20. What Do You Mean, Never
A Poem...and then Saying The Hardest Things Gets Harder
These two posts, the first a poem, the second, the continuation of the story on Jan 11th, one day before Sally’s lost consciousness, continue to be a poignant reminder to me of that incredible, lost, in love time. May 5th means so much to me and meant so much to us. It was our anniversary, our most beloved cat Cinco’s birthday and Cinco De Mayo, a celebration that we often loved for the excuse (albeit misplaced) to celebrate our love of Mexican friends and culture…Five is a big number in our family and we loved May 5th. As many of you know a year ago, today, people showed up here to our home to express their love, gratitude and sadness for Sally. We listened to music, spoke words, enjoyed each other, cried together, layed in shock and burned, in her honor, the destruction of one thing, down to the ashes, only to rise again as something else, more, new, reborn…This was an important ritual for Sally and today and every May 5th we will burn again and rise again.
Origins Of Love
I don’t want to share you
I want to keep you to myself
I want you all for me
none
for anyone else…Like you, I had fantasies
stories of how it’s supposed to be
things I loved that weren’t real
beyond the truth of what I feelWhat’s real are those you touched
from far and wide
a love, a love…too much
to comprehend or understand
to measure, debate or plan
a love that lives inside those hearts
that you brought out
in graceful art
and I don’t think the people knew
and maybe, neither did you
the gift your art and grace
relayed
where origins of love
are laid.
3/26/23
Chapter 18 – Saying the Hardest things gets harder
It was 8:23pm on Tuesday, January 11 when I put that message out. Sally and I had spoken, she remained defiant but also open, it was a strange and powerful mix of emotions, it was as if she understood the importance of people coming to see her and she wanted to see those she loved and that loved her and, at the same time, she didn’t understand what all the fuss was about. Very strange. Very confusing. Very beautiful.I had plans that night, meetings from the perimeter of my life, the outer edge which was least affected by health and love and loss and cancer. It’s interesting looking back now, I (we) had become so adept at our life situation that we hardly missed meetings, or at least I hardly missed them, I was still trying to keep an outer life and Sally encouraged it. I had, of course, whittled down everything but the most important to me and there were a few commitments I had kept.
But not tonight and I had to make a call. It was a shock, an emotional shock because as I heard myself on the phone, talking to a friend and asking him to take over for me, at that moment it hit me. Because of how we’d done it and because we’d been able to maintain a small sense of life outside cancer, it hit me that my worlds were colliding. The separation I’d tried so hard to keep didn’t really exist in the first place except within my illusions and on Wednesday, Jan 11th, the illusions shattered.
I think others who have been in a similar situation might understand.
During the last 12 months I’d been able to do meetings, with Sally on the couch, even in the hospital, I could spend some of my time on these things that seemed and were important I got to go away into another world for a minute and then come back and Sally was there. I could share with her how it went, she could ask questions, or we could just not pay attention to it and talk. We responded in all these ways as we navigated the cancer pool together and it always struck me as strange that, in some ways, cancer changed nothing. We still had our opinions our disagreements, our annoyances, we had our support systems in each other, and the things that still drove us crazy about each other. It’s just that we had these things while Sally had cancer.
But not tonight. Not after the news the Doctors had given, not after I had to send that text. My god, not tonight. I was scared. I was so scared and so sad, and I didn’t know what the hell was going on. I know this now, sitting here in our house on Bill Hill at dusk, with our son in the other room and the couch empty. I know it now. But then, on that Wednesday night I was trying to get through without falling apart.
Jake was always our primary bond. Being parents together was the most joyful and powerful experience of my life and I think Sally would say the same. It literally was the bond that kept us pushing through all other challenges, and there were many. On her literal deathbed Sally would open her eyes and respond to my comments about Jake or to Jake himself. There were times when I believed her love of Jake would be enough to save her. In the end the energy it took for Sally to simply open her eyes was her marathon. Imagine, opening your eyes and focusing your mind was as difficult as running a marathon…that’s how it was, that was her capacity at the end and it was always Jake who was that finish line and up until she lost consciousness, she never once failed to open her eyes and mind and heart to him.
Jake had come in for an hour or two. He was in the middle of basketball season and my mother and father were dividing their time so that someone was always with him. I will write more, because there is so much more to write, about how folks rallied to him and for him. Among other incredible things this allowed Sally and I to maintain a sense of normalcy and surround him with positive energy and love. Sally and I did not want anything else. We did not want him mourning his mother before she died, and we worked hard and felt hard about what this meant and how to do it.
Earlier that day there had been other family stopping by, so Sally had a full day. We were hungry and Sally wanted fried chicken and it came with my parents and Jake and after I stepped back into the room, we spread out fried chicken, macaroni and cheese, biscuits, mashed potatoes, gravy, and French fries. Sally had all these things in front of her and in the past, this always meant good things. Eating meant good things. It meant good things tonight as well because we laughed with each other, my dad told good, bad jokes, Jake got to see his mother, we had the football game on, and it was just like normal life. Except we were in a hospital room and Sally had only one more day of consciousness left.
I can write like that now, in retrospect, but that night, eating fried chicken, I watched her and how little she ate and how...removed...not by choice, but like in and out, in and out. We toasted, as we always did that last year, to health, to family and we looked in each other’s eyes and we smiled. Jake headed back to Bliss with my mother, he had school in the morning and basketball, kisses and hugs were given. Mommy hugged her boy and off he went.
And there we stayed, Sally and I for one more night together. She was taking Ativan more regularly now; she had the breathing tubes in her nose, and they were pushing air into her lungs. The Ativan helped her to relax, helped her, I hope, to forget about her physical struggle for a bit but it also put her out and so we didn’t talk again that night.
Edited 5/4/24