Today, on a day when many Canadians are sharing a meal and thinking about their blessings, Tammy Fasken is giving thanks for her family, friends and network of formal and informal supports who are the reason she is alive today.
Tammy has been living with ALS for three years, receiving the diagnosis after more than a year of troubling symptoms. What started as shaking in her hands turned into difficulty lifting a plate out of the dishwasher, because it “felt like it weighed 40 pounds.” By the time her brother convinced her to go to the doctor, Tammy was walking with a cane. With zero knowledge of what ALS was, the realization of the disease’s trajectory and the fact that there is no cure came as a shock to her.
Today, Tammy requires 24/7 use of a BiPAP to help her breathe. But when her BiPAP mask fell off last month in the middle of the night and no one was around to put it back on, Tammy realized there was nothing she could do to help herself. Her family lives a couple of hours away, and her marriage recently ended due to the stress of a terminal illness that requires constant care. By the time her Personal Support Worker arrived in the morning – thankfully earlier than scheduled – Tammy was unconscious.
Since being diagnosed with ALS, Tammy chooses to focus on the things she still has, rather than the things she has lost. She urges us all to tell one another how we feel about them; to remember how much of a treasure it is to take a step; to put our fingers in the dirt and enjoy the feeling of the outdoors. Most of all, Tammy’s biggest piece of advice to anyone reading her story is to never stop showing affection.
“When you have ALS, a lot of the time people stop touching you,” she says tearfully. “Not intentionally… but maybe because they forget or they think that you’re too frail. Even if we can’t hug you back, we can still feel, and we can still lean in for the hug. If there’s one thing I want everyone to do this Thanksgiving, it’s to hold each other’s hand. Because I miss that. It’s been a while since I’ve held someone’s hand.”
If you are in Ontario and living with ALS, or know someone who is, our team can assist in connecting you to ALS Canada support services, our equipment program, and ALS clinics. If you live outside of Ontario, please connect with your local Provincial ALS Society to learn about the supports available in your area.