Understanding Spinal Cord Injury: Part 3 with Caleb
This is my third part in the series Understanding Spinal Cord Injury and I want to again thank all of you for your amazing support. Last month I allowed all of you to “join me in the shower” by sharing what daily life is often like on a physical level for someone with spinal cord injury. Today I’m going to talk about the mental and emotional effects of a trauma-based injury, like the spinal cord injury.
Something worth pointing out here is that one thing I have observed over the last nineteen years is that while the nature and physical outcome of spinal cord injury may vary extremely from person to person, the psychological results are more often than not very much the same. Again it bears repeating, these are my personal experiences as I have lived them. There are exceptions to every rule. So if you are reading this and have had a very different experience then feel free to write in and share. The purpose of this blog is not only to document a process, but to encourage healthy discussion and the sharing of information. So, dive in below in my own process of understanding spinal cord injury.
THE MENTAL & EMOTIONAL EXPERIENCE DUE TO SPINAL CORD INJURY
In my previous posting I tried to stick to a chronological order of how my spinal cord injury and physical care developed over time. The mind’s response to trauma is a bit more nebulous. So laying out a step by step order of difficulties is well… A bit difficult. There are many more contributing factors to the emotional pain than a simple “Ouch, I broke my neck and it really hurt”.
There is the shock of the initial accident, the fear introduced by the doctor’s initial diagnosis and prognosis. The trauma of time spent in a triage center, the battle back to a modicum of health through therapy. The reality of a very different life at home. And the burden of the suffering you see in the hearts of those you love. Any one of these can be compounded and magnified by any number of factors. The mental fortitude and psychological state of the injured. Their home life and how they were raised. Age, spiritual path, family and community support. Lifestyle pre-injury, quality and quantity of physical therapy and amount of return. And that is only a partial list.
I must state here before going any further that I am a profoundly blessed man.
My life has been far from easy, yes I have suffered, but I can honestly say I have been loved. Years from now, when my life is over and I am ready to close my eyes and say goodbye to this dimension of reality I will know I have lived a life filled with and surrounded by love. Real love, not the Hollywood lie that panders and patronizes. But true, honest commitment that will take a bullet for you. Go to hell and back with you. And still look you in the eye and call bullshit when you need it most.
Everyday of my life my family amazes me. My friends who have been there for me. You guys know who you are, and you may never know or understand the dark moments you were there to pull me out of. But you did and I love all of you. It is because of you that I am here and healthy today.
When I was 10-years old we lived in Stuart, FL. My mother’s aunt was in her 80s and lived alone in Ft. Myers which is only a few hours away. My grandmother would fly down from New York and visit her every winter and since we were not far they decided to visit us in Stuart. We were living in a second-floor apartment at the time and 48 hours into the visit my great-aunt fell on the stairs and cracked her hip. I can easily remember her curled up on the sidewalk at the base of the stairs and being very puzzled as to why she whimpered quietly like a small child for her mother who had been dead for over forty years.
Trauma and pain combined with fear cause us to quickly revert to childhood and the need to be protected.
The main reason a child cries from the pain of an accident is not necessarily the pain itself, but the terror it feels when its most basic survival instincts become so violently threatened. As we grow older skinning our knee, touching a hot dish, banging our head, etc doesn’t seem such as big a deal, we wince in pain, shake it off and laugh about how silly we were.
It takes a bit more to make us “run home to momma”. It is usually something that causes us to come face to face with death. Soldiers on the battlefield have been known to call for their mothers as they lay dying. Such is the nature of intense, life-threatening trauma for its core, central effect is to send us mentally back into the safest, securest reference point we have in our psyche, the protection of the mother. If the mother is not available or it is trauma beyond her capability of fixing we withdraw mentally into the subconscious and essentially block out whole parts of ourselves to escape the pain and suffering. This is the root cause of Post Traumatic Stress Disorder.
It is actually harder for me to talk about the accident itself now nineteen years later than the days and weeks that followed simply because it means something vastly different now than it did then. Strangely in the days and weeks after the spinal cord injury it was talking about the future that was the source of fear and pain. The in-between years was the revelation of “Holy shit, what have I done?!” that was the toughest topic to truly accept. Each moment created its own set of issues and it would be a long time before I could sift through and come to terms with most of it.
I was raised in the Charismatic/Evangelical Christian church.
I was taught to believe that the Jesus Christ who walked the earth 2,000 years ago performing miracles of healing still did so today through the work of his Holy Spirit and those miracles are still available to all. As a 16-year old coping with just the initial fact of the accident itself that philosophy was much better than anything the doctors were saying so I entirely immersed myself in my beliefs. Many of you may have known me all my life and are still involved in the Christian church. I may get offensive here, but it is not my intention. When blind belief of religious dogma and intense psychological trauma brought on by physical suffering combine without being put in check they form a dangerous cocktail of denial that can take years to breakdown, sometimes it never does.
