In fact, if given one wish, I've always said that I would wish that my younger brother never had the disease.
Then why do I conceal my health condition from the majority of people that I know. Well, let's examine this question...
First, the disease itself is very easy to hide from those around me. Why? Three factors:
- The outward physical characteristics of my condition. I'm a thin guy. Not as thin as I used to be, but still underweight. So when asked about my weight, it's easy enough just to say that I'm a picky eater. Which has always been true.
- For the most part I've kept myself in good physical condition. I definitely could exercise more, especially cardiovascular activities. (It was embarrassing getting winded so quickly while running around in the front yard with C, W and S the other week). But I keep up with all of my meds, don't smoke or take drugs, go on regular walks, stay on my feet almost all day at work and take the boys on numerous physical excursions. Because of this, I don't really have too many coughing spells or shortness of breath experiences because I keep myself healthy.
- My scars are not visible. This reason is similar to reason number one. I have three scars from surgeries on my abdomen. As long as I stay covered up, no one can see my scars. To the whole world, I look like a short, slightly balding father of two great children and husband to a wonderful wife.
Third, I suppose I am afraid of the unknown. I'm afraid how people would react. I'm afraid they would think different of me, both for the better and the worse. I'm not the type of person to seek or crave undue attention or clamor for the spotlight (cliche alert!). I'm not looking for a pity party.
I've never hated CF. Sure, just saying the words cystic fibrosis can make me shudder a bit. (You'll notice that up until the last sentence, I've only referenced the disease as CF) But I've never hated it. Despite how it's changed the lives of those the most close to me. Despite how it will impact and affect W and S's lives. But the main difference between what W and S will experience with my health as opposed to everyone else who are the closest to me is that they are the only two people who don't have CF that will go their entire lives knowing that I have CF.
I've never hated CF despite the financial and emotional costs it has placed on my parents and C. There's no way I could ever thank my parents and C enough for what they have done for me. For what they continue to do for me. For believing in what I could become. For not treating me differently. For loving me.
And I sit here as I type this blog post thinking how much of a jerk I must sound like for not hating something that has caused the people closest to me physical and emotional pain. But I can't hate "it." Because "it" is me. Even though I've sworn that CF will not kill me, I can't distance myself from the disease.
I think what it has offered to the people closest to me is an increase in their capacity to love. And I think that's a good thing. This world not only needs more love, but it needs greater love. Whether I've entered these people's worlds by choice or chance, I am humbled by their sacrifice, dedication and love. I hope I have made them proud.
As I try to find the right words to end this post, a song that is dear to C just played though my headphones. I think a couple lines will properly wrap things up... "I hope if everybody runs, you choose to stay... I hope that you fall in love and it hurts so bad... the only way you can know if you give it all you had... I hope you don't suffer, but take the pain..."
A