It’s hard to believe I’ve been out of college for a year longer than I was in. It’s certainly worthy of a personal milestone. I remember talking to a Boston College alum, who also has CF and graduated several years ahead of me, right around when I graduated. She was talking about her 5-year reunion and said something to the effect of how she certainly felt nostalgic for the college days, but mostly she felt nostalgic for how great her health was when she started college.
Our little chat has stuck with me ever since.
Last weekend was my college reunion, and it certainly was great to see some people I haven’t seen since graduating in 2013. Those days almost feel like a lifetime ago.
At BC, our reunion includes staying in the dorms for a weekend, which is probably the best (and maybe worst) part of the whole thing. BC is one of those schools where students live on campus for 3 or 4 years, instead of moving off campus after freshman year. So staying in the dorms really brings us back. On Saturday morning I woke up in my little plastic twin bed, draped in a thin sheet and blanket, with a blistering hangover headache, allergy congestion and could only think, “how the hell did I survive 4 years of this?”
When I got to BC in the fall of 2009 my health was really very good. I had overcome a fight with Mono the summer before and was able to get myself into decent condition heading into college. 9 years later, my life has drastically changed.
It all started my sophomore year when I had a bad bounce and came down with pancreatitis. We’re still not even totally sure why it happened. Our best guess is that it was medication induced. I always say those few days in 2010 were the worst of my life, and the experience really did change my life forever. I ended up having to deal with a flulike virus a few months later and then finally started up my journey with the feeding tube. The g-tube, in many ways, helped prevent total catastrophe. The decline was stabilized, and I was able to get back on my feet.
Fast forward to my Senior Spring and I was back dealing with a number of bad bounces. I began a stretch of doing IV’s every other month to fight back against different cases of pneumonia and terrible infections. It lasted for about a year – through my graduation all the way to when I started working.
Even just thinking about those days makes me cringe. In many ways I was at my emotional breaking point during those first few months after graduation. I wasn’t strong enough to make it to a single graduation party, look for a job or do much else for that matter.
My health has never really been the same since I started college, yet I consider my four years at BC the best four years of my life. I often catch myself stuck in a daze thinking about specific moments from school, some more chill – like the countless nights we’d pal around like any sort of college kids across the country – and some a bit more unique – like when we saran wrapped one of our buddies after he lost a bet, the time we were so unbelievably hungover we watched Joe Dirt twice in a row, or when we dressed one of my roommates up as a FedEx guy and had him make a delivery to another friend in the middle of a lecture.
I suppose I so very much value my time at Boston College because it was when I was totally free and independent. The relative collapse of my health that began in 2010-2011 has since made it nearly impossible to feel that way.
Part of living with cystic fibrosis is learning to accept that it is okay to be dependent on another person. I think dependence is a difficult concept for some people to grasp, especially as we get older. It’s out natural instinct to want to break free. CF hinders that in many ways. Simply put, when I am very, very sick (which happens more than you’d think), I am completely reliant on my support system – starting specifically with my mom and culminating with my care team. After the pure independence I enjoyed during my BC years, I had to learn that my health was conditional on accepting help.
In no small way, I solely dedicated the few years following my graduation to pushing back against the progressive nature of CF.
I know that sounds very different from the cliché “CF doesn’t define my life!” mantra many patients repeat, but it’s the hard truth.
It is very difficult to stop, or even slow, lung health decline in cystic fibrosis.
Fight back against disease progression started with a very difficult conversation… with myself. I had to decide what I valued more… my future after months and years of painstaking hard work or the here and now. I know that I am capable of overcoming anything thrown my way, and that’s pretty much how I decided I wanted to get my life back on track.
The evolution to where I am now has come from three distinct pieces.
- Working WITH my care team and support system on all aspects of care – respiratory, GI and emotional health.
- Training and physical activity – a body in motion stays in motion.
- The willingness to try new things – volunteer for clinical trials, tweak medications and treatments, learn and understand the in’s and out’s of CF.
If you’ve been a reader since I started my blog several years ago, I’d bet you’ve seen those three themes evolve throughout my writings. Only this past weekend, while I was at my reunion, did I realize that’s what was going on. I never sat down and wrote them out…rather… I lived them.
I’ve come to understand what my CF friend was talking about when she felt nostalgic for how her health once was. She was coping with the nature of the illness. For many of us, CF is fairly manageable for the early parts of our lives, and then something turns – whether it’s a series of events or one horrible experience – and it changes the course of the condition. I’ve come to see that I can cherish and appreciate my college memories for what they are, amazing unparalleled memories. They remind me of who I once was, and what I’ve become.
Using those memories as motivation, I’ve made it my goal to turn around the progression of cystic fibrosis, and sometimes succeed – like I did when I ran the Res at BC. It was something I failed to achieve time and again, only to accomplish the feat after years of trying… something that generally doesn’t happen in CF.
My college reunion was an amazing time to reminisce – believe me I didn’t spend my entire trip having these existential moments, but when I did I learned that who I am is born from who I was.