Stephanie Hales was diagnosed with ataxia already 20 years ago. She used to work in hospitality but now spends her time doing volunteer work, knitting, and aquacising. She also regularly joins the HFA Global Support Group where she learned many practical tips and learned about others people’s experiences with ataxia.
I hope my story is as impressive as some of the ones I’ve read on this blog. I love those “can do” attitudes. The thing I struggle with the most is the “you can’t “ Accepting help is not easy but it’s also tough getting people to understand my problems are physical and not cognitive.
I graduated college in my 20’s from Hospitality Management. I got my first job working in housekeeping at a hotel here in Windsor. It was normal that everyone in housekeeping loses weight when they first start, it is a physically demanding job. People said to me that it seemed to be more than just weight in my case, it seemed like muscle. That started me on a long list of visits to different doctors and therapists. I started with my family doctor he sent me to a speech therapist who examined me and said he wouldn’t help until I saw a neurologist. That neurologist did some tests including an MRI and sent me to a specialist in another city. This specialist diagnosed me with ataxia and explained that there are many different types and tests to try and identify the type I had. Remember, this is 20 years ago and the tests probably aren’t as advanced as today. My specialist was never able to come to any definite conclusion as to what type of ataxia I have but she did seem to think it was hereditary. I was in my 20’s and all this took a couple of years while I was starting my career and got engaged. I gave up trying to find my type of ataxia. I was the way I was. I had never walked the same as everyone else and I never stood straight and I was in speech therapy since I was in grade school and coordination was never my thing. I went back to therapy and waddled on with my life.
One day, we traveled to my friend’s wedding and I was doing a reading at the mass. The night of the rehearsal I fell partway down the stairs in front of the church and split my forehead open and twisted my ankle pretty good. After that, I’ve had a few falls and close calls but never as bad as that.
I continued my housekeeping work for 10 years. I had a few different positions but always in the same department. Physical work like this was taking its toll on me. I literally did nothing but eat, sleep and work. I was exhausted and very thin. My husband and I moved to Alberta, he had a job and I went on disability. Volunteering saved me. I got to meet people and got to be useful. Not working isn’t as easy as it sounds. People needed me again and it was a more relaxed schedule.
Unfortunately, after 6 years I found myself divorced. With the help of friends, I learned to love my life. I found an apartment with no stairs and started living a quiet flat life. I did aquacise for exercise. Aquacise is great because in the water balance isn’t a problem so you can concentrate on the exercise. I have been knitting since grade school. It is a fun way of expressing myself and it gives me a huge sense of accomplishment.
Today, I have moved back to Ontario to be with my family. I am continuing with the aquacise, the volunteering, and especially the knitting. I do not have any issues using my hands, so knitting is a very big part of what I do.
My ataxia life is a little more vibrant these days. I attended the 2021 Virtual National Ataxia Foundation Conference and I had a great time. I got to connect with other ataxians and hear their stories. I was encouraged to go for more testing because they are more advanced now than they were those many years ago. This is where I got invited to be part of the Global Support Group. I have learned many practical tips on living with Ataxia. I love hearing all the inspiring stories of how others handle their own struggles. I often wear my ataxia t-shirt to my physiotherapy clinic. I need a t-shirt and that one seems appropriate. It often encourages questions about “What is it?” That might seem like a simple thing to do but that will get the word out one person at a time. Every little bit counts!
Keep on keeping on!!
I think we can all agree that Stepahnie Hale’s story is certainly inspiring! Hopefully, we will keep seeing you during the Global Support Meetings.
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