Don't Pull the Plug

Tom Matola was a teacher, a hiker, a dancer. Then at age 61, he suffered a major stroke. Shut off from the world, from almost all communication, from his joys and his livelihood, he felt anger, frustration and despair. When his doctor asked him if he wanted to have the plug pulled, he thought about the life he had, and the life he could look forward to. And he decided to live; to learn to live a new life—a fulfilling life, full of love and growth, and a determination to improve physically, mentally and spiritually.

Tom Matola was a teacher, a hiker, a dancer. Then at age 61, he suffered a major stroke. His old life was no more. He couldn’t hike or dance. He couldn’t even walk or stand. Even worse, he couldn’t talk or even type.

Shut off from the world, from almost all communication, from his joys and his livelihood, he felt anger, frustration and despair. When his doctor asked him if he wanted to have the plug pulled, he thought about the life he had, and the life he could look forward to. And he decided to live; to learn to live a new life—a fulfilling life, full of love and growth, and a determination to improve physically, mentally and spiritually. Then he began fighting—and living.

With the support of friends and family, and the help of dedicated therapists, Tom Matola now talks, teaches, writes and counsels. He completed his doctorate in sexology. He’s active in the community. He walks some, and he’s improving!

In this inspiring collection of essays, Dr. Matola and his partner and caretaker, Roberta Johnson, share their lives, their changes and their ways of dealing with change and disability. Through these essays on life, death, horses, fear, spiders, swimming, physical therapy, dealing with HMOs, disabilities, sex and more, they set an example for living life with hope, determination, love and joy.

For people who have suffered strokes or disabilities of any kind, this book is an inspiration. It’s an example to follow to help you live a full and fulfilling life.

For partners, spouses, parents and children of a disabled person, it’s a source of hope. Things can get better—and you can help.

For home or professional caregivers it’s a tool to use in the recovery process.

For those who aren’t either disabled or caregivers, this book is a life lesson. It instills a deep, joyous appreciation of life, and urges living that life to the fullest.

Section I: The Beginning
Acceptance Does Not Mean Defeat
Dying to Live
Overcoming Fear: A Stroke Survivor’s Conflict
Stroke: A Bird’s Eye View
Spider Bites and Stroke
On Taking Risks
Change of Life

Section II: Therapy
Disabled Lab Rat Serves Science and Self
Look Who’s Talking! Me!
Swim Therapy and How I Learned to Love It
Perspectives on Rehab as a Person Who Survived a Stroke
Who’s Afraid of the Big Bad Horse
Healing through Empowerment
Dancing Horses and Me
Two Views of Hippotherapy
Horseback Riding as Sex Therapy

Section III: Sexy Stuff
Hooray for Sex, an Equal Opportunity Pleasure
The Disabled Are Better Lovers and I Should Know
Sex and a Stroke: Is There Sex After a Stroke?
Aging, Sexuality, and Disability or How I Learned to Live with All Three
Sex and Privacy in the Hospital

Section IV: Attitudes
Taking Charge of My Life
Don’t Box Me In
What to Do After The Doctor Leaves… Or Caring for and by the Caregiver

Section V: Musings
I Never Dream I Am in a Wheelchair
You Can’t Get There from Here
Color Me …Please
My Spiritual Journey
My Life-giving Garden
What’s Wrong with Vanilla Sex?
Beam Me Up, Scotty. Please!
Tom, the Teddy Bear Therapist
Tom, the Teacher
My Life with Cats

Appendices
Speak Up: Letters That Worked
About Speech Therapy
About a Doctor
Recommended Reading
Stroke
Disabled: Important Insights
Essays Published
Biographical Sketches
Thomas Matola, Ph.D.
Roberta Johnson, J.D
Barbara Heine, P.T.
Sharon Janus

I have observed that a question is often more important than an answer. Only with the right question can there be any hope of finding the right answer. I have also observed, as a stroke survivor, that I often ask myself the questions: Why me? Why did I have a stroke?

In the four years since the "incident" I have gone around and around with that particular question and found no answer that really satisfied. Only recently, I broke through to another question and, in retrospect, it seems so simple I wonder why I never asked it before.

The new question became: Since I have had a stroke and I am the way I am, still in a wheelchair and still with my right side impaired, is there any reason for me to be a survivor? That question engendered others: Are there lessons to be learned? Is it my cosmic karma to now pay for past wrongs? Is there a positive side?

I have concluded that I cannot know for sure and, therefore, I can choose. So I have decided to go forward. My mission is to continue my former life as a teacher. I now only teach about life, active life, for the disabled.

