Friday, March 18, 2011

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?

Friday, March 4, 2011

A New Voice is Coming to Town

A few weeks ago, I wrote to you about how difficult it has become for people to interpret my ALS accent, and the difficulties it presents for both me and those trying to understand. Recently, we discovered a device that may provide at least a partial solution. It is a small computer made by a company called DynaVox (DynaVox Mayer-Johnson | AAC Communication Products & Services). This device will attach to my wheelchair, and is activated by the movement of my eyes. By moving my eyes across various screens, I can scan a keyboard or lists of words and phrases, and when I find the one desired, a simple blink of the eyes selects it. After composing something to say, another blink signals the computer to speak it for me. It can be programmed with custom words and phrases. It can also be programmed to answer my phone and operate my TV.

Although it can take some time to blink in words and phrases in the moment, it will restore a good deal of my verbal independence, and enable friends to communicate with me again. For someone in the advanced stages of living with ALS, this machine is a God send! It will return freedoms, like changing the TV channel, for which I have had to depend on others for some time. It will also eliminate a good deal of frustration and energy drain on my part and those trying to communicate with me by reducing the need for constant repetition of what I am trying to say. Having recently lost my ability to safely taste most of my food, the restoration of these freedoms will be particularly sweet! Hopefully, the device will arrive within the next few weeks. We are looking forward to it with great anticipation and excitement.

The old saying, “when one door closes, another opens” comes to mind. What experiences have you had that remind you of this phrase?