I’ll be honest with you, this is one of the hardest pieces of writing I’ve ever done, it’s raw and new and it’s challenging for me to share. I spent most of the day considering if I would ever post it in this forum, and I’ve decided (obviously) that I should. I share it because there are several important points in it about processing death, understanding life, and respecting people’s wishes. Writing and sharing are also possibly ways for me to process and move forward.
“I’m dying” , he said flatly, matter of factly, without the inflection or emotion one expects in those words.
“You’ve been dying for years my love.”, I responded with a tenderness that surprised even me.
We discussed how his family and friends were taking the news, his refusal to start dialysis, his expectation that he would simply fall asleep in the coming days or weeks and not wake up. His family and friends have met him with a combination of pleas for him to accept treatment, anger at his choices and flat out denial of the reality. He ceases to wish to talk to them about it. He has made his decision and as far as he will tell anyone, he is at peace with his choice.
I asked if he wanted me to come, his answer was another flat no, followed hesitantly by “you’re a world away, but I know you would come, if I asked.”
I would, I would fly to his side in a heartbeat if he needed me there, if he wanted me there, but I know him, he has walked this road mostly alone and it is alone he chooses to end it. I worry, that without the right documentation in place or someone there to advocate for his choices, someone will try to stop it, but he won’t discuss that right now, he lights a joint and I hear the tenseness of his voice slip back into his quiet sedation of choice.
“Are you sure you’re at peace with this? Are you sure, even after all these years of wanting it, this IS what you want?” I ask. I already know his answer, but I need to hear it.
“Maybe I’ll change my mind, maybe I’ll want to make it to the anniversary one more time….but I doubt it. There is nothing for me here but suffering, I do not want to suffer anymore.” His voice never waivers in indecision as he talks, it never has, once he has made up his mind it is often a foolhardy choice to try to change it. This isn’t some knee-jerk decision or acute depression, this is honestly what he has been waiting for, praying for, hoping for, for over a decade.
“Are you going to try to change my mind?” He asked, there is no measure of hope in his voice in this question, there is almost a trepidation as he asks.
“I’ve been on this journey with you for too long to try that. You made this choice a long time ago. There were moments I thought you’d choose to change it, to fight, to come back to living, but you’ve known the eventual conclusion of your choices, I’ve been immersed in your pain for too long to beg you to change course now. “
“Do you really think it’s a choice?”
“I think there were times it was a choice, where you could have grabbed on to something and fought, where you could have had help through your grief and depression, when you could have found life and light again. I don’t know that it’s a choice anymore, I know you have never seen another path, a way out, a return of hope. This isn’t about my acceptance of your path, it is about your own.”
“Thank you.” He replies, with that soft sincerity I’ve always treasured.
“All I’ve ever wanted was for you to find happiness and peace, my love. I will forever wish you could have found it somewhere else, somewhere in life. Now that your body is failing you, I believe it only makes your acceptance of finding peace in death easier for you. I simply want you to be happy and peaceful, my heart must rest in your finding it, finally, regardless of how.”
“Thank you.” He said again, softly.
“I’m here if you do change your mind, I’m here if you don’t. I told you I would always be here, and here I am. I’ll hold your hand either way, from afar if I must.”
We left the conversation at that, in the coming weeks I’ll call, he may or may not answer, it has long been that way. I have held my breath a million times before to be honest, wondering if he was gone. When he lost his son, years ago, he died with him. I cannot blame him, I cannot fathom how any parents survives losing a child.
He has been lost in his grief since that day, the initial decline took several years, he lost his purpose and could not find something else to hold on to. Depression, dark and deep set in and he increasingly isolated himself, becoming almost entirely agoraphobic. For years we worked at trying to reverse some of these things, disastrous trips out which caused debilitating panic attacks when he saw children, especially with their fathers. He sunk further into an angry ugly darkness from which he could not emerge. Therapists and psychiatrists only made him angrier, the idea of letting his son’s memory rest in peace, the idea of absolving his own guilt over his loss was beyond what he could ever reconcile in his own mind and heart. I can tell you honestly that there were times he tried, with all his strength, to emerge from the growing darkness, but could not find a way, regardless of the hands helping him, regardless of the words or medications or love he was given. He gave up, and for the last years he has existed, not lived, waiting for this time to finally come.
I’ve had years to prepare for this moment, knowing that it was unlikely he would ever find a way out, understanding long ago that no matter how much I loved him, how hard I tried, I couldn’t change his course, only he could do that. We don’t get to write the stories of the lives of those we love, sometimes we can affect them, change them, but often we can only cling on and ride the ride. Similarly, we do not get to change their deaths, we can only offer as much comfort and love as possible, accepting that choices and values of another are distinctly their own.
I find the timing of this particular ending both disturbing and comforting, as I continue on my own journey to work with people through their death processes. I have learned to accept death and to work to try to wrap it in comfort and love….a lesson that becomes unendingly valuable to me now, even as my heart wishes to do all the things to stop it. He will forever be one of the greatest loves of my life. Losing him devastates me in a way I cannot begin to describe to you, and yet the journey to losing him has been so very long that the wound is not fresh and so very painful to the touch. I must let him write his story, to the final words. I will quietly hold his hand and love him through every last paragraph, and when he breathes his last breath, I will close the book and hold it closely to my still beating heart.