Saturday, March 27, 2010

Thank God for Spring! A Blessing when Living with ALS.

You don’t have to be fighting a life threatening illness to be celebrating the end of a season that packed way too much wind, water, snow and cold. As someone who has lost a significant amount of his normal body weight, however, I find it particularly sweet. Even though I have regained close to half of what I had lost since the onset of ALS, inactivity from paralysis keeps me extremely vulnerable to the cold. My body doesn’t start to feel warm until the thermometer reaches at least 75 degrees. Venturing outdoors during the colder weather requires so much warm clothing that I can barely exercise what little physical mobility I have. The combination of the exposure and reduced independence can put quite a damper on my incentive to leave the house.

Gazing through my bedroom window in recent mornings, while basking in the warmth of the sun’s rays and studying the greening of the grass and the formation of the trees’ new buds, the rebirth that is spring surges inside of me. I look forward with the anticipation and excitement of a circus bound child to strolls around the block with my wife, visits with friends and neighbors, shopping excursions, dining out, trips to parks, and other outings. I especially look forward to testing the extent of the regained strength in my right hand for driving my wheelchair. During a recent walk with my aide, on one of the first days to break into the mid-sixties, my hand lasted far longer than I expected before experiencing fatigue. This leaves me very excited about the prospects for my increased level of activity this spring and summer.

Among the things that make living with ALS difficult is the constant bombardment by external reminders of the limitations it can impose. The bone-chilling feel of temperatures that used to seem mild reminds me of the frailty of my body. Inabilities to scratch an itch or grasp a pencil are among the constant reminders of the mobility ALS has stolen. Perhaps worst of all, is the loss of dignity and disrespect that can be suffered at the hands of well-meaning strangers who assume how badly you feel and behave out of pity based on the projection of their own fears of what it would be like to be in your place.

What facing such situations has taught me, as did the challenges of sleeping with ALS, is the importance of choosing how to focus my attention. Making conscious choices about how to view my circumstances has helped me cope with or prevent the stress of health issues, financial problems, interpersonal challenges, and other crises. Living with ALS has taught me that we human beings have tremendous power to direct our thoughts, and that our thoughts in turn have tremendous influence on our mental, emotional, physical, and spiritual well-being. So when I am cold, I work to focus my thoughts on my to-do list for the day. Instead of lamenting over my inability to deal with an itch or handle a pencil, I dwell on the gratitude felt over my continuing ability to steer my wheel chair. Rather than take umbrage over other’s misguided displays of compassion, I consider their intensions, and seek to ease their discomfort. Taking the time to appreciate the beauty around me is just one of the important, yet simple, practices that keep my attention positively focused. Thank God for Spring, which makes it so much easier to apply.

Friday, March 19, 2010

The Power of Being Present - A Key to Coping with Adversity

Perhaps the most important lesson that living with ALS has taught me about coping with adversity is the power of being present. Over the past few years, as I have refined my ability to do so, there have been countless instances where staying focused in the moment has preserved my energy, my sense of peace, and my sanity. One of my most powerful recollections of success with this process was an episode about 2 years ago while trying to brush my teeth. This is an exercise that requires a good deal of strategic positioning of my hips, torso, elbows, and hands. With my hands overlapped on the edge of the sink and propped up by a folded towel (for additional height and easier sliding along the edge of the vanity), my aide positions the barrel of the brush between my hands, and then places the brush head into my mouth. After removing the breathing apparatus from my face, my aide then carefully observes as I use the limited movement of my head and tongue to manipulate the brush around my teeth. Once positioned, I can typically complete this exercise in a minute or two without stopping.

On that particular day 2 years ago, the difficulty of the task became so intense that I ran out of breath more than once, turning red and then blue in the face, totally exhausted. As I turned over completion of the effort to my health aide, the fears began their war dance on my imagination. It seemed certain that ALS was progressing with its attack on my hands, neck and tongue. I began to panic. My mind raced ahead to pictures of a Joe Wions unable to move at all, completely dependent on others for even the simplest task, and incapable of communicating his needs.

