University of Cincinnati student Sara Whitestone has myalgic encephalomyelitis. The neurological disease has an 11-syllable name so cumbersome Whitestone felt compelled to both spell it and sound it out during a recent interview before explaining what it is and how it has affected her.
She has lived with the effects of what she calls ME since 2010 while she was still in high school. Yet, she remained determined to apply and, if accepted, enroll at UC — even while bedridden and without any real sense of how she would navigate its famously hilly and cobblestone-strewn campus.
Three years later, she is a UC biological sciences student on a mission “to chase down a cure for her disease.”
She is simultaneously climbing hills (in her motorized wheelchair), attending classes and raising awareness and money for students with disabilities who also want to experience university life to the fullest.
Screenshot from ‘UC Magazine’ interview with Sara Whitestone.
In a recent Q&A, Whitestone graciously shared a bit about her personal journey, her transition to college and her work with her namesake organization Sara Spins. The org’s motto: “Where there’s a wheel, there’s a way!”
Q: What was your experience like in high school with the onset of ME?
A: In 2010, I got sick. It started off as just a headache and a stomachache. By that Christmastime, I was hospitalized because I was so ill. At that time, we had no idea what was going on. … It wasn’t for months until we figured it out.
I actually developed a condition, a disease known as Myalgic Encephalomyelitis (ME). Basically, it is an inflammation of the brain and spinal cord. It causes central nervous system damage and pretty severe cardiovascular abnormalities. It’s an umbrella disease that wreaks havoc on every system in my body.
I was essentially bedridden [the last two years of high school]. Thankfully, my high school helped me graduate on time with all my credits. I actually tried to go back my senior year, but instead of going to school five days a week I tried going to a community college nearby to do high school and college credit. That way I only had to go three days a week.
Unfortunately, I was really pushing it too much at that time. I didn’t really have a grasp of my disability and my condition and I actually ended up hurting myself and causing some nerve damage. It really led to me becoming dependent on a wheelchair.
Q: Do doctors know why you contracted ME?
A: Unfortunately, they don’t really know. There’s not a definite cause. There’s not a definite treatment. There’s not a definite cure for sure. A lot of doctors in the U.S. don’t even recognize it as a real illness.
[There are] some different theories as to why it’s caused. Part of it is genetics and then part of it is they find the onset of a virus after. Sometimes you’re post-Epstein Barr virus. It’s very similar to all other autoimmune diseases like Lupus, arthritis, and even MS. These are all conditions that at one point they thought I had.
It’s really hard to tell why this has happened. But we see it in a lot more people than you think and a lot of the time it’s because people are under high stress. They’re doing a lot of activities. But that’s kind of the norm today. You expect very successful 15-year-olds to have a full schedule, and I did before I got sick. I wasn’t doing anything bad, no partying, drugs or anything. I was a long-distance runner before I got sick. I thought I was very healthy. It definitely came as a shock.
Q: You have mentioned publicly that while it would have been easier on you physically to attend a school with a relatively flat campus like Wright State University, you were determined to attend the hillier UC. Why?
A: I wanted to go to UC for a long time, even before I got sick. I was just so attracted to the university for its history and its opportunities. It was a place I knew I would be challenged and a place I knew I could explore everything I wanted to — especially with my major. So there honestly wasn’t another option in my mind. But of course you could imagine my parents’ minds. It wasn’t the smartest thing to do. But I’m glad I did it. It was the biggest risk I ever took, but I’m so happy. I can’t imagine being anywhere else.
Q: How did the transition to UC go? Were there adjustments you or the school needed to make?
A: Absolutely. Just to give you an idea, the applications are due your senior year of high school. So my senior year, when I turned in my application for UC, I was still completely bedridden. I had no idea what to expect with my health. All I knew is that I finally learned my lesson the hard way of what I could and couldn’t handle. I knew I wanted to work my butt off to graduate on time and get to college as a freshman that fall.
I think the first time I was ever on campus, by myself, in my wheelchair, I just remember feeling so lost. I felt completely helpless. First of all, I parked in the wrong parking garage, which made me lost in my wheelchair. It wasn’t until I got to the Disability Services Office that I felt I was at home. As soon as I got to the office, they said, ‘You can do this. We’re going to make this happen for you.’
Disability Services really took me under their wing and really made sure everything was the way it needed to be. They do that for every student. They put the students first. Housing worked with me. Food worked with me. Even my professors have been so flexible with accommodating to my needs.
Before I even got to campus, President [Santa J.] Ono — who was provost at the time — found out from UC Magazine and Twitter about Sara Spins. He thought it was a great cause and wanted to help and from the university made a donation to Sara Spins so I was able to get my wheelchair on time. President Ono has really been so receptive of us and eager and willing to work on any big ideas we have.
I don’t know how familiar you are with the university’s campus, but there are these cobblestones kind of all over. They’re very hard on the wheelchairs. And you’ll see women all the time wear flip-flops across campus because they can’t wear their heels and have to carry them in their hands. The cobblestones are just that bad. So the university has said we want to change this. We want to make it easier … and [UC officials are asking] what can we do to accommodate those with disabilities and make it better, more inclusive, and more equal.
Q: What is Sara Spins?
A: We are an organization dedicated to raising awareness and the necessary funds for students with disabilities to provide the technology and tools to pursue their higher education. Many individuals with disabilities, on top of medical bills, you add the college bills and then ‘Oh shoot I need a new piece of technology to be able to do this.’ This is really where we’re able to step in. With the generosity and support of so many people and so many volunteers we’re able to buy very expensive technology for different students, which is very exciting.
[Currently] we’re helping our third beneficiary student. Her name is Taylor. She was paralyzed at age 11. She’s a quadriplegic, but she’s been getting stronger and regaining some motion and she needs a new wheelchair. On top of the medical expenses and everything else there’s no way her family can afford to buy her a new wheelchair.
We’re trying to help her regain her independence. I know she’s really excited to be getting to college. Even though she’s also paralyzed and has suffered a lot through her paralysis with different health issues she is also graduating on time and attending college in the fall. I really admire her drive, sprit, and determination.
Q: How have you maintained your own drive and optimism throughout such an arduous journey?
A: It’s hard. It’s something I have to decide for myself every single day. I think what keeps me going is when other people are believing in me and believing in others and empowering each other. I think it’s a powerful thing to see other students stepping up. I remember there were so many days at school I would just wake up exhausted.
I’m still struggling with my illness. It’s progressive, so it’s actually getting worse, which is a very hard thing to deal with mentally. But waking up every day, my inspiration has been knowing I have so many other people wanting to help people like me. Having the friends I do and the family I do and the support I do, and even at a giant college, there is that Bearcat nation family. That support, that love, that hope is what got me through this and continues to.
This has taught me more than I ever would have learned on my own. The world’s not flat. The world’s not handicap accessible. And I joke about that. But it’s true. It’s not. But for me, it’s not a bad thing. It’s an exciting thing. And I want others to have that same opportunity. I don’t want anyone to be stopped by something they can’t control.
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