From Sarah in her own words…

Growing up I would trip over my feet, but it wasn’t enough to make alarms go off in our minds. Playing badminton and not being able to get to the birdie in time didn’t make alarms go off in our minds. It wasn’t until my parents and I were at a college tour going up stairs that my mom saw how I couldn’t go up the steps without holding on to the railing that something was up. I hid this situation from my parents without realizing I hid it from them. I went to a rheumatologist and they wanted to do a biopsy. Insurance didn’t want to cover it. I decided that once I get a good teaching job that I would use their insurance and figure out what is going on. I was 21. That didn’t happen until I was 28.

Fast forward to the age 28, I started teaching and decided that it is time to see what is going on. I was so ready to have answers. I met with a neurologist and they had me do a genetic test and the results came back saying I have Limb Girdle Muscular Dystrophy (MD). A small part of me thought it would be MD because my family has history of it. A big part of me hoped I didn’t have it. It is not very common for females to have MD. For me, it is a very slow progression. I am not in a wheelchair and I hope am not for a very long time. I do walk with a cane or assistance from others in unknown places. With my diagnosis I had many emotions. I was happy to finally have answers. I was angry for what I had to carry with me for the rest of my life. Later, I was just determined. Determined to not let this define my life. Determined to show the world that I can do it.

Yes, I am an independent person in a dependent but that wasn’t going to stop me. I had to learn, with the help of others, that asking for help isn’t a weakness. It took me years to finally make that connection. My family, friends and colleagues have helped me see that more people are willing to help rather than not. My family has been with me through thick and thin. They are the reason I can be as independent as I can be. With my colleagues, every time someone new starts at work then I let them know about my disability. Every time a new term starts I let my students know about my disability. I want them to be aware so it doesn’t completely shock them if I fall down. I want them to see that I am just another human being going through things like they are. I have fallen down many times over the years.

What is a poignant moment for you? The one that stands out the most is when I was teaching. My colleague and I were coming back from lunch when I tripped and fell down. It was right in the middle of the student lounge. Some students knew about my disability and others didn’t. The ones that knew came over and asked what I needed. The others came up but had shocked faces. They went to get some staff members. When I fall I start to tremble because of all the adrenaline going through me. I need to calm down before anyone can help me get back up. Students and staff sat with me on the floor while others stood around me. It felt safe. We were like that for 5 minutes talking about everything and nothing. Once I was calm two staff members came on either side of me and helped me up. That day gave me hope for humanity.

How do you find courage? I believe that I live with courage, resilience, and/or perseverance every day. I have to find the courage to stand in front of my students and teach and guide them to be whatever they want to be. I am resilient because even though, more than not, when things get tough I still show up. I know perseverance because I will myself to get up, despite the limitations, and show that someone with MD can have a job they love and do the things they love by never giving up. I believe that if I can do it then others can do it as well. I hope that my story will inspire others to see that their dreams are possible as well.

What is a dream you have? My biggest dream is to go to my ancestors’ country. They came from Switzerland. We have this huge book filled with names of my family. It talks about where my ancestors came from before taking the journey to America. It has places they visited in the home country and where most of them are buried that didn’t take the journey. It would be extremely amazing being able to walk where they walked! Being able to have accommodations so I can travel is extensive! Finding an airplane seat so I can get out of it to finding a place that is one level to finding a place that has a high enough toilet so I can use it. Switzerland here I come!

More About The River & The Rock Perseverance Award

The award is a gift from the Nicholoff Family that experienced first-hand the importance of a positive attitude, determination, and perseverance while fighting muscular dystrophy.

Read about PJ Nicholoff who is saving many lives

Learn more about the award application process