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There are times when I feel alone, on this, my ALS journey, knowing that I am not. I’m sure many of my fellow ALS’ers feel this. However, we are alone in the sense of the growing isolation that accompanies this disease. Alone in the diminished physical capacities we experience. We do feel the miniscule nuances daily. We experience major losses alone until our loved ones notice them and remind us of them, with a glance.

We are alone with our thoughts, as they wander through the crevices of our minds. Like rats scurrying through the halls of a once thriving mansion, now a husk of what it was. Haunted by the memories of who we were, and hoped to be. Our bodies screeching like Poe’s raven; never more, never more. Never more… walking, hugging, speaking, breathing.

Am I alone in these thoughts? I think not.

We al must pass alone from this life, it’s a singular passage. It’s OK to feel alone, nothing wrong with it at all. The pain comes when you feel lonely. Alone, we can create, while our minds explore countless worlds within. Alone we can inspire others with our creations, inspire the world even.

Lonely, though, is the nemesis of alone. It can insidiously infiltrate the soul and drain you of hope. Lonely is experienced by too many, for a myriad of reasons. Sometimes self induced, most often inflicted.

I can feel alone, but I’m blessed to not feel lonely. I am surrounded by love. I am valued for what I still have and what I’m able to share. Most importantly, I value myself and what I still have and can do.

I wish you fulfilling alone time, and hope you don’t experience loneliness.


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3 commentaires

Ina Sayre
Ina Sayre
08 févr.

This brings to a whole new perspective of how my mom must have felt during her journey with ALS. Thank you for sharing this.


Loved the reference to Poe, Juan!!! My problem with "Alone" is that I enjoyed it so much in my previous life. I am blessed with so many who surround me with care in this current life. But I miss being able to care for myself, and being able to spend time alone.


23 janv.

such a lovely reminder of the differences of ”alone” vs “lonely”

this reflection is much appreciated.


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