So I’ve been in a conversation for the past couple days on the Cystic Fibrosis Facebook group. It is an open group, so anyone can join, but most people in it have CF or have an immediate family member with CF. The conversation was started by someone asking how we thought of our disease: as a blessing, or a curse. As you can imagine, it has sparked some serious controversy. I won’t use names out of respect for confidentiality (despite the fact that you could go join the group and see the whole conversation, haha), but the conversation was started by a guy we’ll call “B”.
B begins by saying
“I was just wondering if anyone considers their CF a blessing or just a complete curse? This might sound weird but without CF I think I’d be a huge cocky asshole. I feel like it keeps me grounded and allows me to relate with others that no “normal” person can. Does anyone else feel that way?”
It was amazing to me when I read this because it is exactly how I feel about my CF and about my addiction. I feel like they have humbled me and given me insight into myself and others that I would have never gained otherwise. Although I would be hard pressed to say that I enjoy having CF or having to deal with addiction, I can honestly say that I don’t believe that either has been entirely negative.
I responded to the post with something similar to that.
And several people agreed. But one young man we’ll call “D” said this:
Ok so “A” is having problems with guys because of her CF, also her lung function is low enough for TX…she was born in 1997, yeah that is young for lungs that bad. “O” is another in this group having problems with her health right now. She’s in the hospital and from what I know it doesn’t sound like much fun. “M” is going into the hospital because she is sick. They’re having problems BREATHING. I’m sick as well I may not have to go to the hospital but I don’t know, time will tell. It is summer mid July and all these people are sick, having problems breathing and so on when they should be living it up with there friends and having a good time. So is it a blessing, not to me.
I’m not saying I hate my life or that I feel pity for myself or others with CF but I’m not happy that I have it and I don’t like the fact that others do. It kills people way before they should die. A slow miserable death. Cystic Fibrosis is not something I want others to have. So when I see all of you being happy that you have it calling it a “blessing” I just don’t understand and never will understand why or how you could feel that way about it.”
(The letters “A”, “O”, and “M” are where I have removed the names of people in the group that D mentions in his post)
So, the reality is that D is right. He is right that it is horrible that all these people are sick. And he’s right, this disease kills many, and many of them are way too young. And for some people it can sure be a “slow, miserable death” as he says. And I agree when he says that CF is not something I want others to have. I would never wish it on my worst enemy. Not even for a single day.
But, I have a problem with D’s perspective. You see, he makes things black and white. It is obvious from the comments that he made (the ones above and others that I haven’t copied here) that feels like there is absolutely nothing good that can come of CF. He can’t see anything but the pain, heartache and despair. And his attitude is, accordingly, very negative. Throughout the next 50+ comments he angrily argues with anyone who expresses hope or happiness with their condition.
Although I (and others) repeatedly agreed with his thought that CF is not a good thing that we want other people to experience, but that we choose not to be helpless victims of our disease, he continued to say things like:
“Stop trying to pretend, anyone who says CF doesn’t make them sad, and that CF is not a big deal, I don’t believe you because you are lying. It is sad and it is not a good thing, I’m not saying you can’t be a happy person and have CF but there is no way you can make me believe you are happy you have CF. If you say you are happy you have it you are lying and I call BS.”
And that made me sad. It was obvious that this young man was unable to see out of his bubble of sadness and anger. He was so combative about this that it became obvious to me how angry he was about his CF. I think that right now, that is the biggest difference between his view and mine. I have learned that acceptance, instead of anger leads to the best outcome.
In a side conversation with B, he said that “we can choose to live life as a victim or a soldier, and as for me, I choose to fight.”
And I say, “Right on B. Right on.”
Living life as a perpetual victim of circumstances is awful. And I know, because that is what I did for years. I really believe that Alcoholics Anonymous is a great resource for many people who struggle with addiction and alcoholism. But I disagree with a major part of their philosophy, namely, that we are “powerless”. Because yes, I may be powerless once I put myself in a position to be powerless and once I decide that is the way I am going to experience things. But where I am now, I can see that I do have power. I have the power to choose how I will interpret the events of my life and what effect they have on me.
When I was living my life as if I had no power, I was vulnerable to whatever came my way. It led me to relapse again and again. I told myself, “well, relapse is a part of the process and I have no power over all this so I guess I just have to go with it”. I even told myself that “some people never get through this and I must be one of those people because I can’t change this”.
And by telling myself that I couldn’t change things and that I was helpless, I effectively sabotaged all my efforts to change my life. It has only been since I began this Wellness Quest that I realized that my own power is greater than I ever understood.
The power of perception is so great that we truly can make our reality what we want it to be. And I want to know that I did the best I could with the hand I was dealt. And for most of my life I was not able to say that. For most of my life I was a victim who was constantly spending most of his energy fighting against himself instead of moving forward.
Now, instead, I choose to love myself and to fight alongside my CF for wellness rather than trying to fight against it. Because my CF is a part of me, and if I don’t accept it, I alienate part of who I am. And that is never a good thing. As the Bible says: “A house divided against itself cannot stand”.
I’m sure you all have had experiences that could relate to this post. You may not have CF (or you may, I don’t know) but I know all of you have had challenging things happen to you. What do you think about all this? I’d love to hear some of your comments.
Peace to you,