A View from Ahead: Realities and Possibilities Post Injury
Synopsis: A View from Ahead, Realities and Possibilities Post Injury is a paper by a C5-C6 quadriplegic looking at life with disabilities.1
Author: Disabled World Contact: www.disabled-world.com
Published: 2016-11-21 Updated: 2019-03-05
I am a C-5-6 quadriplegic as a result of a diving accident 26 years ago. Almost immediately following my injury I had the opportunity to hear other quads and paras speak about what life was like for them post-injury. This experience was priceless. It occurred just when I needed it, as I was digesting my new reality. It gave hope to my parents who didn't know what the future looked like for their son. And it enabled me to fully invest in my rehabilitation with the knowledge that I was working toward a realistic goal.
I've had the privilege to speak to other newly disabled individuals in the years that followed. I have written a short paper ("A View from Ahead, Realities and Possibilities Post Injury") of the things that I share with them and their families. I tried to write it with a mindset of what information would be helpful and comforting to a family embarking on this strange new journey.
Apparently the human spinal cord is not indestructible. For me this truth was realized twenty six years ago at the age of seventeen. Since that time I've learned that a spinal cord injury is a graduate course in discovering what matters most in life. It is also a mechanism that cannot help but shape an individual's attitude, patience, consideration (or lack thereof) for others, acceptance of limitations, and relationships.
In my case it resulted by a combination of: the invincibility of youth, alcohol in excess, a swimming pool of inadequate depth, and a neck limited to the laws of physics. Abracadabra: C-5,6 quadriplegic.
Following a three month stint in a Staten Island hospital, I began an eight month inpatient rehabilitation program at Rusk Institute in New York City. It was no more than a few days after being admitted to Rusk that I attended a panel discussion comprised of individuals living post-injury. Looking back, it was this ninety minute dialogue that was most helpful in my path to recovery. It is the reason why I try to make myself available to answer questions of those newly injured and also my reason for this writing.
During the panel discussion I had the opportunity to hear these now-wheelchair-users explain that they had careers, relationships, recreational experiences, joys and struggles just like everyone else. They were telling those of us who were newly disabled that life goes on.
One gentleman explained his process of getting out of bed and the time that it took to perform his showering and toileting routine. He further went on to share his experience of how on one particular day after spending a good deal of time getting ready and dressed to go out, he knew he had to use the toilet again but he was not going to make it there in time. This gentleman then asked the audience comprised of riveted, yet grossed out adolescences: "Do you know what I did then? I did what anyone else would do, whether in a wheelchair or not. I began the process of getting out of my soiled clothes; I took a shower, and I got dressed again. That's what you do. That's what anyone would do."
Although the focus of the discussion was spinal cord injuries, and the exact words were not articulated that day, what I came away with and what became clear to me in the years that followed is that everybody's got something. Everyone, whether in a wheelchair or not has circumstances in their life that have to be dealt with. For some it's a spinal cord injury and the accompanied challenges. For others it may be marital problems or financial worries. Each person's trial is valid and as real to them as my spinal cord injury is to me.
Throughout the course of my day some well-meaning person will inevitably say: "I give you a lot of credit. I don't know how you do it."
My initial response is to smile, as to express appreciation for their sentiment. And should that lead to further discussion I usually say something like: "This is just my thing. I'm sure you have things that I don't want to deal with."
But in each case that's exactly what a person does. You deal with the situation before you. That's just what you do; and then the next one, and the one after that. And hopefully in the process we can see God's hand at work. And if we're really fortunate, we've helped someone else along the way by role modeling a productive attitude and humble spirit.
To go one step further, the ability to gain perspective is incredibly helpful in the process of accepting this new reality. In his autobiography, Don't worry he won't get far on foot, the quadriplegic John Callahan wrote, "quads wish they were paras. Paras wish they were able-bodied and the able-bodied wish they were Jane Fonda."
As by default, it seems that no matter where any of us are on the ladder of physical ability, we tend to look up a rung and lament: "If I only had a little more function...". I have found the opposite to be the most productive and healthy approach to dealing with my disability. Instead of looking up a rung, I've learned to look down. During my time in rehab I was surrounded by individuals with a little less wrist flection, or a little less lung capacity, etc. It was my time with these friends that enable me to realize how fortunate I am to have whatever function I do have and give thanks.
