I know that birthdays can be tough for some patients living with Friedreich’s ataxia. It can be a reminder of how much this disease keeps taking from us each year. I completely understand. It is hard not to get down on the things we still can or can’t do. However, this year, this is not the case for me, and I am trying to remain positive for the FA community and for myself.
I like to reflect and think of what I can still do as another year goes by. I may do things differently than most people these days, but I still feel a sense of accomplishment in what I can do. This year, the biggest change for me is that I underwent a transition from walking freely to using a rollator for long distances, to get to and from work, to conserve energy, and to control my balance and walking. This took me almost a year to be comfortable with.
I’ve gained more freedom emotionally and physically, and I wish I’d accepted the help of a rollator sooner. I’ve always depended on a friendly arm or dealt with my instability and fear of falling and injuring by myself. I overcame the thought of what people may say or think of me using a rollator. I look very young for my age, and I didn’t want to look out of the “normal” by using a medical assistance device. This can be very difficult, especially when living in a major city.
I also feel more at ease and safer (so do my friends and family) when I use the rollator. There have been a few instances when my legs would “stop working,” and I couldn’t feel them to walk in public. So, I decided it was the right time to use some type of assistance, despite my emotional and physical insecurities. I am becoming more confident and stronger despite living with FA.
I am at the point in which I need to use a medical assistance device, but this does not make me lose sight of who I am or my ability to accomplish my goals. It is important to remember the word “ability” is in disability. I try to keep this in my thoughts every morning before my day starts. This helps me set daily and weekly goals and sets myself up for success, allowing myself to be the very best version of me.
Turning 27 was a big year for me. Earlier in the year, I completed grad school and received my master’s degree while working full-time, 40 hours a week. Even when I am tired, I find myself pushing through because I know that I can accomplish anything to which I set my mind. In less than two months, I will be getting married and starting a new chapter and family in my life. I thank my supportive family, fiancé Justin, and friends for being by my side every step of the way.
Today, I am 28 years old. My favorite age is now — getting older. I have been living with Friedreich’s ataxia clinically now for seven years. I am very proud of my accomplishments and my diagnosis to this day. I don’t allow Friedreich’s ataxia to affect my attitude towards getting older. It is just another way of how this disease makes me stronger every day. I would not be who I am without living with FA.
Although there can be many hardships and struggles, I wouldn’t change anything. I have met some of the most remarkable, strongest, and inspirational people that I can call FAmily. Here’s to more years of appreciating the little things and making more lifelong friendships!
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