As my heartbeat quickened and my throat tightened, the teaching of one of my then recent alternative health practitioners suddenly crashed into my consciousness. It occurred to me that I was projecting the experience of the moment into an irreversible and horrifying future. With this altered consciousness, I was able to tell myself, “This weakness is only happening now”. Focusing more and more in the moment brought with it a sense of peace and calm. I transformed into an observer rather than a victim of my emotions. As my body relaxed, the tensions melted away, as did, a short while later, the weakness. Two years later, I am still performing the activity with the same level of independence.

Since learning to surrender in my battle with the toothbrush, this technique of staying in the moment, of being present, has helped me over and over again. In the face of many potentially frightening circumstances, it has enabled me to maintain control of my wellbeing, solve problems effectively, and stay on track with my healing process while coping with difficult challenges. It worked when I lost funding for my health aide, and didn’t know where the money would come from to keep paying him. It worked when my wheelchair accessible van broke down, and I didn’t know how I was going to get home. It has even worked when something has gone wrong that took months to resolve.

My most recent example of a long term challenge began in September of last year when a change in my acupuncture protocol backfired, leaving my arms and hands so weak, that I could not operate my power wheelchair or my computer mouse. Again I had to fight off the panic. It took almost 6 months to accomplish the required problem-solving and healing, but today my hand strength has returned to about 90 percent of where it was back in September. Typically this degree of loss for an ALS patient is not recoverable. Through the power of being in the moment and staying focused on my intention to heal, I was able to cope with this difficult challenge and fight my way back.

There is an affirmation that I recite each day as part of my morning ritual. It goes like this, “I believe in living in the moment, total present time, going with the flow, and loving the challenges”. Whenever I find myself feeling threatened by a difficult moment, I recite this affirmation like a mantra. It has a soothing and focusing effect that never fails to restore my balance and power. There have been several instances during the past 6 months that this affirmation has been put through its paces. It has been my stalwart and unfailing ally.

Friday, March 12, 2010

A Tale of Two Nights – Rising to One Difficult Challenge of Living with ALS

Recently I read an article by historian, Tony Judt, called “Night”. It is one of a series of personal reminiscences that Mr. Judt has been writing for the New York Review of Books. In this particular piece, he describes what it is like trying to survive a typical night for someone who is nearly completely paralyzed. As someone with considerable experience in this endeavor, I can confirm that getting a good night’s sleep is potentially one of the most difficult tasks in dealing with ALS. Mr. Judt has been living with the illness now for about a year and a half. In his article, he describes the intolerability he experiences and the anger he harbors towards this unwanted and overpowering bed partner. He describes the challenge of getting through the night with eloquence and painfully detailed accuracy. You can find the piece at the following link:
Night - The New York Review of Books

As someone living with ALS for nearly a decade, and sharing a level of immobility comparable to Mr. Judt’s, the article stirs in me a great deal of compassion as well as a sense of “close to home”. However, what it brings into sharpest focus for me is the degree to which I have grown to master such circumstances by focusing my mind on thoughts that encourage, gratify and sustain me. After my health aide has completed the process of arranging my body for optimal possible comfort in bed, while lying there in a mummy-like state, I guide my mind away from my physical constraints. Instead, I turn my attention to prayers, visions of being healed, and gratitude for my remaining capabilities and the people in my life who sustain me.

It has taken me several years of dedicated practice to reach this point in dealing with the difficult challenge of sleeping with ALS. And even with years of practice, I cannot profess to have yet achieved a state of complete evolution. The result for most evenings, however, is to doze off within a few minutes of closing my eyes and rarely awakening more than once (usually to empty my bladder into a strategically placed bottle). Occasionally, I will have to disturb my wife’s sleep to handle an intolerable itch or an adjustment to my Bi-PAP. Fortunately, we are both typically able to fall back to sleep quickly and easily. My slumber is often accompanied by pleasant dreams in which I am fully mobile.

As if the battle with ALS was not enough for anyone to deal with, I am also a life-long member of the Tourette’s Syndrome club. The urge to twitch in a precisely particular way can be both mentally excruciating and physically irresistible. Imagine having an overwhelming need to flex a muscle while living in a state of nearly complete paralysis. Had I not learned to control the focus of my mind, I surely would have lost it by now!

Friday, March 5, 2010

An Amazing Journey of Alternative Healing

Valerie Lemme is a practitioner of the journey process, developed by Brandon Bays ( 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.