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a milestone.

Posted Jul 07 2010 8:17pm
growing up, i was fairly isolated from the CF community. as crazy as it sounds, my mom had a gut feeling that germs could be passed between CFers long before there any medical evidence to back up her intuition. when i was a very young child and we went to visit our only CF family friends, my mom would bring plastic-wear and paper plates to avoid germ spreading amongst us CF kids. really, she did, and they were good sports about her craziness, laughing it off endearingly instead of judging her.

my mom's gut feeling about the spread of bacteria among CFers didn't only apply to dishes and utensils. she would make me bring my own entertainment to clinic instead of playing with shared toys and avoid touching doorknobs or elevator buttons in the hospital. we'd even ask the respiratory therapists to sterilize the old-school pft machines in front of us to make sure they were germ-free. to be fair, our fear of CF germs almost exclusively applied to hospital settings. i swear we weren't this paranoid in all facets of life!

as you can imagine, our "germ phobia" didn't make us the most popular patients in the CF clinic. my mom was often called crazy and overprotective, but we were ok with it. true to form, my mom unwaveringly listened to her gut feeling in spite of all the criticism. she's admirable like that.

well, fast forward 5 years and something crazy thing happened. suddenly, my CF clinic implemented radical new infection control precautions. we had to wear masks in all "public" hospital areas and leave 3 or more feet between ourselves and anyone else with CF. in other words, my mom's premonition about the spread of germs among CFers turned out to be a real, scientifically-based health concern.

i mention all of this not only to credit my mom's impressive foresight, but to explain my disconnect from the CF community. fearing the spread of bacteria, i've generally tried to avoid contact with CFers to protect myself and others. i stayed away from most CF events and groups even though my family continued to attend. i never went to CF camp. in fact, i don't think i've ever even attended a CF education or support session. when i was asked to be on the patient board of advisors at the children's hospital, i felt honored, excited and eager to make changes, but I ended up declining. i didn't want to wear a mask (it violated my adolescent fashion sensibilities!) and i was anxious about picking up bugs from other members of the board.

so... basically, what i'm getting to is that creating my own CF-focused blog is a big personal milestone. emotionally. it is my first active participation in the CF community online or off and that is a big deal for me. it is the first time that i'm talking about my CF experience to other members of the tribe. people that get it. people who also experience sleeplessness because of levaquin or prednisone. who have hearing loss from all the tobra, stress about getting through airport security without being labeled a dangerous terrorist with explosive (airway clearance) devices, and avoid hot tubs in spite of their amazingness because of the bacteria they can grow.

i don't lament my relative CF isolation in childhood or resent the fear of germs my mom instilled in me. at all. in fact, i think it was a probably good thing in many ways and it was certainly motivated by the purest of intentions. but when i read about CF camps and how beloved they were, i do feel a tinge of envy for the shared CF experience that i did not have. i believe the online CF forums and blogs have created the opportunity for a similar kind of shared CF experience - the support, honesty, information sharing, concern, encouragement - but without the threat of passing bacteria to one another. while i'm not suggesting a web-based community is the same as a real one, i know that nothing can replace in-person contact and relationships, i do think the online community the CF world has created represents an valiant, virtual alternative. and an excellent option for us self-proclaimed germaphobes.
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