It used to be easy for me to leave the house. I could go from waking up to dressed, made up & ready to go in under ten minutes, grabbing my wallet & keys on my way out. I was always a low maintenance creature, something I took a sense of pride in. Oh, I could go all out, but I didn’t, and didn’t have to.
These days, just getting dressed takes 20-40 minutes, depending on how creaky I am, and what I’m wearing. This has less to do with whether I am adorning something cute or tossing on yoga pants & a tank top, and everything to do with the extensive bracing process that has to be layered on for me to walk a distance further then the bathroom without causing damage or risking injury.
Then, to leave the house, and brave a world full of allergens I have to layer on an allergen mask & gloves and find my sunglasses which I have inevitably left in the kitchen, again… None of these items are unattractive, exactly, but they are noticeable, perhaps more so then my cane.
These are impossible to miss.
They are certainly what garner me the most stares. And the most comments.
I barely notice the stares anymore; most of them are quick, furtive glances. Most adults ‘know better’ then to stare, and ones who stare long enough, or hard enough, for me to notice usually get met straight in the eye which causes their glance to skitter away like a palmetto bug when you turn on the light. Small children tend to be the ones who stare, wide-eyed, asking up to their accompanying adult, “Why is she wearing that?” Brave ones say hello or wave. I smile kindly to them all, though behind my sunglasses & mask, I don’t know how much of that they see.
Sometimes a glance is not enough, sometimes someone says something. There are two categories of comments: startling rudeness & kind, complimentary curiosity.
And, of course, there are amazing folks who just treat like a person ignoring the mask, gloves, walker & extended accoutrement of my disabilities. People who, I think, actually see me. It’s not that they don’t see the mask, folks aren’t blind. It’s simply that sometimes people actually see me as a person, not as a disease with a person attached.
This last weekend, I was mostly surrounded by this last kind. I attended a mini-conference here in Charlotte about the web, and why we love it. Which rocked. I came away feeling energized and excited and a little more alive. Then I was out, briefly, for a dear friend’s birthday where almost everyone knew me from before.
During the entire time I felt like a mostly normal person. Talking to friends, engaging in chatter with visitors to our fair Queen City, catching up briefly with twitter buddies, popping over to the after party & engaging in conversation with the speakers, hugging dear friends (while my body could stand it) at dinner. I felt, despite the lack of food, drink and skin contact, so very much alive and like ME.
With one shining exception:
Some random guy shows at dinner, friend of my friend’s friends I guess, and pulls up a seat beside me. They introduce him to the birthday girl, across me, and momentarily pretend I don’t exist. Then, it happens.
This guy gives me a once over, sitting there in my cute top, skirt that’s short enough it doesn’t cover the top of my knee braces – black from toe-to-thigh, gloved hands, blue mask and butterfly hairpin. I looked pretty hot for gimpy that day, and several friends had said as much, so I was unfussed. People look at me. I’m used to it. But then, he says, in what I imagine was probably meant to be a quiet tone, to his friend, “What’s up with this chick?”
As an attractive woman who was a massage therapist for nearly a decade, I learned long ago when it best to ignore comments and when to assert myself to establish boundaries. So I let my smile touch the skin around my eyes, (my sunglasses were off and my mask was on) and turned, offering my right braced & gloved hand, which he accepted.
“My name is Summer.”
“Hi… Are you sick or something?” in a really odd tone.
So I paused, thought briefly before I answered, and with as much lightness as I could muster, “I’m not contagious, if that’s what you’re asking.”
“Well you could just be dressed up… like an early Halloween costume or something.”
I am rarely speechless. Most often a pause in conversation means I am thinking, but this time I was blown away. I was glad my mask was on because my jaw literally dropped slightly open. I stiffened, shocked. I remember scanning the tree line for a response, like one might swoop down and bite his head off for suggesting that someone would willingly, or willfully, dress as someone with a disability for fun.
I had options: I could ignore him, I could tell him off, I could attempt to explain, or I could sit there trying to figure out a way to not make my friends birthday a three hour lecture on disability in general and my health in particular. I remained frozen for what felt like a long time.
Then my sweet friend says, “Summer leads a very interesting life.”
