In October, Travis & I will be heading to Newburgh to visit with Heather & Andy for my birthday, October 19th, and participate in the Hudson Valley Walk to Defeat ALS. I love visiting them during my favourite season as the leaves are magnificent in fall colours. Heather & Andy and our God-dog Clementine were the first to participate in ALS fundraising as they went to this event last year. Check out the brilliant pages they have created on the website. Each individual team member has a page with stories and photos and are so brilliantly done I encourage you to click on the link below, and then click on each team member to check out their page (Clem's page is the best!).
Hudson Valley Walk to Defeat ALS
Travis & I are so excited to be leaving for Antigua on Saturday to spend our 5th year wedding anniversary on the same beach where we were married!
Hard to believe it has been one year since my diagnosis of ALS. I had a rough start to the day, I remembered so vividly how I woke up without a clue that day as to how my life would change. I was a trainer at CMHA for concurrent disorders to help people learn how to identify, assess and treat people with mental health and substance use issues. I was on my way to a breakfast meeting with my other trainers. CMHA was paying for our breakfast to reward us for our hard work and we were going to continue to review our training materials to make our training even more awesome than it already was! When I walked into the restaurant, my colleagues had a look of shock on their faces. The day before was the tragic Ottawa bus/train crash that was horrific to our community. It turns out that our work colleague Karen Boyd and her husband Rob, had lost their son Connor in the crash. He was on his way to University. Shocking and heartbreaking, we consoled each other and prayed for our colleagues. I said goodbye to my fellow trainers and they wished me well for my EMG appointment as I was a little nervous about it. Travis met me and though he doesn't usually attend doctors appointments with me, he came as I had been through two MRI's and we weren't sure as to what could be wrong. I went through the dreaded needle in the muscle test and the neurologist kept saying "I'm afraid to say this is quite serious". As we went back into his office, I was typing what he was saying to me on my phone; ...not MS...no tumours...no blockages...sound back...sound brain...for sure neurological...nerves going to muscles...motor nerves not affecting sensation...degenerative condition...motor neuron disease...lou gehrigs disease (at this point Travis elbows me and tells me to stop typing and listen to the doc but what he doesn't know is that typing is allowing me to keep it together and keep listening)...no known reason...nothing pressing on spine...ALS...progressive...young...average range...moderate...no cure...1 per 100 000 per year...nothing triggered it...not inherited...variable...shorten life...2-3 years...
Of course this is a devastating tragedy for Travis & I, we lost our home, I am losing my body, I have lost my career, I am losing control (for those of you that know me well, that part is definitely not easy!), we have lost our future dreams of working on a resort in Bali, and we both live in fear daily. ALS is an illness that is at the forefront of your thoughts 100% of the time.
Sadly, tragedy is a part of life and when working with young adults who had experienced first episode psychosis and have suffered multiple traumas from perpetrators and society itself, I am familiar that bad things can happen to good people at any time.
I am proud of the fact that when diagnosed, my only regret had been not travelling to Italy. In fact, my diagnosis has been a blessing, I have had the chance to travel to Italy not once, but twice in the past year. I now have the opportunity to "make moments matter" with friends and family. Although "can't" has become a part of my vocabulary (I never believed in that word before), I am slowly taking out the word "no". And I have the chance to reflect on my life as a camp counsellor & director, teacher, children's museum supervisor, waitress at a ski resort, art therapist. I've lived and worked in four different countries (Canada, US, England, St. Maarten) and too many cities to count. I have met thousands of special and interesting people along the way. I've been on three helicopter rides (New Zealand Glaciers, Fiji, the Grand Canyon). I have been Bossman. I have camped. I have rocked girl dance parties. I have rock climbed and zip lined. I have rescued animals. I have swam in the ocean. I have gone to a prestigious University (McGill) and joined a sorority (Kappa Kappa Gamma). I have skiied the rockies. I have made a difference in the lives of others. I have played guitar and sang karaoke. I've seen the Northern Lights. I have sailed. I have pet cheetahs, not once, but twice. I have shot the moon. I have been on exploratory canoe trips. I have parasailed and flown in a glider. I have travelled the world. I've found the love of my life and married him on a beach, and I've been shown by those in my life how much I am loved.
I have lived. I have lived many lives, lives that others have never had the chance to live.
If tragedy were to strike tomorrow, what is the one thing you would regret?
Make it right.
I am proud to be a person who stands up for her rights! After initially being denied the disability tax credit, I was not going to lie down! I filed an appeal and reached out to my OT and my Neurologist to offer letters of support. Many people go through lawyers for this. I am amazed to say that the government reversed the initial determination and I am now eligible for the credit (of course on the same day we received a letter auditing us for our $4000 withdrawal of RRSP's for the first time homebuyers deposit, unreal)! I have also fought Bell & Rogers on a number of occasions for wrongful charges and have also wrote a letter to United as when Brittany & I were flying back to Ottawa, my chair came out of the hold broken and no one would help us until Brittany got feisty (another one to not back down when it comes to fairness, we are both Libras). The man told us that we should have threatened contacting the ADA (Americans with Disabilities) and we would have been helped faster. I have to admit that when I was initially diagnosed with ALS, a part of me began to say (what's the point?) in dealing with life's stressors. I am happy to say that my fight is back! Bureaucracy can knock the best of us down, but it is worth the time and effort because it sure feels good when the little guy wins one against the giants!
Special thanks to mom & dad and the Beaconsfield Golf Club for raising so much money for als.ca/icebucketchallenge
And also special thanks to Julie & Steve for hosting an IBC BBQ for Travis & I!
Beaconsfield Golf Club IBC with Mom & Dad
Julie & Steve IBC's!
Long & painful!!
As awareness continues to spread through the amazing ice bucket phenom, these two movies about ALS are soon to be released and give an idea of some of the emotional challenges living with this disease. Sure to be tearjerkers, probably have to watch them at home. The scene where Stephen Hawking trips, really touches home for me as to where this all started. I am very lucky to have a love story of my own.
The Theory of Everything
You're Not You
I am back recovering after an action packed week in Niagara and Vegas. Check out highlights and pictures in the travel and gallery pages! The world truly is a beautiful place made even more special by sharing unique & amazing experiences with loved ones. Travis would like to thank Heather, Brittany & Tania for taking such good care of me and making my dreams come true.
I am so grateful and thankful to everyone who has, is, and will participate in the ice bucket challenge. www.als.ca/icebucketchallenge
It is so amazing that it is still going strong! I have had so many people send such lovely and supportive messages to me while being doused in ice that I just can't keep up with thanking everyone. So in honour of you, I send it straight back to you with my own dousing!
Keller Williams VIP (our real estate agents):
Carol Jean Skinner (née Sharman)