It will kill me if I die before him

On Facebook I read about a 29 year-old woman I have never met (who was friend's with a friend) who just passed away from metastatic colon cancer. The Facebook post contained a link to the woman's website. I saw photos of her--she's beautiful. I read about her. She was diagnosed in 2007 and got married in 2008.

The last post on her CaringBridge website said she passed in her husband's arms surrounded by family. This is a common description about the death of someone with cancer. And it makes my heart ache.

My heart aches because:

I feel bad for her husband and family, and

Because I imagine myself in her shoes.

I worry that that will happen to me. I worry about dying in Brett's arms. If anything, that is the second best death I could imagine. (The first best is dying instantaneously upon impact with something--no pain, no prior knowledge.)

My heart aches because I fear leaving Brett behind. I don't want to leave him here. I don't want to go without him. I don't want him to be sad. Nothing will console him. He will be devastated. And I won't be here to take care of him.

It is not fair. It is not OK. I want to take care of him forever.

You'd think we could prepare for that by taking advantage of every day and appreciating what we have, blah blah blah. But it's not the same.

I remember when Brett and I found out that I did indeed have brain cancer. He laid down on his bed (we lived separately at the time) and cried silently into his pillows. I sat at the computer and stared at the screen. I didn't cry. I didn't know what to think.

If I am to die from brain cancer (because who knows--I could be hit by a bus) I imagine Brett crying into his pillows alone.

I wish I knew what the afterlife held. If I could choose the situation I would want to instantly be transformed into a “ghost Liz” who could hover around Brett and hug him with my ghost body until he stopped crying. No matter how long it takes.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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Wearing a mask: A missed opportunity to be an asshole while living with cancer