My good friend Tim And I were returning from a mountain bike trip way up in western Maine. Tim is a part-time resident of this region but is a full-timer in his heart. He can fill the air with tales of of these lands, many based upon boyhood adventures. These anecdotes are rich with reminiscence and told by a great storyteller. I am always all in.
Not long into our trip Tim pulled over at the landmark known as the “Height of Land”. It is a place of long vistas, providing a close-up of Maine lakes and a longer look towards the White Mountains of New Hampshire. it is a stunning view-scape
It is also a dividing point. Going North, you return to the Rangely Lakes. Going south, you drive into the White Mountains of New Hampshire. The topography defines a leaving behind and a going towards. It is unspoken that either option involves a long downhill ride.
And so this becomes a life story. I am crossing my own height of land. Looking back, I have been living with ALS. Going forward, I am dying with ALS. This is more than a change of perspective. It also reflects a different reality. Until now, each functional loss could be replaced with an alternative function. No more. I now rely upon Allison or assistive devices. This is not what I signed up for. Living in wheelchair 24/7 is not something I mind. Being a burden on others is something I do mind. Constantly asking for help sucks.
There is also a loss of connection. Allison and I communicated in our private yakkety-yak. This rich patois was a mix of slang, shorthand, and other non-verbal nonsense. It was profane and distinctively us. Now my fractured speech is a low growl. It requires an intentionality that bypasses the brain’s regions titled “humor”, “insight”, and “emotion”. Even my expensive voice recognition software treats my words with contempt. This is akin to a loyal hound leaving for a warmer hearth.
The unwritten “Book of Life” doesn’t contain a chapter called “Dying: an Eighteen Month (Mis)Adventure”. Or, “The Guide to Online Shopping for Short Timers”. I know, bad jokes. And the reality is that I still control the narrative. In fact, the book is being written right now. There are still a lot of words, stories, and the emotions tumbling around on this bumpy ride down from my height of land.
More to come. Stay tuned.