This past week, I had the opportunity to attend a Cultivation Event hosted by the Cystic Fibrosis Foundation. For those of you that don't know, I work as an intern for the CFF. It's pretty informal, my boss just emails me when she has something for me to work on. I do graphic design work for the local chapter, but I also get to help plan fundraisers, attend and work at various events throughout the year and am a member of the local Board of Directors. I've been working with them for a little over two years now and it's one of the best opportunities I've ever had.
The Cultivation Event is relatively new to the CFF and quite different from most events. The primary goal of most events is to raise funds for CF research, to improve the quality of life for patients and ultimately, find a cure for the disease. This is not the case for the Cultivation Event. It's more of a social mixer, with the intent to inform attendees about recent CF developments and encourage newcomers to become involved with the organization. This was only the second year hosting the event for the local chapter. There was a good turnout and overall just a great night.
There were a few speakers for the night; our board president, Bob Boyd, a CF parent, Susan VanLandingham, the national VP of gifts, Regina Schewe, and finally our local director, Kimberly Johnson. There was great stories and information throughout, but my favorite was something Regina shared... that it hasn't been officially released, but the CFF has increased the national life expectancy from 37 to over 40 years of age.
I shared this on Facebook, but I wanted to talk about it a little more in depth here.
It's not easy to grow up knowing that you're going to die. And sure, everyone dies at some point, but I mean really going to die. I'm talking about knowing deep down that you're going to die a painful, drawn out, unjustified, early death. Knowing that you're never going to experience some of the greatest joys in life; retiring to sunny Florida, holding your hours old grandbaby, seeing your daughter walk down the aisle, proudly clapping as your son graduates high school. Or worse, knowing that you may never dance at your own wedding or even walk across a stage to accept your own diploma.
When I was born, the "average" life expectancy for CF was about 18 years old. This means that half of patients die younger, half die older. My mom shared with me something the other night that I had never heard before... while most doctors were telling her the national statistics, one was more blunt and told her flat out, I probably wasn't going to live past five years old.
Five years old.
Forget college diplomas, I wasn't even going to reach kindergarten. To be honest, I'm glad my mom never told me that before. It's pretty harsh. It was hard enough to accept 18. And the current 37 years. But 5? I can't even fathom... for the record, this is just another reason why my mom is one of the most amazing women I have ever known. To be told that about your precious little baby is unconceivable to me. It takes a particular strong person to hear that and not let it completely destroy you.
Things have improved greatly since I was born. Obviously, I'm a wee bit older than five years old. The current life expectancy is in the high 30s. Although as Regina shared, it has recently increased to the early 40s. But let's be honest... 40 isn't exactly old. Most 40 year olds haven't even put their kids into high school yet. Just because it's improved ten fold, doesn't mean it doesn't still suck.
The fact of the matter is that I'm going to die early. Before the majority of my family and friends and certainly before I get to do everything I want to in life.
So how do grow up knowing that? How do you plan for the future, when you don't even know that future exists? How do you have dreams, hopes, goals, when both logic and biology are determined to crush them? How do you go through life watching everyone around you grow up and move on with their lives, without wondering if you'll ever have the chance? How do you come to terms with your own mortality? How do you accept growing up with an expiration date?
Short answer? You don't. Not that I've figured out at least. Being optimistic versus being realistic is one of the single most difficult parts of being sick. On one hand, there's this energy inside me, this unbounded light in my heart that say screw the statistics, I'm going to make it. I like to think it means I'm determined, but stubborn is probably more accurate. There's nothing quite as empowering as being told you can't do something, that's just human nature. I've already accomplished more in 21 years than anyone ever expected me to and I'm not done yet. There's a hope inside me completely convinced I will be fine. I will graduate college. I will find a career that I love. I will get married and have children. I will raise my children (and realize I am exactly like my mother in doing so). I will see them graduate high school, get married and have babies of their own. And then I will retire and live happily ever after...
...and then there's this gut wrenching darkness in the very core of my being. A darkness so overwhelming that at times, I can't even find the strength to get out of bed. It that rips through every hope and dream I've ever had, completely wrapping me in paralyzing fear. This darkness is a voice inside my head that screams at me to stop being naive and accept reality. And reality is that I'll be lucky to even make it another five years, much less fifty.
Some days, the light radiates. And some days, the darkness consumes me. It's a constant battle. Well.. no. A battle implies that one side will win, or that one side is better than the other. With this, there isn't a winner and honestly, there shouldn't be. I can't be naive and completely ignore the reality of my condition. But I also can't limit my life just because some biology text book says my body is broken. So no, it's not a battle, it's a balance. It's finding a way to strike some level of harmony between these two forces inside me. Because alone, both would destroy me in their own way. But together, they command a level of determination, realism and strength I can't find anywhere else.
This whole idea has been more apparent and crucial the past few years than ever. Maybe because my health is progressing with age, maybe because I'm old enough now to actually understand what it all means. Who knows. But, if I stand any chance of being successful, happy and healthy, I have to find a way to accept my fate without allowing it to restrict me. I have to find balance. I think I have done a good job so far, but I definitely have a long ways to go.
When I was 7, I played with babydolls without a care in the world. Now, I see my friends having children and I can't help but feel my heart sink a little bit, wondering if I'll ever get the chance. As a child, I was naive. I didn't understand what mid thirties meant. As I get older, I am able to better appreciate and experience life, but I am also inching closer and closer to that looming expiration date.
So what am I getting at... honestly, I'm not entirely sure. Ha. Yes, things have improved and I've done a pretty decent job, so far, of trying to find balance.. but the bottom line is those statistics still exist, for a reason. They're real. I can't deny that. I'm sick and unless things change, significantly, I'm going to die.
Lucky for me, things are changing! ...but to keep this post from being awfully long, and because my class starts in six minutes, that part of my story will have to come later. I know, I'm such a meaniehead. It'll be worth the wait though, I promise :)