There is a specific kind of guilt that can plague survivors who got through something life threatening and come out the other side. Maybe it was an accident, trauma, war, hostage situation, cancer, domestic violence, child abuse, hurt. The guilt swoops in once they realise that they survived but others did not. So the question ‘why me?’ ghosts through their minds, shining spotlights onto every part of them that is not worthy of the gift of survival.
I do not deserve this. Everyone does. So why did it happen for me and not for them?How can I make sense of it? What hierarchy of soul assets could ever possibly qualify me to deserve reprieve when others get none? None of what I have within myself is superior to any other human. Is it all pure chance? Luck? Universal benefaction? Godly miracle? Alignment of planetary bodies? Karma?
Why not me..? Answers back. That small audacious whisper. I hush it back into it’s corner. How dare it speak up? The mirror in which I examine my value magnifies my insecurities.
It was easier to wonder why not me when I was sick. Worthier. It was easier to push, using all the survival drive my physiology could muster. Why not me? I tried and sought and searched and strived. I wanted to survive. And now that I am thriving? I wonder if it is a monumental case of mistaken identity, was it meant for me? I fear that I cannot do it justice. I exhaust myself with my desperate need to never take anything for granted; gripping on to the epiphanies of illness. I prostrate myself into works of compensation, trying to redress the balance that tipped things into despair and took so much from the people I love. I burn the energy that has been gifted to me on the backlog of yearnings. The things I missed. The things I couldn’t be. The person I think I could be but maybe, will not.
I just want you to know, you who continue to suffer, I want you to know that I have not simply sailed off into the sunset. I struggle to write for you because I feel like my remission has given me something you don’t have, and that feels unfair, like a betrayal. I wonder if you find my words aggravating, or boastful, a reminder of all that you cannot do. Those among you that are close to me have assured me that my story brings you hope, but I worry that it also brings you pain. Because, see? There I go again. Doing the things you can’t do, living the life that eludes you. And I do want to live that life, because it is mine. I even want to go sunset sailing, sometimes, though I have no sea faring vessel. I want to run away; I want to stay.
One of my favourite poems is by Christina Rosetti. There is a line that expresses the way this feels
“When I half turn to go… yet turning, stay.”
I have never been a goodbye girl. I won’t do it. So I remain here, caught on the cusp of sick and well. My hand reaching out across the divide between our experiences, the distance between our hands growing every day. I think I have that hated thing called ‘ableism’. Because I do believe, with all my heart, that there is a massive difference between being well and being disabled through illness. And I think it is better to be well. I think most of you with Dysautonomias think that way too, but dwelling on that is too painful. When ‘well’ is out of reach, people make do, we find joy, we build meaning where we are. It is a triumph of psychology. By far, the hardest thing I have ever done, was staying afloat through all those years. I was not always successful. When I sank under, you lifted me.
And here I am, washed ashore; not drowned. Dry, standing at the edge of continental opportunity. I have caught my breath. But I stare back out to sea wondering if you are treading water in shark infested waters. Willing you to keep your heads above water, to find the flank of our ship wreck; to hang on. My soul flies across the deep but the winds and tides can’t hear me. I am impotent to ease your suffering. And I am sorry.
We are all in mortal danger. No exemptions, no alternatives, it doesn’t matter if you are sick or well, at some point it will happen to each one of us. Mortality is part of vitality; it’s just the part we studiously choose to ignore.
I’ve just put down a book that should be compulsory reading for every adult. And not just once, we should all re-read it every few years. Have you read “Being Mortal” by Atul Gawande? He is what is known as a physician-writer. It’s an entire genre! Last year, I wrote briefly about something discussed in another physician writer’s book: ‘One Doctor’. Brendan Reilly is another brilliant physician-writer who tackles the subject of the confounding American Medical System. Oh my, that was a great read too, so timely and thought provoking. Where are we going with our own medical system? I sincerely hope not to the same places… but there are some similarities. Brendan Reilly’s book is a brilliant companion to Gawande’s ‘Being Mortal’. I think those two authors would have great conversations!
Somehow seems unfair that people gifted in medical ‘brainage’* can also be gifted writers, I suppose it follows that Gawande and Reilly are good at sports and incredibly good looking too (!) but I haven’t seen them so I can’t confirm. Some people just get it all!
Atul (I feel we are on a first-name-basis now I have read the book) writes about a very uncomfortable subject. I’ve written about it here, but my words were inadequate in comparison to his excellent (and detailed) discussion. It’s difficult to convey in a blog post a message he has delivered so beautifully in his book. I love his writing style; fluid, easy. He’s a compelling storyteller. It’s through the stories in this book that he gets us to honestly look at the elephant in the room. We are mortal. We never want to look at that, we never want to engage with what it might mean about our lives. Somehow, our brains slip away from the realities all the time. But Atul forces us to look, to think, to examine what our own wishes are for the inevitable. Not just the inevitability of death, but of old age. His book is a crucially important guide to the subject of both and an important criticism of the directions of gerontology in traditional western medicine.
