Who Am I?

As the inability to perform basic and often simple tasks increase, frustration and anger often become side effects of my fight to remain independent, mobile, and helpful. Resignation (a negative form of acceptance), especially at first, is something I cannot tolerate. Meanwhile, since there is no treatment available, the wasting away of my body continues. As the disease progresses, my self-esteem is challenged almost every day in some way or another.

As my muscles weaken further, self-doubt increases. I begin to wonder if I am more of a burden then a blessing to my wife. My perceived manhood is now being challenged. Instead of being the protector of the family, my wife is now trying to protect me. A few years ago, another challenge showed up and this one is even more difficult to handle. It is not bad enough that the disease has robbed me of my strength; it is now slowly taking away those special moments of intimacy that I once shared with my wife. It is impossible to walk hand-in-hand on the beach, just sit on the couch together, or snuggle comfortably in bed. It is difficult to give a good hug or hold and comfort my wife from a wheelchair. Yes, you learn to improvise, but it just is not the same for either of us. Improvising removes spontaneity.

Self-doubt begins to raise its ugly head as more and more things that are important to me slowly disappear from my life. Every emotion and belief is being challenged. I find myself asking, "Can I bear my soul and my pain and still be considered a man?" As I feel more isolated from the world around me, I begin to ask myself what my wife really thinks of our relationship. I know she still loves me, but can she continue to love me as I become more of a responsibility (burden) to her. Or, will she just end up taking care of me out of some sense of responsibility … you know, the "in sickness and in health" portion of the vows? At times, I become frustrated because I am no longer needed. If I am not the breadwinner, the lover, the "fix-it man," and the "man of the house," then who am I?

The unknown (my future) is what concerns me. Being alive, but not having any "quality of life" and being a constant burden to my wife is difficult for me to accept.

Now, do not be concerned that today's post is some sort of sign of depression. I am not 'down' or upset. Actually, the opposite is true. My writing of this post is just a way to express another "wake-up call" for me. I am trying to find myself once again (my new calling, so to speak). This blog has been part of that discovery process. My involvement with the Kennedy's Disease Association is another part of the process. Yet, there is still something missing … my more personal (intimate) side still has to be found.

Acceptance, something I have written about several times, is not a light switch that can just be turned on. It is not something that automatically means you are happy again or brings you comfort. There are many parts of my life that I have not fully accepted yet. This process of rediscovery is a never-ending journey for me. Every time I accept something new about my condition and myself, it is like another awakening. And, whenever I find a new way to express myself (to help others), opens another door.

About a year ago, I was watching "Saturday Night Lights." The high school football team was down 26 to nothing at the end of the first half. The coach ended his halftime pep talk to his players with the following. "Every man at some point in his life is going to lose a battle. He is going to fight and he is going to lose. What makes him a man is that in the midst of the battle he does not lose himself." For me, this battle is not over, because I am still finding ways to be my new 'Self'.

Dr. Phil says it another way, "What happens in your life will affect you, but it does not have to define you." I am hoping that this discovery process will better help define me.

In the meantime, I need to focus on the moment (live for today), forget about the past, and not be too concerned about the future. The only thing I have any control over is the present (my attitude). Another favorite saying of mine is, "Nothing comes into existence uninvited." If I worry about what could be, it will probably come to pass (or maybe even something worse). On the other hand, if I focus on what I can do today to make a difference for others, then the past and the future really does not matter.

"How can I help you?"