The assault on self-esteem comes in small skirmishes that add up. When Lily was in high school, we dropped her at JFK for a trip through Europe. She and I went into the terminal while Meredith parked the car. “You wait right here while I get my ticket,” she instructed firmly as she dashed off to do battle with a ticketing machine. Yes, Ma’am, I silently said. Shouldn’t it be the other way around? I had the uneasy feeling that I was with my sitter, and she was instructing me to behave myself. My daughter was eighteen. I was legally blind. It did not feel right. The memory stays with me.
This was not the first time I felt my physical limitations undercut my image of myself as a strong parent. Self-esteem suffers when a father feels the loss of parental authority. Humiliation can quickly follow. I have written before about the pain of feeling like a child. This is nobody’s fault, only a predictable consequence of living with a disease that can make a strong man weak.
A flight home from San Francisco had made the same painful point. I’ll meet you at the plane, I told her, hobbling off to buy a newspaper. I began my walk toward the gate, looking for shops I had focused on earlier to mark the trail. My lousy vision is as problematic as my limited ability to walk. I eyed a fork in the concourse ahead that had escaped notice coming from the other direction. It seemed to pop up out of nowhere. Now I had to guess which road to take.
I walked what for me was a fair distance. My legs began to shake. I began to feel tired and recognized nothing. I did not know where I was and began to sense a familiar anger rising in my head. A slight panic mixed with strong self-recriminations. How could I have let this happen?
My cell phone rang. “Where are you?” Meredith asked, concern in her voice. I chose to hear that as impatience. I don’t know where the hell I am, I half-shouted into the phone. “Tell me anything you see,” she instructed softly. Stay there, she told me after I identified a nearby shop. “I’ll find you.” The familiar feeling of helpless dependence washed over me. I felt so small. Don’t let me out of your sight without a babysitter, I instructed bitterly.
Once again, I had been reduced to a childlike adult. On the long flight home, I sat wondering why needing the help of another feels so emasculating to me, as if I am less of a man when these things happen. I have to somehow force myself to remember that I do many things well. I function efficiently and effectively, and that is what is important.
As my condition worsens and my body takes leave of me, I need to hang onto all I have accomplished. I was not merely a passenger. I have to stop allowing my worst fears to define me in my own head. I know I am deeply fearful of losing cherished independence. Control left long ago. Friends and acquaintances tell me that when they look at me, they only see my strengths. I seem to be the only person who looks at a cripple when I pass a mirror. Some memories die hard.