September 10, 2024
I Want to Tell You…That I am sorry I was so hard.
This old blog post keeps rolling through my consciousness:
The Good, The Bad & The Beautiful
June 16, 2009, 3:25 AM
On April 15 Jose had the blackout and fall and CT scan revealing the giant tumor. Since that time there have been 7 days in the hospital, 7 trips from Greensboro to Duke Hospital in Durham, 6 MRI or CT scans, 2 incidents requiring EMTs and emergency vehicles and countless sticks to inject things into or remove things from Jose’s body. There are certain predictable elements to each interaction with doctors and PA/nurse practitioners. They have their moment of amazement that Jose is as functional as he is in spite of a giant tumor and so much trauma and drama, then they remark about his resilience and what a positive factor that is. When it is his turn to ask questions, Jose always asks about what outcome he can expect from all of this. We have gotten many different versions of no way to predict, everyone is different, hope, encouragement, new drugs and new research emerging all the time. Today, the radiation oncologist said – “We know that since we can’t take the tumor out it will never be gone. Our hope is that for some period of time we can give you a better quality of life than you have now. It would be great if that period lasts a long time.”
I woke up last night because Jose’s breathing was rough and ragged. I lay next to him with one hand on the pulse in his neck and with my cheek where I could feel his breath as he exhaled. I breathed and relaxed and meditated on the spirit of life flowing through his body, the rhythm of the pulse and the warm moisture of his breath. I reflected on the tender things that have come out of this. When Jose was first diagnosed, he joked that with his treatment maybe he would age really fast and catch up with me, since there are times that I feel sad that my own cancer treatment aged me so much so fast. Yesterday laying on the sofa I had my head in his lap, and he was stroking my hair. He said that he was sorry that he had not been affectionate so much lately, but he feels like he had to work so hard to stay strong that it is hard to relax and be soft. No wonder he is so tired!!
Tonight, at the end of yoga class, as I was focusing on breathing, I was enjoying the feeling of surrendering to the unity of my breath joining the breath of the universe – losing boundaries between the world within and the world outside. Then I recalled Jose’s labored breathing and the flow shattered. The flow was restored when I remembered his pulse; I connected to the spirit of life underneath his ragged breath and realized that it isn’t really the breathing that is the source of unity. The unity comes from the spirit of life – nobility, love, compassion, connection to one another – the breath is just the vehicle that allows us to experience the spirit. Jose’s body may be tired, but the spirit of life is strong within him and through his connection to each of you.
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Mostly that post seems lifetimes ago, yet fifteen years later I instantly connect with that moment on the sofa – returning to physically connecting with you. Recalling how my mind body and spirit felt, the pattern of the light through the living room windows, the lush green outside the windows as spring rolled into summer in our verdant yard and the adjacent park. You were relaxed into the corner of the sofa with one hand draped across my shoulder and the other stroking my hair, my hands rested on your knees and my head rested in your lap and our beloved collie Dutch lay on the floor next to us. As I write this I feel my present body tethered to my body 15 years ago, peaceful connected and loved. In that moment I was marveling at the change in your personality once the decadron reduced the brain swelling. For the 15 months prior to the diagnosis and decadron you were antagonistic, aggressive and erratic. A week or so of decadron treatment and the monster receded and the man I married began to emerge; sweet funny and caring. We had been through so much upheaval during the previous two months, yet this was a blissful moment because as bizarre as it might seem in the face of a brain tumor diagnosis, “things felt like they were getting back to normal”. Thank God I did not know what lay ahead or I would have been an emotional wreck and unable to savor that present moment.
On the one hand this memory gives me some compassion for myself for becoming hard. It is what we do to soldier through onerous/catastrophic/overwhelming situations. On the other hand it makes me feel remorse; because of awarenesses like this I should have known better. I should have seen and recognized what was happening. I had to work so hard to stay strong for 15 years that I lost myself and our love. I was the drill sergeant tasked with whipping you into…into…I don’t know what. I just wanted to somehow get us through each day and pay the bills and keep the car running and Houdini my way through our f’d up medical system and laugh together and eat well and enjoy nature and have an occasional dance party. I accomplished all of that, but I got hard along the way. I rail about how dehumanizing the US healthcare system is, yet I became that too as I dehumanized you and dehumanized myself in order to sustain the relentless grind of surviving day after day (day in and day out) for 5,475 days. Sorry doesn’t seem sufficient but that is all I can offer now. I am sorry that I was not affectionate so much, I had to work so hard to stay strong that it was hard to relax and be soft. I hope there were moments that you felt my love.
“Unless one lives and loves in the trenches, it is difficult to remember that the war against dehumanization is ceaseless.”
― Audre Lorde
I Want to Tell You 
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