The day of my most recent infusion was the day after Christmas. All of the joy of the holidays got stuffed into a plastic tub next to a stocking with a snowman on it, and my team had to take a chisel to my slowly breaking heart.
I met with my mom and Dr. Wilson from Palliative Care to talk about the answer to this fun question (and I’m paraphrasing here):
“Exactly how far gone do you want to be before we pull the plug?”
It’s a terrible, terrible question. No fun to ask. No fun to answer. No fun to still be dwelling on two weeks later.
But then again, it’s a terrible question for my family not to know the answers to, and that’s much worse. Some day, I’ll be rolling through heaven’s gates, six guilt-free donuts in one hand (because you can hold as many donuts as you want in heaven), and a pain-free frozen mudslide in the the other, while my family mourns down here and stresses over whether they did what I would have wanted with my broken body. That’s not fair. They should be spending their time framing favorite pictures of me and writing odes and/or sonnets.
Which is preferable? Odes or sonnets? Next week, I’m going to write about some limericks that I’ve been enjoying, but I digress.
The beauty in the conversation I had with the kind and brilliant Dr. Wilson and my mom was how openly I was able to talk about what I believe and what I believe I want. No interruptions except for clarification, and no judgements. Dr. Wilson would repeat back to me what he thought I was saying, while writing it down and making sure that my mom was comfortable with my wishes.
I so appreciated when Dr. Wilson would precede a question with “I’ve been trying to come up with the best way to ask this,” because it showed his sensitivity to the power of words and the weight of the topic we were discussing. Personally, I feel that he worded every question with as much empathy and grace as is possible. He thanked me for taking the time to face these issues now, in this time of relative good health because it is so deeply sad to address them when death is imminent.
Now for your takeaway: I’m not the only one who should be tackling this project. We all should. You should. Some of us are going to die sooner than we want to, and some of you won’t be as “lucky” as I am to be getting notice about a probable extra-short life. Do your people know what you want, or will they be left to agonize over the questions while you lie in a hospital bed, waiting?
I’m not going to write about my answers to the questions (although if you want to talk about them with me, I’m happy to do so) because they are just so deeply personal, and my right answers aren’t necessarily right for you or your loved ones. But I can tell you that I’m definitely right that you should know each others answers so that you can take care of each other in the most respectful, loving manner possible during the hardest moments of your relationships with each other.
It’s terrible, but it’s wonderful because it’s a tremendous expression of love and trust.
That’s why, even though as I said at the top, I don’t want to talk about it, I will again in a couple of weeks. My brother is my backup decision-maker, so he and I will sit down and have this conversation together when I go visit him at the end of the month. I’ll tell him because I love him and I’ll ask him because I know he loves me.
And then maybe I’ll write a sonnet about it.
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