By Jamie Stewart.
I am guilty. Actually, I am full of guilt, which makes me feel guilty. I feel this way because of what I can no longer do. Chronic inflammatory demyelinating polyneuropathy (CIDP) has taken things from me, and I still haven’t come to terms with those changes.
I hate having this guilt. Coming to terms with my new identity is difficult; activities that I used to do naturally now come with a cost. This cost is usually in the form of either pain or fatigue. I feel like I am letting everyone down, but mostly myself.
Some of the most stupid things cause me to feel this way. I look in the mirror and see the reflection of a quickly aging man: Fat has replaced a once-muscular body. Legs that could take me anywhere are now reduced to atrophied appendages that tire and weaken after the slightest exertion. My arms and shoulders that could once carry the weight of the world now struggle with carrying a bag of groceries. I am disgusted with what I see. I feel as though the world is disgusted with it too, and I feel guilty because I am powerless to change it.
My mind is also losing its sharpness, and my ability to remember things is rapidly fading. There are parts of my life - adventures, important dates, names of old friends - that are gone. I used to be the master of oddball information - a Trivial Pursuit genius. Now, I stumble mid-sentence to remember my next word. My sharp wit and even sharper tongue are as flabby as my stomach.
All of this makes me feel as though I am a lesser man. The traditional things that a man should do, I can’t. Mowing the lawn — hell any yard work — is left to my wife. The odd project around the house is now hired out. Even the fundamental thing that makes a man a man is no more, as “the act” can result in either no feeling or intense pain. No one told me that CIDP would be emasculating.
I am constantly fearful of the meeting when I am told that my employment will no longer be needed. I work as hard as I possibly can, and many times, I overwork to compensate for the times when I can’t. I worry who would be willing to hire a broken-down 40-something if I lose my job? How would I support my family? Would our bills get paid? Will my wife see me as a failure?
All of this contributes to my guilt, and I don’t know how to shake it. I know it is a part of my new normal and something that I need to work through, but it’s not easy. Society has always rewarded the strongest man. My internal drive still tells me to push hard, but my mind and body fail me.
I am learning to work within my limits, to accept my shortcomings. There is no guidebook or literature that tells someone how CIDP will affect them. Trust me, I have read every article and study, and have talked with other CIDP sufferers, but we are all affected a bit differently. There is a term called classic CIDP, which was defined in 1976, but truly none of us are classic. We are medical zebras with individual struggles, some more than others.
I do know that I will continue to fight, and that keeps me going. And, if I ever get the upper hand on this damned disease, I promise I won’t feel guilty about it.