As I promised last month I will be sharing a bit about life with a spinal cord injury. Most of the symptoms or side-effects of a damaged spinal cord are similar across the board. Degree and intensity of these effects are determined by the factors I outlined in my last post, level and severity of trauma being key. Much of what I will share today is subjective based on my personal experience, but in my communication with friends in the spinal cord community and study of the condition many experiences are the same, if not variations on a particular set of issues.
THE PHYSICAL EXPERIENCE
Before I go any further please understand that many of you know me personally. Much of what I am about to discuss has remained intensely personal and only a few people know the extent of my physical situation. I will be explicit so be forewarned. This is not an attempt in any way to gain sympathy, it is simply a presentation of a very real life as I have lived it, be it right or wrong over the last 19 years.
In April of 1994 during my junior year of high school I was swimming with 2 friends in an above-ground pool in Crescent Beach, Florida. I have lived around water and water sports my entire life. My father is a surfer, an excellent swimmer, avid fisherman and sailor. He saw to it both of his sons were comfortable around water. By 16 I was a surfer as well with several large hurricane swells under my belt, more than a few Northeasters, river rafting Florida’s springs and diving for conch in the Bahamas. I’ve had reef scrapes, fin cuts, banged my head, bounced off of packed sand bars, gotten pounded in the shore break, even dove into the shallow end, but for some strange reason on that day I caught it wrong.
I foolishly was attempting an upside-down cannonball, which is called a “watermelon”. The point is to of course make a big splash. Which I did, but not quite in the way I intended. I did not clear a full rotation before connecting quite solidly with the bottom of the pool. I landed across the back of my shoulders where my neck meets my back. The sudden impact forced my neck forward so violently it crushed the C5-C6 Vertebrae. X-rays later revealed what is called a “burst fracture”. This means that the spinal column became so compressed it caused the vertebra caught in the pressure point to “explode”. Imagine you are holding 3 checker chips between your thumb and forefinger. If you apply enough pressure the one in the middle will pop out. This is essentially what happened in my neck.
I immediately knew what I had done. The first sensation was that my body vaporized into thin air, accompanied by what seemed like thousands of air-raid sirens between my ears. Next was the pain. I didn’t know pain like that was possible. Like a hot dagger at the base of my neck shooting lightning bolts of electricity into my skull. In my field of vision I could tell I was face down, floating just below the surface of the pool, my arms floating like limp seaweed unresponsive to the survival impulses of my brain telling them to get me to the surface for air. I knew I was drowning and in seconds it could be over.
The next thing I felt was rising up out of the water. I realized my friend Jennifer was holding me in her arms. All I wanted was air. I could barely get enough because the muscles that expand the rib cage had been paralyzed along with my diaphragm which would not return without intense respiratory therapy three weeks later. I could barely speak the words “I’ve broken my neck…” To this day I owe so much to two very special women, April Johnston and Jennifer Tooley who acted quickly and maturely to save my life. Within the hour I was life-flighted by helicopter to what is now Shands Medical Center in Jacksonville, FL. The flight was loud and cold and only added to the intense ringing and pain growing in my head and neck. As my body went into shock I vomited up and into the oxygen mask, the contents of my stomach pouring into my ears and hair and down my neck. This happened twice. Upon landing I was rushed into the ER. At this point things became a blur of wires, tubes, scissors, clipboards and questions. Finally with the pain, now worse than ever, like fire burning my brain, I fumbled with the words, but got them out, “Please… put me out.” That was it, everything went black.
I awoke 8-10 hours later in a morphine-induced stupor, wires and tubes everywhere. In my nose. In my mouth. An oxygen mask over my face. I still could not feel my body. What followed over the next three to five days all runs together. I remember many details, bits and pieces, but don’t ask me to put them in order. The diagnosis was acute spinal trauma, incomplete, caused by a crushed C5 vertebra. To repair the damage bone was grafted from my left hip into my spine and my C4, C5 and C6 vertebrae were fused together using a titanium plate. My neck was stabilized by what is known as a Halo. A rather ghastly-looking device that uses a ring around the crown of the head fastened to the thickest part of the skull by four screws. That ring is in turn secured to four steel rods which bolt to a rigid vest lined with lambs’ wool and worn tightly around my chest.
