Last night while I was nebbing I thought I had some hemo. Turns out, it was just the old sinus cavity.
Some times it is still hard - as proactive and aware as I try to be - to grasp how Cf could affect me...will probably affect me in the future. I know I talk about this a lot, but I grapple with it often. Sort of this fear/denial thing. I gues it's true with anything - smokers who don't quit because they feel fine, people with high cholesterol who still eat brats and cheeseburgers all the time - gotta have a heart attack to "get it." But I don't want that to be me, so I try very hard to listen and learn from others who have progressed farther with this disease, but still, that little piece of me insists it "won't be me."
The other day my husband was talking about my son and he said, "when he is in his twenties and you're dead and gone..." and I was like SAY WHAT? I got really pissed off about it. I mean, my son will be ten this year, and I'd like to think I have a few good years left in me. It made me wonder though, I complain that my husband doesn't really understand or care to learn about Cf all that much, so what exactly he is thinking?! (too bad he can't good life insurance on me - ha!) (and, in his defense, his mom died when he was 21 and he said he was just thinking about his own situation when he spoke, which is probably true, but still, what a foot in the mouth!)
Finally. Parents. I decided to back out of discussions on the forum, but i wanted to talk about what I think about CF parents. I have two of them, you know. and they did for me the best they could.
As a kid though, i really did not want them involved in my CF care. In fact, at age 12 I stopped letting my mother come in with me on clinic appointments and by 16 she stopped coming with me at all. I know she did not know how to handle Cf, but I appreciate that she trusted in me to take care of myself. Despite some major deviations from that path (may my mother never know!), I think I've done OK.
Still. I think CF parents are a wonderful resource, a caring group of individuals, certainly our adovocates and biggest fundraisers....but, as with any other life experience, no matter how they love us, they CAN NOT KNOW LIFE WITH CF AS WE DO. This doesn't reduce their experience as paretns or their role in the CF culture, it only separates parents and patients. This is not a bad thing. I would rather be a CFer than a Cf parent any day, as I know the way I feel for my kids, and I would never want to see thenm suffer with a disease such as this.
Nevertheless, it irks me that my mom or someone else's mom or dad or sibling or whatever, would ever dare to insinuate that they can know life with this disease or even begin to feel my pain. My uncle stated it beautifully (he has Cf and is 13 years post TX) when he was in town over Thanksgiving and told my mother, "You don't hurt for her CF the way she does." So true. Yes, I feel pain when my children are hurt, but their experience is not my own. My mother feels guilty I have Cf, she feels sad my life might be shortened, she worries when I am sick...but Cf is mine and mine alone. I appreciate that she tries to understand that.
2 comments:
In all our relationships who we're close with, parents, friends, spouces, they definitely experience the CF world but through their eyes and their bodies. We, as the CFer, are the ones who's BODY is going to be put through the ringer. Anyone can observe and care and cry and hurt for us or for the losses they will feel when we die, but while we're here --- it's only our bodies that physically go through it. No one can take the physical aspect of it away from us, no matter how much they want to.
That's why our strength , I feel, really has to come from within ourselves since we're the ones who have to close our eyes and find the strength. It's not like a piece of paper that you hand over or own or not and pass on to the next person. It's our bodies.
I agree though that parents of cystics, siblings, etc offer their own support and special way of contributing to our support network. Of course, it's different then having the disease. It seems so clear. The different perspectives start to make up the whole, so to speak.
What your huz said is kind of like what you're not suppose to say. Lol. I can see where you'd be upset at hearing it, but it's also interesting that he did say it. Hopefully he's wrong, and you enjoy way more years with your family then his comment!!! Personally I can't help but think along the same lines as what he said, for myself. It's a bit debilitating for me, but I do think, well, I won't be here after x amount of years so...... blahhh. Whatever!
I like your post and I always like how you try and tie in song lyrics.
looong response. sorry.
I think it's kind of like someone talking about your mom. Only you are allowed to talk about your mom, right? So I think I am the only one allowed to talk about dying with CF.I'm not saying this makes sense, surelty all those people who love me tyhink about it: paretns, kids, siblings, husband - but when they talk about it it makes it seem so much more real. In my mind it i still abstract, hearing it aloud from someone else makes it more concrete and that is uncomfortable.
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