With the best of intentions I buried myself under a bandage of denial that caused me to make poor lifestyle and health choices, hurt loved ones and even mismanage personal finances. I will state here unequivocally that one of the earmarks of true spirituality is being brutally honest with yourself. I will be addressing belief and spirituality in a later posting in detail, but let me make one thing very clear. Yes, I will acknowledge I have been guilty of denial through misplaced belief in the past, but I will never, ever trade the lessons in hope and courage in the face of impossibility I learned through study of the Biblical scriptures during that time.
Everything in life happens for a reason, but a truly enlightened individual will never mock the beautiful qualities of faith, hope or love in another human being no matter how misplaced or misguided they may be.
Under the blanket of denial I buried everything. The fear, the frustration, the anger, the blame, the shock, the tears, the grief, the embarrassment, the shame and whatever else even resembled pain. After about three years in mid-1997 the stress of all that bottled up mental garbage started finding physical outlets. I started having panic attacks almost 4-5 times a week with no idea what they were.
I would lay awake in bed and shake like a leaf in the wind for 3-4 hours and then pass out exhausted. This would continue for another 6 years, but gradually less and less as I figured out on my own how to breathe my way through them. I became a nervous eater. I could not handle sitting quietly so a bag of Doritos or potato chips became a comforting drug for a mind that felt on the edge of breaking out into a fit of screaming at any moment.
Although I couldn’t scream if I wanted to. I don’t even laugh like I used to because my ribcage muscles are paralyzed. Then came the digestive issues. I don’t think in 15 years I’ve gone a full week without some form of stomach pain. One of the major symptoms of PTSD is digestive trouble, mine was so severe that even after dealing with the mind, the damage remains that was done in the body. Mentally and emotionally I started exhibiting passive-aggressive behavior patterns and forgetfulness. Worst of all I began forming small, subtle lies. To myself first and then to others. I would gloss over the truth and tell others what I thought they wanted to hear thinking that this was a form of faith that would turn a given situation around to what I wanted it to be.
Then came the addiction.
I have never been a “substance abuser”, but I found other outlets as a means of escape. The internet, chat rooms, hours of movies or TV, sugar and snack food, and of course porn all kept my mind occupied. This in and of itself became a source of frustration because I couldn’t even masturbate if I wanted to because I can’t even unzip my pants without assistance. Too much information perhaps, but it’s time we got real here folks. When I was injured I was 6′ tall, athletic and popular.
I returned home from the hospital atrophied, scarred and disfigured completely ashamed and self-conscious. I will be addressing dating, relationships and disability in another blog, but what really added insult to spinal cord injury was that the raging hormones in my body ceased to elicit pleasure as my confused nervous system reacted to sexual stimuli with nausea, shakes, my heart racing, aches and shooting pain. Finally, I gained weight. This compounded everything with body-image issues and shame.
In 2000 I moved to Long Island. I decided to attend college after six years of being out of school. For the first time in my life I was not attending church on a regular basis and with the world of literature and study opening up to me along with the reality of having been in a wheelchair for a good deal of time thus far I hit a wall. My preconceptions and fairytale ideologies began to break down. On the one hand I was consciously dealing with the denial, while on the other trying to stem the bleeding of the open wound it created.
I became quiet and withdrawn as depression set in.
Those who have suffered from real depression know you don’t just cheer up, even when your happy your sad. It’s like a lead weight in your subconscious. One positive in all this is that I have family and a few close friends who are a talkers, avid, professional talkers. We put all the cards out on the table. If you feel it, say it now or explode later. This was and has been a tremendous blessing because I was afforded the rare gift of being able to battle my demons in a non-judgmental, supportive environment. Another gift is that the Lords of Destiny saw fit at my birth to program me with an intense passion for self-analysis and the desire to transcend.
This to me is the embodiment of the concept of Grace. While karma may dole out some heavy-handed happenings during our time on this planet the beauty lies in the truth that the very same karmic force has endowed each of us with a unique skill set required to rise to the challenge. That my friends is Grace. The first two breakthroughs I needed came around the same time.
First I had to face the fact that this happened, period. Also, I had to accept that it was not my lack of faith, lack of hard work or sin that had kept me from being healed. The third part of the realization being that it was time to take a serious step towards living my life as an adult, and taking my physical health, exercise, diet, education and career into my own hands instead of covering my irresponsibility under a pile of excuses and calling it “waiting for God to reveal his plan”.
These three decisions were the integral parts of facing the reality of my spinal cord injury and how I’d handled it up to that point.
The second breakthrough was somewhat gentler, but imperative. I began to study and understand the nature of post-traumatic stress. This helped to alleviate the guilt and inner-turmoil over the aspects of myself I’d grown to hate and become so deeply ashamed of. While yes, I was taking responsibility for my actions, I was also learning that I could not be blamed for the way my brain was wired to respond to trauma. These two key changes gave me a place to start, a platform from which to work. I was no longer fighting blindfolded with a cardboard saber.
