The post below was written on March 26th, 2023 about the events of January 11th, 2023. During this time of writing I was also writing poetry to express myself in a different language. I haven’t shared the poetry in a few weeks because this feels like enough, too much actually, but I will eventually be sharing. I’m sitting here writing this today, Sunday - it’s a Sally day - Sally had a couple of types of days, this was the rainy, cozy, tea for two, all day Lord of the Rings marathon and tasty dinner, type of day. Reading through these posts takes me right back, inside my heart, I’m sitting here, typing, listening to music, at my desk, but my heart is with her, back in that room, that day. It’s a good thing? A bad thing? It doesn’t matter. It’s what it is and it will never be different. Although years and time will grow fruit and trees and new and old paths will meander for me, my deepest heart is forever broken with no hope or desire for it to be repaired.
Thank you for reading. Please share with friends or family who you think might get something from this.
3/26/23
Chapter 17 – Saying the hardest thingsHow do you tell someone they’re going to die?
The last six years provided so many opportunities to talk about death. And we talked. We shared our fears, our sorrows, we apologized, we said goodbye and said that we didn’t want to say goodbye, and we did it again, and again and again. There were times, going into the hospital, that we didn’t think we were coming out together, but we always did.
Part of the way we both coped was to be micro focused on the positives and sometimes those positives were as basic as, we’re still alive together, still looking at each other, still loving each other…we’re still alive together.
On the afternoon of January 11th, I got the news that the Doctors thought people should come if they wanted to see Sally again. I was led into a room with the attending doctor, a medical student (what an experience for him), a social worker and the Palliative care team. They had been checking in with me (us) over the last few days, a steady stream of “we don’t knows”, “we have to wait and see” and “we’re throwing everything we have at its”. Doctor after doctor with no answers to what was most obvious.
Our bubble was so tight, and revolved so focusedly around not dying, and in the face of such glaring surety – Sally (and so, I) remained steadfast, what more can be done, what more can be done, what’s the next step, what’s the next step even as there were no more steps.
I knew eventually this day would come. I was not ready. Sally knew, I don’t think she was ready. Underneath, our face to face, forehead to forehead, bowed, eye to eye – we’re alive together – we’re breathing together – we’re Jake’s parents together – we are alive together…underneath this, I think we both knew, especially in the last couple of months. But we didn’t bother with that and it’s because she didn’t bother with it, it was, at the same time, the most hopeful and courageous I have ever encountered and the saddest thing I’ve ever experienced.
Over the last six years and especially over the last year there were times when we received awful news about her health, maybe it was a doctor telling us or a scan that came back. Sally never wanted to know about the negative. She had a complex set of beliefs and to put this simply, she felt the negative prognosis could impact the reality of her life. If she got “bad” news it could make that news more true, more real, if she heard about it and took it into her mind and heart. This belief was different from what I believed and one of the biggest challenges, especially in the last year, was how to be together on this journey while navigating our different perspectives of how the world worked.
Ultimately, I tried my best to uphold her wishes around this while not completely denying my own sense that certain things were important and good, although maybe hard, to hear. In general, we took in information from doctors as educated opinions and data from scans as both positives and negatives.
Sally taught me that even if something was undeniably negative it didn’t mean that you had to believe it. This is so hard for me to flesh out but essentially it came down to being present. I often thought her denial or refusal to take in certain information was not good or helpful to her, but what I’m discovering is that I don’t think it matters. I’m sorry if this is confusing, there’s more to it that I want to explore but for, death is coming for all of us, whether you believe it or not, what matters is how you spend your time. And as I think back on how we spent our time and how Sally spent her time, especially for the last year, no matter who believed what, there was so much love, so much overflowing love.
But now, on January 11th, 2023, I had to tell her in a way I had never actually considered; even though I had considered it hundreds of times.
Death was here. It was here, no matter how hard she tried, we tried, everyone tried…no matter what we believed, she believed, everyone believed…it was here. And it came in such an unexpected and sterile way. It came disguised as decisions, decisions about end of life, about how she wanted to die, about where she wanted to be. Death came, not as a grim reaper with sickle or as angels from high, it came as decisions.
Everyone in our inner circle had been through this process. The last 12 months, words cannot describe the intensity of the emotional ride. Sally would get an awful diagnosis, or have complications or some combination of both, into the hospital we would go, update the feed, touch and go, and she would come through, come out and I don’t know what everyone else would go through but for me, a sigh of relief and of resolve to get back to the day to day life of living with a loved one who has terminal cancer and who has deteriorated to the point where she can do very little for herself. Into the hospital, oh god, is this it, out of the hospital, amazing, back to work, into the hospital, oh god, out, thank goodness, back to work, in, out, in, out, is this it, thank god, back to work.
To get the news that if people wanted to see Sally they should come, well, this was one of those times it was important to share news, and, of course, the news couldn’t have been worse, couldn’t have been more fearful, more dire (this wasn’t true) – it was the worst news that ever existed and I felt I needed to share with her. So, on that afternoon, of January 11th, after a night of what we both thought was positivity and improvement I told Sally that the Doctor’s felt we should invite family and friends to say goodbye.
Even this news, looking back, wasn’t as hopeless as it now feels. We were still in refusal mode and although Sally was in very rough shape, she was still conscious, still able to talk, share, care, all of it. And up until this point, it was still just her and I in that room, hoping beyond hope, safe in our bubble, that we would be going home together, again, like we always did. We spoke about people coming, she was mutedly defiant, she no longer got angry at this point, the last year she had exploded her rage that had existed all her life, she had dismantled it, she had injected cooling love and what remained was a fiery, strong girl who believed what she believed, unashamed and unrepentant. I could sense it in her though, “I don’t feel like I’m going to die” she said to me, as if she’d said it so many times before and as if she was tired of reminding me, both true. But the other part of her, the part that knew it was important, the part that knew it was important for other people, even if she didn’t believe it, this part of her talked to me about it and we made plans.
We were concerned because she had gotten so weak. Even remaining conscious, at this point, was a difficult thing for her and we worried that it would be too much if people came, that it would take too much out of what little she had left.
“I don’t feel like I’m going to die” she said – this woman, man, this woman!