It seemed like a routine day. I had just finished speaking at a meeting and I had a few hours before I needed to head to the airport. The next speaker was lecturing on how to wean a quadriplegic patient off a ventilator. I was only half-interested in the topic and wasn't giving it my full attention.
After a very brief discussion on the mechanics of weaning, the lights were lowered and we were asked to imagine lying in the dark, totally dependent, with only the sound of the ventilator, whoosh-whoosh, whoosh-whoosh, whoosh-whoosh. Imagine being unable to scratch the itch on your nose -- waiting for the next whoosh that would signal that your life support was still functioning.
The lights came on, and seated before us was an elegant, stylish woman in her 30s. Her blond hair was cut short and striking. She had a radiant smile that immediately warmed the audience. Her fingernails were perfectly manicured with bright red polish, but they were motionless, supported by the troughs of her specially-fitted wheelchair. She was motionless -- not by choice, but by bad luck. Pam, a high-level quadriplegic, had quite a story to tell.
A Life Worth Living
At 34 years old, she was an accomplished registered nurse who had recently moved to to be near her mother. As she hurried off to work one day, she forgot to fasten her seatbelt. Her car skidded as she hit the slick pavement, and the next thing she knew she was on the floor of her car, unable to move her arms or legs, awake but helpless. She instantly knew that she had broken her neck and she was in big trouble.
Pam was placed in the intensive care unit, paralyzed from the neck down, with a tracheotomy in her throat and her life dependent not only on people, but on the breathing machine with all its knobs and dials that unceasingly went whoosh-whoosh. The sound was unrelenting -- no silence, no quiet, no peace. But worst of all, she had no way to communicate. What she wanted most was for someone to stay by her side and help figure out what it was that she needed. The time between nurses coming in to check on her seemed interminable. When they did come, it was to adjust things, not to take a moment to find out how she felt. Did she need her nose scratched, her hair brushed out of her eyes, the light turned back on or off? They told her that she might never breathe on her own, and it was at those times that she thought about dying.
The movement in her arms and legs never returned, but she was able to build her strength to the point that she tolerated more time away from the whoosh-whoosh. She spoke triumphantly of the first time her tracheotomy was capped and she was able to speak: "If I could speak, I was back and I wanted to live. My voice is me. With the sound of my voice, I knew that not everything had changed. I wanted to live more than ever."
With speech came the ability to direct her life. She could tell the doctors and the nurses that, despite being paralyzed, she was the same Pam -- the same bright, articulate woman as before; no less a person just because she couldn't move her arms and legs; no less a person because she was dependent upon them for care and sustaining her life.
Why Do We Want To Live?
I suspect that there are many people who look at someone like Pam and ask whether or not they would want to live if they were in the same situation. Many people say they would want to die, but are we really capable of making that decision before we are confronted it? Pam is the perfect example of "resilience" -- the capacity to positively cope with stress or adversity.
A recent article in Scientific American, "The Neuroscience of True Grit," looked at the science behind our ability to bounce back from significant stress or trauma in our lives. The research tells us that the ability to get back our equilibrium and our will to live is the "norm," and it is only a small percentage of people who experience significant difficulty adjusting to their trauma or disability. They refer to this phenomenon as "coping ugly" -- adapting to most of the adversity that life throws at us. In other words, resilience is ordinary and not extraordinary. It does not mean that we will avoid emotional pain and distress while experiencing or recovering from the event, but the vast majority of people will return to their equilibrium.
Part of the current discussion is about whether we are "hard-wired" to be resilient, or whether it can be taught. Is it a process or human trait? The military has a great interest in this, for if we can modify someone's resilience, then it would be advantageous to either pre-treat soldiers headed into harm's way or aggressively treat them once they are injured. However, the "true grit" article points to studies that suggest that interventions are either of no value or interfere with the normal recovery process. Left to our own devices, the human psyche will usually have a natural resilience to catastrophic events in our lives. This supports the theory that the "wiring" in our brains keeps most of us from spiraling down into severe depression and returns us to a state of stability.
What Favors Resilience?
Even if resilience is a natural phenomenon, many people need help along the way. The American Psychological Association (APA) uses the analogy of a raft going down a river that encounters "rapids, turns, slow water and shallows." You need a plan to navigate the river and you may need to get help from others to complete your journey. The APA tells us that the journey is easier for those who have the following:
Each of us will have a different journey and "pack" differently for the trip. The good news is that 90 percent of us end up at the destination with a will to live and a desire move forward in our lives. Very few of us escape adversity in our lives, so take a moment and do an inventory to see if you are prepared for the journey.
