When speaking to groups about Caroline, my novel that I promote elsewhere on this website, I acknowledge that once a book is out, it’s no longer the exclusive province of the author. As I found during a recent Zoom meeting with a Florida book club, readers are still giving me insights into my own novel.
I’ve said that Caroline explores the responsibilities we have to the people we’re closest to. How alert, for example, should we be to a partner’s mental state? If we become concerned, what should we do? What must we do?
One of the book club’s members said that ever since her husband sustained a leg injury, she’s had to put on his socks for him. Having undergone my own leg surgery, I told her about a device that enables a person to pull on socks by themselves. She said he has one but won’t use it.
Though she told her anecdote humorously, it had me considering the responsibility, if any, that someone suffering might have to try to ease the burden they unwittingly bring to those who love and care for them. But is that a cruel question? It might seem harsh to expect a person who is unwell, physically or psychologically, to think beyond their own requirements.
But even though we tend to think in terms of the helper and the helped, help is best seen as a two-way street. A caregiver also needs all the help they can get. It’s true about partners, family members and friends, as well as nurses and other professionals. Even more important, by showing consideration, the suffering person should gain, or regain, a sense of self-respect. Quoting Jesus, St. paul said, ““’It is more blessed to give than to receive” (Acts 20:35).
After my own recent injury, I usually put on socks myself, but sometimes my wife does it for me. It spares me a somewhat time-consuming, mildly painful experience. She wants to help, while I want to ensure she knows I don’t take her for granted. It feels like a good balance, so long as I don’t cause her anxiety by insisting on overdoing the independence thing and she doesn’t try to prevent me from pushing against my limitations.
There are circumstances where it’s impossible for a disabled person to extend themselves by more than a nod, a hand-squeeze or the blinking of an eye. Even then, that person’s gesture of concern, though emotionally fraught, could ease the daily hardship for both the caregiver and the one being cared for.
Concise wisdom, like that handed down via St. Paul, is invaluable, but immersion in recognizably real-life predicaments, as recreated in a thoughtful novel, can drive it home.
I got a second insight from that book club meeting. As I’ve detailed in an essay and a book review posted to this website, there’s almost no mainstream fiction with a blind principal character. Remedying that deficiency, as I seek to do with Caroline, would seem laudable. Indeed, although this aspect of the novel is incidental to the more universal storylines, a reader observes how Nick, the blind protagonist, manages his professional and private lives. It’s equivalent to learning from other novels about nineteenth century St. Petersburg or life on a South Carolina slave plantation. Still, could placing a blind protagonist in the middle of a mainstream novel be little more than a gimmick?
Independent disabled people, like Nick, shun sympathy. Indeed, almost everyone, disabled or otherwise, recoils from it. But sympathy for a person who is blind or otherwise disabled is a normal reaction, and perhaps it speaks to our better selves. Nevertheless, it can set limits. Because of the sympathy extended to them, disabled people may find they aren’t expected to live up to the same standards as others. Or they may yield to other people’s generosity rather than develop their own skills, resumes and relationships.
I first encountered this conundrum when I was fourteen, months after losing my vision. At a group event where everyone else was sighted, my father had me try my hand at ten-pin bowling. Despite my abysmal performance, the organizers awarded me first prize—a fedora. Instead of uplifted, I felt deflated, even humiliated.
That’s the negative side. Thanks to the book club discussion, I realized there’s a much more affirmative reason why sympathy for disabled people can be misplaced. Nick can be troubled and sad, but he can also be cheerful and happy. Yes, he needs special forms of assistance, such as readers, but don’t we all need something—eyeglasses, hearing aids, a daily dose of coffee, a friend’s kind words? There are times when Nick misses the sight he used to have, but in the course of every life, we’re all afflicted with longing for something or someone. Time passes. Longing transforms into adjustment.
More important than these moments of weakness is that a life be full. In an unpublished memoir, I write: “The most disabling fate of all would be to have no stories to shape both mind and heart.” For at least some readers of Caroline, the impulse to feel pity for Nick fades away as we witness him leading a life that is as rich and full of incident as any nondisabled person’s.
Two related ideas emerged from that Florida book club discussion:
— A disabled person would do well to extend a hand to the helper.
— The lives of disabled people can be too full to admit sympathy.
It’s easy to write those two sentences now. However, it took a discussion with thoughtful book club members for me to give them form. Although not Caroline’s primary themes, they point to the value of a mainstream novel with a disabled protagonist.