Meet Greta

When I first learned of my diagnosis of Friedreich’s Ataxia (FA), I was a 22 year-old college student. I was told that I’d lose the ability to walk and require a wheelchair in a few years. For someone who is still walking and living a normal life, this reality was difficult to imagine. 

I had been saying “I should probably get a power wheelchair” for at least a year. It was something that was always in the back of my mind, looming over me. I knew it would make a lot of aspects of my life easier, but I also knew it would present a whole lot of new challenges, too. At least when I’m using my walker, I can lift it up and navigate over steps and curbs. A wheelchair is a different ball game when it comes to accessibility. There’s a level of independence that is lost when transitioning from a walking mobility aid to a wheelchair. I have used a manual wheelchair occasionally, but always felt frustrated at needing someone else to push me around. This fear of losing independence is what prevented me from starting the process of getting my own motorized chair for so long.

Around March of this year, I finally started doing research about power wheelchairs. I asked my FA friends what type of chair they use and read tons of product reviews online. Every time I researched power chairs, I would start to cry. I felt like FA was winning. I knew there would be a day where I’d need a wheelchair ever since my diagnosis, but coming to terms with that day finally happening was a tough pill to swallow. I spent a lot of nights doing research after work, having to stop and do something else to cheer myself up. I had made lots of plans for the summer, and the thought of exhausting myself by using my walker was just not an option at this point. I had things to do and places to be!

By the end of April, I made up my mind on the chair I wanted to get. I chose it because it’s fairly lightweight (40ish pounds), has a sleek design, and folds easily for travel. Once I finally placed the order for the chair, I immediately became excited for it to arrive, instead of feeling despair and grief like I had been previously.

When the chair, which I’ve named Greta, was delivered, my fiance unpackaged it and got it set up for me. We went on a stroll together around our neighborhood, and Koner walked beside me as I sat in the chair, using the joystick to move. He and I were able to hold hands for the first time while walking. I cried again, but with tears of joy this time.

A few days later, I celebrated my birthday with friends, and I brought Greta with me. We went to an orchard and explored their tulip fields, something I wouldn’t have been able to do without Greta. Later that day, we all went on a walk on a bike path near my friend’s house. I reminisced about going on walks on the same path back in 2020, before I used any mobility aids. I felt so many emotions during that stroll with my friends, because I kept thinking about how much has changed in five short years. Back then, I could walk, but I struggled. I was single at the time, and feared I wouldn’t find a partner because of FA. But there I was, five years later, using a power chair with several of my closest friends and my wonderful fiance. I felt an overwhelming wave of grief, pride, joy, and despair on that day.

It’s been almost two months since I got Greta. I still use my walker, Frida, at home and for short distances. I’m really grateful to have the ability to walk still, but I can’t explain how freeing it feels to use Greta to get around. 

I attended my first FA fundraising event in Oklahoma City recently, and I was even invited to speak on a Living with FA panel! I met so many fellow FAers at the event, and I felt so validated by others dealing with the same adversities. It’s so important to be reminded that I’m not alone in this journey, even though it can feel isolating at times.

I would say I’ve finally accepted that I am a part-time wheelchair user, and I am less afraid of the idea of being a full-time wheelchair user in the future. I know that I will always find ways to adapt and to Keep Moving.

I am beyond excited for all the fun plans I have for the rest of this summer. Each day, I take breaks from designing to go for a stroll with Greta around my neighborhood, eating lunch and getting some sunlight. I can water my rose bushes using Greta to carry a watering can across my yard, something I would not have been able to do previously. It’s all been really lovely and liberating.

I’ve learned that by letting things go, like the ideas of who we’re supposed to be or what our life is supposed to look like, we open ourselves up to endless new possibilities.