What Would Anna Do?
Since Anna died, but especially since I've been in college and especially since I've transitioned to the adult clinic, I've thought about this. I've tried to emulate Anna and the way she lived. She was so energetic, positive, kind (not only to friends and family but to everyone!), smart, open-minded, care-free and headstrong. She was really inspirational, but I'd say she's even more inspirational to me now.
During my first hospitalization as an adult, I learned pretty quickly (but not without the help from my sister, mom, brother-in-law, and girlfriend) that I need to advocate for myself. I'm an adult and nobody will hold my hand like they did at the pediatric side.
We held a care conference pretty early on to discuss my treatment plan and to figure out what's best for me. I was able to speak my mind about my concerns, my needs, and my goals, which all probably would have been addressed (or just not have been an issue) on the pediatric side but it was different here and without knowing that I should have addressed it myself, they probably wouldn't have been addressed and I would've had a much more different experience. (This is to say that I don't think there is anything inherently wrong about the way the adult side is run, but it just wasn't what I'm used to so I figured that everything would be the same in terms of how my care worked.)
That was new to me. I forget that I am on the adult side now and that I need to speak up for myself. I need to do things without people telling me to, and I need to make sure things are done the way that's best for me. It's on me now.
So where does WWAD come in? Well, I never really saw the clinic/hospital side of Anna, which in a way is actually kind of weird. We were far enough apart in age where when I would have been more aware of her CF and stuff, she went to the adult side and we didn't have many appointments together anymore. I hear a lot of stories, mainly from my mom, about Anna and how she was probably not the best patient. But she got her way. She knew what she needed and what was the best thing for her. She told the docs and nurses how she felt and who she needed to see and who she didn't need to see. I'm definitely sugar coating this, because of course Anna was nothing but an angel ;)
Anyway, I've taken that and started to try to do it. I see the same nurse every single appointment who assumes I don't know how to carb count and she treats me like a little kid. I told her the last time she came in that I didn't need another lesson and that she can trust me. Normally, I'd be quiet and just sit through it for the 20th time. That's just a small example.
I've also taken up leading the Climb for a Cure. That's something Anna always did; she was the one who started the team each year, would post something about it every day, try to recruit people to climb, spread the word to get donations, and it worked. If you heard about the climb for a cure, it was from Anna.
For whatever reason, I didn't think that was my responsibility to pick up. The first year after Anna died, we had a HUGE climb team in honor of her. Then it gradually shrank again until last year we had just four people climb. It was so sad.
So I said "WWAD?" and posted on Facebook. I started the team this year, I'm posting about it every day, I'm recruiting people to climb, I'm spreading the word to get donations, and guess what? It's working. If you've heard about the climb for a cure, it's been from me.
Yeah, I had to post a pretty tough status to get this support. But it rang true with many people. "We shouldn't have to wait for someone to die to have this kind of success." When I wrote that, we had just $25 raised. I blame myself. I expected everybody to do it for me. To donate, to get the word out, to climb, but, like I learned in the hospital, it's my responsibility. I need to advocate for myself, for my climb team, for research funding. I need to be more energetic, positive, kind (not only to friends and family but to everyone!), smart, open-minded, care-free and headstrong. That's what Anna did, and that's what I'll do, too.
