Meredith Shafer and her mom are both diagnosed with Ataxia. When Meredith was still in college, she met her husband who has been there for her through thick and thin. Her biggest wish is that all people would treat each other kindly and equally.
My name is Meredith Shafer. I feel inspired to share my story of dealing with Ataxia, a rare neurological disorder that is progressive over time. During my first year at Villa Maria College in Buffalo, my mom’s Ataxia started to progress. I knew it would be best for me to move back home to help care for her. So I transferred to Alfred State College. In my heart, I knew I was making the right choice. Ultimately, I did, because I never would have met my husband.
One day, at the Alfred State library, a guy named Jarrod Shafer caught my attention. He stood out to me because of his Hibernians shirt, so I knew I had to meet him. I will always remember my first impression of Jarrod. He was a true gentleman, the nicest guy I had ever met. It was refreshing, considering I had always been drawn to guys who, in retrospect, disregarded my feelings and worth. All of that changed after meeting Jarrod. He proved to me how much he truly cared about me, and I had never been treated that way before. So, naturally, I was confused when we first started dating. It took me a few months to understand the depth of our connection, that he was the one. I truly believed that God was looking out for me. I didn’t think guys like Jarrod existed anymore, so I consider myself blessed.
As things started to get worse with my mother’s health, Jarrod continued to stick through it all, even knowing that chances are I would end up the same way. As my mother and I developed a strong bond, stronger than we ever had before, Jarrod also proved his love for me time and time again.
At this time in my life, I was going through many overwhelming changes. The thought of me developing Ataxia had never crossed my mind. Yet, one day, I went to see my primary care doctor. They noticed a difference in my gait and scheduled me for an MRI. After receiving the results of my MRI, we knew it would be best to find a specialist. This was before the Ataxia clinic had opened in Rochester. So I went to the National Institute of Health, where my mom was already a patient. The results were devastating. My world came crashing down before me. I didn’t know what to do.
I never thought I would develop this life-changing condition. I was always so active growing up, playing just about every sport you can think of. My favorite hobby was rollerblading. I also enjoyed taking dance lessons – tap, jazz, and Irish. I always wanted to do ballet, but having two left feet made it out of the question. I was a cheerleader for JV and Varsity football and basketball. I especially enjoyed the football games. I had so much pride, which was definitely apparent, even if I was not the best.
I always felt out of place and never knew why. I was bullied most of my life and often felt like a loner. I wished that I could be like the cool kids. Even though there were times I didn’t feel accepted by my peers, I knew my family was always there for me. Family means everything to me. I consider myself blessed with the best family. We are always there for each other in times of need. I always enjoy our family get-togethers.
After my mom’s passing, I believe wholeheartedly that suffering brings families closer together. She was the glue that kept our family so close-knit. My mom is my biggest inspiration. She truly embodied the saying, “Find the blessings in your struggle,” and I try to live by her example every day.
My only wish, besides a cure for Ataxia, is for everyone to put their differences aside, to respect and love one another. I may only be one person, but sometimes that’s all it takes to change the world. If only people could look at the bigger picture in life and realize that life is all about loving each other. I believe that all people should be treated equally regardless of their race, gender, ethnicity, or disability. The rights of people with disabilities are often overlooked.
I was always taught to help others, especially those who need it most. There is no better feeling when know you are making a difference in others’ lives affected with Ataxia. Just recently, a woman had approached me from Rochester. She told me she was just recently diagnosed with Ataxia. She remembered my news segment and found comfort in knowing that there is a support group. She didn’t feel as isolated. When you have a chance to make a difference in someone’s life, do it; the world needs more of that.
I would like to give a special thanks to the LAOH, AOH, and, of course, the RAF. You all are my biggest support group. I am filled with gratitude for all the love and support you have given me and my family throughout our journey. There is no better comfort in knowing you are supported during frustrating and difficult times. Your support gives me a sense of comfort, reassurance, and hope for what is to come. A quote that also gives me hope is “Don’t cry because it’s over, smile because it happened.”
Finally, I would like to thank my mom, who gives me the strength and courage to advocate for myself and others. I love you, mom. I’ll do all I can to make you proud.
Thank you for sharing your story Meredith Shafer! We’re glad that you have such a supportive family.
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