My most discouraging words of encouragement

My beautiful Spanish lover boy blooming in Salvador Dali’s garden. Cadaqués, Spain

It was the beginning of August, and Daniel was nearing the precipice of his life. And while it was probably glaringly obvious to everyone around us, I am baffled that I didn’t see it coming.  

We had checked him back in to the stem cell transplant floor in June, aka Hotel California (because he never did leave). All of the systems in his body were collapsing like a house of cards. And mystifyingly, the doctors continued to subject him to brutal and hopeless procedures right up until the bitter end. 

I was running around like a chicken with its head cut off. My daily routine trying to keep Daniel afloat was impossible. I was beyond exhausted, running on fumes. But I didn’t dare admit that, even to myself. Becuase if I was exhausted, then what the hell was he? 

I have had a hard time forgiving myself for all of the ways I didn’t measure up to my unattainable version of a caregiver.

Ya know…glowing with positive energy, gracefully absorbing each devastating day while providing an endless supply of easy smiles, comforting pep talks, and grounded stability to my fragile man.  My superhero cape was thread bare, and I felt like I was falling short.

One day, as Daniel was having an especially tough time, he asked me for some words of encouragement. And my heart sank because for this non-verbal, shy introvert, he may as well have been asking for the moon.

Daniel was one of 3 boys deeply involved in sports growing up, even taking a run at semi-pro hockey. He was a natural cheerleader to everyone in his wake. Always sharing an abundance of support. Coaching, pep talks, and encouragement was second nature. And on this day, he needed me to give him some of that verbal enthusiasm. And he rarely asked for any support.

I sat beside him in bed as he drifted off for a bit, pulled out my notebook and attempted to find the words he needed. Instead, I wrote the beginning of the most discourging note of encouragement. 

Its awful, I know. So much so, that I couldn’t even finish it. Nor could I bear to give him the saddest note of encouragement that ever existed in the history of pep talks.

These are the words from my tear-soaked page:

Daniel, my dearest love,

I sit here perched upon the edge of your bed as you lay quietly next to me, eyes closed, toque pulled over your head. I know that under that toque you are spinning in a syrup of nausea and exhaustion. As my eyes rest upon your face, I see a man who has been through an unimaginable journey. Walking through fire for a chance at more if this life. Your lips pulled downward at the edges express so much misery and discomfort. How on earth do I encourage you? I am not giving up nor leaving your side until we find a way through...

Ugh. That’s it. That’s all I could find. No pom poms here.

There are so many moments, especially toward the end, where it has taken years to forgive myself for not showing up in the way that he needed, or in the ways that I wanted to and would have if I could go back now with the wisdom of time and hindsight.

Even though I know that the truth is…we are all doing our best.

xo