") They made a paper chain to decorate his room with notes from people. There will be sheets in the room for people when they are able to visit so they can add to the chain. Sadly, it is still not okay to have visitors right now. Hopefully we will get to that point soon! Thank you for your understanding. The rest has been invaluable for Carson.
Tonight he was more awake than I have ever seen him before, he was vibrant, alert, and witty as always. Our visit wasn't too long, and by the end he was pretty tired. He also received a visit from one of his former nurses in the ICU. She was so kind to come and visit after her shift. You can tell she had such a great love for Carson and missed him a lot. It is true that Carson has had angels as nurses. You can see an immense love in his eyes when he speaks to them!
His mom shared a quote with me of something that he had said earlier in the day. He said, " I have three short term goals for today. 1) That I won't feel death in my neck when I sit up. 2) To be able to eat. and 3) to pass my bloody swallow test!" Those are good things to pray for specifically as we are going forward.
Carson was very conversational today and very optimistic, his mom asked him, "Carson, is it hard to be so chipper?" He said, "No, if I'm chipper I'm chipper. If I'm not chipper, I'm not chipper. This isn't a show." I can testify that is true. It truly seems that his spirits are high. While he was awake and attentive we read him a couple letters. He loves hearing from people. Thank you for everyone's letter writing. Keep them coming, you can write Carson as often as you'd like. There have been a number of writers that have been very faithful. Keep up the great work!
The rest of the night we were able to just chat. We chatted like old times, as if we were sitting on a park bench just passing time. There was something so familiar about our conversation. It was great to see him so comfortable with talking. I asked for his advice on a number of things and he gave me such insightful and thoughtful answers. We laughed, we cried, and laughed some more. He just has this way of making you feel like the most important person in the world while you're speaking with him. That kid will never cease to amaze me!
Physical Therapy
This morning went well for Carson. He hasn't slept a ton in the last couple nights, so its a good thing he has his days to rest. The medicines he has been getting have made him really sleepy. He can hardly stay awake.
Overnight they moved Carson into a new need. His old bed was too short and his feet would hang over the edge. This bed comfortably fits Carson, and it looks pretty cozy. I joked that I was gonna kick him out and take a nap in it.
He also got a new air mattress that is unlike any I have seen. It looks like a series of inflated pillows stacked vertically and side-by-side that support him. I am not sure how much he likes it. I know the mattress made it a little difficult to do some of the stretches that he was asked to do in physical therapy.
The physical therapist came in and had Carson do a couple exercises. They were mostly simple movements like touching his hand to his shoulder or closing his hand to a fist and then extending his fingers.
While the therapist checked his pulse with her stethoscope and one of those pump-up arm band things(I'll try to be more informed on my medical terminology) his heart monitor started beeping because it couldn't read his pulse anymore. It gave us a little scare but she assured us that he was okay. (I only share this because the whole incident helped me realize how Sherlock faked his death in the last episode of the BBC's Sherlock series.)
While the therapist worked with his legs, Carson was able to take a nap. It was interesting to see the nurse extending Carson's legs and to hear him snoring at the other end of the bed.
We need everyone's prayers and fasts today to concentrate on Carson's swallow test. If he can swallow he can get that awful tube out of his nose. We appreciate your prayers on his behalf! We will send more updates as the day moves on.
Saturday, January 4, 2014
A Letter from Carson's Nurse
On my way home from the hospital I remembered one of the many, many incredible letters that Carson listened to tonight. There were so many other amazing letters. Hopefully I will find a way to post all of these people's experiences in one place. Perhaps a separate blog or something. But I wanted to share this letter from one of Carson's nurses. She gave permission to share it on the blog. I thought I'd share it with everyone.
"I have been a nurse for over 7 years and have taken care of hundreds of patients with injuries similar to Carson's. None of those patients have had a fraction of Carson's optimism and ability to make the very best of what can seem like an impossible situation. I only took care of Carson for one shift and the way that he is handling his injuries and his hospitalization is truly inspiring to me. It became obvious to me in that 12-hour shift that Carson is an amazing person and if anyone deserves a miracle it is him. I don't think I will ever forget him and I hope that no matter what happens in his recovery that he continues to remain positive and impact others by being the amazing person that he is."
-Krista Madden, RN
"I have been a nurse for over 7 years and have taken care of hundreds of patients with injuries similar to Carson's. None of those patients have had a fraction of Carson's optimism and ability to make the very best of what can seem like an impossible situation. I only took care of Carson for one shift and the way that he is handling his injuries and his hospitalization is truly inspiring to me. It became obvious to me in that 12-hour shift that Carson is an amazing person and if anyone deserves a miracle it is him. I don't think I will ever forget him and I hope that no matter what happens in his recovery that he continues to remain positive and impact others by being the amazing person that he is."
-Krista Madden, RN
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