Friday, May 21, 2010

27, planning 30

I'm already planning my 30th birthday. It doesn't matter that I'm yet to turn 29, or even 28 for that matter, I'm already thinking about what I want to do for my 30th. I don't think there is anyone else in this world that anticipates 30 quite like a cystic born in my generation.

When we were born, 18 was about the best that anyone could ask for. Parents were told to take their kids home and enjoy them while they still had them. Growing up was a dream. Our childhood was a period of great discovery in the CF world, from finding the gene, developing new medication, and discovering better therapy protocols. By the time we were teenagers, the life expectancy had grown to 30. Where it sat. And sat. And sat. It's slowly crept up since then, but for a long time 30 was the magic number.

And now 30 is slowly coming into sight. I know that it's still a long time off though, when you only have 30% lung capacity. It's a very real possibility that between here and there, I may have a lung transplant. It's a very real possibility that I stay the same or very slowly decline. It's also a very real possibility that I won't see 30 at all.

I'm pretty sure I'll make it to 28. Shoot, the groceries I'm buying lately have my birthday as their use by date. If they can make it to July 12th, then so can I. And 28 is awesome... but it's no 30.

Do I have a huge party? Would anyone come? (wait Talana, the "I'm insecure and nobody loves me" post is for another time) Maybe a cruise? I'd want some people that I love to come with me like my parents and my sister.

Tuesday, May 4, 2010

Holding Fast to Quicksand

This weekend was a study in all the parallels of the CF world. Of all the intrinsic parts of holding on to fleeting moments.

I traveled to Boston this weekend for Paul's memorial service. Though he passed away last year, the service wasn't until this weekend. It gave the perfect opportunity for a large portion of Q's online community to plan their travel from all corners of the US. North Carolina, California, Washington, Indiana... cystics climbed in their cars, boarded planes, and traveled to gather to honor one of their own. We're not supposed to. We're not supposed to ever meet. But we do. Germs be damned, a gathering of those that understand at a level that could never be understood by a non-mutant, a genotypical, is something to behold. I'll post pictures later, but seeing so many strong, wonderful, beautiful people that all share the same monster is amazing. People that despite having a lung transplant mere weeks ago, or lugging a portable oxygen concentrator, or hooking up an IV during lunch, are able to laugh, smile, and be so happy to be a part of the coughing chorus.

But even as we stood there, baking in the unusually warm Boston spring day, friends were dying of the same monster. We lost several in the CF community this weekend. Some of those that were healthy, living, so alive, only weeks ago. Infections that were so fierce that they couldn't be defeated. I don't remember a time before that so many people went from moderate health to dead in only a few weeks. It's scary, because I know it could be me next... or any of my friends.

Some wonder, why would you subject yourself to knowing so many people with CF. The emotional pain that must come from it must be extreme. The dangers of meeting them in person, the possible transfer of bugs, how could you possibly risk that? I wonder how I could possibly not. I would not be the same strong, resolute, and emotionally stable person without these friends. Without these people that get me. And while the online world is amazing, knowing them in person, hearing them cough just like me, seeing them pop their pills, and rest at the bottom, middle, top, and 15 more times in between while climbing a hill, words can't express what that does for my mental health. What that does to make me feel less alone. More connected. More reasons to do my treatments, to fight, and to walk down that transplant path which is rapidly approaching. Giving me strength to start the evaluation process in the near future. I couldn't do it alone. And while my genotypical support group is also VERY important, I couldn't do it with out my nebutants.