It was on March 15 (the Ides of March) 2017 when our world began to shrink.  My wife and I left the neurologist’s office in Springfield, MA after the diagnosis and were sitting in the car outside when the process of withdrawal and isolation began.  “I suspect you have Lou Gehrig’s Disease” he had stated gently, leaving open the possibility that he might be wrong – a possibility we clung to for a few weeks – but he was not wrong.  The diagnosis of ALS marked the beginning of a journey in which the pace of our lives slowed down and became more isolated from those of you who are still living what we call “normal” lives.  In spite of the love of family members and the incredible support of friends and local community, the person with a terminal illness feels so very alone – some of the time.

The following excerpt is from a book by K. D. Singh titled The Grace in Dying.  It describes the feelings expressed by my wife, who has ALS, in words far more eloquent and accurate than either of us could write.  It is shared because she wants you to know how it feels….

Many wisdom traditions have developed insight into the transformative power of withdrawal or isolation, recognizing that a fundamental for spiritual evolution is “becoming friends with” our loneliness and our boredom. The time of illness is a time of withdrawal from the world, a time of isolation. The frenzied pace of life continues for friends and family of the one who is ill, but he or she can no longer participate. The person acquiesces to the expanding power of the physical disablements that subtly increase separation from the life he or she has always known.

Initially, this enforced withdrawal or isolation causes great psychological and emotional suffering. One experiences one’s self as removed from the world of the living, the world of mundane things. When this removal is not our choice, there are elements of anger and sadness and surprisingly sharp jealousy, even for those who never thought of themselves as begrudging people. We feel a nostalgic and deep longing for return to the life we once knew as well as the very difficult emotions of self-pity, abandonment, and hopelessness.

The isolation of terminal illness sometimes reminds me of a car broken down on the side of a great superhighway. Everyone else is speeding by, on their way to vacations, family reunions, and business appointments. They are off to Seattle or Boston or Gravel Gulch, traveling well over the speed limit and catching sight of the broken-down car in the rearview mirror only when they check to make sure there are no police on their trail. If you are the one in the broken-down car, you can feel in the hot rush of the wind of the cars speeding by the physical evidence of their lack of concern for your predicament. The noise and the rush are endless and there is in them ample proof that you have been abandoned by the world.

Gradually, however, you become accustomed to the sound of the rushing and it fades into a white noise, like waves, at the back of your mind. You begin to hear birds calling in the grass where you’ve pulled the car over. Wildflowers are growing and leaves are blowing in the wind. You become acquainted with the litter in the area, the temperature of the air, and the color and composition of the sky. The tiny space on the side of the road becomes home for that present experience, and your attention wanders to it and comes to know it. What had been the norm, speeding down the highway, is now a blur.

The slow drawing away sharpens the focus; attention is more present and intense. Withdrawal allows us to step out of the norm. Each of us knows this intuitively when we seek out a quiet opening in a pine forest, a hidden spot by the river, a solitary hillside, a secret place back deep in the sand dunes. Many spiritual teachers have suggested that their disciples leave “the marketplace” and retreat to the jungle, the cave, the desert, the mountain, the monastery, the hermitage, the meditation hut.

Withdrawal is recognized as a special condition that facilitates spiritual transformation. Withdrawal allows us to step out of membership in the social bands of our culture and, in doing so, begin to have a more direct and present-centered, less mediated experience of reality.

The aloneness of living with a terminal illness pierces many an illusion. A profound process of simplification occurs. Old values simply lose their appeal, their urgency. Nothing in the world of appearances attracts as it used to.  All that begins to matter in the world is the presence of loved ones.

Adapted from; Singh, Kathleen D. The Grace in Dying (pp. 129-132). HarperOne. Kindle Edition.

For more on my experience as a caregiver, see:

https://changingthestory.net/2019/08/14/caregiving/

and…

https://changingthestory.net/2019/04/12/caregiver-suffering/