In Mortal Danger

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.

picture of the cover of Atul Gawande's book 'Being Mortal'
Atul Gawande :: Being Mortal

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.

Blue

Feeling blue has been big in the online world lately. People are starting to talk about depression and anxiety, about mental health in general. People are having conversations that may in fact make a big difference to our society. For our terrible suicide rates.   ‘Feeling blue’ can be a twee kind of way to say that someone is sad, low, down or depressed. I’m not going to write about feeling blue today. If you want to read a really great post about that, head here, or here.

Sometimes, in my experience of life with a chronic (invisible)  illness, I think it might be useful if I was actually blue.  If I was a little blue creature like the ones in this Eiffel 65 clip (sorry, but I have had this song stuck in my head), no one would expect me to do the things that a big grown healthy human might be expected to do. They would see at first glance that I am different.  They’d ask me all about it, they’d wonder about my species and scientists might want to study how my body works.  I may be weird, but I am no little blue man.  There will have to be other ways.

October is Dysautonomia Awareness month.

Blue is the colour of our awareness campaign.  It’s a pretty blue.  Although, there is some political disagreement currently, about our ‘exact’ blue…  Apparently the prostate awareness colour is deep blue (all this awareness campaigning can be confusing). Dysautonomia International’s Awareness campaign this year is ‘making noise for turquoise’… but longer standing groups have been using a mid blue for quite a few years.  So I have decided to embrace every blue hue this year.  Brilliant blues. I don’t think we need to have a blue about it.  Let’s just be blue.

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So, how?  I’m not the sort of girl who could pull off a body painting situation, someone might mistake me for a giant jellyfish and roll me back into the ocean.  Nail polish is great, you know?  But a bit last year.  I’ll still be having blue nails for Dysautonomia Awareness month, but Michelle from Living with Bob had a brilliant idea. She told me she’s doing something kind of radical for October.
Inspiring.

I’m going to kind of, sort of …do what she is doing (it’s a surprise), but to a much lesser extent, ‘cause I am a wuss.

This month, to get people asking and give me an avenue for talking about it, I’m going blue too.  I’ll take some pictures tomorrow, as it happens!  I’m also going to wear as much blue as I can, all month.  I am going to pull out last years’ nail polish.  And I’m going to instagram a blue photo every day.  #dysautonomiachallenge   Want to join in?

Cos I’m blue, dab a dee dab a dah.  
I got dysauto-nomi-a…

I am trying not to feel like a big blue failure though.  October is our awareness month. I’ve been thinking about it for months, I even had a friend, the very talented Katie Clausen, do a little drawing for me so I could make t-shirts, but I haven’t even got that together. I bought bracelets to sell for a fundraiser, and I can’t find them anywhere.  Boo.

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For now, I’m going blue!

Awareness month will need to evolve in its own fashion here on the Chronic-ills of Rach. 
Will you be going blue, too?

 

TA DA!  Here’s a pic of my new, blue, do.

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