With the recent passing of my nephew Emerson, and losing my sister Anna to CF just under two years ago, the concept of death (something which I've never encountered until Anna's) has entered my life and seems here to stay. Unfortunately, it hasn't only affected me and the older, more mature people in my family. Both Anna's and Emerson's deaths have made their own impressions on my nieces and nephews, children who are much too young to have experienced two deaths already.
As mentioned, I was fortunate to avoid the heartache death brings until late my sophomore year, while these kids have already been through the pain twice. Both Anna and Emerson passed away from a chronic illness, and both in the hospital. And now, with my impeccable timing, I am in the hospital due to my CF right after Emerson's funeral. It only makes sense for the kids to be worried about me; it's easy for them to associate hospitals (and if they're old enough to understand that I have a disease, then that, too) with death. Maybe not even death, but just bad connotations.
I don't want this. Not at all.
At Anna's wake, my uncle Blaine took me aside, and as we walked down Coon Rapids Boulevard, Cokes in hand, he made a point to tell me, to really emphasize to me, that Anna's history isn't mine. Her ending isn't mine. Seeing her die like that no doubt had its affect on me, but that doesn't mean that would happen to me. And I knew that. Despite seeing CF take her much too soon, I've still dreamed of my own future, past 23, as a dad, as a grandparent. I know that I still have a chance. Her story isn't mine.
My nephews and nieces, on the other hand, can't comprehend that.
So what do I say to them? How do I, or their parents, convince them that I'm okay?
How do I convince not only my nephews and nieces that I'm okay, but their parents, my friends, everyone?
I completely understand where everyone is coming from when they say they care about me and want the best for me. They worry about me. But they shouldn't (in fact, I wrote a blog about this exact topic here. It is relatively similar, but read on). If you take one look at the past two years, it's hard not to worry and to care.
But just because I'm temporarily sick doesn't mean that's it for me. Yeah, yeah, I'm always "sick", and I never can take a break from it, but the times when I'm extra sick, I still am doing pretty well. This isn't to minimize my illness; every time I go into the hospital I do lose a little bit of ground, which is something that my doctors have stressed greatly, but it is nowhere near the caliber of sickness that would take me down to the ICU, where the bad things happen.
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| One of the many Climb for a Cures Anna and I did |
It is so very hard to express my thoughts on this topic. I want to allow people to care and to worry, but at the same time, I want to be me. I don't want to be constantly reminded of my CF from others, because trust me, I already am from my body. I don't want to be given special treatment. I want other people to have hope for me, rather than worrying. I want to be good and healthy enough for people to be confident in me and to not have to worry. I suppose that means there's a lot on my side to take care of; I have to take care of myself and maintain my health.
It depresses me to think people want to take pictures and videos of/with me because I might die at anytime from CF and they want those memories. Why can't we just have those memories, still captured, because they're great memories? Why do we need to put a reason behind it?
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| Emerson and me napping |
So how do you explain to a kid that their uncle Jeph isn't going to die just because he has CF and is in the hospital? It's one thing to build up older, mature family members' confidence, but that of a five year old? I suppose you just have to prove it to them.
I need to strive to be better, to be healthier, not only for myself, but for my family members, because as much as CF affects me, CF also affects each and every one of my loved ones.
Through these two premature deaths, I've learned that my family members' histories aren't my own, which means that I have a great future in store for me.
