More Love, Less Fear

LETTER TO THE READER

My name is Robert. The story I’m about to tell you does not have a happy ending. As you turn the pages, you’ll learn how I lost my wife and the woman I love to a monster of a disease.

If there are words to describe how cruel ALS is, then I don’t know them. ALS (amyotrophic lateral sclerosis), or Lou Gehrig’s Disease, is a progressive neurodegenerative disease that cuts you down slowly, bit by bit. One day you can walk. The next day, not so well. Eventually your legs become lifeless limbs. Your speech, once clear and brilliant, becomes an inaudible gargle, and is eventually silenced forever. And on it marches. ALS hijacks every muscle in your body until you can no longer swallow or breathe. And as if that isn’t cruel enough, all the while you are lucid—fully aware that you are disappearing one muscle at a time; completely awake as your body inches closer to a permanent state of nothingness. The disease can strike anyone—it has no racial, ethnic or socioeconomic profile. There is no known cause, no known cure, and very little in the way of medical help or management of the symptoms. For the most part, all the patient can do is let it happen. All the caregiver can do is watch.

But while there is no happy ending to our story, there is a happy message.

There are three main reasons for writing this book. The first comes from Terri. She had always been about helping her fellowman. So it was no surprise to me or to anyone who knew her well that she wanted to chronicle her journey. “If it can help even one person,” she’d say, “I need to share my story.” But ALS had other plans, and so Terri’s book would have to wait until after she had taken her last breath. Fortunately, she left much of her research and letters for us to share with you now.

The second reason comes from me. This work is my public tribute to her. She filled me with so much love that I feel compelled to share it. I want to let others know that not only is it possible to have this kind of love, but when you have it, you can be happy even in the worst of conditions. Yes, happy. To those who may be starting along the path that I have just ended as a caregiver, I hope this book becomes for you a bridge to strength and compassion. The road you have chosen to travel is not an easy one. Fatigue, frustration, resentment, and even anger…you will feel all this, and more, at one end of the spectrum. At the other end: an abundance of joy, happiness, purpose—and, of course, love.

In the months that followed my wife’s passing, I looked back and saw the trail of what I now understand to be the stepping stones that led me to this journey. It was not altogether apparent while going through it, but they now sit there clearly mapped in my mind. This has forever changed the way I look at events or encounters that at first blush make no sense. Before Terri and ALS, I had always been intrigued with the notion that there is no such thing as a coincidence. If I had any doubts before, I no longer do. I am convinced that everything happens for a reason. Everything.

Third, I’d like to think of More Love, Less Fear as our final collaboration as husband and wife. This is the story of our last great adventure—our twelve-year relationship with a terminal illness that ended Terri’s life, but not our love for one another. My beloved wife may no longer be by my side, but she will forever shape the way I see and live my life. It is her last and lasting gift to me, and one that I am honored to share.

At the end of the day, Terri and I not only accepted our circumstances, we embraced it and infused it with the love we had for one another. It was not always easy, but our conscious decision to choose love and positive emotions, regardless of what lay before us, kept us afloat to the very end. I can say without hesitation that Terri lived with ALS in relative peace, making the most of each day she awakened to see the faces of her loved ones around her.

More Love, Less Fear offers no magic solution with which to conquer ALS, although we certainly gave it our best shot. Once she had exhausted the help of western medicine, Terri turned to a holistic approach, hoping that it would help prolong her life—which it did somewhat successfully. I call it a success, because she lived until her last breath without the need for a breathing machine or feeding tube, and enjoyed better than average health, ALS notwithstanding. Included at the end of this book are excerpts from her blog and notes for the book she had wanted to leave behind. It offers detailed information on some of the products she used, changes in her diet, and other health tips and guidelines. Whether you, or someone you know, are suffering from ALS or any other illness, Terri’s self-help guide may be of some inspiration. Take from it whatever help you can. She certainly covered a lot of groundwork that she was only too happy to pass on. That was her way.

I hope you’ll stay with us as we share with you the rollercoaster journey that took us to our lowest and highest points as a married couple. To say it tested the mettle of our vows is to be flippant. The truth is that living with ALS made us confront and challenge the very concept of what it means to love someone unconditionally. It was a test unlike any other.