Question
September 4, 2010 5 Comments
CFer, Cyster, Fibro….camaraderie or defining?
Answer(s)
Thoughts whirling through my mind…..CFer…..cyster…..fibro…..why the labels? Is it a need for camaraderie? A sense of belonging, understanding? Or is it just a label that does more damage than good? I do not know, I am truly asking the question. I know only two things for sure. First, that I had the philosophy drilled into my head in the school of Social Work that NO ONE should ever be defined by what they have but rather by who they are. It is the idea that a person who lives with depression is not a depressed person, but rather someone that deals with depression, depression is not what they are but what they have. So, why do we as a community, and a very empowered and gifted community at that, find solace in defining ourselves by our (or our child’s) disease?
Second, since the CFRI conference, I decided that I was going to be more dedicated to blogging, not in a way to just spew crap…but in a Josh, Mandi, Ronnie kind of way. A way that makes a difference, if possible (for me!). Within two weeks, I have received three emails. One from a woman who is amazing, not because she is past her “life expectancy,” not because she is a post transplant survivor, but because she is Marianne Phillips Bertucci and she is a beautiful and incredible person. One from Josh…need I say more? He is my hero in more ways than one and not just because he has a perspective on CF that I hope Maylie embraces, but because he is and always will be one of the people that I feel closest to in this lifetime, for many reasons outside of CF. And finally Brandon, who I truly no very little about except that he is from the beautiful “Big Sky” and he sent me an email that made me feel proud, excited and proud again to be in the family of CF. I do not feel like anyone I knew twelve years ago when I was his age was even close to being as intuitive and insightful as he is. Below are quotes from these three incredible individuals. If you have CF and like to label yourself with these words….please tell me why. If you are a parent, does this evoke change in how you refer to your child? It did in me. I am just wondering…..
“I have been thinking of the issue of people using the term cystic, cysters, cfer’s and so on when describing someone who has CF. My main concern is I don’t want children growing up thinking that is their identity and that they can’t achieve their goals and dreams. I never thought I would live to be 45 or to see my son graduate high school. I have a strong will and that is what I want children to know is that they can achieve what they put their mind to.” – Marianne Phillips Bertucci
“CF doesn’t control who we are, we decide who we want to be. Yes I know what could happen later on in life, but I never let that stop me, I love my life and would never change anything about it. I have the greatest doctors, the bestest friends, and most of all the most amazing family, that I would never give up if I could change my life. The world is amazing and everyday I love it even more, and people can say CF can ruin ones dreams, but it doesn’t, it gives us more motivation to prove to people that we can do more than what we’re supposed to, and there are no boundaries for us or anyone, we can do whatever we want in our lives, we just have to believe in ourselves.” – Brandon Bagley
“This weekend convinced me we are no different than anyone else. The Jones’, Sarah M., the Easts, and Josh and Carly are just people. Not CF people. Just people and that is a very wonderful thing.” – Josh Mogren
5 comments
Kat,
Thanks so much for helping people to understand the importance of raising our children to be the healthiest both mind and body.
I never wanted my son to use the fact that I have CF as a crutch. I was taught as a child not to use CF as an excuse.
thanks for doing what you do.
Love,
Marianne
I think this is a great topic. The first time I heard the term “CFer”was in the hospital shortly after my son’s diagnosis. One of our very favorite respiratory therapists was recalling fond memories of her experiences with all the awesome “CFer’s” she’d worked with. I’ll admit that the phrase was a little off-putting to this sensitive mama. The whole gravity of the situation was still fresh, and I wasn’t really ready to embrace making anything that might be making light of it.
However, it was clear even then that she used the term lovingly, and in the context was meant to create a sense of belonging, not defining. I still don’t really like using the term myself when it comes to reffering to my child, but I do understand why and how people might use it in a positive way.
Hi. I found you via Josh’s blog. Just thought I’d post my 2 cents worth… up until now I have not given it any thought about using the term CFer or cyster when talking about Andrea and her CF. I think that’s because when I do use that term it’s only when I’m discussing CF and her to others. Just as I refer to her as a high schooler, a cross-country runner, a flute player, etc., I refer to her in those terms when talking about her and whichever label it may be we’re talking about. I don’t think all labels are bad, and mostly it’s how one references the label that can make it bad or good. I love my label as mother, CF mama, HOH mama , Hot Mama (heehee) as long as it’s referred to with love and respect. Yes, Andrea is a CFer but most importantly (and she’s fully aware of this label) she is my DAUGHTer!
P.S. HOH stands for Hard of Hearing…which my son happens to be.
Wow, I totally didn’t know anything about Cyster and Fibro until today. Imagine that, I’ve managed to live 38 years with this flippin’ genetic mutation without such a label. It seems a little silly to me. My friends call me Kristin, not “my friend with CF” my brother calls me Kris, not “my Cyster” and my husband calls me Love, not, “my CFer wife”. Honestly, I’m a lot of things, a trail runner, a blogger, a health coach an absent minded wife, and today I’m the whiny chick attached to an ice pack because I strained my back in a voracious attempt to rid the yard of crabgrass. I’ve observed some CF kids having a hard time turning into CF adults partly ’cause they have a hard time kicking a label that marries who they are too tightly to a disease. I say, be you, not in submission or in defiance of a disease, just be…and let your kids be too.
I use the pharse when talking to my family only.. just to let them know any info I had read about those w/ the disease. My granddaughter has CF and it certainly does not define the vivacious little girl she is! Saying that, it is soooo important that people understand the disease and not hide it as it has been hid for so many years. I went thru nursing school and have nursed for over 30 yrs and thought it was only a lung disease until my granddaughter. Breast Cancer Survivors are proud to be labled just that. I want to see CF survivors wearing their label in glory. It will take public awareness to win this battle. I don’t see it as a negative thing at all. The image the lables produce in my mind are of beautiful, brave and strong individuals who have more strenght than most will ever even dream of having.
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