Blog Archives

7 (13) Years and Counting

9/29/2016

Happy Anniversary to my gorgeous husband. How lucky are we that we have never taken our love for granted and have appreciated every moment together.
When I was interviewed for the newspaper, I was asked about our relationship and how it has changed because of ALS and I couldn't say. We have always had a true love for each other, and we know how precious that is.
I can't say for sure that I will have another 7 years with you, but we've had the kind of love that lasts for a lifetime. I wouldn't change a thing.

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We Won't Give Up...

9/19/2016

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I'm still here! It is the three year anniversary of my ALS diagnosis. When I was originally diagnosed, my neurologist gave me 2 to 3 years to live. When I went back 10 months later for a follow-up EMG, he revised his diagnosis to 3 to 5 years. Such a strange day for me, do I celebrate being alive, or do I weep for my ticking clock? To be honest, it is a little of both.

In the past 3 years I've lost two young vibrant coworkers to illness, and my 53 year-old-brother to a heart attack. I had been experiencing some feelings of "survivor's guilt", thinking that it should have been me instead, I felt that was the expectation for myself and those around me. I shared my thoughts with a good friend who told me that there was a reason I was still here, that "I was not done yet". It really hit home for me and motivated me to continue on with advocacy and finding ways to help others. What I didn't realize is that maybe I was still here to not only help others, but to experience beautiful moments for myself.

Last weekend, Travis and I attended Camp YMCA Kanawana's Annual Friends & Family Reunion, where I was honoured with the "Pip" Award in front of friends I had attended camp with in the 1990's.

It was a dream come true.

I had no idea how many people who I hadn't seen in over 20 years, would show up. At least 30 past campers and staff who I had been at camp with attended with their families. I'm not kidding when I say the weekend was a "dream come true". I literally had been having dreams about going back to Kanawana for years. And after speaking with others, apparently I wasn't the only one having these dreams, demonstrating the incredible spiritual imprint Kanawana has on our hearts.

It feels impossible to express the overwhelming emotion and sense of love that was given to me that day.

We arrived Saturday morning and headed to boating to greet people. As we looked out over Lac Kanawana, canoes appeared out of the mist. Yumi! Heidi! Simon & Natacha! All arrived by canoe, what a perfect introduction to old friends. And they just kept coming, Heidi, Tammy, Tracy! I can't name everyone because I'm sure I will leave someone out!

Lunch in the dining hall felt like a time warp as everywhere I looked another fellow Kanawanian turned up. It was really special to see them especially with their children who were, or were about to become the next generation of campers. It was great to go through old photos and reminisce and of course with that comes a belly full of laughter! After lunch Travis took me for a canoe with my trip leader Tom and his family. We canoed through the Suez Canal to Lake Wilson and our old overnight sights.

At the "Pip" Award Ceremony Andrew Caddell read a moving letter from his son James to his sister Emily when she was considering attending camp, and he shared his thoughts on the magic of Kanawana.

Bruce Netherwood came with his wife Jackie and their 3 daughters to present me with the award. Bruce hired me to be a junior girl counsellor in 1990. I went on to work for him for 5 years at Kanawana and then he hired me at the South Shore YMCA Camps Hayward and Burgess in 1995. He was my boss for 10 years and for those who know him, know him as a mentor, an inspiration, a prankster and just a really good guy. He helped me become the woman I am proud to be! I was lucky enough to also be good friends with his wife Jackie, and her sister Dellie who I was a counsellor with. It meant so much that they came all the way from Cape Cod to present me with the award. Not only that, but it was their daughter Jasmine's 18th birthday!

Jackie and her daughters sang "We (I) Won't Give Up" by Jason Mraz straight to me, it brought the whole dining hall to tears. It was so moving and beautiful and I can't express my gratitude for that moment. Bruce spoke about our time together and knowing me as "Sharmy"! He shared my history and presented me with the "Pip" Award.

