Sunday, February 05, 2006

Dealing With It...I guess

As there is no worse lie than a truth misunderstood by those who hear it, so reasonable arguments, challenges to magnanimity, and appeals to sympathy or justice, are folly when we are dealing with human crocodiles and boa-constrictors.
--William James

Unless you've been there yourself, you can't possibly know how it feels to be living in a world that has its own set of rules, its own frustrations, and its own battles. Unless you have actually sat down to a meal only to cram 6-8 separate capsules of medication down your throat, you don't know the first thing about mundane. When gaining weight and needing an inhaler less frequently are the highlights of your month; when being given the incredible freedom of getting to wait 4 months in between doctor visits instead of the usual month and a half--then you will possibly begin to understand a fraction of the life that is CF.

One of the most difficult parts of being an adult with CF is explaining it to people. More than that, it's the deciding whether or not to share that information with certain people. Personally, I would prefer to be thought of as a normal, capable, functioning human being. I worry that those who don't know I have CF will think that I'm flaky, lazy or incompetent. Even worse, I'm afraid that people who do know of my struggle with CF will walk on eggshells around me, afraid of demanding much effort in the off chance that it would aggravate or worsen my condition.

Sometimes I feel as though the world is watching me walk around with a big sandwich board that displays CYSTIC FIBROSIS in big, bold letters. Sometimes that's good--like in the case of this blog. Wearing such an identifying marker is making it much easier for me to find people out there who deal with the same frustrations I do. I don't think my sandwich board causes as much of a problem for me in the online community as it does in the real world with the 3-dimensional people I interact with on a weekly (perhaps weakly) basis.

I don't know know the particular details of how others out there in the adult CF community cope with their disease. I'm sure that we all go through periods of emotional highs and lows that are unfairly coupled with the highs and lows of our health episodes.

I can't say enough how thankful I am for my husband, Brad, and the willingess he has to weather these storms with me. He has had to learn in a very short period of time all the things about me that my parents got to absorb on a slow and steady basis. I have to say, it's a darn good thing Brad's a fast learner!

But even the fastest of learners and the most sympathetic, well meaning hearts cannot truly understand CF and the mind games it plays on me. Even with the measure of faith I have in a sovereign, just, personal, loving God are a poor match for my weakest moments. Not to be sacreligious or blasphemous, but sometimes faith in the unseen, unfelt God doesn't exactly reassure me or make me feel as cared for as an email or phonecall from a friend would. Even in a crowded room of people who say they are committed to praying for me, it is possible to feel quite lonely and misunderstood.

It's during those times that I'm painfully aware of my sandwich board, but have no hope of hiding it.

Current mood: dismal
Current snack: glass of milk
Emotional weather: storm clouds and rain
Health-O-Meter: 70% baseline

p.s. to my CF pals reading this blog, sorry to be so down, but you know how it goes.


I don't have CF, but you know I have my own battles. I know exactly how you feel about the whole sandwich board thing. Do I tell a potential boss that there may be some days that I just can't do it, or do I risk being fired when they think I'm lazy and incompetent.

Do I tell a potential date or maybe someday mate that I cannot work right now and may never be able to work full time to support a family and risk complete rejection? Or do I spring that surprise on them later and risk rejection because I wasn't honest and upfront with them? I don't know what to do in those cases other than pray.
Yeah... I do know how it goes. Our life can be like a roller coaster, can't it!?! Well I hope that your emotional storm clouds clear up soon. It is hard to always have a positive outlook. I know I don't. I can't wait till we are in heaven, and get to hang out and not have to deal with all this stuff.
I love your honesty. Just from reading your blogs, I have a sneaking suspicion that your sandwich board reads differently to the world than it does to you. The rest of us see, "This is a DARNED, INCREDIBLE, vibrant woman of faith and endurance." I have a wonderful friend who said that after the hurricane, she believed that we were all rocketed into the advanced spiritual class. Maybe you were placed there right from the beginning. It is hard to be gifted! ~Namaste'~
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