Monday, December 7, 2015

Lyndon's Story

Hey everyone! Please take the time to check out my guest writer this week... Lyndon Demers! I met Lyndon through MBNF and he has graciously agreed to share his story with the group... so here it is!

HAPPY 28TH BIRTHDAY TO ME!  Hello, my name is Lyndon Demers and I am delighted to share my story on Courtney’s Blog, especially on my birthday.Thank-you to Courtney, the MBNF Support Group and all the readers for making this blog very successful.

After Courtney presented her story in October at the first MBNF Symposium, she mentioned or suggested to me I should share my story.  I agreed a few weeks later, and I asked to be a guest writer for December 7th, my birthday. So I had a few weeks to plan and write this story, but I couldn’t think about what words on paper like what I am doing now on December 4th.

I have lived in 5 provinces, and 8 cities throughout my life and been to many schools, left numerous friendships behind. The hardest move for myself personally was the move from Edmonton, AB to Portage La Prairie, MB in 2002.  Sometimes, I still call Edmonton my actual home but after being in Winnipeg, MB since 2003, Winnipeg feels more like home every day.

I was diagnosed with Neurofibromatosis Type 1 at the age of 3-years old. I have faced numerous learning challenges through Elementary, Junior High & High School, and yes, even college.  Back in Grade 1, my reading was average and I was held back a year. My writing/printing on paper was poor (probably still is) through school, I was lucky enough at each school in each city I have lived in, the school either have me use an in-class computer, which had a keyboard that connected to a computer and typed out my notes in a word document. Oh my, how technology has changed from the mid-90’s to 2002!!!  Teachers also supplied printed notes so I wouldn’t be distracted in class.

My first major surgery was at the beginning of Grade 6 (1999), the decision was to have the surgery on my Achilles Tendon, putting me in a cast rather in being in cast the following fall in Grade Seven (2000). Well, that plan failed, I ended up being in a cast the following year because I jumped of a ledge on the steps at my home and broke a bonne in the other foot because there was a wasp that was around me.  I was attacked by dozen of them a couple years prior to 1999, ever since then I have been terrified of wasps.

I have a tumor near my left eye, I have 2 surgeries to do a biopsy on it, in 2002 and in 2009.  Unfortunately, I think it is growing back again. From the time I was diagnosed until 2007, I never met one single person or family with Neurofibromatosis.  I started working at Walmart in 2004, and it probably was not till 2005 or 2006 when I started to deal with members of the public face to face.  The difficult part of it and to this day is sometimes still tough to deal with. Customers have always noticed my tumor, but yet they don’t know it is actually a tumor.  They think it is a black eye, the way some customers ask is tough to answer.  The toughest question to deal with,   “What does the other guy look like?” .The reason why it is tough to for me answer is, I don’t get into fights or go looking for fights.  The only fight I have been through and am winning, is the battle with Neurofibromatosis and also NHL video game fights.

So starting in 2007 was the start of a life-changing adventure.  I was able to go to my first meeting for MBNF, back when MBNF was a small group, but I met numerous families with NF including the DeGagne family & the Gregorash family. Their names are important for me to name at this time since they have had such a big impact on my life. Since 2007, I have watched the group grow and been part of an extended MBNF Support Group family, I have seen MBNF gone from a non-charity status to receive non-profit charity status.  I have shoveled for NF, done multiple NF Charity BBQ’s at Walmart which they have matched each time. I went to 2 NF Symposiums and been to numerous Run for NF events.  I have dated and lived with someone with NF.  Joining MBNF Support and becoming a director and having provincial monthly law for Neurofibromatosis, are just some of things that have changed my life in the last almost 9 years.  At the first MBNF Symposium, I was honoured with a volunteer appreciation award, which I was very honoured to accept.  
I love being part of the Manitoba Neurofibromatosis Support Group, we have a great bunch families and friends and I am looking forward to next 8 years.   I would like to thank my family and friends for supporting me.   Thank-you to Courtney for coming to Winnipeg and sharing your story.
This story is 28 years in the making! Cheers to next 28 years!

Thank you for reading my story!  Oh yeah! This just another surprise as no one knew except Courtney, I was putting up my story on Courtney’s Blog!

I hope you all enjoyed Lyndon's story, please comment, like or share this post to show your support!

If you're interested in sharing your own story on Courtney's Column like Lyndon did, comment below and I will get in touch with you!


  1. Well said Lyndon. Facing the demon is always hard but it does make things easier. I wish you success and keep on writing. My Mom was born and raised in Portage la Prairie and my Dad lived there for about 25 years.

  2. Great work Lyndon and keep up the great work you do for MBNF and NF in general.