“Do what you delight in—and do it no matter what.” Susan Spencer-Wendel (1966-2014)
As I looked around the congested airport, I began to cry. I couldn’t avoid the strange smells and angry shouting between the Karachi airport police and three men dressed in mostly white cotton galabeyas. A deep feeling of sadness began to overwhelm me. The day before my Uncle David had driven us to the airport at JFK. While my Mom strolled my younger brother Teddy around with my older brother Peter hanging on, I had spent the time sitting with my uncle who held my one-fingered hand as he chatted with my father until it was finally time leave to the gate. Meanwhile, my Aunt Charlotte (“Lottie”) and her husband, Uncle Charlie, had also come to see us off, armed with presents for me and Peter and Teddy. My favorite had been a single silver heart with a tree carved inside that held a single pearl. “Meggie, wear it in good health!” I didn’t know what that meant but I instantly smiled at my great Uncle and Aunt Lottie in appreciation. That was the last time I would see my Uncle Charlie.
Meanwhile, in Karachi, as I stared at my new surroundings there was no question they were staring right back. “Tsk, tsk” I would hear the sounds coming from practically anyone that passed that noticed my difference. Although I instinctively struggled to hide my hands in my pockets, the need to simultaneously hold my carry-on bag meant I would be exposed. I continued to cry.
“Meggie! Look how much you have grown….and that beautiful, long dark hair! Your friends all must be so jealous!” We were in Cedarhurst, Long Island, having just returned from our latest international home in Pakistan, visiting Aunt Lottie.
Although barely cleared 5 feet, what they lacked in height my grandmother Dorothy (“Dottie”) and her sister, Lottie, both more made up in strong and vivacious personalities. Dottie’s hair was on the reddish end of the spectrum, while Lottie’s was a pretty blonde hue. Sometimes the following year I would notice that Lottie was the red-head and my grandmother the blond.
At eight, I was too young to focus on my great Aunt’s recent loss of her husband. Instead, I found it intriguing that anyone would ever take one look at me and project any feelings of jealousy. No, it simply wasn’t possible. Notwithstanding my one finger on each hand, shortened forearms and one toe on each foot, I had already discovered what type of attention my best friend in the 2nd grade Kirsten (an Arizona transplant living in Islamabad) could garner simply by having gorgeous blonde hair.
I looked up at Dottie and Lottie and quickly felt the positive jolt of their affection. The irony of focus of the conversation didn’t escape me. I would take any hair colorif I could just have ten fingers and toes, like everyone else. Even if someone liked my hair, I was positive they would never want to trade places with me, given my lot in life. When I finally thought to object, Lottie interrupted me and changed the subject. “Meggie, you are so lucky to travel to all those foreign countries. What I wouldn’t do for the life experience you are having!” I thought she was crazy. Traveling was difficult.
“You always want what you don’t have.” This past weekend, in anticipation of her first piano recital, Savanna was getting her hair done and insisted on having her curly blonde hair blown out straight. The comment came from the hairdresser, who too had blonde hair, but was naturally stick straight and told Savanna she wished for her curls. I presume having a first recital is both exciting and somewhat stressful for any family, but for ours, there was certainly a twist, for two of our three children were to perform.
A few months ago, I noticed that the baby grand piano we had inherited from a friend was gathering dust. John wasn’t interested in learning. Ethan, with little interest in things musical wasn’t interested. Charlie, born with two fingers on each hand was pre-occupied with his many other interests. So I consulted with Savanna and signed her up for lessons. I confess I longed to re-live my childhood tradition of evenings singing by the piano while my father accompanied me with the music of Rodgers and Hammerstein and Rogers and Hart. I had even taught myself to play (as best I could). Eventually my brother, Peter, expressed an interest and received a few lessons, but it never occurred to me (or my parents I presume) that I should take lessons. And so I hadn’t pushed the boys.
When I got home the night of Savanna’s first lesson I heard dutiful plinking of the piano, trial and error, but progress nonetheless. To my surprise, however, it was Charlie at the keys. “Where’s Savanna? How was her lesson?” I asked Charlie. Without looking up, he told me she was taking a bath. I initially went to the kitchen to make dinner, the sounds of Charlie’s piano adventure still in the background, but then reconsidered my steps and returned to the living room. “Char, would you like to see if the piano teacher has room for you too?” I decided to make the offer less about his abilities and more about her availability. “Mom! Really? That would be so awesome!”
