I never thought of myself as “disabled”. I never use to that is. Then again, I had never lived to be 43 before. Or 42. Or 41. And with each passing year I can look back on an increasingly longer journey and see the innumerable ways in which having a chronic illness has impacted my life, affected my relationships, hurt me financially (up to this point at least), challenged me spiritually, angered me at times, hurt my self-image, pressed me forward, challenged me to be better than I would have otherwise been, held me down and kept me form being all I could have been and more. It really does run the full spectrum when I sit back and think about the ways in which CF has shaped my life.
It is not as if I am an invalid, mind you. There are people with CF who are much sicker than I am. In fact, I would argue that I am not sick. But that is only because I devote 90% of my life to staying well. So, while I am not an invalid, my life is most definitely forever altered because of CF.
In the end, when the dust of life settles, even though there are people in the world who are much more limited than I am, the one thing we all have in common (and this includes anyone and everyone who is challenged with a chronic illness) is that coping with our illness is like being in a dysfunctional marriage. Of course, this is just one mans perspective. I should not presume to speak for everyone who has an illness. But if you do have an illness, think about it and be honest with yourself for a moment.
Illness demands our attention. It craves to be the center of our lives. It asks for our respect and fear. Illness holds our attention. It instructs us, both with truth and with lies. It raises its head whenever it wants, and sometimes in the most inopportune of times. Our illness fights with us. Wars with us, tries to wear us down by making us weary. And in the end we have to admit that life would have been far different had we not been dealt the cards we were dealt. But would it have been better?
As hard as my illness had been on me, there are times when I feel that even though my condition is like a terrible spouse, like a terrible spouse I have moments with it where I see the wisdom it has. I see that the illness is not always like a bad spouse. Sometimes, it is like a well-meaning drill sergeant who is pushing you beyond your limits in an effort to make you better. Or is it that I get stronger in spite of my illness. Or maybe I get stronger for the express purpose of spiting it, showing it that it cannot beat me. But again, isn’t that just like the relationship between a drill sergeant and his soldier?
Consider, for a moment, if I would have ever picked up a barbell if I had never had CF. Moreover, even if I had not been dealt this card, and even if I had tried to work out, would I have continued to work out if I didn’t have CF? Let’s face it, most men and women never get fit, and if they do they tend to let themselves go after they reach their late 20′s.
Having CF really doesn’t give me an option. I work out or I die. It is that simple. Either I take care of myself, or CF will take care of me. And I can tell you that CF doesn’t play nice. It plays rough and it plays mean. So, I train. And I train. And I keep doing it because I am healthier than I would be, by far, if I stopped training.
So, I have a healthier body than most people with CF, because most of them are leaning on medications, operations, lung transplants and ultimately they just never start doing what they can do to really improve the quality of their lives. Working out is hard. It is as tough and mean as CF is. I can understand why most people don’t do it, let alone people coping with a severe condition like CF.
Still, I made the choice I have made. Yet, in spite of my relative good state of health, I cough like crazy in the mornings. I do it on purpose to a degree. I have to. I have to keep my lungs clean. If there is stuff down there, and there usually is, I will not allow it to stay there. I need to be able to breath. And my fitness program helps me do that, along with some moderate medicinal indulgences and whatever Grace God sees fit to bestow upon me.
So, am I disabled? I don’t know. Maybe I am. In some ways, at least. I find it hard to work a traditional job. I am broke because of it. I will not always be broke though. I can promise you that. But I don’t date much because I don’t wish to burden someone with my illness. I am isolated because I am not comfortable being around people if I am not feeling my best. I have to take certain meds just to digest foods. Emotionally I am a wreck sometimes. I am angry at God a lot of the time because I am weary. Just plain weary, man.
Imagine knowing that every time you wake up in the morning you are going to spend the first 3-5 hours of the day forcing your lungs to get better. Imagine knowing you will never have kids, or that the chances are slim if you are male and have CF.
So again, the question remains. Am I disabled? Well, let’s just say that CF has a relentless habit of reminding me that it is there. Always there, lurking in the shadows of my mind, pressing my buttons whenever it chooses, slapping at my sense of well-being and ultimately taking sucker punches at me whenever it can. But know this: I am going to do my damnedest to punch back harder than it hits me, and I am going to do my best to take the hit that CF gives me. I think I will win this one. I hope so. I know I want to, and I think I have what it takes to do it.
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