It's OK to Ask About the Daisies

Imagine that you were born with a rare birth defect that causes you to grow daisies out of one side of your head, instead of hair. Most people are very polite and respectful of your privacy, so they don’t say anything. But you know that when an acquaintance is describing you to someone else, they probably mention the daisy thing. “Oh, I’m sure you know who she is,” people say. “She’s the one with the daisies? Growing out of her head? You’ve seen her, right?”

Part of you is grateful for people’s polite discretion. You do not, after all, want to be defined as the Daisy Lady. You want people to know you as a good mom, a skilled worker, a nice neighbor. But sometimes you wish people would just ask about the daisies, because you know they notice the daisies, and God knows you notice them—they’re a little hard to miss when you’re brushing your teeth in front of the bathroom mirror—and it would be such a relief to just talk about the daisies and then move on.

This is, of course, a completely transparent metaphor for living with a physical disability like mine—osteogenesis imperfecta (OI). Obviously, seeing as I blog about having OI, am writing a book about having OI, worked for the OI Foundation, and can explain the medical intricacies of OI ad nauseum to anyone who cares to ask, I don’t have a problem talking about my disability. I talk about it with close friends and family, with doctors, with my co-author and editor. But in the midst of my daily routines—at the pool, at my kids’ schools, at church, at the grocery store—I usually don’t talk about it. Which makes complete good sense. There are words for people who go around advertising their personal stuff inappropriately—crazy, nuts, cuckoo.

But in recent weeks, I’ve had conversations about OI with a whole slew of casual acquaintances. Two events brought this about. First, bestselling author Jodi Picoult released a book titled Handle with Care, in which the main character is a mother whose daughter has severe OI. (See below for my amateur review of Handle with Care.) Second, our local paper published an article about me, specifically about how I use our town’s indoor pool to do the water-based exercise that is perfect for someone with joint and bone problems.

As a result, all kinds of people I see regularly have asked me about OI. My primary feeling about this new interest in my skeletal problems is tremendous relief. Here’s this huge part of my identity that affects nearly everything I do, defines me in significant ways, and is obvious to anyone who gives me more than a passing glance, but that I rarely mention in everyday conversation. Talking about OI at preschool and Stop & Shop affirms that my scars and limp and crookedness are not shameful and inappropriate for polite company. They don’t need to be hidden, either under bulky clothes or in hushed, private conversation with only the most trusted friends.

A few weeks ago, I was finishing up my laps at the pool when a man came over to ask if he could have my lane. As I was gathering my things, he said, “Forgive me for asking, but how did you get all those scars?” I told him about my fractures and surgeries, we chatted for a few minutes and then said good-bye. At the pool, I feel especially vulnerable. Most women feel a little self-conscious in a bathing suit; add some crooked bones, scars, scoliosis, and hammertoes to the mix and you’ve got a recipe for a major self-esteem crisis. In any public place, especially one where my body is so exposed, some part of my brain is always wondering what people are seeing, if they wonder about what they see, if they make assumptions, and what assumptions they make. So having someone ask a simple question, then answering the question and moving on, was—again—a relief. Much simpler than all that wondering.

What’s so strange about my newfound appreciation for people who notice and ask about my disability is that I spent so much of my life wishing people would not notice. When an elementary school teacher assigned us to write an autobiography, my mother kept asking me how on earth I could completely leave out the part about being born with OI and having 30-odd broken bones. I just didn’t want to write about that, I answered. (Clearly, I am now making up for lost time.)

One of the toughest things about OI is that, in addition to the obvious traits that scream “disability”—wheelchairs, crutches, braces, scars, limp—there are frequent casts. Anyone who has ever broken a bone knows how tiresome it is to constantly answer the question, “What happened?”, but at least they get to tell a good story about a ski accident or spectacular slide into second base. With OI, it’s all, “I tripped on the phone cord,” and, “I sat down in a funny position and my leg broke.” People often want to tell their own broken bone stories, thinking they have some wisdom to impart, and I smile and think, “Oh, sister, if you only knew…”

One of the toughest things for me as Leah’s mom is that when she has a cast, she wants to simply ignore any and all questions about what happened. And I have to convince her that she must be polite and answer, when really I want to advise her to look at her questioners blankly and say, “What are you talking about? My arm always looks this way. This isn’t a cast.” Or tell them that her parents make her get up on the roof and clean the gutters, and this is the fourth time she has fallen off and broken something. I have learned that it can be a relief to talk about OI, but I still understand Leah’s desire not to.

People with disabilities have lots of opinions about how appropriate it is for others to ask about their illness or injury. Some welcome questions as a teaching opportunity. Others resent the invasion of privacy. I can go either way. I appreciated the pool guy’s question because he showed genuine interest in my answer, and made no assumptions. In contrast, I resented a comment that a super-fit hiker made as Daniel and I were trudging up a steep, rocky path to a waterfall in Yosemite National Park in 1998. As he left us in his dust, hiker-dude gushed, “Wow, I really admire you for doing this," which I interpreted as, “I can see you’re struggling because you look so tired and awkward, but good for you, lame girl.” (As a general rule, being admired really pisses me off. Admiring someone who is disabled isn’t really all that different than admiring someone who is beautiful. In both cases, it reduces a whole person to their most noticeable trait.)

I’m happy to answer when one of my kids’ friends ask, “Why do you have those scars?” But I have no patience for gaping and staring. A few weeks ago, I was helping Meg and Ben choose videos at the library, and this little girl couldn’t stay away from me. She just stood there in the video aisle, halfway pretending to look for a movie, while actually stealing sneaky sidelong glances at me. We shifted to the other side of the display and she followed us, eyes glued to my legs, looking away if I glanced at her, then going right back to the staring. This kind of thing makes my blood boil. I am sorely tempted to say something really mean like, “The reason I’m so small is that I’m an evil dwarf who likes to chop little girls into pieces and eat them for dinner. Now stop staring or I’ll start with your eyes. Have a nice day.” Please, parents, teach your kids that it’s simply never okay to stare at people. Never. Ever.

But I’ve decided, finally, that questions are okay, if they are polite, straightforward, honest, and free of preconceived notions. Sometimes the nicest thing you can do is just ask about the daisies.