Tied for worst feelings ever

PHOTO: Brett and I in 2008, six weeks after diagnosis.

PHOTO: Brett and I in 2008, six weeks after diagnosis.

Tied for worst feelings ever:

  • People assuming you beat cancer when you haven't.

  • Reminding people you still have cancer and making them cry.

Over the past week the following things made me feel real shitty.

1. A friend publicly congratulated me for "beating cancer."

I love the guy, and his intentions were nice, but I felt the need to correct him because the statement was untrue.

I could have let it go, but to me, saying I "beat cancer" diminishes all of the crazy I deal with every single day. From planning for retirement, to advance directives, to adventurous vacations, to home buying, Brett and I weigh every decision in the light of me being a person living with brain cancer. Our future is murky and uncertain when it comes to all things Liz.

2. I made my mom cry.

The other day I was on the phone with my mom when I nonchalantly told her how Brett and I are working on selling our condo because it isn't a good idea to live on a second and third floor if/when the tumor grows and I become disabled. I continued explaining why this is a smart and practical idea until I realized she had gone silent.

She was crying.

When people who love me are reminded of the reality of my situation they get sad. It comes as a shock when I am frank about how brain cancer works because I look and sound fine. It is easy to forget Liz has a ticking time bomb in her head.

When people start crying I feel guilty. What they are experiencing is called preemptive grief, as coined by Elisabeth Kübler-Ross. This is the grief experienced when someone you love is actively dying. You grieve about how your life will be changed after their death. (Not that I am actively dying.)

My mom and I don't live in the same state, so I don't talk to her all the time about my cancer stuff. I tell her the truth, but I don't feel the need to start each conversation with, "I still have cancer." I think she, like other people who care about me, sees healthy, active Liz and the brain cancer diagnosis does not compute.

It is important for me to have everyone close to me know my situation. If I am burdened with knowing the truth, everyone must know the truth. I diminish my own suffering if I let people believe I am cancer-free. There is no way in hell I would live a lie just to protect the feelings of others.

Not even my own mother.

This makes me feel guilty, but I do this to maintain my mental health. Self-preservation is my only key to living with cancer.

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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Nothing else will be scary again: my goal for 2015