In November of 2007, when I was 24, I went into the hospital for the first time with a bad case of pneumonia. It was one of the biggest (if not THE biggest) wake up call I’d ever had. I hadn’t thought about how much that first hospitalization affected me until I did the interview with my parents for my last blog post. The truth is for the few years leading up to that hospitalization I had done a pretty awful job taking care of myself. I had just graduated from college but wasn’t really “doing” anything with my life. I was living in Burlington and working at a job that didn’t involve a lot of effort or interest on my part. My only form of transportation (besides my bicycle) was a VW Golf that sat in my driveway, needing a new transmission that I couldn’t afford. I had recently met Brian Callanan and learned about CFLF and was slowly starting to get involved, but I still didn’t really understand my relationship with CF. It was a disease I had that I mostly ignored and hardly ever talked to anyone about. Brian was really the first person I ever met with CF, and the first person I knew who embraced having CF, rather than hiding from it.
I look back on it now and I realize I didn’t have a lot going for me, and I didn’t really care. I just wanted to “live” and not worry about what came next, I didn’t care about the bigger picture. I was busy non-stop, always running from one thing to the next, staying out late, and rarely, or ever, doing any kind of CF upkeep. In my mind, I was living life to its fullest, and not letting CF get in my way or letting a second go by that wasn’t jam packed with action. I viewed doing treatments and taking medications as things that would only slow me down and get in the way of me doing the things I really wanted to do. It was also around this same time I found out that I had CF related diabetes, which I will say was one of the few things I tried to manage well, and I think that’s only because I have an irrational, yet intense fear of losing a limb, and/or going blind (which is a story for another day). I had also stopped exercising because I told myself I didn’t have time. It’s really the only time in my life when I wasn't getting some form of regular exercise.
Around this same time my brother and his wife were expecting twins, who would be my first niece and nephew. This, I remember being over the top excited about. There was a love building inside me that I had never felt before, especially not for two people I’d never met. The night I found out I literally told every person that I talked to that I was going to be an Aunt.
And then I got sick. It started with a cold that lasted for a few months that I blatantly ignored. It was starting to get cold out and I was feeling sicker and weaker as Fall turned to Winter. I felt the sickness slowly take over my body, but I didn’t listen to it, or let it slow me down.
It was only a few weeks later that I was out with friends and feeling pretty awful. I kept coughing but it felt different, deeper and more rattley, like an echoey gurgle in my lungs. I went outside and it was the first big snow of the year and everything was getting covered in a thick blanket of white. I was under a streetlight watching the snow come down when I started coughing, hard, and doubled over in time to see bright red blood. It was such a shocking sight to me because I’d never had this happen before, and to have it illuminated so intensely by the snow and the glow from the streetlight, made it all the more terrifying. My then boyfriend found me and took me home. I called Brian the next morning and asked him about it, he told me I should let our doctor know. So I did, and within a few days I was in the hospital for the first time.
I honestly don’t remember a lot of the details from that first hospital stay other than the fact that it took every last ounce of energy in me to get to the hospital, walk into my room, and crawl into bed before I finally collapsed and really let myself be as sick as I was. For the first few days I was in and out of sleep. I didn’t get a PICC line right away and I was only vaguely aware of the needles that kept poking me as I slept. I hadn’t had anyone do chest PT on me in almost ten years and for the first few days I was almost in tears from the pain as they pounded my achy skin. Because I had never been in the hospital or felt so sick, I honestly thought I might be dying. But a few days passed and I started to come around, and then a week went by and I was walking around, and eating again, and wanting to go home.
My room was on the seventh floor in the corner of the hospital and my window looked out over Burlington, and Lake Champlain, and the mountains beyond it. I spent so much of my time just staring out that window, examining my life from afar. My relationship was falling apart, I was realizing just how unhappy I was with my job, and suddenly it all seemed to matter to me. A lot. It was like a magnifying glass was being placed over my life and I was seeing for the first time what was important and what wasn't. This was not the life I wanted. I didn’t want to run from CF anymore, it was time I turned and faced it. And so I did.
I look back on it now and I don’t quite know how I survived for so long without realizing all this, except that I was lucky, and maybe I had to venture down a certain path in order to see where I really wanted to go.
In the next few years my life would slowly continue to shift. It wasn’t all of a sudden like I would’ve liked, like most things, it took time. I had spent 24 years trying to unlearn what I knew about CF, and it would take even more time to reverse that. Eventually, I would leave my job and start working for CFLF part-time, while also watching the twins a few days a week. I would start exercising again, and being completely compliant with my CF treatments. I would sell my broken car and buy a new one, I would leave Burlington and eventually live closer to my family where I could watch my (one day) five nieces and nephews, and my godson, grow up. Sometimes all it takes is something so small to realize just how big life can be. And sometimes it takes something huge like looking at your life from a distance while you're in a hospital bed to realize just how important the small things are.
It took me a long time to really understand what it means to live a full life. For so long I had thought that it was an either/or when it came to living with CF. These days I’m happy and healthy, and my life feels more full than it’s ever been. The difference now is that the fullness doesn’t come from how many things I can fit into one day, but how those days fill in the bigger picture.
Erin Evans is the program coordinator for the Cystic Fibrosis Lifestyle Foundation. She is 31-years old and lives in Central Vermont in an old school house. She has an incredible boyfriend, and a ridiculously smart dog. Sometimes she still stays out late, and has days when she's running, non-stop, from one thing to the next. You can contact her at erin@cflf.org
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