When I think of the word “life,” I see an array of photos in my mind: cliff jumping, sunsets, grandparents of the wrinkled variety. Everything I visualize is packed full of story, energy, and it’s beautiful. When I dig deeper, there is also this image of an altar. That altar is universal. Life, or the word, has become a sort of God — an unyielding, definable truth. We lay all sorts of things at the altar of life, seeking ways to prolong it, avenge it, protect it, sanctify it through purification, perfectionism, religion. Just like a God, countless horrors are justified in its name. Our lives are precious. We will do almost anything to make them better, longer, or more meaningful. And this is the great source of empathy. I can see why you made that choice because of how it would seem to benefit your life. But what about the choices that are made to bring life to an end? The end of pregnancy? The end of suffering? It is much harder to find empathy there. There is no allowance for death at this altar — except to demonstrate our heroic efforts against it.
That used to make sense to me. Of course, life is precious and we should do everything possible to protect it. But what if it’s not that simple? What if, just like everything else, it is complicated, nuanced? That is a scary thought because it carries with it the fear of the dreaded slippery slope. Who gets to decide what lives are valuable? What does it say about us if we accept the wishes of some to end their lives? Does it make us complicit? Uncaring? Worse, does it make the altar we’ve built our lives around — that this one thing matters, fall apart around our ears?
My mother died of pancreatic cancer many years ago. My sister and I took care of her in the six months before she passed. I remember her telling me she was afraid of losing herself. She was afraid of becoming mean, failing to remember our names. Really, she was afraid of living past her life, her memories, and her ability to choose her own responses to interactions. That is exactly what happened. I watched as the life slipped slowly from her eyes, making it harder and harder for her to connect to who she was and who we were. One night, she asked my sister and me to come into her room separately. She wanted to say goodbye, and she did. The next morning I heard her crying and when I walked in, she said, “I’m still here. I thought I would die in the night.” She wanted to. She was horrified that she hadn’t. She never asked me to end it for her, but I would have understood if she had.
Right now, in my life, there are two parallel stories happening between my daughter and cousin, both aged 21. First, my cousin. She found out she had kidney failure a few years back and got a transplant. All seemed to be going well. She went to college and was just beginning to apply for Master’s programs when she got very, very sick. It turned out that she had cancer all over her body. It was caused by the medication to keep her body from rejecting the kidney. She has been in the ICU in Seattle for over a month. There are so many battles, it is mind-boggling. Her mom called me last week to say that K woke up, out of her mind, and tried to pull out all of her life-saving devices. She wanted to die. We talked about it, about how it is understandable, but impossible to find peace in. We talked about her quality of life, what it could look like even if the cancer were held at bay. We wept for the loss and for the unbearable weight of the question, “is it okay to stop fighting?”
On the other side of that is my daughter. She has ME/CFS, a multi-system inflammatory illness that can cause severe disability. My daughter’s case is severe. That means that she is bed-bound %90 of the time. She used to be a musician. She loved to sing and write music. She was a goofball, loud and fun, and full of life. Now she lives in a dark room, barely able to communicate on bad days, and only able to interact for short periods on good ones. Statistically, there is only a %5 chance that she could recover — and recovery, if it did happen, would not return her to baseline.
Over the last 3 years, I have buried her in pieces. Now, we live our lives circled around one another. I am always aware of her presence but miss her desperately. She lives in my home but doesn’t have a life here. It is just so, so sad. Recently, she looked up a place in Switzerland that helps people who are not terminally ill but have severe illnesses that greatly diminish their quality of life. She has begun the process of registration so that she can end her life legally next year.
I have a lot of feelings about this. You, as the reader, probably do too. How do I hold both things in my heart? The value of her life and the acknowledgment that it has ended for her? She told me that she felt like she was begging for my forgiveness. For what, I asked. She said, “I’m killing your daughter. I’m asking you to let me.” I told her I saw it differently. She wants to set herself free. How can I blame her for that? I know now that life is more than a heartbeat. It is a set of experiences, feelings, interactions. It is so much more than what we fight over in politics and at family reunions. But that conversation haunts me. The words “let me” will run through my thoughts forever, I think.
I’m standing here on this precipice. Behind me is my altar to life, and lying ahead is the great abyss of death and grief. I’m not sure what she will decide, or what this year will bring. Euthanasia, assisted suicide, whatever you want to call it, will have strong feelings tied to it on either side. I’m not sure what I will face on the other side of this, or what judgements may await me. All I know right now is that when I think about the question, who gets to decide if my daughter lives or dies, it isn’t me.
I don’t know if this blog is a plea for understanding or advocacy for the voices of those who want to choose their death. I know this though: every day, my daughter loses more choices. And there are so many like her out there. We get so caught up in where the lines should be drawn that we forget to acknowledge who should be able to draw them. For me, it’s Megan. I will fight for her rights in life and fight for them in death.
Perhaps the greatest obstacle is hope. Love and hope tend to hold hands a lot. Accepting death seems to be an abdication of hope, so it feels at odds with love. But it’s not. Misplaced hope has done a lot of damage in this world. And acceptance is love too.
Maybe some will say life is worth living just because it’s life. I challenge you to empathy that is harder to reach. The life we live holds greater value than the urge we have to protect it. I am terrified to let my daughter go. The finality of it is beyond my comprehension. I grieve it constantly. But this living is a grief too, and hers is beyond what she can bear. I can respect that. I cannot save her, comfort her, or heal her. But I can love her to the end of the precipice and bear witness and she jumps.
This post was previously published on medium.com.
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