The Gift of Breath is Threatened

After midnight, I awoke with a shocking sensation of air flow to my lungs being restricted. With sweaty palms, I assessed my plight as I lay alone in my apartment, confined to my bed. My caregiver had left several hours earlier, and I would be alone for seven more hours. I told myself to relax and focus on being aware of each breath to see if I could restore comfortable breathing with my mind. After a while, I realized that it would be agonizing to try to make it through the night on my own.

I decided to activate the Lifeline emergency pendant that lies next to my pillow. When I slid my left hand toward the pendant, attempting to grab it, my ALS-contorted fingers moved the button dangerously close to the edge of the mattress. "I must raise my fingers enough to go over the top of the button to pull it toward my body," I commanded myself. With adrenaline-fueled focus, I was able to raise my fingers for enough time to move my hand over the pendant to secure it. I pulled the pendant towards my body and was finally able to position my thumb to activate the button. After several shrill beeps from the speaker on my nightstand, the digitally pre-recorded woman's voice blared out,"Help-call in progress, please wait."

With labored breath, I waited to hear the voice of a real person. When the man asked if I needed help, I used what I had learned in speech therapy to make my speech intelligible. As I formed the words to express the help that I needed, I exaggerated the movement of my mouth for each syllable and put extra separation between each word. I felt great relief when he understood me. My friend arrived about 30 minutes later, opened windows, helped me drink water, and placed a fan toward me; after a couple hours, I was able to breathe more comfortably again.

After further nights of needing to activate the button, I began to feel panicky about being left alone at night. "Will I wake up to find myself barely breathing again?" I worried, adding tension to my body that was already riddled with chronic spasms. Then, to comfort and soothe myself, I silently said, "If it happens, I will handle it and I will not die."

Several weeks later, I ended up in the hospital emergency room breathing faintly, exhausted, and scared. The doctors concluded there was no respiratory infection contributing to my progressing trouble. I was someone with a diagnosis of ALS (Lou Gehrig's Disease), and people with ALS experience progressive, eventually fatal, weakening of their respiratory muscles. The doctors were impressed that I had survived 14 years with ALS, whereas most die within 3 to 5 years after this terminal diagnosis.

When they explained that EKG results showed I had a strong heart, my mother, who was sitting next to my father, emphatically remarked: "We knew that. You do have a strong heart filled with courage and love, and it's going to help you heal. It has to." The immense love and respect exuding from my mothers voice briefly distracted me from overwhelming feelings of helplessness, fear, and sadness that were hard to shake when the gift of breath was being threatened.

Within a couple of weeks, it was surreal to find myself signing up with hospice so that I could have some medical care in my apartment each week. Being in hospice was not part of the story I had managed to keep alive within myself for 14 years following the ALS diagnosis - namely the story that I was one of the rare persons who was turning this disease around. Although my energy was diminishing and breathing was a struggle at a whole new level, I was not ready to relinquish this perspective. With an enfeebled life force and tormented by uncertainty, I worked to animate myself as much as possible to make an impression on the two intake nurses, "I am not planning on dying! I just need more help now. Will you still work with me and respect my belief that I could live for decades from now?"

In the past, even when muscle mass disappeared with each passing year, eventually totaling 45 pounds, I kept faith that my healing activities were bringing me closer to reversing the damage ALS had done to my nervous system. I had kept - sometimes quite nervously - highlighting any sign of improvement, and my story and determination were especially reinforced when I had more than one amazing incident of increased strength.

As my breathing continued to diminish, and I needed the help of either oxygen or a BiPAP breathing machine to get through the night, I wondered how much more this could go on before my life would be extinguished by respiratory failure. I felt excruciating emotional pain about ALS killing me in a matter of weeks or months. Hospice helped me write my living will. This involved some very painful conversations with my girlfriend, parents, and closest friends. I made decisions about resuscitation, life support, the music that I would listen to as I was dying, memorial arrange- ments, and so forth. More than once I found myself gasping for air as I cried, "I'm... not...ready...to...die," generating truncated speech that was barely understandable because my weakened facial muscles were so easily contorted by agony.

Night after night, day after day, I was experiencing a new level of tormenting exhaustion, beyond that to which I had previously adapted. I found myself thinking that it might be easier to die than endure this new level of physical suffering. As ALS progresses, there is an increasing buildup of carbon dioxide in the body because the weakened respiratory muscles fail to properly release it upon exhalation.

No longer was I able to work out three times a week in the rehab gym until my shirt was soaked with sweat. This was something I had gratefully shown up to do, even when I felt like I could barely move. My life force had weakened so much, however, that I found myself only able to show up to exercise a few minutes - or not at all.

One day, which I thought might be the last day I could show up, I arrived too exhausted to even have my care giver move me to the green padded stretching table. I sat in the corner by this table and found myself repeatedly sobbing as each new series of vivid images flashed in my mind. I saw myself working out to the limit, people telling me how much I inspire them, loving interactions with staff and patients, having to die and say goodbye to my girlfriend, family, friends, and my passionate quest to use my healing journey to help many more people. I felt shocked and overwhelmed about my earthly existence possibly being erased so soon. My heart ached unbearably for the enormity of my wishes that would go unfulfilled.

