Brothers in disease

Brett and I happened to get seats at a River Cats game in a row designated for the disabled. We struck up a conversation with the man sitting next to us who was using a mobility scooter. Like thousands of others, he needs scooter gel batteries and a mobility scooter to get around due to his condition. Brett's dad has muscular dystrophy and also uses a scooter and we asked him about the accessibility of Raley Field.

After that topic the conversation moved toward health matters with him asking about Brett's dad, and he shared about his own diagnosis--multiple sclerosis. We talked about home lifestyle, home improvements and what provides good stable use for seniors. I took extra interest in this story as at one point it was theorized that my brain was showing the early stages of multiple sclerosis, and not yet brain cancer. The man was very talkative and was more than willing to answer any questions I had. He said he was in the hospital an entire month as they figured out his diagnosis.

I don't usually want to bust out the brain cancer info to strangers because I don't want to make them feel weird (who really knows what to say to me?), but since he was sharing so much I felt comfortable telling my story. I started off with something like, "Oh yeah, almost a year ago it was thought that I might have multiple sclerosis, but after X, Y, and Z, we now know I have brain cancer." I said I had some surgeries and am now on chemotherapy, but all in all it isn't so bad, blah, blah, blah.

He said, "Oh, wow. Yeah, I've had friends who had cancer, but geez... I don't want to get all negative on you, but you know, that's serious! People die from cancer! I had four friends who've died--mostly from lung cancer. You know, you can get cancer in one part of the body and it can travel to your brain! You better watch out!"

Wow! No shit? Thanks, dude! Why didn't I meet you 10 months ago? Man, you could have squashed my spirit and offered your sage warnings back then. But no! I've been wandering around totally oblivious to the negative bullshit vibes people like you put out into the world.

I take full responsibility that I shared with a complete stranger, but I figured that someone who's also dealt with a serious health issue must be like a "brother in disease"--but I was wrong. Unless they're in the exact same position, no one understands. And as far as cancer is concerned, each type is so unique and is treated so differently that there really is no way to compare. Some people may suffer more than others, and have a hard journey to remission, whereas some individuals could beat cancer quicker. Everyone's journey is different, and as a result, some people may make the decision to buy CBD oil, or something similar, to help them to cope with the side-effects that cancer can cause, as well as being to help with the painful symptoms of multiple sclerosis. I think it's just important to remember that everyone's journey is different. Honestly, I feel like I could bond more with someone who has epilepsy, or who had a stroke, than someone with breast cancer... except for the treatment side of things.

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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Photos: My brain as of May 21, 2009