New Year, New Beginnings

An approaching new year means multiple things to different people. A new year can mean starting over or aspiring to new goals or resolutions. It is an appropriate time to be happy and to seek a fresh start to be the best version of yourself.

Regarding life with Friedreich’s ataxia, 2018 was a breakthrough year for me. The biggest transition was using a medical assistance device, my rollator.

This was both an emotional and physical challenge for me to overcome. Emotionally, it was hard to accept that my Friedreich’s ataxia continues to progress slowly. Physically, I did not want people’s perception of me to change. It turns out that undertaking this transition was well worth it. (I have my husband, Justin, to thank for encouraging me!) It puts my emotions, and those of loved ones, at ease to know I am safe when walking. It also helps tremendously in battling fatigue. Anyone who understands, or tries to understand, looks past the use of my rollator and sees only me.

With 2019 here, I feel confident that I can continue to achieve other goals related to this disease, thanks to my transition from walking freely to walking with a rollator.

In this spirit, following are my three New Year’s resolutions:

1. Accept help when needed. I will not dwell on the fact that various tasks I once was able to do now may be difficult on my own. I am a huge culprit of this and tend to be a stubborn person. I like to do things on my own because it creates a sense of accomplishment. This is because I know that it takes me twice the effort and time to do them.

However, I recently noticed that things have been getting harder for me. It’s important not to become frustrated and worked up. Since Justin and I got married and started living together a few months ago, he has been wonderful in assisting me whenever I need help — even when I don’t ask. It took a lot for me to “sit back” and accept help when offered because I felt useless. But I know it is out of love and to make my life easier.

This resolution also can be put into practice outside the personal life and home. Now, when I am in public and someone sees me with my rollator, they are more willing to help if they see me struggling. I used to be embarrassed and feel helpless in front of strangers, but now I accept their help, because a kind and generous person is taking time out of their day to help me. I am very grateful for that!

2. Know the disease is in control, not me. Friedreich’s ataxia is a forceful disease that gains full control over bodily functions, both internally and externally. It’s important to note that we patients are not doing anything wrong and to allow these changes without fighting back. We were given this disease for a reason: because we are strong enough to handle it. I have been living with FA clinically for almost eight years, and I know what could happen in the future (becoming wheelchair-bound, for example). I am OK with that. Everything happens for a reason, and I know God walks with me and has a special plan for me.

3. Continue to be active in the FA community. The FA community is truly something special. Belonging to a national and international network of individuals and families is truly remarkable. When introduced to a FAmily in Rhode Island seven years ago, we instantly clicked and have remained close ever since. That is what the FA community does. No matter where you are located, you know that someone is a phone call or message away.

Since diagnosis, I have been actively involved. I have been an FA Ambassador, our family hosts a 5K fundraising event annually, we participate in other FA-related events, and I write a weekly column for this website. I want to continue my efforts to do these things because I hope to be a positive voice and a point of contact for anyone living with the disease, as well as family members who reach out for guidance or emotional support.

I understand that everyone who lives with Friedreich’s ataxia is affected differently and experiences various challenges, obstacles, and transitions, both emotionally and physically. However, I hope these three aspirations shed some light and inspire you to incorporate them into your daily lives as well!

Cheers to 2019 and a new year filled with good health and happiness!

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