Relax, Liz: You are going to have brain surgery

I know something that no one in else in my personal life knows (unless this is the once in a year chance that someone finds and reads my blog): the lesion in my left parietal lobe has grown.

Until now I have refrained from looking up anything on the Internet that involves my brain.

I did not want to "freak myself out" or make myself sick over anything. And frankly, we still do not know what is going on with my brain. From what I gather, the parietal lobe is responsible for grasping numbers and their relations, and grasping and manipulating objects. According to Wikipedia, much less is known about this lobe than the others in the brain.

I am sitting here in my first hour after finding out that the lesion has grown and not telling anyone yet for a few reasons.

  1. As soon as anyone finds out I will not be "allowed" to be alone again for a long time. By alone, I mean in my condo with no one else around—not even in the other bedroom. I miss spending time by myself.

  2. All along I have had a positive outlook on my health (and continue to do so), but now I cannot deny that my brain will be infiltrated in one form or another soon. This may mean a biopsy or a full-on surgery, but either way my skull is getting poked.

After hearing that the lesion has grown (it is a lesion now, no longer a "mass", as referred to previously) I:

  • walked around my room;

  • sighed;

  • thought about all the people who tell me how "amazing" and "inspiring" my attitude has been through all of this; then

  • laid on the floor and cried for a moment while praying. I am now typing these thoughts.

I don't want people to know that any of this makes me worry. But it is time to probably make a few phone calls.

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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9/12/08 medical journal