There are going to be frustrations. It is going to take longer to do things than it once took. There is now a reliance on others where you had been your own man. Opportunities and venues will not always be available or accessible. Transportation options will become fewer. Medical requirements and maintenance routines are going to get in the way of scheduled events. These are facts and countless wheelchair users before you have dealt with them. I mention these things so as to prepare you, and hopefully dissuade you from uttering the nine words that make me cringe every time I hear them. They are: "Why does everything always have to happen to me?"
I will be the first to admit that achieving patience is not immediate or easy, but it is necessary. Without it you will make your road harder than it needs to be, and repel those around you.
Consideration (or lack thereof) for others
Aside from the fact that I would hope to treat others with basic human courtesy, I also learned very quickly that it was in my own best interest to do so. When I got to Rusk Institute I shared a room with a young man who was a paraplegic. He had arrived a few weeks before I had. Within hours I had assessed his relationship with the nurses' aid assigned to us and I determined that I was going to go a different route.
Granted this young man had just sustained a life affecting injury and he was likely angry, scared and probably bitter. Unfortunately these emotions made themselves evident in his rude demands to the aid, whose sole purpose was to help us in our recovery. The aid was professional and conducted her duties with grace. I did however notice that she wasn't going out of her way to do more than she had to for my roommate. In my interactions I decided I would be patient if I had to wait my turn for her attention, and I would express gratitude for the care that was provided. Needless to say, I had a much better experience than my roommate.
Even though it felt like it, this injury did not only happen and affect me. It happened and it affected my parents, my siblings, my caregivers, friends and although I met her years later, it affects my wife. The Mills Brothers had it correct when they wrote the song, You always hurt the one you love. It is easy to lose our patience with those who will let us get away such behavior. If I happen to get irritated about how long it's taking for my wife to dress me, or for how my brother is going about a task that I have asked him to perform, I am without excuse if I do not take a moment to realize that they are freely giving of themselves to serve me. Their lives at that very same moment in time are being affected by my disability. To disregard their labor or neglect to express appreciation for their efforts would be selfish on my part and detrimental to the health of our relationship.
Within a year or two of returning home from inpatient rehabilitation I had wise council who recommended I go back to school. I didn't actually have plans for the degree I would obtain but I knew that shutting off the television and getting out in the world was important. I didn't see it while it was happening, but looking back I'm aware that the interactions that I was partaking in were as important to my recovery as the academics I pursued.
These relationships spanned the gamut from the driver who picked me up in the morning and told me about his kids; to the fellow students I collaborated with, and to the professors who sought to build into my life. These were important interactions that enabled me to feel a sense of normalcy. This didn't mean that my day was completely normal. It still involved moving desks for my wheelchair, struggling to open a bottle of water in the cafeteria, and other little things like waiting for someone to open a door. However, I quickly learned that if I was willing to set aside my pride and receive their help, they were eager to be of assistance. This made for a great college experience.
It was also during this time that I began attending church regularly. My family had belonged to a local church during my youth, but in the years prior to my accident I had stopped going. It was a family friend who also attended the church who would ask me every time I saw him, "Hey, why don't you come by this Sunday? It would be great to have you there."
After months of lying to this poor guy with a reply of, "Yeah, I'll see you Sunday." I decided to throw him a bone and actually show up. And I'm glad I did.
Having broken my neck five years earlier, at seventeen years of age, I had immediately become physically dependent on people at a time when most young men are exercising their independence. Just as I was learning to do things in my own strength, that strength was taken away. Instead of trying to deny this fact I recognized its truth. And I was reminded of a relationship that I could not do without. I was reminded that "My flesh and my heart may fail, but God is the strength of my heart and my portion forever" (Psalm 73:26). Some may call God "a crutch"; so be it. The fact of the matter is that I'm merely immobile without my wheelchair, but I'm utterly lost without that "crutch".
At this point in my life I was content and not pursuing a relationship. My father had passed away shortly after my being discharged from rehab, and I was living at home with my mother as my primary care giver. I certainly gave no thought to the possibility of ever being a husband. Everything I had ever learned from my father was that a man shows his love for his wife by going to work to provide for her; and he protects her in all things. Considering these two objectives beyond my grasp, the notion of having a wife was not even a daydream of mine.
