When I can’t remember how many times I’ve been in the hospital I count the scars on the insides of my arms. They’re almost like a map and with each one I can remember vividly the PICC line being placed. Which, in a lot of ways, makes me lucky because so many people with CF can no longer count the scars on their arms, or count on two hands the number of times they’ve been admitted into the hospital, because there have been too many.  There are two scars that are darker than the rest because they’re the most recent. In May and June I spent almost four weeks in the hospital on IV medications from pneumonia.

I’ve always had a hard time asking for, or accepting help, and when you’re in the hospital that’s all it is: People trying to help you. Needless to say, being in the hospital is incredibly hard for this exact reason. I’ve had people say to me that it sounds nice to be able to just go away for a few weeks and rest and have people take care of you. And maybe it is for some people, but not when you’re doing it as often as a lot of people with CF are. It starts to feel more like a test of your patience. There are a lot of aspects of living with CF that can often feel like a lesson in how to be patient. Waiting for appointments to start, waiting for test results, waiting in line to get prescriptions, waiting to hear back from your doctor if you need to be admitted into the hospital, waiting to see what your blood sugar is, waiting for your treatments to be over. I could go on.

There are some things I’ve learned to let go of while in the hospital. Like the food never coming at the right time, or having someone always asking for a “finger stick” (AKA checking your blood sugar), and as much as you think you’ll get a lot of reading done, you never do. There is a constant parade of people coming in and out, always asking you for something or asking if you need anything. You get used to it though, and learn to accept that the situation is what it is and that you have to just let it go. However, one thing I’m not willing to compromise on is using a wheelchair.

All hospitals have different rules and protocols that they need to follow, which I understand. And from talking to other people with CF, I know that the hospital I go to is more lenient than a lot of the others. I’m allowed to have as many visitors as I want and at pretty much anytime, I’m encouraged to get up and walk around, I can even go for walks outside (as long as I stay on hospital grounds), I’m allowed to eat (for free) at any of the cafeterias/cafes in the hospital, and they’ve always been accommodating and welcoming of my boyfriend who stays with me every night that I’m there. A few years ago my best friend even spent the night in the hospital with me and we ate popcorn, and played cards, and watched bad TV together. So I know I have it good in a lot of ways, which I’m so grateful for. But when it comes to the wheelchair there is always a struggle.

When I’m in the hospital there are times when I need to have tests done, like x-rays, lung function tests, blood work, etc. And every time, about five or ten minutes before the appointment, someone shows up with a wheelchair and a clipboard and tells me they’re going to bring me to my appointment. And then the debate begins. I tell them I am perfectly fine to walk and they point to something on their clipboard that says they have to bring me in a wheelchair. Then we go back and forth until they go and speak with a nurse or their supervisor and they get the okay to let me walk on my own. However, they end up having to walk next to me to the appointment with the empty wheelchair, which just adds to the awkwardness of the situation. It seems to me that people with (or without) CF, who are physically able to walk, should be encouraged to do so. I have seen (and experienced) firsthand the incredible benefits that exercise provides for people with CF. This is exactly why the CFLF exists; to encourage people to get as much exercise as possible. It’s also known that laying in bed or being inactive for days at a time is not good for anybody’s health, physically or mentally.  Then why am I being told I have to ride in a wheelchair?

I remember a few times as a kid when, for whatever reason, I had access to a wheelchair and wheeled myself or got wheeled around, for fun. Which it was. But I didn’t think then about how un-fun it was when you didn’t have the choice of getting up and walking away. It’s a whole other story when it’s something you have to do, when it’s your life, and you aren’t given the choice of how you get from place to place. It’s not the notion of sitting in a wheelchair and being pushed by someone that is hard for me exactly, it’s that people are telling me I can’t do something, when I know I can. There are things in life that I already can’t do, like skipping treatments, or stopping taking my pills, or going a whole day without coughing, but walking isn’t one of them. And for now I want to hold onto that small privilege.

I know there may come a time when I don’t refuse the wheelchair because I know I need it, or because I just don’t have the energy to refuse it. There may even come a time when I’ll ask for one. But right now is not that time, so I’m going to continue to walk even if that means fighting it every time. Because at least I still can.

 

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Erin Evans is 31 years old and lives in Vermont. She was diagnosed with Cystic Fibrosis around the age of 1. She has worked with the Cystic Fibrosis Lifestyle Foundation for 7 years as the program coordinator. You can contact her at erin@cflf.org