This is bigger than me
Today is my best day and I plan to enjoy it.
I sit here at our kitchen table with my iPad, a small camera is attached, and a small sticker is on my glasses. This allows me to use the apps and to write this story. For this, I am truly grateful and not trapped inside my mind. Both of my hands and arms have stopped working. My tongue is weak making it difficult to swallow and impossible to say simple words. My legs are weak and today I was measured for a wheelchair. Tonight, I will be fitted with a BiPAP machine to help me breathe at night, and a feeding port is being installed in my stomach, as I am a shadow of my former self.
My journey started 17 months ago with my right hand and forearm feeling very cold. Then my fingers were stiff and so I bought the ergonomic correct pads, as my job included a lot of computer work. This didn’t help so I decided to go to my doctor. He suspected carpal tunnel and referred me to a neurologist. A month went by and then I got in to be tested. It was a series of nerve tests with no diagnosis other than I was to wait another couple of months and then get tested again. It was not carpal tunnel and was affecting my left leg and tongue as well. I waited another couple of months with my right hand getting worse. After another appointment with my GP, I learned they thought I had ALS. ALS? I’ve never heard of it. I remember going home and telling my hubby. I googled it and began to read out loud what it was. We both were in denial and would wait for the specialist at the Kaye Clinic. A few weeks later I went to learn the raw truth. I have a very aggressive ALS. It is terminal. Maybe 2-3 years. I remember sitting in my truck in the parking lot feeling numb. I really don’t remember driving home.
From there we met some of the most incredible people that truly helped us get ahead and understand the changes that came. The support came emotionally, and physically, and included help finding assistance from financial aid to equipment.
I went through all the stages of grief. I begged God to heal me. Then I had it out with him. Broken, I wept and surrendered. That is when I heard, this is bigger than you. What does that even mean?
My eyes were opened, and I started working with three research teams to find out more about this disease in the hope of an early diagnosis and possibly a cure. Then I began working with the ALS Society to see how to help.
Now I need to back up a bit. Three weeks after my diagnosis we lost our God Child and nephew Cole, in a terrible accident. Throughout this all, I kept hearing, this is bigger than you.
This life isn’t fair, and it downright sucks sometimes. I have learnt to find my gratefulness every day, thank God for what I can do and make today the best day.
Our son, Cody and my hubby, George came up with the idea to cycle from Canmore to Lake Louise this summer for a challenge. This became bigger than us. We decided to ask everyone to join us and turned it into a fundraiser for ALS. Starting this August 19th will be the “1st Annual Cycle for ALS”.
So, do you own a bike? Do you like the mountains? Does this sound overwhelming or challenging? Everyone can get involved, whether you ride only a few km or all 88km. We want you to get involved, to ride or to sponsor a rider. To do so, visit this link.
https://www.alsab.ca/cycleforals
The proceeds will go towards research for a cure and funding for the ALS Society for equipment that is available to the patients who need it. The biggest thing I believe would make a difference is simply awareness. Please consider sharing this and getting involved.
A huge thank you to my family, friends, caregivers, and the ALS Society. This is bigger than me. Today is my best day, and I plan to enjoy it.