A Terminal Diagnosis is Brutal

I handed Michelle a tissue as another wave of sobbing overcame her, then waited quietly for it to subside. There was nothing I could say.

To the outsider, Michelle appeared to be perfect. She had beauty, success as an ophthalmic surgeon, immaculate house, horses in the stables. Loving husband and friends. She had lots of those. We had recently attended her sixtieth birthday party in a huge marquee. There had been speeches and dancing. It had been a jolly affair.

But underneath simmered another story.

I didn’t know Michelle that well. She was older than me and we moved in different circles. Her life was far more sophisticated that mine. But for some reason she had chosen me and here she was, sitting at the kitchen table in our old cottage, her convertible Mercedes parked on the drive.

Earlier, in a moment of cowardice, I had said to my husband that I didn’t think I could do this.

“Do what?” he asked.

“Be much support. I’ve got the business and the children. It’s all so big. I don’t know if I’ve got the strength.”

“You have to,” was his reply. “She’s reached out to you, particularly you. You’re one of the few people who’ll understand, especially after your brain tumour.”

He was right. I knew what it felt like to stand frozen on the bustling platform of life while all the world dashed past with health and purpose on their side. I also knew what it was like for friends to give awkward, empty reassurances that everything would be alright. I knew what it was like for a friend to cross the street and pretend they hadn’t seen me, because they didn’t know what to say.

But I also couldn’t remember Michelle being supportive at that time either. No matter. There were plenty of my old friends who had been there for me.

I used to think that I would top myself if I was given a diagnosis of ALS, or Motor Neurone Disease, as we usually refer to it in the UK, but Michelle had a clear passage planned out. She was going to live her life to the full until she became housebound. Her youngest daughter had said she would take time off from her veterinary studies to look after her, and there was money enough for carers to help.

Facing death must be so much easier if you’re religious, or spiritual, or at least believe in some form of life beyond our worldly existence. But Michelle was a doctor. She believed in science. When you died you died, and that was it. And yet, there was always a hunger to believe.

The doubt – the question

“Do you believe in an afterlife, Claire?” she would ask.

“Absolutely. Undoubtedly. Definitely.”

“Really?”

“Without question.”

 The Book

The following Christmas I dropped off her present. It was a book written by a brain surgeon describing his transformational near-death experience. He wrote of the beauty of it all and how he hadn’t wanted to come back. Michelle ripped open the wrapping paper like a hungry child and read the entire book in one sitting. Afterwards, she said she wanted to believe, but she just couldn’t.

Over the year, we kept in close contact, and I still have many emails from her. One particularly moving one describing her last trip to her favourite city, Venice, where she had reunited with an old love. Sadly, it hadn’t fulfilled her dreams and she wished she had bowed out as a perfect memory.

Together with two other friends, we formed an informal support group. We weren’t the only ones. She had loving siblings and grown daughters, but we could see she was a beautiful flower wilting.

We would meet for tea, sometimes also with one of her daughters. Polite chit chat was a thing of the past. We talked with honesty about life. And we laughed. A lot! As the months progressed, Michelle would use her iPad to help her communicate, but the app was clunky and often her daughter was better at interpreting what she meant. Until it got too frustrating. Then the meetings stopped.

Michelle was proud. She didn’t want us to see her near the end. She kept saying she would arrange a date when we could visit, but we knew it wasn’t what she wanted. We kept in touch by email. Until they too stopped.

The End

The church was full at the funeral. Grateful patients, relations, lots of friends. Even a new grandson. There was laughter — Michelle had certainly been a naughty girl in her youth! And there were tears. But there was also relief. And, I imagine, that there was a certain amount of guilt felt by those who wished they had been more supportive.

I felt guilt for my moment of hesitation in the early stages of this journey but most of all, I felt gratitude for all that Michelle had taught me. She had shown me how to be brave. She had illustrated how you don’t need to lose yourself in the prognosis of a disease. YOU MUST NOT BECOME THE DISEASE! Then it has really won!

She lived her final days with her inimitable style and flair. She put two graceful fingers up to the three letters ALS or MND and she walked into the flames like Joan of Arc, with her head held high.

LAST POEM FOR MICHELLE

I’m not in my passing, I’m the soul that I am,

The child in the playground, my life in my hands,

The breath on the pillow of the love I have known,

I’m the me that I am, despite the fate that I own.

© Claire Duende