Holy shit: nearly five years since first seizure, happy birthday to me

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I think the title of this blog post really speaks for itself, but in case you need me to spell it out for you...

It's been nearly five-fucking-years since my first seizure.

I know most people living with cancer recognize the date they were diagnosed, but in my weird circumstance I did not receive an official diagnosis until nearly two and half months after my first seizure.

Due to a delayed diagnosis I choose to celebrate both dates: seizure and diagnosis. And it is convenient to recognize the date of my first seizure because it occurred just seven days after my 29th birthday.

I am now 34 years old.

I never want to be a woman who hides her age. Every year I am older is another year I am alive. I am living with this disease.

On my birthday a woman told me that it is great getting older. I should trust her, she expressed, as a woman older than me, to listen to her wise advice. I said, "Yes, I know. Getting older is great. I like getting older." She didn't seem to believe me. I almost said, "Dude, I get it. I know how precious life is, blah, blah, blah... I have brain cancer." But I didn't go there. I must really be maturing.

Honestly, I am lucky as hell to be living with a grade 2 astrocytoma. This is a slow-growing malignant tumor. SLOW GROWING. Yes, I have brain cancer, but other people have it worse than I me.

So I am in a weird gray area (pun intended) where I have a disease to freak out over, but I also need to be humble and recognize that others are worse off. 

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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