October 25, 2011
When my wife, Meredith, and I dropped our daughter Lily at JFK International Airport for a post–high school graduation trip through Europe with buddies, Lily and I entered 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 thought to myself. I had the uneasy feeling that I was with a sitter, and she was instructing me to behave myself. My daughter is 18, and I had the horrifying sense that generational role reversal already had set in.
This was not the first time I felt that my physical limitations undercut my image of myself as a strong parent. Self-esteem suffers when a father figure sees himself as less than he once was, unable to assume his parental duty. Humiliation comes quickly. I have written before about the pain of feeling like a child. This is nobody’s fault, only a predictable consequence of dealing with a progressive disease that increasingly diminishes a person.
Our flight home from San Francisco only days earlier made the same painful point. We were out there attending son Ben’s graduation from Stanford. The plane would board in less than an hour. Meredith and I sat at a wine bar, discussing how glorious the event had been and the special horror of flying home on the red-eye, leaving at 11 p.m. and landing at JFK just after dawn. I left my wife at the wine bar and hobbled across the concourse to a restroom. “I’ll meet you at the gate,” I told her.
After exiting the restroom, I began to make my way back to Meredith and the kids, looking for landmarks I had noticed on my way there. My legal blindness is as much a problem in these situations as my limited ability to just to walk. I eyed a fork in the concourse ahead that had escaped notice coming from the other direction; I now had to guess which road to take.
I walked what for me was a fair distance. My legs began to shake, as I began to feel tired and I still recognized nothing. I sensed a familiar panic mixed with strong self-recriminations: How could I have let this happen — again?
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.” That familiar feeling of helpless dependence washed over me. “Don’t let me out of your sight without a babysitter,” I instructed Meredith bitterly once we had reconnected.
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 force myself to remember that I do many things well. I function efficiently and effectively, and that is what is important.
I covered wars and wrote best-selling books under difficult circumstances, taking chances and succeeding where others with physical limitations might not have made the effort. There should be emotional currency in the bank by now. More important is that I helped raise a family and was a strong force in my children’s lives. I took on the responsibility of helping them choose colleges they wanted to attend.
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 see only my strengths. I seem to be the only person who sees a cripple in the mirror.
“That’s sad” is about all Meredith will say. “You don’t even see what a strong role model you are for your own children.” I have felt like a survivor for so long I probably do not see more than my private nightmares. Maybe I should lift my eyes and see what a good life I have.