Name: Kristina Hiller
Age: 43
Occupation: Freelance Writer
My name is Kristina Hiller, I’m forty years old, and when I was born I was diagnosed with osteogenesis imperfecta [Type 2 & Type 3]. It’s a genetic disorder characterized by a lack of collagen in bone and connective tissue. I bought a new bag recently from the internet, and I bring it with me any time I leave the house. It contains a bunch of necessary items and other things I need to do throughout my day. After all, you never know what you’ll need when you’re out and about. I just want people to know that those of us with osteogenesis imperfecta may be fragile physically, but are strong and resilient people. Just because we are usually in wheelchairs doesn’t mean we don’t have an active life, or can’t enjoy the same things more ‘able-bodied’ people can. We might approach things in life differently, but at the end of the day, the results are the same.
Various Sanitizers and Wipes
A pack of sanitizers and wipes is absolutely necessary any time I leave the house. My arms aren’t able to straighten, so most of the time sinks are inaccessible from my wheelchair. When I can’t reach the sink, I’ll have to use sanitizer as a backup to clean my hands. I have a stash of Clorox wipes if I have to use gross public restrooms; so I pull this little ziploc bag out and wipe everything down, as thoroughly as possible. A lot of the time, those bathrooms aren’t built to accommodate everyone. That’s what pisses me off so much about the handicap stall. A lot of able-bodied people always use the handicap stall, and completely trash it. It’s absolutely disgusting. There are multiple reasons I can’t use a different stall, like a lack of a handicap bar, the toilet being too low, and my inability to shut the stall door. It makes privacy a real issue.
Oxygen Tanks
I carry around two interchangeable air tanks: one that rests on the back of my chair and another in my bag. The process of refilling and switching the tanks isn’t difficult whatsoever, but I can’t take the tank out of the bag myself because I can’t reach it. So I just need someone to do that for me, but I can refill them afterward myself with a machine in my room. It’s frustrating having to rely on somebody always for that, but I’ve learned from experience that if I try and do it on my own, I’ll get hurt, which then leads to me needing more help, which I didn’t want in the first place. It’s just better to accept that bit of help in the first place, so I stop myself from seriously injuring myself.
A Little Perspective: REAL Stories of Little Ladies
I like keeping a copy of my published work with me; the process of writing it was a lot to go through. I found myself having a hard time thinking of anything, so I tried to stick to my memories. During the process of writing my section, stuff from thirty years ago started coming up that was buried deep down. When you have to remember something like that, it makes you feel like you’re actually there, going through it again. The hardest part of the writing process was reliving that trauma, and I found it very emotional to write because of how scary the things I remembered were. Once I had gotten it out, I felt better, but it’s really incredible what your brain will make you forget.
Featured Image: Kristina Hiller / Photo Credit Jake Stanchfield
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