One Father's Extraordinary Journal of Living Longer with ALS
Turning Nightmares into Miracles by Reframing

When you lose 90% of your ability to move, it can have a dramatic impact on your self-perceptions and your expectations about what you can do to have an impact on your world, and enjoy your time in it. As a management consultant (http://www.guttmandev.com/), I was accustomed to using gestures and my voice to teach people how to communicate and influence each other more effectively. Those capabilities are now gone. My arms can barely move and my voice is too weak to produce words with the volume, inflection and tone of which I was once capable. As a parent, I can no longer comfort my children with an embrace or speak to them clearly and quickly enough to offer efficient guidance. Favored recreational activities like tennis, hiking, and skiing are, at this point, only pleasant memories. It would have been easy, given these developments, to view myself as less of a human being, a mere remnant of the person I once was, now dependent on others’ arms and legs for the satisfaction of virtually every physical need. I am certain that accepting this view would surely have put me in the grave by now, and robbed me of further contributions to the world.

There are many factors that helped me to avoid this nightmare, many of which are discussed in my book. Ultimately, I had to shift my perspective, not so much about who I was, but how I might deliver my unique contributions to the world around me. There were several other perceptions that had to shift in order for me to reach that point. First, I had to reframe my understanding of my expectations for ALS. When the doctors told me that there was no cure, and the disease must always end in death, what I chose to hear was “I have no idea how to treat this illness.” This reframing led me to search for alternative methods of healing.

Another shift I had to make was away from the notion that I could not influence people without my arms, legs and voice intact. I began to notice that people were reacting to the way I was handling adversity. Through technology, I could still reach people with my words. By taking on the challenge of recovering from ALS, I could share what I was learning about coping with adversity through the computer.

Through the combination of: strong will; clear intention; the love and support of friends, family, and caregivers; the use of technology; the benefits of alternative healing; and reframing how I see myself and my abilities, I regained my capacity to do what I have always done – teach people how to be more effective in what they do and how they contribute to the world.

ALS has given me the opportunity to understand more deeply who I am and what I have to offer. It has also enhanced my creativity in how I go about it. By taking away my physical movement, it has forced me to find other ways to enjoy the world around me. Though I can no longer hike or ski, I have learned to employ bird watching as a way to preserve my connection with nature. By reframing how I connect with, contribute to, and enjoy the world around me, I have turned my nightmares into miracles.

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Valerie Lemme is a practitioner of the journey process, developed by Brandon Bays (http://www.thejourneyusa.com/). She and I have been working together on a monthly basis for about a year and a half. A few weeks ago, Valerie guided me through my most powerful journey to date. We began, as always, by getting me into a very relaxed state. Next, she asked me to open an imaginary door to discover who my mentor would be for this particular journey. It turned out to be my father, who I had lost more than 40 years ago when I was only 18. It felt good to be with him again.

There are two types of journey processes, an emotional one and a physical. In our work together, Valerie and I usually combine them. So as I lay there, eyes closed, relaxed in my wheelchair, she instructed me to get into my special vehicle with my dad to begin the physical journey through my body. After traveling through great open spaces, over deep dark chasms, and careening through tight, curved apertures, the vehicle gently set us down on the floor of a dimly lit arch-shaped tunnel. Upon emerging from the vehicle, Valerie asked me to describe the floor. It was a dark, gooey, kind of tar-like muck. To begin the emotional journey, she asked me, “If there were some feeling coming from this muck, what would it be?” What occurred to me was the sensation of being stuck.

The emotional journey consists of allowing whatever emotion comes up to totally overwhelm you. You simply allow the emotion to grow and grow in strength and infuse your entire being. It can be a very intense process. When you give yourself up to an emotion, allowing it to have its way with you, you eventually reach a point where the intensity peaks, and then begins to subside.

So in this particular journey, Valerie asked me to let the feeling of being stuck have its way with me, to recall every situation throughout my life in which I felt stuck. Once the emotion had run its course, she asked, “Now what’s beneath that, what’s there now?” At this point, the emotion of frustration emerged. We repeated this process until no more emotion was present.

Usually, as I allow myself to fall through these layers of emotion, memories come up of traumatic situations involving specific people. A fundamental purpose of the journey process is to surface and resolve the traumas associated with these memories, which can often be the triggering points or sources of illness. So, Valerie through her listening, probing, and coaching will help me determine which of the people who come up in these memories I need to have a conversation with to resolve the issues. We then sit around a campfire and peacefully exchange views to air out and resolve our concerns with each other.

In this particular journey, no particular people came to mind. As it turned out, all of the situations and emotions revolved around my ten year battle with ALS. I was stuck in my wheelchair, unable to lift an arm or a leg. I was frustrated that after six years of exploring and engaging in alternative medicine, I was still not able to walk again, or even lift my arm and move a finger to scratch an itch, hold a pencil, or use a fork to feed myself.

Listening to all of this, Valerie came up with what I thought was a brilliant suggestion. Since there was no person emerging from my memories with whom I needed to have a conversation, she said, “How about inviting ALS to the campfire?”

ALS showed up as a black, gooey mass, similar in color and texture to the floor of the tunnel where our vehicle had delivered me and my dad. With the work I had done over the past few years, all the negative feelings, like anger and resentment toward the disease, had been washed away. The mixture of emotions coursing through my body in the presence of this mysterious blob included amazement, curiosity, amusement, and gratitude. It was the gratitude that I felt compelled to express.

I told this apparition how grateful I felt for the many gifts of friendship, support, insight, and growth that had come my way in 10 years of living with the illness. Then I told him, “But I think I’ve learned what I needed to, and it’s time for you to go.” He responded, “Even if I wanted to, I wouldn’t know how, and if I did leave, it would be my death.” “Have you considered,” I responded, “that if you stay, and bring my life to an end, we will both die?”

It took Valerie and I a few moments to compose ourselves in reaction to the unexpectedly humorous tone of the answer. “Gee, nobody never splained it to me that way before” Once I managed to stop laughing, I asked, “Well, how about this? Since neither of us knows how to part company, and since there’s no pay-off for you to stay, would you be willing to leave it in the hands of a higher power to arrange a separation?” My heart swelled with gratitude and relief in response to his affirmative response.

My dad then proceeded to cut the sickly, neuron-like cords that we now noticed had been binding me to the tarry mass, and hosing me down to cleanse me of all connections with the disease – all according to Valerie’s instructions. As my mentor fulfilled his duties, I observed the tarry blob lighten in color, and melt into the ground, which began to transform into a smooth, paved path replacing the sticky floor of the tunnel where we had landed earlier.

As if the symbolism of these events wasn’t stirring enough, what happened next left me absolutely blubbering. Dad put his arm around my shoulders, looked me in the eye, and softly spoke the words that he shared with everyone else he knew in life, but was never able to say to me. “I love you son, and I’m very proud of you.”

Two days after this adventure, my hands were functioning with a level of strength that had been absent for months! I was driving my wheelchair with far less assistance, and operating my computer mouse with much greater ease. Is this the beginning of a new level of healing? Stay tuned! We’ll find out.

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