With as much discipline as I could muster, I delved into profoundly deep places, especially through working with my nighttime dreams, which had me facing annihilation, terror, and my own cremation. How I could come back to emotionally believing in my possible physical healing in my severely weakened state, with my chest barely able to move? I had no idea how it could happen given how I was doing. However, through the love of people in my life, healing dreams, praying, and grace, I kept finding a way to bring my healing story back to life. I also became less afraid of death. I was living in, and moving between, two worlds: In one I was dying, in the other I had hope of healing.

I was determined to do everything in my power to heal, continued with my holistic healing program, and sought to use prayer and imagination power at a new level. I studied breathing, and memorized internet videos of virtual respiratory systems functioning perfectly. When I experienced doubts, or ruminated about how much I did not know, I challenged myself to choose new thoughts. Increasingly, I experienced myself as the awareness that is beyond all thoughts, yet I was humbled by how often I was imprisoned by identification with conditioned thoughts. Living or dying, either way, I desired the peace of inner freedom.

When my life force increased a little, I returned to the rehab gym. With my lungs barely moving, the treadmill was agonizing. I felt sad and frustrated when I had to force each inhalation and exhalation as I walked briskly while held by a harness on the inclined treadmill. After a few minutes, I began to make animal-like squeaking sounds and could continue no more. I rested, and then went back at it. I felt hope and gratitude after each workout because I could breathe a little easier; however, by the next morning my breathing struggle would be more like it was before working out.

Gradually, I began progressing in how long I could go at the full speed at which I had previously walked. I felt great victory when I finally forced my way through to going 25 minutes at the full speed, recapturing my former achievement with a sweat-soaked shirt. My lungs had to struggle much more than before, but if I could make this much progress, more was possible. Wearily, I prayed for motivation to commit to adding hours of "awareness movement exercise work" to my program each week in order to develop new neural connections in my brain. Finally, I developed the wherewithal to do this.

Six months after enrolling with hospice, they told me that even though I was still having significant breathing struggles, especially at night, I must be discharged from hospice. Medicare required documentation of unremitting declining health to continue to receive their medical care. Because of all of my efforts, and grace, I was not declining. My nurse was astonished when she measured my left upper arm and found it to be 2 cm larger than her two prior measurements. She took the measurement again and again to make sure that she had not made an error; the measurement was accurate.

Even though I had made progress and was being released from hospice, I was still having significant breathing difficulty, especially while sleeping and in the morning. One morning, with tears, I shouted out to a caring friend, "I feel so sad. It feels like I have a concrete prison around my chest preventing me from breathing in enough air." As I spoke, I was using frequent breaths because my loud anguished words quickly depleted the small amount of air my lungs could take in. I continued, "I just want the space within me to allow me to breathe in more air. I am not being allowed!" The sound of my speech was interspersed with crackling sounds coming from the plastic water bottle my hands were strangling, mirroring the way my body was feeling strangled.

Although my air space was limited, my friend's witnessing helped me to access precious space of another kind—space in which to become more fully aware of my inner experience that contained emotions that were sometimes too painful to bear alone. Striving to be aware of my thoughts and emotions at the deepest level possible was my passion as a clinical psychologist before ALS; however, this passion became even more intense in my quest to optimize my physical healing because of my understanding of mind-body medicine. Psychotherapy, dream analysis, movement awareness work, prayer/contemplation/imagination, homeopathy, and rela- tionships were all contributing to growth in awareness of the healing power within me. This, I believed, along with my evolving holistic healing program, was helping me heal.

More improvements have followed. I breathe much easier during my treadmill workouts, and I am closer to being able to breathe through the night on my own without requiring assistance. I also gained 7 pounds of weight, and the resulting muscle mass can be seen here and on my Facebook web site. I am expecting continuing improvement every month.

The story I had managed to keep alive within myself for 14 years following the ALS diagnosis—namely the story that I am one of the rare persons who is turning this disease around—is alive and well again. This vision powerfully pulls me toward the future, even when I feel like I can barely move; however, the real "turbocharged" motivating power in this story comes from the image I hold in my mind of using my healing to inspire, give hope to, and help thousands and thousands of people. I am currently working on my second inspirational video documentary. Also, a web page designer has volunteered to help me create a web site to offer useful health and healing information to many people, and to document my ongoing healing progress and discoveries through videos, photos, and writings.

I am thankful for everyone who has been a part of my healing mission, and I give thanks in advance to anyone who will choose to give any support to help me remain strong in this quest. Without the help that I have had over the last year, financially and in many other wonderfully caring ways, I would not have been able to be delivered from the valley of the shadow of death. This story is not over. I will keep showing up till death do us part, hopefully decades from now. (To be continued...)