It takes a village.
January, February, March, April, May, June, July, August.
October, November, December.
But what about September? The month that it all makes sense.
September is Charcot Marie Tooth disease Awareness Month. But for me, it is so much more. It is a month I celebrate with people that don’t live with CMT so that together we can host a month long party and by the time everyone leaves… they know about this disease with a really funky name. Not to mention, the thing that feels so heavy in my life finally feels like the golden ticket to the greatest month on Earth. I celebrate, express gratitude, cry with, and thank the people that make my life feel possible all 12 months out of the year. Because for me CMT has always been a team effort.
As much as it may seem silly to the people who don’t live with or love someone with CMT, I had high expectations for this month. I try to increase speaking opportunities, host my own social media campaigns, go do goofy things in public to spread awareness (anyone else remember when I forced you to walk on Legos in front of the entire university? weird.) , speak with my classes, host educational opportunities, and strive to be the loudest and brightest CMT advocate I possibly can be. However, this month awareness took on a new definition.
This month was not the party I had planned. You know that saying ‘when it rains, it pours?’ Yep. Me too.
In fact, the month of September has put that theory to a test as I watched my life crumble beautifully before me. I was attempting to return to my post-Covid college lifestyle in Toledo all while needing to be present in too many places at once. 2 fascinating conferences, 1 incredible event. Move to a new city. Meetings. Friends. Opportunities. It felt like the September I dreamed of! Until it hit me. I was traveling almost every 48 hours to a different place as the people I loved needed me (Al - please never lacerate your kidneys again). It felt like I had traded in my weekend plans for boarding passes and of course - my body couldn't keep up. I ended up with pneumonia and a period of fatigue, nerve spasms, and sickness that lasted way longer than intended. Long nights of nerve pain, classes missed, my scooter broke, my braces aren't cooperating, ahhhhh. Phew, now we're getting into the real CMT Awareness Month post lol.
However, I can confidently say this past CMT Awareness Month brought to life the true meaning of life with CMT - life as a team. CMT Awareness Month has always been a time for me to reflect with the people in my circle that make CMT feel possible. This has been easier than ever before as I sit here teary-eyed reflecting on this past month and the life lines that got me through. They sat up with me at 3am when my nerves were in flames which ended in me passing out, they made sure I was fed, they gathered all the gatorade Walgreens had to ensure I was getting fluids, they continuously put on my braces for me, picked me up from the most inconvenient locations on campus because my body was exhausted, steamed hot pots of Polish essential oils for me so I could breathe out my right nostril (thanks Clare), replaced exciting plans with movie nights that they knew I didn't feel up for without a second thought crossing their mind (including reselling our tickets to the Jonas Brothers - I know, they are unreal), singing along to Rainbow Connection in my living room because sometimes crying feels good, a lot of “text me when you get there”s in between doctors appointments and road trips… I could go on for hours. Not a tear was shed alone and not an ounce of pain was dealt with without a gallon of support to follow.
And that my friends is awareness - finding the light to tell your piece even in the most chaotic of seasons.
January, February, March, April, May, June, July, August. September.
CMT Awareness Month. The honest reality of life with Charcot Marie Tooth disease. It wasn't what I had planned. It was more.
I was reminded of the blessing that comes with a battle like this - an opportunity to create the finest circle of people. My people.
Thank you to the people that shower me with love time and time again. And thank you for continuously showing up to my chaos of a party. Not just during awareness month... but every month of the year. I will never find the words to thank you enough. Never settle for anything less than your party people.
Until next time.
**CMT is the acronym for Charcot-Marie-Tooth disease, named after the three physicians who first described it: Drs. Jean-Martin Charcot and Pierre Marie (both from France) and Howard Henry Tooth (of the United Kingdom). It is estimated that CMT affects 3+ million people worldwide. CMT is a group of like diseases caused by inherited genetic mutations. CMT damages the peripheral nerves outside of the brain and spinal cord causing difficulties in everyday mobility. For more information, visit cmtausa.org**