| | Duct Tape and Real Coke
 by Richard Galli
y wife Toby and I took on a new job in 1998: caring for a teenage quadriplegic. Our son Jeff was a strong and healthy kid when he jumped into a pool at a July 4th party. He was paralyzed from the neck down when we pulled him out. In an instant, a medical crisis became the focus of our lives.
Our family has groped through a thicket of consequences from that unfortunate swim. Intensive care; artificial life support; rehabilitation hospitals; multiple surgeries; a witches' brew of medications; powered wheelchairs, hoists; pacemakers or ventilators for Jeff's breathing; and round the clock care by nurses or by us. How brave we are, friends tell us.
How brave, say strangers who write to us. As if bravery is the key to survival for us now.
Well, as many unlucky families know, bravery is nice, but it is not the most essential skill in coping with tragedies like the one we suffered, or the one you may suffer tomorrow, if your turn comes. I can't speak about every sort of tragedy.
I can't tell you what to do when your oil well catches fire or your moon lander crashes. But I can tell you about two skills - much less grand than heroism -- that can sustain you in a medical tragedy like ours.
Duct Tape
The first skill is self-reliance. Trust yourself, and become an active participant in your future.
Wherever Jeffrey went, I followed with a roll of duct tape. I called it my "medicinal duct tape." I used it at hospitals in three states. I used it to attach emergency alarm switches where Jeff could reach them, close to his cheek. I used duct tape to run wires to a little TV we rigged on a table inches from his immobilized eyes. I made shelves for a hospital closet out of duct tape and parts of coat hangers. Duct tape helped give Jeffrey what he needed - now! -- when no one else had a solution close at hand.
To me, my ever-diminishing roll of duct tape represents self-reliance. When you suffer a tragedy, you will be surrounded by well meaning people who don't have exactly what you need. So take a deep breath, set your teeth, and find it or make it yourself.
The most important thing you can make is a decision. If the tragedy is really awful, that may be your most important job: making decisions. How do you make them? It's easy. Don't guess. Learn.
No doctor, no case manager, no expert of any kind is going to force-feed you all the information you will need. And you have no excuse for being shy and passive and uninformed. The internet and the telephone have taken away all your excuses. Either alone or with the help of friends, you can learn what you need to learn as quickly as you need to learn it. Trust me, the job you have been given is not impossible.
Scour the Web for information, or have others do it for you. Find newsgroups and discussion groups that deal with your patient's malady. Post questions, and make them specific. The sharper the question, the more likely you will receive a useful response. Ask "how can I help my son?" and you will get nothing very useful. Ask "what are the pros and cons of a rear-entry minivan?" and you will get the kind of help you need.
Study a book or two. I read a basic textbook on spinal cord injury during the first week after Jeffrey's accident, and it prepared me for medical battles 1000 miles away that happened three months later.
Find people who have gone through the same thing, in your hometown or on the other side of the continent, and talk to them. In a 15-minute conversation you might get one fact you can use; and by contact with other survivors, you will be comforted about the prospect of surviving yourself.
Don't let sorrow or despair prevent you from doing your job. If this is a tragedy that affects you and your family, don't just observe it; don't let yourself became part of the audience to a medical melodrama. Sure your place is frequently at bedside, holding a hand, kissing a cheek and lending emotional support. But you are not the patient; and your personal sorrow is not a badge of honor, entitling you to any special benefits. During Jeff's first days at the hospital, some of his doctors and nurses cried for him; but their sorrow was a reason for doing their job, not an excuse to neglect it. The same is true for you.
You are being tested. You will pass or fail according to how much homework you do. You will know enough to make those tough decisions when you understand the advice you're getting -- and can trust your own opinions. If you find arrogant or uninformed professionals - as we did once or twice - you won't be afraid to withdraw from their care. And if you find capable, compassionate professionals, as we usually did, being knowledgeable will let you appreciate them much more, and work with them much better.
Real Coke
Until the accident, my soft drink of choice was almost exclusively diet Coca-Cola, out of regard for my weight, which was well north of comfortable. Ever since the accident, I drink real Coke, with all the calories. I drink lots of real Coke.
And it tastes delicious. I can't tell you how delicious. It tastes so much better now than before the accident, that I wonder if the formula for real Coke changed while Toby and I were pulling Jeffrey out of the pool.
Which brings me to my second necessary skill in dealing with tragedies like ours: take pleasure from something that is within your reach.
In the wake of a tragedy, you may find some of the joy has left the world. Your opportunities for joy may have been diminished, either psychologically (you can't get over the feeling of loss and sadness) or practically (because you can't be touring Europe and nursing your favorite sister at the same time).
But you have to cut yourself a break. You have to find an available and satisfying proxy for the grander opportunities you've lost. With me, the proxy is real Coke. With you, it might be real Pepsi; or caviar; or Sinatra albums; or romance novels; or professional massages.
Tragedy might push you into a bitter vacuum of self-denial. For months after Jeff's accident, I would not let myself listen to music on the car radio. I have practically given up tennis (a sport I love) and golf (a sport that Jeff and I had just begun to explore together). That's bad. You have to do just the opposite. Pamper yourself, if only just a little bit. Force pleasure into your life if you have to. Find something innocent and attainable that you really want, and grab it as hard as you can.
So that's my advice when tragedy strikes. Self-reliance and gratification. Learn what you need to know in order to do what you need to do; and find something simple and available to enjoy, as soon you can. For those of you who have trod the same path I am on, this advice should be familiar because of the lessons you have learned yourself.
For those of you who have not yet suffered a medical tragedy in your own family or nearby, all I can say is: Remember this advice. You will need it some day. Your turn will come. And oh, how brave you will be when it does.
RICHARD GALLI lives with his wife Toby and their children Jeffrey and Sarah in East Greenwich, Rhode Island. Jeffrey, still paralyzed from the neck down, is a student at the University of Rhode Island. You can learn more about Richard's nationally-acclaimed book, Rescuing Jeffrey, at http://www.rescuingjeffrey.com
"This book will break your heart and then, slowly, as you think about it, heal it again."
--- A reader's note on Amazon.com
"A huge story unflinchingly told."
--- New York Times Sunday Book Review
Contact Richard Galli via email at Gallilaw@home.com | |
