In the past year or so, as I’ve become more involved in the CF community, and as my own health has become increasingly harder to manage, I’ve noticed a certain concept creeping quite regularly into my discussions with other CFers — the strong desire we have to lead a normal life. Growing up, I had a picture in my mind of what a normal life should look like, and over the years I’ve done my best to make my own life resemble that picture.
Last year I became very sick. At a particularly low point, I found myself in a hospital bed, barely able to breathe, in severe pain, absolutely terrified and feeling very alone. I allowed myself to cry for a long time that day; I cried because I was finally beginning to come to terms with the reality of this disease, because I was emotionally and physically exhausted, because my family couldn’t be there with me when I so needed them, and also because I felt as if I were being robbed of the normal life I’d always wanted.
From where I sat, the portrait of my current life and that of the normal life I’d envisioned looked NOTHING alike; where there were supposed to be bright splashes of color, there were gray shadows and instead of beautiful scenery, there was a mess of odd, senseless shapes. I felt discouraged and lost, and at the time I was furious with CF for stealing my chance at normality.
In the weeks following that hospitalization, I slowly started feeling better and as my energy returned, so did my morale. I began feeling excited and optimistic about the future again. Before long I was even feeling, dare I say, normal again. And that’s when I started thinking, what is normal, anyway? Who or what is the standard that we are supposed to measure up to? Because you and I are different, does that mean one of us is not normal? Do our personal challenges make us abnormal? What exactly constitutes a normal life?
When I hear other people with CF say things like “I just wish I were normal“, my heart hurts because I truly feel for them and can relate to what they are going through, but I also feel grateful that I’ve moved beyond that place. I no longer wish to be normal, or mourn for the normal life I’ll never have. I have come to realize that normal doesn’t exist.
If it’s not CF that threatens someones normality, it may be depression, down syndrome, mental illness or one of hundreds (if not thousands) of other diseases. Besides handicaps and illnesses there are people dealing with poverty, violence, abuse, neglect, etc. The physical and emotional scars caused by any one of these things could just as easily steal someones chance at a normal life. Some trials may be life-long and noticeable, like CF, while others remain completely hidden to everyone but their owner. The bottom line is that no one is immune to the possibility of facing a major, often times completely heartbreaking, life disruption. I firmly believe that everyone, no matter their situation, will at some point experience their own personal hell that will make them reconsider their idea of normal.
CF (and all that it entails) is just a part of me. It may seem foreign to someone else, but it’s all become very normal to me. This is my life — my normal life. It may not match your description of normal, or anyone else’s for that matter, but it’s the only normal I’ll ever know.
I still see those portraits in my mind: real life vs. the life I’d imagined. It wasn’t until I reached a very low point in my life that I really examined those pictures, and at the time I was disheartened by their differences. In time, however, I began looking at those pictures in a new, more forgiving light. The more I looked, the more I began to see some very significant similarities between the two. All the important things are still there, I just have to take a step back every now and then to see them. Sure, there may be a little more gray than I planned on, but it makes the colors seem that much more vibrant in contrast.
This life of mine is very different from the normal one I once strived for, that’s true, but I can promise you that it’s JUST AS BEAUTIFUL.