Have you ever heard parents ask children to promise not to put them in a home in their old age? Or seen people refuse to use of mobility aides, or even prolong the lives of their loved ones with unnecessary medical interventions for their own reasons? I have often. We see and hear examples of people grappling with issues around mortality every day, but we don’t really examine how it could be better. It is very difficult for any family to make decisions about end-of-life issues when they are emotionally distraught, far better to engage with them long before the inevitable, to remove the burden of big decisions. We can all do this by making our wishes clearly known. And I don’t just mean “if I am brain dead turn off the machine”. There are a lot of statistically more likely scenarios to consider. Atul knows this, because he’s been in that position with his own Father, as well as countless patients. I know this, because I was with my Mum when she was going through her final days.
The older we get, the more often mortality will come and slap us in the face, that of others and eventually our own. But have we considered the type of death we might prefer if the choice were ours? Have you ever heard of Advance Directives? Even more importantly, have you discussed the curliest of questions with your family? Atul provides us with four thought provoking questions to guide our discussions. I won’t tell you what they are, because I want you to read that book.
When my Mum was about two weeks from her death, she was distressingly uncomfortable. An enormous tumour had enveloped her abdomen and was pressing on her diaphragm. She didn’t want morphine, but eventually asked for it; the pain was too extreme. Hospice care was compassionate and careful but also generous; they helped her with pain and anxiety, they talked with us, and with her. Food was still being brought to her, and desperate for sensation, taste, life, she would try to eat. “I’d love x, y or z” she would say wistfully “…or just something… juicy”. We would race to meet every whim. But there was nowhere for the food to go, the tumour had encompassed her stomach. And her gag reflex had stopped. She knew eating was pointless, she knew she had to vomit or endure more pain and nausea. She was too weak to help herself out of the predicament, so she asked me if I could stick my fingers down her throat to help her relieve the situation. I would have done anything she asked me to do. My precious, frail Mumma. I helped her to vomit in the way she had helped me do countless things when I was little. With love.
Soon, she chose to not eat anymore. The hospice nurse, marvelling in a later conversation with me, remarked on my mother’s tenacity for life. She mused, just as an aside, that patients who continue to drink water last longer than those who don’t. It is obvious really, isn’t it? But when you’re there in that room, watching your loved one facing death, deep in the desert, it doesn’t seem so. It was revelatory that death by an aggressive cancer would not be swift, but a long and painful process. That death would eventually be by starvation, or dehydration. It seemed so grotesquely cruel.
Mum’s final days passed in the torturous way they do at the sharp end. She drifted in and out of fitful sleep, her breathing ragged. She could barely talk but would turn her eyes to the straw in her cup and when we held it to her lips, she would drink like she was traversing a desert with no reprieve. We swabbed her mouth out with special sponges when she could no longer produce saliva. We watched her suffer, limp with inability to do anything that could really help.
One morning, awake and waiting for the next shot of pain relief, she croaked
“-tell me why I can’t just die?”
I thought about hwat the nurse had said. But I was afraid, because I knew my Mum. I knew her steely determined side, I knew if she wanted to go, she would make it happen. I looked into her face, taut with pain.
I confess that watching her suffer was the most agonising experience of my life.
I confess I hoped that there might be an end to the horror, for her and for me. And I whispered: “Mum, the nurse said it’s not possible to live without water.”
For a long time, I felt guilt about telling her that. But her eyes shone up at me. She couldn’t talk. But she refused any more water. By the next day, she had drifted off into a coma. That was her only way out. A desperate, dry, gasping and rasping before a quiet coma. And I will forever feel responsible for my part in how it played out. Did it save her from more suffering? Possibly. Did she want to go? Absolutely. We were extending her suffering with all the love our hearts and hands could muster. “Another sip Mum… come on, water is so good for you”.
I wish this book had existed when my Mum was sick. I wish her faith in God’s healing had left some room for us to talk about such things. I wish that she could have had less chemo, and more good days. But of course, more than all of that I just wish she was still here. It is a regret that I have that I had pushed her to fight, to try, to hang in there, all because my own fears about life without her were so all-encompassing.
Atul Gawande’s book would have been useful back then, but it is still incredibly useful right now. Mum’s death was my first proper shock into the reality that death finds us all, but being sick for six years forced me to think about it even more. We are ageing, and so are our remaining parents. There are things to consider, things to discuss. I think about my own children and know that I never want them to be in the position of feeling responsible, or guilty, for any aspect of my wishes. I want to take that burden off their shoulders.
Have you had the discussion?
PLEASE read this book, there is far more to it than you might think. It is uplifting, not depressing. It could change your life, and your loved one’s lives for the better. One thing I know for sure, we are all in mortal danger, and apathy could steal from you the things that will matter the most to you.
It’s time to talk.
*I know, ‘brainage’ isn’t a word, but it should be.