Ah, it's been awhile since I've written a personal post. I have to admit December was a tough one. Canadian winters are brutal to those in wheelchairs! It's been a particularly snowy one, so I've been cooped up inside, too afraid to go out on my own for fear of getting stuck. Obviously living with ALS brings such a difficult mental burden and I admit it got the best of me in December. The short dark days and cold, and Travis working late had me feeling sorry for myself and thinking too much about what is to become of me. I absolutely felt broken. My first Christmas without my brother Don. Then my Granny died. 2016 really did take the best of them. Ann Peterson was 96 years old, and never stopped being a firecracker. You couldn't meet a more sweet and adorable lady, who was still in love with her husband, though my Grampa died many years ago. She would always watch out the window waiting for your arrival, or waving you goodbye. Granny approved of Travis, so I married him!
I have now broken out of brokenness!?! Travis took me to Antigua in January, and the vitamin D did a lot for my mental health recovery! I do realize how lucky I am, not everyone gets to go to the Caribbean to alleviate their woes, however, if you do have use of your legs, get out in the sunshine despite the cold and snow, it is truly healing!
I have also been lucky enough to continue with ALS Advocacy. On Monday, Travis & I met with Canada's Minister of Health Jane Philpott. It truly does bring purpose and meaning to my life to work towards helping others and I'm forever grateful for the opportunity. We represented the ALS Society of Canada in sharing our story and asking the Federal Government to provide much needed funding towards research for treatment and a cure. If you are interested in the "Ask", there is more information on my media page. We are especially grateful to the government MP's and employees who have been participating in the ALS Caucus.
Some of my talking points included:
~my diagnosis September 19, 2013. I was 41. CMHA, EMG, 2-3 years left to live (this Sept will be 4 years!)
~with the diagnosis came loss, career I was proud of, first home we bought together, independence, I can no longer drive, and have had to learn to give up control, of my body, my future, my dreams with my husband
~every day I discover ADL I can no longer accomplish on my own, it began with walking, now is moving to my arms and we are looking into support as it is no longer safe for me to shower on my own. As a strong independent women with a stubborn sense of pride inherited from the women in my family, you can imagine my frustration!
~Living with a terminal illness takes a tremendous mental toll on myself and my family. Travis and I have conversations that would shock most people
~despite our trials and tribulations I do feel grateful and blessed. I am so thankful to be living in the best and most beautiful country in the world. I have incredible friends and family who still see me as myself and not just my disability. I have learned to not sweat the small stuff and appreciate the precious moments in life, like when my cat Buddy jumps on Travis’s shoulders like a parrot!
~Canada prides itself on protecting the safety and security of Canadians. ALS is everyone’s worst horror movie nightmare, slowly becoming trapped in your own body until you are paralyzed, while being completely aware of what’s happening.
~We are desperate for help from the Canadian government. With funding I truly believe that treatment is possible. I am impressed with Minister Philpott's work involving HIV/AIDS in Africa, with Travis being South African, we are aware of the devastation of the illness. But with education, awareness and funding, HIV/AIDS is no longer the horrific death sentence it once was. I wish the same result for those of us living with ALS. With the current research being done towards ALS we are on the verge of important discoveries.
~I am grateful for the opportunity to advocate on behalf of Canadians living with ALS, especially those who have lost their ability to speak. I am also very grateful to the ALS Society of Canada not only for their support with equipment and home visits, but for the incredibly smart, passionate people advancing research for treatment and inevitably a cure.