Three months later, Savanna has worked hard at the piano and appears on par with any seven-year-old with only a few months of lessons. Charlie, on the other hand, has surpassed my wildest imagination. Not only can he readily play the music the teacher provides, he also teaches himself tunes he likes from the radio or from movies we’ve seen recently. He’s also quick to figure out how he can interpret the song into chords he can play with his fewer digits. Not to mention that ever since his first formal lesson, John and I find him practicing at every opportunity.
This past weekend, the day had finally arrived—the kids’ first piano recital, which was comprised of all of the music teacher’s students from 1st grade through high school. As soon as we took our seats in the pews of the Church, Charlie was directed to sit with fellow 3rd graders (most of whom he had never met) while Savanna was seated with the 1st graders, including her best friend from school whose mother, my close friend, had recommended the teacher. As I focused on Charlie, I noted he seemed completely comfortable and even enthusiastic about his forthcoming performance. However, when I looked over at Savanna, I immediately noticed that her best friend was crying, visibly upset about something. After some mild commotion, the teacher was called back to speak to several students and of course I was intrigued. “What’s going on?” I asked my friend. She grabbed my own one-fingered hand and led me to a place out of earshot of the kids and with tears in her eyes replied, “Meg, she was crying because those kids noticed Charlie and were saying not nice things about him, making fun of his fingers. She loves Charlie and she’s sensitive to his feelings even though I’m quite positive he didn’t hear a thing.”
I quickly thanked my friend and made several mental notes. First, given he was about to perform in front of crowd, I was relieved he did not overhear the other kids talking about him. That would’ve thrown him off his game. Second, Savanna, who must have witnessed the events, was unfazed. Clearly hearing kids talk about her brother’s difference was not new territory for her. Finally, even though her daughter seem once again focus on the recital, I could tell that my friend appeared personally upset by the incident, and so I whispered, “Hey, don’t worry!” Wanting to ensure I could crack a smile I added, “Thank goodness for these types of things or I wouldn’t have anything to write about in my blog.”
After a half hour of hearing other children perform, it was time for Charlie to play “Happy” by Pharell Williams. To our delight, he played it perfectly, and even added a bow with a smile that melted my heart. That night, as I reflected on the evening’s emotional twists and turns, I caught wind that Susan Spencer-Wendel had recently died of Lou Gehrig’s disease. Spencer-Wendel’s recent memoir, Until I Say Good-Bye: My year Living with Joy chronicled the “final, wonderful” year following her diagnosis where she traveled the world. Her philosophy was sage: “You can’t fight nature, and don’t fret about what you can’t control. Do what you delight in—and do it no matter what—so I did.” When typing her memoir became too physically difficult, Ms. Spencer-Wendel began to type her manuscript on her iPad, using her thumb, the only digit she could control. She knew that even though she no longer had the use of most of her hands and fingers, she made the most of it and remarked before she died, “I was going to write no matter what since I still had one helluva thumb!”
As the week has come and gone, I can’t help but think about how incredibly proud I am of our son Charlie and his great accomplishment at the piano recital. While so many people spend their lives wanting what others have (I was one of them for years), Charlie is willing to get up in public and demonstrate that he is willing to have what he wants, no matter the effort it takes to get there.
Personally, I am not that fazed anymore by kids that make fun of my children. When I get past the immediate sting of knowing other kids may be making fun of my child, I know that Charlie is more emotionally and intellectually in touch with who he is and what he can do, than those kids who haven’t even begun to appreciate what they may be lacking in life, now or someday.
Near the very end of her life when her book was published, Susan Spencer-Wendel was interviewed by NPR’s Scott Simon. She was having trouble speaking and her husband helped to answer some of the questions. The final exchange resonates, at least to me and my family:
Mr. Simon:”Let me ask you about some of these trips. You went to the Yukon to see the Northern Lights.”
Ms. Spencer-Wendel: “Yes.”
Mr. Simon: But the lights were off (not visible) at that time?
Because Ms. Spencer-Wendel’s answer was inaudible, her husband interjected, repeating her reply. “As you know, life ain’t perfect.”