People often tell me that I’m an inspiration, for my zest and enthusiasm for life, my lack of self-pity, my acceptance of what I’m facing. I’m never sure what to say or how I feel about that. If there is anything that makes me inspirational, it’s the things that people don’t see or know about, the perseverance to get through the general navigations of everyday life.
Like when I’ve negotiated my way through the crowded sidewalks to the busy subway, and there is construction that is pounding through my hearing aids, so I take them out and read my book while I wait, and miss the subway that is right in front of me, because I have neither seen nor heard it, and decide to laugh about it, rather than let it get me down.
So being told I’m an inspiration can make me feel uncomfortable, except when it comes from my brother. I don’t mind when Peter says that I’m his hero, because I can say, in all honesty, “No, you’re my hero!” Peter is my number one advocate, supporter, and interpreter in dark and loud situations. He is also unquestionably the most patient, caring person I know, and hilariously funny, as well. I have always admired his extraordinary ability to meet someone with no prejudgments, and the empathy he has that allows him to put himself in someone else’s shoes, look out through their eyes. It’s so rare, and it’s so important.
Peter is the guy you always want on your team—not always because he’s the best player, but because he is its unbridled enthusiastic heart. He exudes positive energy, even when things are tough, and he has the unique ability to immediately make you feel comfortable in your own skin—to recognize and accept you for being exactly who you are. Singing and dancing with my siblings has always been a joy for me, being able to groove and goof around together, and if you’re ready to have a good time, say, wholeheartedly singing your favorite cheesy love song from the ’80s (preferably Debbie Gibson, in his case), Peter is your man and will join in and belt it out with you. If he doesn’t know the words, he’ll still sing as though he does or he’ll dance enthusiastically to support your vocals.
Over the past several years, my ability to see and hear in a dark and noisy restaurant has become increasingly compromised. I often just sit quietly and get lost in my own thoughts. The background noise is simply too loud for me to hear the person speaking, and my field of vision is too narrow for me to follow the conversation as it bounces back and forth. It’s not that I’m not enjoying myself; it just requires a lot of effort on my part and the patience and willingness of others to repeat what’s been said. For many, even though they love me, I know it takes away from the ease and fun of their evening, and the truth is, a lot of what’s been said may not be worth the effort of repeating. When Peter’s there, though, I always have a good time. He’s sensitive to my needs and normalizes them with humor and grace. When we are gathered at a table with friends or family at a restaurant, he’ll encourage people to speak a little louder or to speak in my direction. Peter is so familiar with my sense of humor that he knows when I’ve actually heard what’s been said and when I am faking it. People will laugh hysterically over a joke and calm down—the punch line has been delivered, the moment is over—and Peter will repeat the story for me just because he knows that I would have laughed hysterically with everyone else had I heard it the first time. And I always do, which makes him laugh, too. It’s so much better to laugh with someone else.
One of the hardest things to have lost is the ability to laugh in a crowd. I can’t imagine anything worse than living without laughter; it sucks to not hear the joke when everyone else does. The people closest to me are quick and witty, and laughing is just what we do. I want to laugh along with them, and I want to make them laugh. Luckily, it’s as important to Peter and Alan and Caroline, and they’ll always repeat something for me to make sure I get to. Peter is the best of all at ferrying laughter to me when it doesn’t reach me the first time.
When the waiter is reciting the specials for the evening, Peter will repeat them to me quietly as I lean in to him and listen closely with my left ear. It often sounds a little something like this: “Halibut with capers, tomatoes, and olives; filet mignon prepared with potatoes, green beans, and hopefully not whatever just flew out of the waiter’s mouth . . .”
One night, he took me to see Billy Crystal performing one of his shows, 700 Sundays. When the show had started and I tried to use the assistive-listening headphones, we realized that they weren’t working, so he tried to repeat everything that I missed that he knew I’d think was funny.
At one point, the entire audience was laughing hysterically, except for me. Peter could tell I had missed what had been said, because it was a fart joke, and I always laugh at those. So he repeated it for me, and as the rest of the audience quieted down, I started laughing solo and hysterically, which Billy actually heard from the stage. In the blinding stage light he looked out to the audience in my direction and said, “You like that one, huh?” This of course only made me laugh harder.
People, understandably, find it hard to joke with me about my sight and hearing loss, but I often need to laugh about it, and Peter gets that. One night, at a big, loud dinner with family and friends, a joke was told, and I couldn’t hear it. My hearing aids often pick up the wrong sounds, loud background noise rather than what I’m trying to focus on. After Peter had repeated the punch line for me several times and I continued to look at him inquisitively, he finally enunciated as slowly and clearly as possible.
“I . . . SAID . . . DID . . . YOU . . . GET . . . THE . . . JOKE . . . YOU . . . FUCKING . . . IDIOT?!” It sent me into hysterics more than the joke ever could have, not only because he slowed down his speech to talk to me like I was an idiot but also because he sounded like such a “fucking idiot” himself speaking to me that way, parroting the way that people sometimes speak to the hearing impaired, as though they are mentally impaired as well.
This is now a running joke between us, and one that has been picked up by others close to me. If I don’t hear him after a couple of times, he’ll come out with something like, “What . . . are . . . you . . . going . . . to . . . eat . . . tonight . . . fuck-er?”
If I have to go blind and deaf, I’m glad I can have a sense of humor about it. I don’t mind being teased, and sometimes the things I mishear can be hilarious. Caroline and I were having lunch with a friend one day, and he asked if either one of us had ever gotten toe fungus from showering at the gym, to which I responded, “Yeah! I had it on my bagel this morning.” I had heard “tofu cream cheese.” We couldn’t stop laughing.