One Father's Extraordinary Journal of Living Longer with ALS
Reconsidering My Words

Sorry it has taken so long to get out another post. I have been going through a rough time. Adjustments to the feeding tube have resulted in weight loss, and consequently, strength. I am currently unable to operate my computer independently, making it difficult to keep up with the blog after getting through email when I have help. Hopefully all of this will change soon. Until it does, I will try to get out a post at least once a month.

It has always amazed me how new approaches to healing seem to emerge just when you need them. After the insertion of the feeding tube provided my wake-up call, Howard Guttman’s quotes of my own words in his latest book and Dr. Craig Oster’s Healers of ALS (HALS) revealed to me practices I had been neglecting and needed to re-implement. In addition, the HALS group has been helping me to explore more deeply the psychological paths to healing. A new member of the group may also have made a valuable contribution to my dietary regimen. Although she has been living with ALS for a much shorter time and is less advanced in her progression than I, she has had greater success in reversing symptoms. While we both follow primarily a raw vegan diet, there are a few elements to her diet that I have deliberately omitted. I am currently investigating a program that I believe guided her efforts, and one which claims to have reversed several cases of ALS.

Along with my HALS involvement, I have been working with a fellow by the name of Marty Murray. I didn’t know what had originated Marty’s interest and dedication to helping PALS heal. During a recent visit to my home I discovered that he is on a mission to make the world healthier. His passion for healing grew out of some personal development activities that led to his discovery of ways to cure his own ailments. He claims that the few who have stayed with his challenging methods have all experienced some sort of turnaround, even those living with ALS. His methods are quite controversial, requiring that PALS accept the premise that the disease is a function of the way they operate. See the website Making-Connections. Some people perceive this as a form of blaming the victim. In my own case, I found that accepting the notion that I have somehow brought this illness on myself is empowering. If I have the power to create it, then I also have the power to heal it. I came to this way of thinking long before either Marty or Dr. Craig entered my life, and have found them both to be welcome partners in strengthening the mental and spiritual components of my healing program.

Recently, while trying to comfort another HALS member, I mentioned that I rarely allow myself more than a few moments in a depressed state. In the past few months, this belief has been challenged several times. Just last week, a trip to the emergency room for dehydration coming from some ill-considered premature changes to my diet, shook my convictions. An ill-conceived prescription (something that I don’t often take) worsened my condition, causing me to suffer for days with severe stomach pain. Throughout this ordeal, I have struggled to fend off thoughts of losing my battle with ALS, and fighting to refocus on my intention, affirmations, and healing practices. It has been incredibly difficult. Fortunately, as the pain has eased so has the struggle. I finally feel like I am getting back on track. Moral of this story is: it’s a lot easier to follow your intention when you are feeling well, but you may become totally lost without one. How many of you have found your intention to be a valuable compass in guiding you back to a positive perspective?

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Believing that you can actually heal when the conventional wisdom tells you there is no chance of recovery takes a great deal of conviction, focus, and discipline. As I wrote in my February 14, 2011 post, I had lost my focus and discipline over the past year or two, and it cost me gains that I had achieved in my physical condition and more. Since the “Wake-up Call” that I wrote about last month, I have re-instituted practices that I had lost track of, such as meditation and mental trips to the gym. My focus now feels restored, and I am more hopeful about regaining lost abilities.

In working on my “From Nightmares to Miracles” manuscript recently, I came across some words that describe the challenge of continuing to believe in recovery despite evidence to the contrary. The way I put it was this: “when the person staring back at you from the mirror is barely more than half your normal weight and lacks the strength to hold or move a pencil or even wiggle a toe, belief in recovery can be difficult to maintain.” It takes constant due diligence to replace negative thoughts and emotions with positive ones and self-love. As I discovered early in the process of battling ALS, “The choice had become simple: believe, as the doctors had told me, that there is no recovery from ALS and die, or believe that recovery is possible and go about discovering how to do it“. I chose, and continue to choose the latter.

When the dark moments hit, it can be very difficult to stay the course. Recently, a fellow PALS (Person with ALS) was going through a difficult time that was challenging her will to continue the fight. In an effort to help, I wrote the following email describing what I do when things get tough:

My heart goes out to you. Times like this can be very scary. When I have faced such moments, I have found three things to be particularly helpful. One is to remind myself that it all comes down to one simple question, “Do I want to live, or do I want to die?” Doctors don’t decide that, nor does a disease, you do! Every thought, decision, and action you take flows from your answer to that question. Each time I have confronted myself with that question, and reaffirmed my will and intention to live, I have come through it stronger, more focused, and in a better state of well-being – not always what I was hoping for, but always better. At times, there have been physical improvements, sometimes just a mental readjustment. But remember, where the mind goes, the body follows.

A second thing that has helped me through dark times is to put more energy into my affirmations and gratitude list. There’s an old saying my colleagues and I used to use in our consulting work: “You can behave your way into a new way of thinking, or you can think your way into a new way of behaving.” It took me about three years to really start believing my affirmations, but the more I practiced filling my head with them and other positive thoughts, the less room I had left for things like fear and doubt. Remember, where the mind goes, the body follows, and you can program your mind with positive thoughts.

The third thing that has helped me is a particular affirmation that I recite daily, and as needed: “I believe in living in the moment, total present time, going with the flow, and loving the challenges.” Each time I have lost a bit of strength, I have nearly worn this phrase out reminding myself to stay in the moment. Observing a new physical loss as something that is happening right now, in this moment, rather than projecting it into the future as a permanent change, makes it a lot less scary, and allows you to keep your mind focused on healing. Using this strategy, I have often found that lost strength returns, including things like hand strength and breathing.

Unredeemed losses have occurred when I have lost sight of my intention. That’s how I wound up with a feeding tube! I have been living with ALS for 11 years now, and there have been lots of ups and downs. At times I have needed a wake-up call to remind me to realign my behavior with my intention. Joining this group (Healers of ALS) is among my most recent wake-up calls. Your courage and honesty in sharing your history and struggles have been inspiring to me. I hope you choose to go on fighting, but only you can decide. It’s a tough battle, but you can win it, and we are here to help.

Her response seemed to indicate that she found these words to be helpful. In my experience, whether it be living with ALS or dealing with other difficult challenges, I have always found that knowing what you want, being positive, and staying in the moment are key to a successful outcome. What do you think?

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