Move With the World, Not Against It
My name is Erin Pieper, I'm 30 years old, and I was diagnosed with FA in January of 2010. It’s crazy to think it’s been over 8 years since I took on that diagnosis; it really doesn’t feel that long at all. A lot has happened since then, the most significant being the birth of my child.
When I was diagnosed with FA, I went through the denial stage at first; not uttering the words “Friedreich’s Ataxia” meant I didn’t have it. All I had to do was be careful with each step and I could hide it, but not as easy as I thought. I had already showed ‘clumsy’ signs in the past, so some people knew something didn’t seem right. After a few months of still processing this diagnosis, I grew the courage to start opening up about it to some friends and family.
I will say, the longer you hold on to denial, anger, and the “woe is me” attitude, the longer you will be stuck and feel lonely. It’s normal to feel that way for a period of time, it’s part of the whole grieving process, but you eventually need to find a way to accept it so that you may have joy & peace in your life. When you surrender, you will feel an enormous weight lifted off of your shoulders. This I can say with 100% certainty.
Once I started talking about FA and showing others how it affects me, I noticed that I had gained the emotional strength to embrace what I still could accomplish. I didn’t shy away from FA, and the people around me wouldn’t have to tiptoe around the words “Friedreich’s Ataxia.” Before I knew it, FA became a new “normal” - acceptance.
However, with FA acceptance comes time and time again. Once you come to terms with where you are at that given moment, you progress. Going from walking independently to walking with a walker to using a wheelchair were big changes to make in a 7 year period. ‘Hopping in the shower’ or ‘running an errand’ or doing something ‘real quick’ was no more. FA has visibly marched on since my diagnosis. Some things I don’t even do anymore, while some have become much harder. I know it’s going to happen, but I don’t have to like it. I’ll get upset, and then I’ll move on, because I sure as hell know things won’t get done if I sit around and mope.
Even though my body isn’t the nicest to me, I’ve found ways to make do. It’s amazing how many adaptations and resources there are if you look and ask and listen. I’ve been blessed with a customized wheelchair that folds up like a glove in my handy dandy chair topper on the roof of my car. It looks like a big luggage carrier. I can get into and out of my car with no other help needed. I’ve got some sweet hand controls to drive my car. Took some adjusting, but I got it down.
I live in the lower level of a split-level house, so stairs are a must. I got a chair lift installed that brings me up and down. My bathroom has been remodeled to be handicap friendly - roll in shower, shower chair, grab bars, etc. Lastly, I got a deck lift installed. My son and I call it the “elevator” because I wheel in it and, with a press of a button, I go up or down. I am forever grateful for the organization Vocational Rehab; because of them I am able to live more independently and continue to work.
I’m also very blessed to have family and friends who’ve put together two fundraisers for yours truly. The funds raised have allowed and will continue to allow me to be a part of FA events near and far, help with expenses with regards to trials that may not reimburse and other roadblocks that I will come to in my future with FA. I do need to stop and smell the roses more, because I am very blessed. The biggest blessing of all is my healthy and kind-hearted son. We all have baggage, it just matters how you carry it. And we must have hope. You always gotta have hope; there will be a treatment eventually.