My experience taught me about doctors and therapists. There were those who were afraid to hold out hope because there was no guarantee of meaningful recovery. They didn’t want to offer me false hope. But denying any hope negated the possibility of recovery. Even if there were not much physical recovery, the mind and spirit need to be nurtured. In the very act of trying to recover, recovery happens.

In my own case, I do several things that frighten me. I ride a horse. I am scared to death of horses. But for two years now I have gone each week for therapy on that huge animal. I still don’t walk, but I certainly sit straight, have great strength in my unaffected side and improved tone in the other.

I swim several times a week. I am not afraid of water, but I am afraid of taking it into my lungs. However, the exercise has helped my breathing and has kept me limber.
The practice of overcoming fear gives me great confidence. And improvement in mobility and flexibility keeps happening.

…from those therapists who believed in "never say die," I learned to keep going. And to those who were naysayers, I became a teacher. To those who were afraid to raise "false hopes" I demonstrated that acceptance of my condition did not mean defeat. Accepting means taking the condition as the basis and going on from there. Hope and faith must be maintained.

It is self-defeating to cop out to accepting without hope. To say my karma brought it on and there’s nothing to do about it is opting for failure. Better to say my karma has brought me a new opportunity and go from there.
I am reminded of a story: The man who broke his arm asked his doctor if he would be able to play the violin when the arm healed. The doctor assured him he could. The man smiled and said "That is good, because I never could play the violin before."

I don’t expect to play the violin. But I do expect to keep trying. So if I consider that life gave me lemons when it gave me the stroke, I’ll just keep looking for recipes to make lemonade and drink a toast to life!

We've wished for a way to turn back the tide of suicide among sudden newcomers to disability. Now there's Don't Pull the Plug by Thomas Matola and Roberta Johnson. He had a big old stroke, she was his long-time lover--suddenly "the care giver."

Straight-from-the-shoulder patchwork of joy, pain, lessons learned like "Hooray for Sex, the Equal Opportunity Pleasure" and "Disabled Lab Rat Serves Science and Self." Every disability services library must have this book; buy four and save three lives.

…This collection of essays on life, death, horses, fear, spiders, swimming, physical therapy, dealing with HMOs, disabilities, sex and more shows how to life with hope, determination, love and joy.

Brimming with practical advice as well as humorous anecdotes, "Don't Pull the Plug" is a lifeline for survivors and caregivers faced with the life changes and challenges associated with the rehabilitation process. This guidebook to staying sane and finding fulfillment in the wake of personal tragedy includes chapters on overcoming fear, dealing with HMOs, enjoying sex after a stroke and making the most of different kinds of therapy.

Every time I pick up a book about accessible travel, it contains all the same trite information. Of course this book is just the opposite. It contains useful information. I don't need to be told to get to the airport early or to remember to pack my medicine. This book covers all the essentials, gives you good solid information and doesn't just give you "common sense" tips. It's the only book on the market that does that.

It's an easy read -- not just a book filled with facts and figures. Real life situations are included in most chapters. The chapter about what to do when things go wrong is one of the most concise and informative advocacy guides I have ever read.

I wish that all travel agents and professionals would read this book too. It's a must for people who travel, but the professionals who plan our vacations also need to know this information!

My wife had a stroke four years ago and now has to use a wheelchair. We both wanted to travel bur I didn't know the first place to look to find out the things we needed to know. The physical therapist said lots of people who have had strokes travel, so we wanted to give it a try. But it was hard to find information. That's where this book helped. It contains a lot of information you need. It should be titled "owners manual" as nobody tells you this stuff when you end up in a wheelchair.

The cruise chapter was very helpful to me. I just figured I could call up a travel agent and book a cruise with a handicapped cabin. I'm glad I read the book before I made that mistake. There is also a very helpful chapter about choosing a travel agent and how to travel on an airplane with a wheelchair.

We just got back from our first cruise and it was great. I wouldn't have been able to do it without this book. If you are even only thinking about travel, I urge you to read this book. We are already planning our next trip

Thomas Matola, Ph.D., is a retired human factors design engineer, instructor, and psychotherapist. Currently—but not permanently—in a wheelchair because of a stroke suffered in 1991, Dr. Matola now is a sexologist, educator, writer and disability advocate. He serves on the San Jose City Advisory Committee on Disability.

Roberta Johnson, J.D., has been an administrative law judge, attorney, professor, newspaper reporter and lobbyist. In retirement, she is forging new occupations in writing .