The picture on the right was taken at a Boston Pizza, where I’ve worked as a bartender for the last four years. It’s with a new friend of mine named Mike Koutis.
When I first saw Mike, I was quite surprised, as most people are upon meeting him. His spastic and uncontrolled body ticks, gnashing of his teeth, spitting and many other odd behaviours, makes for a challenging encounter.
Mike has an extremely rare neurodegenerative disorder, which is one of a group of diseases called neurocanthocytosis (NA) syndromes. His specific condition is nearly unheard of anywhere in the world, with only 150 people afflicted by it.
The symptoms include ‘ticks’ every second, which are involuntary body movements, and biting of the tongue. When Mike comes into Boston Pizza (BP), everyone looks at him because no one has seen anything like it before.
One day, Mike, who I had never really talked to, sat at my bar and opened up his story to me.
Three years ago he was completely healthy and gainfully employed teaching algebra to adults.
Then, he began getting nervous ticks. The frequency of these erratic outbursts began increasing and he had trouble focusing.
For two years, doctors could not diagnose his illness until they finally discovered he had neurocanthocytosis disease, or NA.
Because of this condition, Mike’s life expectancy is another 10-15 years; he has dropped to less than 110 pounds; and he’s been forced to go on disability for which he receives $700 a month.
Even though Mike is 40-years-old, he was forced to move back in with his parents, otherwise he says he would be on the street.
When he comes into the restaurant, I pay for his food, and he makes me CD’s. This is by no means a charity case, as he is happy to pay for his own meals, but I have the opportunity to make money while he unfortunately does not.
I actually really enjoy his company and I’m happy to call Mike my friend. I feel this is the least I can do.
As he recounted his story to me, my heart began to sink more and more as the details went on.
The reason Mike and his story inspire me is because of his attitude and outlook towards life, regardless of his condition. He will be the first to remind you that every day is a new day for him to have a positive outlook on life, and to be grateful to be alive because he doesn’t know which day will be his last.
I was so moved by his story that I asked him to take a picture with me so I could post it on Posi, a new app which I co-developed recently.
On Posi, no one can comment on anything, or put anything down, and for that reason I felt safe in sharing the picture above and explaining the meaning behind it.
Once the story was posted, everyone I work with began engaging with Mike. Even BP regulars, who didn’t know his story and just thought he was weird, started to talk to him, too. Some other servers have begun paying for his meals whenever they can; this is now a collective to make Mike feel more at home at his second home. BP is the only place he goes, other than home and the movies, because his condition can be quite embarrassing and most suffering from this disease do not leave their house.
A few days later, I was on my way home from work at around 3 a.m. when I received this message from a woman named Raine Petersen on Facebook (see picture on left). This picture reminds me every day why we created Posi and why we are trying to use social media to make the world a better place. Had it not been for Posi, I would have never connected with this woman and would never have made an impact in her life.
This woman, who lives in Australia, contacted me out of the blue because I chose to share my interaction and my story with Mike Koutis, which then prompted her to reach out to me and express her sentiment.
By creating Posi, we are able to celebrate stories like this, and to have at least one place on our phone where we can make a positive impact and share our story with the world in a genuine and organic way.
If you are looking for more stories like this, you can download Posi in the App store and join us in changing, for the better, the world of social media.
