Remission is possible. However, there really is no cure.” Any patient hearing these words feels upset, frightened, and bewildered as processing such information is difficult. Helplessness and even thoughts of “why me?” move through the mind. What difference does attitude make with such news?
When he was eleven, one of my grandsons learned he had a medical condition that had no cure; the concept of “lifelong” must have been beyond his comprehension. I took him for routine blood work, watching his face as a needle stabbed a vein for his fluid. I had him focus on my nose or challenged him to out-stare me, something silly so he wouldn’t see the needle pierce his skin, nor the vials of blood being collected. I, too, didn’t look. When there were many people ahead of him at the lab, he paced but refused to show emotion.
After each lab visit, we went to a park, a plant conservatory, or other places he could look forward to going after the appointment. Among the life of trees or blooms, we both were aware of the determination of nature and survival, and there was a sense of peace with this connection. He understood he had a chronic condition, but we didn’t speak of it. When he was ready to ask questions, or just vent, I’d listen; he knew that I would. Once we had a picnic on a bench and dropped breadcrumbs for the birds to eat. He spoke about a trail we’d taken when he was little called a “bird trail,” and how the flying creatures actually came to his outstretched palm and gently pecked at the seed he had there.
“One’s spirit—in a natural sense that which animates us— can’t be seen but does exist.”
A gastroenterologist gave him pills to quiet inflammation. A stand-up comic could have made a funny routine of the volume in his daily plastic container—some to take in the morning, some in the evening, some with food, some without. Eventually, he had to take prednisone for a year, along with the other meds. His appearance changed as that drug causes bloating of the body, even the face. A few of his friends began to distance themselves. No one could “catch” his condition (it was likely genetic), but it wasn’t “cool” to be seen with a person whose body was so puffed up. Outwardly, he didn’t complain and accepted that this was necessary. Was that because inwardly he was beginning to realize that he had both the power and ability to pattern his life according to his spirit, and that was elevated? He chose a sleep-away summer camp because he wanted the experience and made no excuses for his appearance; campers must have thought he was simply obese. The camp nurse who administered his meds knew otherwise.
Just as my grandson felt connected to me, his medical caregivers, the greenery in the parks, and the snow-dusted bare branches, he connected to others and to his environment. What I noticed was that his spirit—in a natural sense that which animates him—was as real as wi-fi or radio waves, which can’t be seen but can be verified.
Eventually his condition made it necessary for him to have infusions of a toxic chemical that would put him in remission, but the infusions probably are for life. Arrangements had to be made at a facility near campus when he was in college. His attitude was never “another needle in my arm and chemicals dripping in my body for hours at a time each time—why me?” Never.
Now when he’s in town for treatment, we chat and play Scrabble—the board only facing him as he’s got one arm in a blood pressure cuff and the other hooked up to a machine via a needle in his vein. We don’t talk about it and behave as if this procedure is nothing more than an inconvenience. He is an amazing young man with quiet courage and a life-oriented attitude. Personal growth, one’s natural spirit, can’t be readily seen but does exist. His focus on what he has, rather than what he hasn’t, displays that to me.
His attitude has affected my life. My arthritis aches and pains are put in perspective as they should be. My half-paralyzed face, that happened more than a dozen years ago, and changed the way others see me and the way I can communicate by expression, has definitely been taken into a different dimension. I see courage in that grandson’s face and everything he does, and I’ve realized that my personality is unaltered and only the facade has changed. Only my appearance isn’t totally “me,” but all the rest, the important things, definitely are. My journey (with the added wisdom that comes with aging) to be kind and caring, protect nature, and continue to hope for harmony on earth, has nothing to do with a fully functioning face. The boy, at age eleven, began to make me think about whether I smile because I’m happy or I’m happy because I smile. Essentially, it makes no difference if someone else sees I can only smile with half a face. Within, I’m smiling because of happiness or to make me feel happier. He lives that. His quiet sense-of-self, his acceptance about what has to be, and his sensitivity to others has also allowed him to believe in possibilities of friendships, employment, and so forth. He lives truly knowing that life is not to be taken for granted. Who he is, not a medical condition, defines him. This is what he’s taught me.
An earlier version of this column was published at the Jewish Press in March 2016.