Because of inhaling massive amounts of pool water within 48 hours I developed a massive infection and critical pneumonia. Unable to clear my lungs they collapsed and after 18 hours on a C-PAP machine it blew a hole in my right lung. Regular suctioning left me choking and vomiting. I had to be put on a ventilator via a tracheotomy and given massive doses of antibiotics. A G-tube and J-tube for feeding rounded out the ensemble and I spent the next three and a half weeks in the trauma ward of University Medical Center. Slowly sensation began to return is various ways. It often felt like sparks, bursts of electricity. I thought for sometime, until they told me otherwise, that I was lying in some sort of traction contraption because my spine waking up felt like I was balanced on a metal beam. Tingling and burning, shooting pains, buzzing and popping in my brain. My lungs getting vacuumed out frequently. The prognosis was that I would spend my life attached to a breathing machine, but in my unit there was a very special person who truly was one of those along the way to whom I owe my life. They called him “Trauma Bob”. He was my respiratory therapist, a tough old Navy veteran who was covered in tattoos and smoked like a chimney. Bob understood that the lungs and diaphragm are muscles and in the same manner by which physical therapists could strengthen and develop arms and legs a respiratory therapist could help regain use of the respiratory system. Little by little each day he worked with me. I blew up balloons, inhaled and held my breath, yawned, coughed and all sorts of other breathing exercises. Then Bob would step outside for a cigarette. Go figure.
Years later however, I would thank God for every breath, whenever I’d get a cold or infection that would land many a spinal cord injury survivor in the hospital with pneumonia, I would think about Trauma Bob, wonder where he is, say a prayer and hope he quit smoking. I spent exactly four months in the rehab hospital of Memorial Medical Center in Jacksonville. As I slowly regained strength and rest the emotional impact of what had happened to me began to set in. I will get to that in-depth in next month’s posting, but it bears great importance here because as I began to understand the limitations of the injury the reality of what was potentially ahead of me was not something any 16 year-old should ever have to face.
One of the first sensations to return was hunger. Then I slowly acquired what is known as deep sensation. I could tell where my legs were, but if you squeezed my left foot I would confuse it with the right. Pain and burning around the injury site left rather quickly to be replaced by shooting electric impulses up and down the spine. My hips and legs felt as if they had fallen asleep and the tingly returning of blood was waking them up, only they weren’t waking up and the tingling remains to this day. The moment they sat me up on the therapy mat I went white as a ghost, dizzy and vomited. You would too if you’d been flat on your back for a month.
The indwelling catheter draining my bladder was removed and replaced by a scheduled catheterization four times a day. This was done to encourage the bladder to drain on its own, something I could not regulate and control on my own and so it remains to this day. To prevent accident an external catheter is worn which is essentially a condom lined with an adhesive and open at one end that is attached to a tube, the tube allows the urine to drain into a bag concealed under my clothes. Yes, it comes off, yes you get wet, yes you must be washed, dried, changed and so must the wheelchair and its cushions. The entire process can take up to an hour and half and is still something that occasionally happens. During my time in rehab it happened as often as three times a day. Over the last nineteen years it has occurred in restaurants, the car, on a friend’s rug, in church and with house full of guests over for a holiday. The next step was to regulate my bowels. One of the primary causes of disease and detrimental conditions in spinal cord injury is the body’s inability to remove toxins on its own. For instance, I don’t sweat. Most of my body cant tell hot or cold therefore it doesn’t know when to perspire. I’ve suffered burns, cuts and insect bites and not known of them for hours afterward. So in the case with regulating my digestive tract an enema was administered every other night followed by a sponge bath, and later a shower when the halo was removed. That schedule continues to this day and for those of you who are thinking this through, yes accidents do happen, the various causes can be detected and prevented in the future, but yes, they happen. In the car, on an airplane, in Madison Square Garden, even during dress rehearsal for a play you’re directing in college. This personally is perhaps the most difficult aspect of spinal cord injury from a mental and emotional standpoint and I’m sure the reader can understand why.
