September was CMT Awareness Month. I decided to use my blog to raise a bit of CMT Awareness by doing an “alphabet challenge” - blogging a letter / key word of the things I face with CMT and as an athlete with CMT. I didn’t make it through the full alphabet in September so I am continuing my challenge through October. Today is brought to you by the letter U. I hope my blogging will help you to learn more about CMT - the most common but least well known hereditary nerve disorder - and me. And I hope this will also help to raise funds for the Charcot Marie Tooth Association to support its efforts to find a treatment for CMT. You can join me in learning more about CMT by clicking onto www.cmtausa.org and of course a donation would be wonderful too!
A few months ago I was having a laugh with my fellow group moderators on a site we look after. Someone had made a comment that with a relentless focus on positivity that real discussions about the challenges we face were being quashed.
We were baffled. Our approach was pretty basic - don’t just bitch about something. Seek constructive feedback. Look for the positives in your situation. And ask for tips and help - rather than just posting complaints.
How would a focus on proactivity stifle open discussion?
It prompted me to send to everyone an image similar to this…
Behold, the mythical unicorn, whose excrement is the genesis of rainbows! It is only the perception of bad that makes it so!
On one of the groups I belong to for CMT, someone posted the other day how living life with a smile and positive attitude makes it harder for people to understand what living with CMT is really like.
I suppose the gist of this is that because CMT is an invisible illness (well, at least until you have muscle atrophy or adaptive equipment usage that comes with progression and deterioration of motor skills), it is harder for people to feel empathy. But is that really true?
Personally I do not think that my positivity makes it any harder for people to “get” me. Sure, the responsibility for communicating about me and my condition is mine - and I need to communicate this clearly because I don’t look like I face any struggles.
Would I sacrifice my positive attitude for a bit of compassion? No. Way.
I believe that a positive outlook sets me up to positively manage the challenges I face. Nothing is a roadblock - rather things are just challenges to figure out.
And I have the ability to communicate this to others.
Nothing is bad, but perspective can make it so!
A few weekends ago I made a crazy trip to Prague for dinner to meet up with my Sigma Kappa sorority sisters. Three of the fantastic women who were my “violet haze” cheering for me in Chicago were in Prague, as well as four other dear friends. It was an easy trip to make from London, and I knew it would be great to see everyone, so off I went.
Sigma Kappa represent at ITU World Paratriathlon Chicago!
Walking around Prague, one of my friends had asked to me if I had seen the Amy Cuddy TED talk on the power of nonverbal communication - faking it until you make it. I hadn’t. We discussed the idea of a “power pose” (as we were talking about workplace environments and jobs and success” and intuitively, without seeing the talk, I knew Cuddy would be someone whose ideas resonated with me.
Watch it. The key point for me is about 15 minutes in: “Our bodies change our minds, our minds change our behaviour, our behaviour changes our outcomes.”
Dream it, Do it. Be the positive you want to see in the world. Nothing is horrible only your perception makes it so.
And unicorns shit rainbows.
I was initially going to post this on Tuesday, but as some people know my company’s CEO died tragically on Monday night. Tuesday took on a different focus for me. But in some senses it makes this entry now seem even more relevant to me. Yes. Yes I am going to approach the world with a “unicorns shit rainbows” approach to living. Because you never ever know when your time may be up. And goodness know I would rather be remembered for my optimistic and hope-filled view of life than the opposite.
Rest in Peace, Moustache.
As I blog my way through the alphabet to raise awareness of CMT, today’s post was brought to you by the letter “U” - Unicorns. You can learn more about CMT and donate to support the search for a treatment for this (at present) incurable progressive degenerative nerve disease at http://www.cmtausa.org — Thank you!