I had now been attending church regularly for about ten years. I had served a few terms on the board and I was occasionally involved with activities that took place. I was attending a small group Bible study in a friend's home with about a dozen regular participants. One of the people who attended was a lovely young woman who I had regular interaction with over the years on Sunday mornings. We began spending more time together as this small group would get together for barbecues and other social gatherings.
It was not long thereafter that the two of us began dating. Knowing that this beautiful woman would hope to be married at some point, I realized that it was only fair that I express my concerns regarding my limitations and how I felt this disqualified me for marriage.
And with the utmost grace and eloquence, she artfully formulated a response which made it perfectly clear that I was being stupid. Apparently it seems that above all things a woman wants to be loved. And although I could not financially provide for her or open a stuck jar, I could love and cherish her and promise to do so for the rest of my days. Amazingly, she wanted to love me in return. These were acceptable terms for both parties. And at the time of my writing this we are approaching ten years of ridiculously happy marriage.
Acceptance of limitations
Although I am in general good health and have decent function for a quadriplegic of my level, full time employment is not possible. I've discovered that on any given day I may need more rest than on others. And I'll occasionally have what we call "quad-days": a few more aches, a bit less energy, or general malaise. I am fortunate however that my wife is perfectly willing and capable of being the financial provider for our home. This does not mean that I sit looking out the window until she returns home from work. It is important that I do my part for the team. But not having the confines of a nine-to-five schedule makes all the difference.
I drive a van that has been modified with hand controls. This has been priceless in enabling me to perform my duties as house-husband. I am able to do the food shopping (albeit they are small loads at a time). I drop-off and pick-up the dry-cleaning; and I've even learned how to do some simple cooking. There are no beef wellington's in my repertoire but I've learned to make a decent spaghetti sauce and chicken soup. I pay the household bills and schedule any repairs. Contributing as much as I am able gives me a sense of purpose. It conveys to my wife an acknowledgement of all that she shoulders and my desire to lessen her load. It provides me a conduit to a world that keeps on spinning; and it feels good to do what you can.
Everything I do takes a little more time; but fortunately, time I have. In the 1993 movie Jurassic Park, Jeff Goldblum's character, Dr. Ian Malcolm has just been told not to worry about the dinosaurs reproducing because the scientists have taken measures to ensure that doesn't happen. To this Dr. Malcolm replies: "...life will not be contained. Life breaks free, it expands to new territories and crashes through barriers, painfully, maybe even dangerously, but, uh... well, there it is... I'm simply saying that life, uh... finds a way."
This phrase has become a bit of a mantra for me, "life finds a way." The first time I pulled up to the kitchen counter to chop an onion I had no idea how I was going to accomplish that goal with my limited function. It took a little time but I figured it out. I am not implying that all things are achievable and that nothing is beyond my ability, because well, I'm a quadriplegic. I have little patience for the guy in a wheelchair who shouts victory for having climbed Mount Everest. "You didn't climb Mount Everest" I want to yell, "Your two exhausted buddies carried you up there". But I have the equivalent amount of patience for someone who's not willing to try to achieve a reasonable goal. And yes, I've learned more times than not that certain tasks are beyond my ability. But I try. Who knows, life may find a way.
"Quad-days" (or para-days), as I called them earlier, are going to come. It's inevitable. The only way that I've found to break that funk is to look beyond myself. My greatest joy is serving my wife. It gives me a sense of purpose and there are tangible results in her appreciation. I mentioned how I drive a van that has been modified for my special needs. I have driven more friends and acquaintances to the airport and doctor's appointments than I can count. I am however realistic about my limitations. I am not able to swing a hammer and help my buddy fix his roof. But I can get on the phone and see if anyone else is available to help. I can give him a ride to get more nails. I can research which shingles are best for his project. I can recommend a doctor when he bangs his thumb. And I can sit and listen to him explain how relieved he is to finally get his project completed.
What can you do? Find out what it is and then do it. Perhaps it's as simple as writing down your experiences and sharing them with others who might find them helpful.
So to keep me from becoming conceited because of the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. Three times I pleaded with the Lord about this, that it should leave me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. - 2 Corinthians 12:7-10
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