For more information, visit www.RichardSenelick.com.
Follow Richard C. Senelick, M.D. on Twitter: www.twitter.com/RichardSenelick
Mark Goulston, M.D.: Trauma, Loss and Recovery from the Inside Out
Rev. Dr. Walter J. Smith, S.J.: End Of Life Spiritual Care: A Pathway to Growth and Peace
Carole Bennett, MA: Do You Have an Emotional Traffic Jam in Your Brain? 6 Ways to Unsnarl It
Charlotte Reznick, Ph.D.: Catastrophe in Japan: Helping Your Child Comprehend and Cope
Coping strategies - Wikipedia, the free encyclopedia
I live now with chronic pain, as well as short term memory issues, and to be perfectly blunt, I am not sure if my injuries were much worse, that my life would have value enough to allow me to be utterly dependent on others...especially those I love the most.
While I am certainly impressed by this young woman's story, my own struggle with mobility issues makes daily life daunting. I usually can walk...but when I can't its not elective...nor convenient. I can get to a place, say the market, and suddenly NOT be able to walk without pain. "Planning" has gone out the window...and you lose your desire to "go for it", when you face the "I guess not" moment when you have to turn around.
I'm stubborn. I won't give up...but after only a few years, I can see how it would wear you down.
Were it worse, I would have to take stock carefully...being a burden is not on my bucket list.
I have hired a wonderful man whose attitude is one of the best I have seen in anyone able or disabled. He puts me to shame and all I have is Lupus. :) He writes grants for me. Yes, you saw that correctly. WRITES. He uses Dragon to navigate the computer. There are other programs that allow you to use eye movements to navigate the computer. Technology has advanced sufficiently to make it much easier for people to communicate.
The real crime is telling people there is no hope. That living in a nursing home with no hope of regaining independence is all they can expect. That is a lie. A huge lie. I understand the general public not knowing what is possible, but professionals should know better. When people have the will to live, they will find a way to surmount the steepest obstacles.
I agree with this. Bad attitude before the disability = bad attitude after. Good attitude before = good attitude after. It's all how you see things, people.
There is a very fine line between "If I were paralyzed life would not be worth living" and "Financing life support for the paralyzed is not worth doing."
The one does not logically entail the other, but it does tend to psychologically. My sympathy for your plight follows from my picturing myself in that plight. This is why pro-choice advocates ask opponents to picture themselves as the rape/incest victim. Your image of how the experience would be for you ALWAYS affects your image of how it must be for others, which has influence on your views on related public policy discussions.
The necessity of 24-hr care with 100% dependence on others, the knowledge that I'd never improve, and seeing the heartbreak on the face of friends and family every time they come in the room are all deal-breakers for me.
Unfortunately, those who make decisions for the seriously injured are commonly uninformed about what life would be like if their loved one survives.
An advanced directive is a must for EVERYONE over the age of 18.
Much of the time, death is the better alternative.
You are uninformed about what life would be like with the proper care. I despise this mentality, I really do. This really makes me sick.
I just hired a man who you just described. It would have been a crime to allow him to die. He is a vibrant intelligent man and has added so much to my organization, I'm not sure how I had managed without him. You see them at their intial recovery phase. How about meeting quads who have lived in the community?
Pi$$ on pity.
http://issueoffrank.blogspot.com/
We have struggled to survive, over and over, defeating the odds thrown against us (read our stories)
~Frank
I also think, though, that because we are each unique, none of us have a right to tell anyone else what circumstances they should be willing to live with. I think that if we truly respect life, part of that is not just respecting an individual's right to end their life if they so choose, but also providing a way in which they can die peacefully and humanely.
The answer proves to be, "No!" We have experiences of these, but in themselves, we remain who we are even when we can no longer do what we are accustomed to doing.
Then we have to ask, "Who is having these experiences?" The answer to this, is "I am." And then, logically, "But if I am not these experiences, who am I?"
"Who am I?" is the question life forces upon most of us, whether we are in a tragic accident and paralyzed or live to a ripe old age and begin to see our bodies degenerate slowly. "I am the one who experiences". And who is the one who experiences? A mystery: Perhaps we are our consciousness. Perhaps "we" are aspects of a larger consciousness, "masks of God" in Joseph Campbell's phrase.
If we are aspects of consciousness, then perhaps in all suffering there are lessons we can learn about life and what it means to be human. Perhaps this is our purpose.