As my strength returned my ability to balance my torso became key. I have no nerve control over my core and therefore those muscles have greatly atrophied. This is why I currently have a condition called “quad belly”. As the muscles that hold the inner organs in place atrophy gravity pulls the organs forward giving a somewhat beer-belly appearance. It becomes more accentuated with weight gain obviously. Back to balancing the torso… the best description I’ve heard for living with paralysis from the chest down goes like this… Go to your local gym, find the biggest pilates ball in the place, sit on it, place your hands in your lap, lift your feet up off of the floor and try not to fall over. Now do this everyday, all day for years on end. You must learn to eat, shower, get dressed, maneuver a wheelchair, open doors, even make love all while feeling like the lower half of you is about to roll right out from underneath you, which sometimes, it does.
In the early 90s the strides forward in physical therapy were yet to come. The general attitude was get them healthy, get them the skills to cope and send them home. Anything else they achieve is up to them. So in late September of 1994 they sent me home after five months in the care of the hospital. Since that day very little about my day to day schedule has changed. While there have been moves across the country, college, career changes, an ever-changing spiritual journey, new friends, old friends and even dating and relationships it’s still pretty much the same. In the morning the external catheter is removed, I’m washed and dried and a new one is applied. The bed-side bag that has caught the urine from the night before is emptied, washed and put away and replaced with a small one strapped to my leg. My skin is checked for red spots, sores, any blemishes or injuries of any kind. Then I get dressed with the assistance of a family member and lifted into the chair. Either an aide or a family member assists me with my hair and brushing my teeth. I can burn myself on the stove so my meals are prepared. If I need to use the restroom I can feel my bladder and lower abdomen constrict, my blood pressure goes up slightly and the bag on my leg fills up. It is then drained in the bathroom. This too requires assistance. In the cold weather my bones in my legs and hips develop a deep soreness related to the arthritis and bone loss from sitting for nineteen years. This usually causes me to become tired around 2pm so I sleep for an hour by propping up a pillow next to my desk and leaning on the wall. Because my digestive system moves much slower than normal I’ve developed a gluten allergy. In recent years I’ve become very conscious of diet. Spirulina, alkaline shakes, herbal tea, fruit juice, smoothies, organic eggs, chicken, fresh fish, green veggies and salad are staples. I’ve lost weight in the last year and I have a bit more to go. In the late evening I transfer back onto my bed, remove my clothes and transfer to a special chair that allows me to use the restroom and shower. My bathroom is modified so that I can roll in, turn around and roll into and out of the shower with little effort. The shower is large with two heads, one is removable to ensure I am thoroughly rinsed. Any soap residue can quickly turn into a nasty, raw rash. Once the whole process is complete which takes over an hour, I am transferred back to my bed where another new external catheter is applied along with the bed-side bag. I wear white anti-embolism stockings to ensure good circulation. This is when I get a fresh pair. Finally my aide positions me on my side, propped up by pillows, where I will sleep several hours until I wake up and need repositioning. In the morning the process is repeated all over again.
This has been my primary mode of life since my injury. Spinal cord injury affects every single area of your life. Through all of this the people I owe everything to, and that includes my very life, are my family. My father, my brother Chris, my brother Ethan and my mother. Ethan and my mother above all. I owe them everything. It is because of them I am as healthy as I am. Doctors and other medical professionals are often amazed at my level of health and resistance to disease. It is because of their daily commitment and self-sacrifice, 24 hours a day for nineteen years that I have never had another over-night stay in the hospital. They have taught me what true love and friendship is and what it means to be loyal. I love them with every fiber of my being.