It can be a challenge to be a supportive friend of someone with Ataxia. Those who not have the condition may find it difficult to understand exactly what is impacted and what is not. Allison Tse tries to put herself in her friend’s shoes and imagines what she must see from her perspective. As well as really listening to the triumphs and frustrations in life like we all need.
Hi there! My name is Allison and I’m 28 years old. I live in Toronto, Canada, and I’m here to tell the story of my best friend, Courtney, who I’ve known since the age of 13. This is my version of her inspiring story – how she took a life-changing diagnosis and turned it into her superpower. She was diagnosed with Autosomal Recessive Cerebellar Ataxia Type 1, ARCA1.
We talk about anything and everything. Some of our conversations can get serious, but many of them are lighthearted and simple. We have sleepovers, do double dates with our moms for Mother’s Day, and complain about boys. Our relationship will evolve over time as her condition changes, but I know it will just strengthen through our shared challenges. Ataxia has not changed how we support each other, but now the support I provide for her is sometimes focused on her Ataxia experience.
What has changed is our perspective when we talk about certain things. When we talk about dating, we sometimes look at it from the “Ataxia lens” – how should she tell a new guy she’s seeing that she has Ataxia? When we talk about work, we may discuss the accommodations she is considering asking for.
I’ve always admired her strength, insightfulness, and optimism – I’ve never seen anyone with such ability to laugh at themselves and find joy in any situation. Ataxia has had a profound impact on her life. I know that it can be challenging for her at times to get back to this old self, but I still look to Courtney as a constant source of inspiration – someone who approaches each challenge with bravery and integrity.
Courtney has taken what some would see as a curse and has turned it into a gift. I’m in awe of the way that she has found purpose, meaning, and a voice through this. After taking the time to process her diagnosis, there was no stopping her. She started Hope for Ataxia (HFA) with a friend, Mark, and a few ideas. Since then, she has hustled and spent every waking moment cultivating and growing HFA. She stays up all night thinking about marketing ideas. She sends cold emails to podcast hosts to ask them if she can be interviewed about HFA. She and Mark design merchandise that they can sell to reinvest into the cause. She is obsessed in the best way possible. This is the life she was given, and she’s using it to change the world.
Ataxia may be an outcome that can be caused by a variety of conditions – everything from strokes, to multiple sclerosis, to cerebral palsy. As you’re walking down the street every day, you may be passing someone with Ataxia. We will all go through an Ataxia-like experience as we get older, so it’s crucial we approach it with empathy and understanding.
It’s important that we advocate for a more accessible world, as we will all need it. One day, many of us will have to give up going to the store because there’s a set of stairs in front of the entrance without a railing. Or, when we’re out for dinner, we’ll have to go home early to go to the bathroom because the restroom is downstairs. These little things that able-bodied people take for granted are humiliating, frustrating, and inhibiting for everyone else. We have a moral obligation to make the world inclusive for everyone, not just the privileged few.
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.