It’s OK to have a Sh***y Day

How are you?
Ahhh! If someone asks me that I will scream!

How the hell do you think I am?! My loved one is dying, I’m loosing them a little everyday. I am exhausted, stressed, and don’t have time to put up with nonsense. My loved one hates that they depend on me for everything now. I know it’s painful for them to feel this way. I try to not show my frustration, but it boils up sometimes.

I’m sorry you can’t do… any longer. I’m sorry you’re embarrassed to be seen this way. I’ll be patient and support you. When you’re ready we can move on from this isolation, until then I am here. I personally don’t care what others think or feel, I know who you still are. You are mine and I am yours, that is all that matters.

I know I snapped at you, that was in response to you snapping at me. Neither of us meant the things we said. I know they are in fact aimed at your ALS, we just happen to be in the line of fire.

I know, I know, you do tell me you are fine, but I know you, you’re not. Thank you for being brave for me.

I effing hate ALS!

This sh***y da will pass. But right now it’s okay to feel the way I do, I’ve earned it.
(Dedicated to caregivers ❤️‍🩹❤️‍🩹❤️‍🩹)

Juan Reye

Alone but not Lonely

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 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 scurry 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 wonder 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.

Juan Reyes