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Adults with SMA: Kimberly Hill
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Photo courtesy of Kimberly Hill[/caption]Kimberly Hill is a 34 year-old from Oklahoma with SMA Type II. Though her mobility is now limited to her left thumb, she continues to work and pursue her Master’s degree.
SMA News Today caught up with Hill to talk about her story, what technologies she uses to assist her in her daily life and the advancements in treatments for SMA.
Kevin Schaefer: If you could start by sharing your story in regards to SMA. When were you diagnosed, and what was your experience like growing up?
Kimberly Hill: I started showing symptoms at 10 months old and was trached at age 3. I started sleeping on a ventilator at age 6 and went on it full time about 10 years ago, and I can only use my left thumb myself. Because I can only use my left thumb myself, EVERYTHING I do takes a little longer. I can speak, but I am difficult to understand, so I communicate mostly through text on my computer. I am of the age where my parents were told that I would not live past the age of two and there was really no hope for people with SMA then like there is now. I remember clearly laying on the doctor’s table at age 9 and him telling me that by the next year, my lungs would fail me, and I would just quit breathing and die.
Doctors clearly missed that by decades and didn’t know who they were dealing with! I don’t recommend ever telling a 9-year-old that, but after that moment I was determined to prove him and most everyone else wrong. I always had a hopeful and defiant spirit, so I decided to just conquer life one challenge at a time. This has proven to be a pretty good strategy for me. It got me a Bachelor of Arts Degree in political science from Oklahoma State University and I am one thesis short of a Master of Science degree in fire and emergency management from Oklahoma State University.
I was also given the opportunity to serve as the MDA Goodwill Ambassador for the state of Oklahoma and I won the Robert Ross Personal Achievement Award also for the State of Oklahoma. I work part-time from home for the Oklahoma Department of Emergency Management as their Disability Integration Specialist. I am very lucky to have parents that always encouraged and supported whatever crazy idea I wanted to try. I am also lucky to have an incredibly large support network that fully encourage my defiance!
KS: Now, you have multiple degrees and have been in academia for a while. Between undergrad and grad school, what has your college experience been like? What challenges have you faced?
KH: During my undergrad years, I made the hour-long commute from my house to OSU three times a week because it just wasn’t feasible for me to live on campus. I was still able to be fairly active and social by going to sporting events, and I was the head of a committee in Student Government that dealt with smoothing out the sidewalks on campus. I am still working on finishing my thesis for my master’s degree, but I have been able to do everything for my master’s degree online. Learning has never been a challenge to me but getting people to understand that my brain is unaffected is sometimes a challenge.
As always, there were some accessibility challenges with some buildings, taking exams, and giving presentations, but I always made my issues known to the university’s disability service coordinator and my professors and we would find solutions together. Like I said, everything I do takes me longer which is definitely challenging in school, but I am determined to get things done.
KS: You obviously have a lot on your plate. Between school and work, managing caregivers and your social life, what does a typical day of the week look like for you?
KH: My schedule varies daily. For example, this week I have a work conference that I am attending from home via Maverick, my Beam+ robot. I named him Maverick after my favorite movie Top Gun, and because I am a bit of a rebel. My robot is like a bigger FaceTime on wheels. So this week is more eventful than usual.
My day nurse will wake me up and get me ready for the conference and during the conference she will take care of all my medical needs like suctioning, breathing treatments, and medications. We will also work in some range of motion type exercises and I will get in my wheelchair and do my version of eating. I “eat” soups and ice creams and really anything that I can liquify with my blender or juicer. I have difficulty swallowing, so most of it ends up in the suction machine.
We usually watch our “nerd” shows on the Science, Weather, National Geographic, and History Channels while I eat. I control the TV, fan, and lights with my computer. My parents do my care in the evenings and on weekends and we usually watch TV or movies and sometimes we go out to musicals, concerts, museums, the mall, and, of course, OSU football and basketball games. Sometimes we even get lucky and score tickets to an Oklahoma City Thunder game. I also have a night nurse during the week and I am a night owl, so I stay up way too late with her either catching up on work, reading, or watching TV. She gives me my tube feeding overnight and, you know, keeps me alive while I sleep!
KS: It’s certainly an exciting time for the SMA community with Spinraza and other drugs in development. Yet something you’re passionate about as well is disability advocacy. As someone who has spoken at SMA conferences, what’s something you wish people would better understand about people with SMA and people with disabilities in general?
KH: I say this all the time. We are all just people, so treat us as such. I also always say that everyone is disabled in some way, simply meaning that there is something they cannot do, my disability is just more obvious. I know exactly what I cannot do, but with assistive technology and future treatments, the possibilities of what I CAN do are limitless. I hate being called an inspiration just because I am severely physically disabled; however, if I ever do something awesome, then I won’t mind.
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