Travis helped me up to accept the award, and of course I had to thank my husband for being my rock and number 1 fan. I thanked Andrew and the "Pip" Award Committee for making my dreams come true and honouring me with this prestigious award. I thanked Bruce and his family for being there for me and for the many life lessons I learned from Bruce. I shared my shock and confusion of being given a diagnosis of ALS, but that Kanawana's motto of "Non Nobis Solum" (Not For Ourselves Alone) is so important in many ways. That motto inspires the advocacy work that I do, and helped me to discover purpose and meaning in living with a terminal illness. Also, Kanawanians from near and far, lifted me up, supported, fundraised, encouraged, and showed up when I needed it. So thanks to those who have continued to keep me in their hearts. To those who were able to attend, and to those who cheer me on from afar.

And of course, after dinner, Sean Day's current staff who are incredible (Sean whatever you are paying Vanessa, double it!!!), sang cheers for ever!
"Wherever you go, whatever you do, you will always be a Kanawanian".

Though it is difficult and sometimes we falter, we have chosen to make the last three years about LIVING, LOVING and LAUGHING.

Can you imagine the goosebumps with these beautiful ladies singing "We Won't Give Up" by Jason Mraz to me?

"Pip" Award Ceremony

Check out the Gallery page for more photos.

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25 for 25

9/7/2016

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My friend Eddy was diagnosed with ALS on April 14, 1992. Living with ALS for almost 25 years Eddy is an ALS Ambassador and incredible advocate. His spirit and smile are contagious. His story Let's Roll "out" ALS is beyond inspirational. Please support his latest fundraising and advocacy efforts "25 for 25" as his goal is to raise $25,000 for living with ALS for 25 years. We love his "Let's Roll" stickers that create awareness by displaying them on cars, boats, bikes, motorcycles, skateboards, etc, etc! Eddy's website has a store where you can donate to receive stickers and keychains. Proceeds go to ALS Canada to fund research for treatment and equipment purchases for people living with ALS. Together we can make a difference. Click on the button below to support Eddy's goal and to see him continue to smile!

Let's Roll

I also have "Let's Roll" decals & keychains, I would be happy to give on behalf of Eddy's campaign.

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Celebrity Chef

9/6/2016

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Once again so proud of my amazingly talented Celebrity Chef. Click on the picture above to watch the video.

Duck confit bread pudding with a blueberry gastrique

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From Russia with Love...

9/4/2016

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It has been a week since we've been back from our cruise and we are still feeling jet-lagged. Apparently that is normal, however, considering we crossed 8 time zones and back in about 2 weeks! But I am not complaining, it is a small price to pay for a trip of a lifetime!

A special thank you to my parents for giving me this bucket list experience, I never imagined that I would be able to travel to Russia since being diagnosed with ALS. A lesson to me that ALS is not an excuse to give up on my dreams!

We arrived in London exhausted after an overnight flight, and had some tea while we waited for our hotel check-in. Barely keeping my head up from exhaustion, when we finally got into our room we discovered chocolate cake, flowers, wine and fruit from my aunt Juliet & uncle Geoff. That perked me up and I was instantly refreshed, what a treat! I was also impressed with the hotel's accessible room. It had a shallow bath with a rail, and a bench that I could use to slide into the tub. I used to love baths for relaxing, but now they are too hard for me to get in and out of. Travis immediately went to Boots on the corner, picked me up some bubble bath and I soaked away my airplane residue. In fact, I went through a whole bottle of bubble bath in 3 days!

Thank you to my amazing cousins Emily & Jessica and my aunt Elizabeth for joining us in London at the historical Fortnum & Masons for a lovely catch-up, I am very lucky to have such a loving family. It was extra special to spend time doing a puzzle (as many of you know one of my favourite activities) with my first cousin once removed (how awful does that sound, who came up with this stuff?) Sebastian. Emily's son, who is extra adorable and seemed to know that we were family as he doled out hugs to all of us.

Also, a big thank you to Coral, Megan & Sherryn for coming to London to spend time with Travis & I. We had such a great time together, the weather was beautiful and we walked & wheeled the streets of London ending up at dinner at Jamie's Italian, one of Travis's favourite chefs.

Both visits reinforce to me that it is not the quantity of life experiences and/or time spent with family, but the quality the matters. Even though we were in London for such a short time, the memories are precious.

