Dante's Missing Circle: The Tenth

 In Dante’s Inferno he refers to nine circles of hell, each unique in its designation and merits for being there. Because ALS had not been identified (discovered) yet I believe that if Dante had been aware of ALS, there would be a tenth circle, the Perpetual Suffering Circle, this would be the one those affected by ALS are relegated to; the hell on earth circle.

Few things come close to truly fit this description of hell on earth, many are a design of our own minds. Conversely there are many instances in our world that are sadly, apropos. With respect to diseases, I can attest that ALS is befitting of this description. As much as I know we the afflicted are living this hell on earth, there are those that are living it at our side. Our families, especially family caregivers.

As much as I would like to say we the afflicted have the brunt of this, I believe that our families have it worse.  Here is my reasoning:

·       We, that are living with ALS, learn to live with the physical decline, no choice, really.

·       Our families must witness the decline and take on massive responsibility, to keep us alive.

·       The mental toll on our families is immense, compounded by complications that disrupt the rhythm of our days.

·       When we end our journey, our families are left with the grief and trauma of the entire experience.

·       However, it is the inability to do anything to comfort or stave the ravishes of ALS, that truly destroys the soul.

From a personal perspective, I have recently witnessed this for Meg, please forgive me if I over sharer, with my recent hospital admissions.  As I laid in the hospital bed, recovering, she was confronting the very real possibility of my passing unexpectedly. I will confess that I didn’t realize, or understood the profundity of this traumatic state of mind. Not until we started to unpack it at home, with brutally honest conversations.

Conversations that required delving into uncomfortable truths, truths needing to be addressed, for both our sakes. I was oblivious to the mental anguish Meg had endured. It was hell on earth to see me in such a frail and vulnerable state. Never in her wildest nightmares had she imagined having to hear “Code Blue” with me as the patient. No dramatization comes close to the real thing, by far. I can’t speak for everyone, but there are times when I  am so focused on the disease and what it is doing to me, that I am blind to the impact to my family. After listening to what they share, and reflecting on it, do I realize the pain they endured. As Meg described seeing me unconscious and intubated, I could feel the fear emanating from her. It hurt to seer the hopelessness in her eyes. On the verge of tears, she described the moment she was pushed out of the room, as a nurse tried to comfort her.

I know the same look will return when my journey with ALS is complete. I will be at peace free of ALS.  She and my family will continue in the tenth circle. Living with the loss and pain; comforted only by fond memories with the passage of time. Still they remain in the circle of perpetual suffering.

TJO