One Father's Extraordinary Journal of Living Longer with ALS
Healing is Hard Work

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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Tomorrow, my live-in aide, Jimmy, will be starting a well deserved ten day vacation. Knowing how difficult it can be to find an acceptable replacement, he gave me plenty of advance notice. About six weeks ago, I was lucky enough to secure the services of a former aide who was familiar with my condition and routine. Unfortunately, he backed out on me three days before Thanksgiving, leaving me with less than two weeks wrapped around the holiday weekend to find a replacement.

We pulled out all the stops and put together a variety of coverage plans. My first step was to call my care manager, Bonnie, to find candidates for the position that I could interview as soon as possible. I also put out emails to my friends and congregation looking for people who could fill in some hours, so that I could put together a schedule of potential care givers. This second option of using friends was also dependent on being able to move Lloyd’s (my afternoon aide) hours to the morning in order to have someone available who was able to move me out of bed and through my toileting and dressing routine. The third option was to temporarily move me into a nursing home, a last resort that I really hoped to avoid.

After interviewing three aides, I was unable to find one that was capable of performing both of the two most critical tasks – transferring me and understanding my “ALS accent”. Offers from friends began to pour in to cover multiple four hour shifts. Unfortunately, there were not enough people available to cover the daytime hours. To make matters worse, my good friend, Gil, who is often available to assist me in situations like this was recovering from surgery and unable to help. It is my wife’s busiest time of the year with her high school choir concerts keeping her out until late at night multiple times per week, and my children’s schedules would be keeping them out of state during the time Jimmy would be away. As if this wasn’t enough of a challenge, it turned out that there was no room for me in the nursing homes.

On the day before Thanksgiving, I was down to my last, although best option, and had one more health aide to interview. My last hope was a 19 year old Lithuanian, named Will, with only a year of experience. As it turned out, that year of experience included a client with physical limitations similar to mine, and Will was able to transfer me with ease, and understand me better than most people. I was saved, and Jimmy was able to continue with his vacation plans with peace of mind.

The most remarkable part of this experience for me was that I was able to remain fairly calm and focused throughout the ordeal, while those close to me were displaying higher levels of concern about how the situation might not work out in my favor. By staying in the moment, remaining calm, feeling grateful for the groundswell of support coming from my friends, and doing what was necessary, I weathered the storm, found the resource I needed, and averted a crisis. Living with ALS has taught me time and again how being in the moment, gratitude, and focusing on what you can control or influence can contribute to transforming difficult challenges from nightmares to miracles.

Have you had similar experiences? Please share them.

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