We embarked on our cruise on the Celebrity Eclipse in Southampton. I was very impressed with the accessibility of the ship. It was the most accessible place I have ever experienced! Even within the washrooms the doors were push button, with a push button lock and large enough for me to fit my wheelchair into. When Travis inserted the key into the lock of our cabin, the door opened automatically. I had a roll in shower and the ship even lent us one of their wheelchairs with big wheels for the length of the cruise. It was a lifesaver as many of the cities we visited had cobblestones and curbs and Travis easily maneuvered the chair, which we could not have done with my chair as it has small wheels. Even the buffet had plenty of room for me to navigate through and on top of that it was delicious! It made me think of Don, he would have looooved that buffet with fresh, hot food made in front of you including, fish & chips, indian, fresh salads, hot thin crust pizza and sushi. It even had an ice cream bar, the staff would give us bowls of candy including Reece's Pieces without the ice cream to take back to our room. I can picture Don's incredulous face over that one! I used to be a buffet snob, but no longer!

I have 5 new countries to add to my list! I can't say enough about Scandinavia, Europe & Russia. Such an overwhelming sense of history. So much to say, I've of course highlighted all of the awesome things we experienced on the Travel page of the blog, and have included pictures on the Gallery page.

Copenhagen, Denmark was our first stop after 2 relaxing days at sea. It was wonderful to be able to walk off the ship and be in the heart of the city. We visited the King's Gardens and Rosenborg Castle in the sunshine. It was amazing when we wandered onto the walking street called the Strøget. Established in 1962 and at 1111 metres long, it is the world's longest and oldest pedestrian street. It was wonderful to be among the buzz of shoppers and street performers without having to worry about cars and cobblestone!

It was raining when we arrived in Stockholm, Sweden, but that gave us the opportunity to see the Vasa Warship. It was built between 1626 and 1628 and is the world's only preserved 17th century warship. Meant to be the most powerful warship in the Baltic if not the world, commissioned by King Gustav II Adolf, within minutes of sailing 1300 metres, it sank. The story of raising the Vasa from the sea and it's preservation is a feat of mastery and worth a read.

As I am no longer able to walk, I had researched wheelchair accessible tours. I must thank Cory Lee for his website Curb Free with Cory Lee, as he puts it "SHARING THE WORLD FROM A WHEELCHAIR USER'S PERSPECTIVE" an invaluable tool for continuing to travel regardless of mobility issues.

Thanks to Cory's Blog, I discovered Tallinn Shore Excursions-Saku Travel with Maarja our excellent guide and Jüri our driver. They were so kind and provided an incredible tour. I would recommend a trip to Estonia with them as your guides for everyone! It is an incredibly beautiful city with amazing people who changed the world by holding hands. In 1989, two million people held hands to form a human chain over 600 km long linking three capital cities – Vilnius in Lithuania, Riga in Latvia and Tallinn in Estonia. This peaceful political demonstration became known as "The Baltic Way". As well, Estonians participated in the "Singing Revolution". These are my kind of protests!

Tallinn, Estonia with Maarja

Wheelchair accessible van with Jüri

I cannot say enough about the beauty of St. Petersburg. I wish I could have spent more time there. We again had an awesome guide Elias, with Rainbow Russia Tours. Incredibly, we entered The Hermitage Museum at the Winter Palace an hour and a half before it opened to the public and had a private tour without having to maneuver through thousands of people which is usually the case! The rooms are stunning and lavish and the artwork incredible. I could have stayed all day. The Church of the Resurrection on the Spilled Blood left me speechless with its Russian intricate design and incredible mosaics and the fountains and gardens at Peterhof are worth the drive out of the city.

It is impossible to visit St. Petersburg and Berlin without thinking of the incredible history of wars, tragedy and resilience that the inhabitants experienced. Travis & I couldn't help feeling moved by what happened in many of the spots that we stood. From standing in the Lustgarten where Hitler held rallies for over a million people, to being in the spot where "Operation Valkyrie" conspirators were executed, to seeing the remnants of the Berlin wall, I am inspired by the will of human beings to survive and overcome.

How do I call myself lucky when living with a terminal illness that leads to paralysis? It is never forgetting what others have sacrificed for our freedom.

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7 (13) Years and Counting

We Won't Give Up...

25 for 25

Celebrity Chef

From Russia with Love...

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