I’ve been thinking a lot these days about the number of adjustments are made to accommodate the growing inconveniences of ALS.  At the same time, I am grateful to still be able to make these adjustments in order to maintain adequate functioning.

When I worked with teams in organizations, and coaching individuals, a story came to mind to illustrate how accommodations can work to help or hinder.  If you were to put a frog in a pot of boiling water, he will immediately jump out to avoid the pain and sure death.  However, if you put a frog in cold water and heat it up gradually, he will adjust to the ever increasing temperature until the water boils, and he dies.

Every day healthy people make accommodations that can contribute to a subsequent illness.  Being in an unhappy relationship, a thankless job, or other situation with no escape, people adjust often to avoid having to make a move into the unknown.  Usually, the reason for non-action is fear based.  As in, “this relationship is dead, but maybe if I stick it out, somehow, it will improve.”  Or, “I am not appreciated in my job, the powers at be are overly critical and I don’t fit in this organizational culture, but I cannot afford to leave.”

We, all to often, live in these deadly situations for years, not realizing that we are killing ourselves, inch by inch, day by day.

Accomodations are also made to deal with illness and the loss of capability.  I am learning that one can use one’s fist to shave, and to turn on the car.  One can hook a fork into one’s zipper to pull it up; one can wear a brace to keep one’s shoulders aligned so that one’s posture remains straight and head doesn’t pitch forward.

A feeding tube can be installed when one can no longer chew or swallow efficiently, and a respirator can be used at night to clear the carbon dioxide out of one’s lungs, enabling more oxygen to fill them.  An adjustment can be made to endure the sound of said respirator, and the tightness of the face mask which fits over one’s nose and mouth.

A wheel chair can be used at the airport to get to the gate without being winded and the dog can go on shorter walks when the cold weather takes one’s breath away.

Your spouse can make all the important phonecalls, advocating for Medicare to cover health expenses for essential serices, and give up part of their social life because you are too tired.

Cumulative adjustments are made as we live as fully as we are able in the face of adversity.

Today, my goal is to urge you, dear reader, to be aware of the adjustments and accommodations you are making.  In your heart of hearts lies the truth.  Are you avoiding reality because you are afraid to make changes that will inevitably effect your future?  Are you afraid to make those moves that may bring fresh new life, while risking facing the unknown?

Looking back on my life, I have been a “stayer.”  Two jobs that robbed me of my creativity and sapped all of my energy were not worth the pain.  I take complete responsibility for my choice to stay, but I cannot help but believe that the fear that held me hostage contributed to my illness.

I have come to know that life holds no security; security is an illusion.  When one embraces that knowledge as fact, one is free to be bold and know that living fully is priceless.  The really cool thing is that our inner voice does not lead us down the wrong path.  But, we must listen.  Whenever we push our awareness into a dark corner and move forward in a direction that we know, on some deep level, is a mistake, we will face dire consequences.

And so, as I now make accommodations in order to maintain the highest quality of life available to me at this point, I feel compelled to share what I have learned, for this is part of my journey.  To teach others what I have learned.  God bless.