by Fannie Lemay
I hate social gatherings. All of them. Parties, family reunions, dinners with more than four guests... just I don’t like it. Even if I like every person present. So as I’m packing my luggage do go to Montana for 4 days with a bunch of strangers, I keep asking myself why in the entire hell am I going to this camp!?
We’re going to spend all the days together. Eating together (THEY ARE GONNA SEE ME CHEW IN THE MORNING), hiking together, sharing bathrooms, and even SLEEPING together. You understood well. I’m gonna have to share my BEDROOM with six other people. Basically my worst nightmare. So why did I choose to spend hundreds and hundreds of dollars to put myself in a situation I hate? Because I need to.
Being diagnosed with Li-Fraumeni is isolating and overwhelming. The idea that you have almost 100% chance of getting cancer in your lifetime, coupled with all (ALL) the screening we have to go through on a regular basis, is enough to drive someone insane. But then, you read, you learn, you surround yourself with the best medical professionals you can find and you become competent at Li Fraumeni Syndrome. Slowly, it becomes your new normal. I got used to getting MRIs every two months. I got used to blood draws and treatments and hospital gowns and surgeries and even to all the anxiety that comes with it. The hospital became my second home, my doctors became the team of superheroes that work so hard at keeping me alive and my therapist became my lifesaver. But while I am no longer overwhelmed by my disease, I’m still alone.
So there you have it. That’s why I’m going. Because I’m alone. Don’t get me wrong, I’m not “alone” alone. I have my amazing husband and son, who are as supportive and lovely as they can be. I have my friends and my sister who are there when I need to get out of my house and my head. But the only friend who could really understand what it’s like to live with a serious chronic disease, I lost him. His brain imploded one day and he was gone. I lost him and I miss him every day. Because you need people who understand. You need people who know. People who know what it’s like waiting every goddamn day for the other shoe to drop. People who know what it’s like to get your body cut and stitched back together over and over again. People who know what it’s like when your life goes from light and beautiful to heavy as fuck with only three words: Li-Fraumeni syndrome or you have cancer.
So I guess I’m going to not feel alone even if it’s only for four days. I’m going to hate every second of the plane ride to go where people understand me. Where my other family decided to go to be with people who understand. And it’ll be horrible and lovely and exactly what I need.
Read more from Fannie Lemay:
Working With LFS: When Your Brain Gets In the Way
Mental Breaks and Living LFS, Fannie Shares Her Conference Experience
Beauty in an Unlikely Place- Fannie Remembers Her Mother's Breast Cancer Journey