Little by little, step by step I began to filter through the detritus. With each new revelation came deeper peace. Let me say this, you must DO something. It is not enough to recognize the problem. Do I always do everything I should when I should the way I should? No. Do you? No. We take steps. One of the first actions I took was self-discipline by eliminating fast food and soft drink and increasing my fruits and vegetables. I returned to therapy and got myself
into a wheelchair that increased my stamina, cardiovascular health and independence.
Self-worth and purpose began to replace fear and shame.
I began to build relationships with others like myself who had suffered difficult circumstances in their lives. Sometimes just sharing our story or laughing at a similar experience proved to dispel the cob webs. Just long enough to find a new level of clarity. Were there setbacks and bad days? Of course! Even bad months and bad years, but if you’re going to fall, fall forward. I began devoting myself to work and education. The ultimate goal being to pinpoint a fear, no matter how small, and move toward it, not away. By taking action you learn to recognize the elements that have been at work in you mental self and transmute them into their nobler qualities.
As one journeys deeper and deeper into the core of who they are it can get ugly. Especially if you’re trying to accomplish other things as you move on with life. Nobody has time to stop and “fix things” while they attempt to raise kids, build a career, stay healthy, maintain a home, etc so the road to self-realization can be one that seems to move forward and backward at the same time. In August of 2010 I had suffered a major setback in my career financially and it affected some important relationships.
It triggered a regression into such a depressed state that I was done.
I had gone as far as I could go into dealing with the most painful parts of myself without some sort of profound change. I was literally ready to end it all and by that yes, I mean suicide. Now, what I’m about to share are the key elements to what I feel was a personal spiritual experience that occurred within my own consciousness. At around 8 o’clock one evening that first week in August I pushed myself down the street to a quiet back alley where I like to go to get alone and think.
I was the lowest emotionally I’d ever been. And the great progress I had made only seemed to add to the pain as feelings of failure began to set in. For the first time in years I did what I can only describe as prayer. I said, “I don’t know if I’m talking to Jesus, the Devil, Buddha, an Alien, Krishna, the Cosmos or anybody at all, but I know something out there is a lot bigger than me. I know if you have the power to fix anything in my life than you must have the capability to hear me. And I need help: I need help now cause if I don’t get it, I’m done.” That was it. Did I feel better?
Nope. I turned around and went home. Within 72 hours I received a phone call from a business associate in Los Angeles.
He invited me to come speak to a group of students at the Art Center College of Design in Pasadena. I said yes and the next month I was on a plane with my mother and brother for California. To this day I don’t know why or how and I won’t go into details because they are intensely personal. But while on the West Coast over a period of 6 days I went through a profound experience. That experience introduced me to the practice of meditation. Returning home refreshed and with an open heart I let myself step away from much of what filled my days work-wise and I put all obligations aside to rest and meditate.
On a quiet afternoon in October I was sitting in my office. I had been pondering the concept of judgment.
For the first time in my life I came to an understanding that judgment is the act of separating out parts of ourselves and others. And deeming them as more or less worthy of love. Judgment is often a perception based on incomplete or missing information. It is also a conclusion drawn based on a belief system or conditioned response. Through an emotional investment in the outcome a given set of circumstances judgment always determines something as wrong and therefore unworthy. Our natural human proclivity to attach ourselves what feels good denies us a deep understanding of true compassion. And therefore denies the ability to see the beauty through the pain and the lesson on the other side.
As I was rolling this fresh concept around in my heart and mind I felt drawn to meditate. I closed my eyes and began to focus on what pure, unconditional love really is. The only real life picture I could formulate was holding my niece in my arms the day after she was born. I’ve never known a more pure moment. The sheer power of that experience was what helped me understand the pain my parents went through watching me suffer what I have. Sitting there with the image of my niece in my consciousness tears filled my eyes as in my arms I saw myself cradling my damaged and broken spinal cord.
I held it delicately and loving and whispered the words, “I love you and forgive you” . As, for the first time in my life, I let myself love myself.
Not only myself, but my spinal cord injury, the wheelchair, the pain, and the suffering. I wept for two hours straight and left that room changed forever. Since that time my life has radically changed. Yes I have had incredibly difficult moments, but my mind is at peace. I’m still a work in progress, but I can honestly say I am moving forward. I want to get out of bed in the morning. I get offended less. I’m comfy in my own skin. I got out in public and don’t hurry past my reflection in a store window. I’m ready for life. Do I have it all figured out?
No, but I am taking each day as it comes. If you’re reading this and going through something tragic, feel encouraged. It may sound cliche’, but it is true that the answer really is inside of you. Turn off the TV, clear up the clutter. Take some time to get your head quiet and then do the work. No-one else will do it for you. You may feel alone, maybe you truly are, but if you take the steps you’ll find the support you need. When the student is ready the teacher always appears.
Thanks for reading.