The "Lucky" Brain Tumor

Go Gray in May is the slogan from the National Brain Tumor Society to create awareness and to support the brain tumor community. May is Better Hearing Month pushes for awareness of hearing problems and hearing health. As both of these apply to my specific situation, I am very amused that these two campaigns happen to be the same month. Even more remarkable is the fact that I had my brain surgery in May back in 2015. Hearing and brain tumors are definitely on my mind in May.

I have at times pondered the benefits of awareness campaigns and all the different month celebrations. But I have heard from so many people that it made a huge difference to their life to connect with someone who understands and has experienced similar things. I think these awareness campaigns can be really powerful for helping people find their tribe and feel supported. Certainly, both brain tumor and hearing loss journeys can be isolating experiences.

If someone asked me what I would want people to understand about what it is like to have a brain tumor, I would say the following: Just because someone looks fine, doesn’t mean they are fine. Don’t expect it to be visible, so many of the struggles aren’t able to be seen. The journey is non-linear, and there are difficulties at the beginning but also months down the road. It is a marathon, not a sprint. Recovery from a brain surgery takes months. Often, you are healing 12-18 months. Everyone’s story and situation are so different that the best way to support someone is to ask what you can do to help.

If someone asked me what I would want people to understand about life with hearing loss, I would say: Hearing fatigue is really real, and taking quiet breaks is so important. Situations where hearing will be a struggle aren’t always predictable, and it can be especially difficult if you can’t prepare in advance for a hard of hearing situation. Background noise is the worst for exacerbating hearing loss. High ceilings and hard surfaces make sound bounce like crazy and really amplify hearing difficulties. Most people with hearing loss don’t know ASL. Hearing loss is very real for any walk of life, including young people. Hearing devices and hearing loss aren’t embarrassing or uncool.

My goal this May is to focus on celebrating the battles I have won on this journey. It is easy to get bogged down by the struggles and the losses as they are all too apparent. But I have accomplished so much since my diagnosis, and I often don’t give myself enough credit. I hope this May gives you opportunities to connect, feel seen, and honor your achievements.

https://www.cdc.gov/nceh/features/better-hearing-and-speech-month/index.html