(I was trying to avoid writing another post that stems from my experiences in 2005, but I’ll trust that you’ll appreciate it for its relevance and look forward to more dynamic inspiration sources in future posts. The thing is – there are some experiences that anchor us and serve as fertile soil for self-discovery. Here is a little tidbit I picked up along my path.)
You turn a corner in the grocery store and, coming down the aisle, you see a woman with one arm. She begins walking toward you. Where do you look? What do you do?
You are walking in the park where a severely scarred man sits on a bench. As you come nearer he looks up and your eyes meet. What do you say? Where do you look?
You see a friend who just had her baby. Excitedly, you come close to get a peek at the tiny child and see that her little mouth is deformed with a cavity cutting through her upper lip to her nose. What do you say? What do you do?
Before I became the elephant in the room, I had no idea what to do in these situations. I would look straight through the lady in the baking aisle. I thought this would help her feel normal. I might divert my eyes from the scarred man, so he wouldn’t feel my stare. I might smile at the new mommy and talk about anything but her baby’s cleft palate.
In 2005, when I was diagnosed with breast cancer at the age of 24, my husband and I had two little boys. As my surgeries and chemotherapy treatments began many family members took turns flying up to Alaska from the lower 48 to be with me and my family. They were an amazing help to my little crew.
So that my helpers could know how best to help in our home, I had two main rules. Rule number one: if at any time my little boys wanted their mommy, no matter my drowsiness, nausea, etc., they could come to me. I would be available to them. Rule number two: I wanted to do the grocery shopping. It’s a funny thing, but buying groceries for my family was important to me. As my hair fell out I needed to make a choice about how to present myself in public. A dear lady from church ordered a cute wig for me and I used it a time or two. Chemo and Lupron threw me into a temporary menopause and I got a good taste of the lovely hot flashes associated with that phase of womanhood. The itchiness of the wig and the hot flashes were too much for me. One day after church I pulled the wig off, my skin crawling from the irritation, and I swore off ever wearing it again. I began thinking that bandanas and handkerchiefs were going to be my cover of choice. There were times, though, that even the bandana was too hot.
I didn’t want to make a spectacle of myself. I didn’t want to be a distraction in church. I didn’t want to make others uncomfortable but, dang-it, I had cancer. I was already feeling so powerless to control my body. I didn’t feel like I should be required to endure greater anxiety and discomfort for the sake of silly social norms. For me anxiety and discomfort came from the wig and sometimes the bandanas and knitted caps. For other cancer patients the anxiety and discomfort of not wearing a cover on their head would outweigh the discomfort of the various head covering options. In the end I opted for skin with the occasional scarf/head wrap.
I was nervous at first. Wondering if my brazen disregard for social norms would receive fierce backlash. I was pleasantly surprised to discover that my church community was supportive of this. I was even encouraged in it as congregants would share what a great time of learning it was for their children to see and experience the cancer process with me. I was also pleasantly received by the other park-goers when I’d take my kids to play at our neighborhood park. Among my friends and neighbors I felt pretty normal. I noticed that my most poignant moments of social stress were at the grocery store.
There I was, pushing my cart down the aisle. A young woman, with a cart full of groceries, sporting a shiny scalp. Something was obviously amiss with me compared to what’s usually met with. After a few weeks, the lack of stubble on my dome indicated that I hadn’t just “Bic-ed it” for fun. As I made my way through the store I noticed, time after time, other shoppers just looking through me. I was the elephant in the room and no one acknowledged me. When I had hair people would warmly nod as we passed in the dairy section, or not notice me at all as they went about their business of choosing which brand of peaches to buy. Without my hair many would fix their eyes on their chosen sundry item and remain that way an unnatural length of time until I passed.
I did not take offense to this because I knew exactly what they were doing and why. I had done the same thing thousands of times. I found it, rather, as an intriguing observation that I wanted to learn from. What did I want from them? How did I wish they would interact with me?
I wanted them to look at me.
“I am not a transparent ghost. I’m not dead yet. I am alive and standing right in front of you. Look at me. Acknowledge my presence. You don’t have to give me sympathy, you don’t have to comment on my obvious oddity. Just don’t look through me. I don’t demand that everyone smile and nod my way, but if you notice me, it’s okay to . . . notice me.”
If you meet an amputee on the baking aisle and don’t know where to look, or what to say . . . look at her in the eyes and say, “Good morning.”
If you are caught looking at the man’s scarred hands and face . . . look him in the eye, easily smile, and say, “Beautiful day, isn’t it?”
If you don’t know how to react to the baby’s unexpected mal-formation you can offer, “She’s beautiful!” If you want, you can follow that up with, “Is her palate cleft? Isn’t modern medicine amazing, the way they can help us in all sorts of ways?”
I am very comfortable asking bold questions of other breast cancer survivors. I already know them on at least one fundamental level and so my ignorance of their situation is no longer a barrier. But, there are a billion other experiences which I haven’t had, so I am still unsure how my actions will be perceived and received. So I recognize that these suggestions are not 100% failsafe responses to everyone. Sometimes elephants like to be invisible.
I simply suggest that when there is an elephant in the room, if you smile at her or acknowledge him, the elephant usually transforms into a person. This approach can even work with heavily pierced, tattooed, chrome contact-lensed fellow-shoppers at the thrift store. (It’s fun, try it.) We know that we don’t look quite “normal,” but if you look in our eyes, and see us as a whole soul, you’ll make our grocery shopping experience a little nicer. Your smile will make our day at the park brighter. Beyond that, perhaps, you’ll remind us that we are not only a bald head, a webbed scar, a missing body part or a one and a half-inch gauge. That reminder is sometimes the simplest and most needful gift you can give.
It’s okay . . . Look at me.