I remember breathing again. Then some commentary about being a spy or a ninja from the dudes buddies, and maybe he best leave me alone. I smiled, remembered why I loved her so so so much, and let the smile actually reach my eyes this time. Disaster averted.
This is the rare occasion. In the six months I’ve been wearing the mask, only two people have had the nerve to speak this way to me. Though, the looks from police & security during the DNC were priceless. And I’ve seen people turn a corner, come face-to-face with me and watch a range of emotions play across their faces. Many turn, step aside, or scramble back. But mostly I ignore the looks, and usually only remember they happen because the person with me mentions them.
Alternately, I have gotten many really positive comments & questions.
At HerosCon I received multiple compliments & had a lovely chat with a young man who asked about my mask in exactly the right way, in a sincere tone, “Can I ask what’s with the mask?” Considering the number of folks present in cosplay, it was a fair question, and when I explained he maintained a genuine conversation with me and even flirted with me. I didn’t even realize right away, I’d become so accustomed to being treated like a disease with a person attached.
A few weeks ago, in Target, while looking at the ELF display for under eye concealer (my sleep pattern means make up is required to look rested) a woman walked past me, then turned back. She smiled, complimented me on my pretty blue mask, and told me she was a cancer survivor and when she was going through chemo that to leave the house she had to wear gloves & a hospital mask to protect herself. She thought it was great I’d found attractive, reusable options, and she told me she really felt compelled to say she was happy I was out doing something as simple as shopping because she knew how hard it was when you’re sick, then to have all these people looking at you. We stood and chatted for a while, it was really nice to have someone, even for a moment, who understood how I felt trapped behind my mask.
I’m an emotive person, yet I don’t lack subtly. I have been grateful, these past six months, for my years of theater experience, where I learned to speak clearly, whisper from a stage & make movements evoke emotion. All of the things that previously made some people see me as melodramatic serve to communicate thoughts & emotions that are missed in the subtle play of lips, eyes and tiny facial muscles covered or shaded by my mask & sunglasses.
Not that I don’t enjoy that I get to keep my wry smirk to myself. Things which amuse me, and probably only me, stay tucked away behind blue lace & carbon filters, hinted at only with a slight quirk of an eyebrow. No need to keep a straight face if no one can see it.
The mask also covers my broken tooth, still uncapped due to finances & lack of any kind of dental care, from February’s concussion. It’s absence is something I am keenly aware of during the moments I take my mask off to engage in conversation in loud, close or safe quarters. My braces, boxing boots, gloves, walker or cane – none bother my sense of self like that missing piece of tooth does.
But really, it is how people treat me that makes all the difference.
Behind this lace, beneath these braces, is me: woman, lover, friend, massage therapist, tea blender, business owner, designer, artist, geek, book lover, writer, kitty snuggler, idea chaser, dream builder & real person. I am a blogger, cook, writer & full-time patient. My diseases may define how I have to live my life, but they do not define who I am.
It is the times people see this first that help me feel alive, real, whole.
Which brings me back to Webafternoon. It was an awesome mini-conference, and I am super glad Bermon got a ticket to me. Unlike a lot of technically focused events in Charlotte, there were a lot of new faces, and most of the speakers – all but two – were folks from out of town. New ideas, new voices, new concepts, and a chance to look at the Internet from a perspective that wasn’t just design or code: total awesomeness.
We got there a little late, snatched seats in the front near some design folks we know, which was perfect because it left room for my walker, and settled in to catching up with our neighbors. Several folks were glad to see me out, inquired after my health since its been so sketchy lately, and I got a chance to see how everyone was. Before heading to the after party, I got to take a quick spin around the 277 in a friends new-to-him convertible.
But the best moment for me was walking in the door of the bar and the last speaker, Carl Smith, saying to me, “Thank you! You gave off such great energy during my talk, nodding and being right there, it really helped me.” I got to smile, and once safely inside, take off my mask and have extended conversations with him and a couple other speakers. It was great, and while I did mention in passing that I write in the illness/health sphere no one pried, turned the conversation or made my disease the center of it, I got to chat about work, experience & ideas rather then illness, frustration & medications.
I was a person who had a disease and what that disease was didn’t matter, because I was being engaged as a person – not a patient, not a case study, not an inspirational survivor – just a person with experience, ideas, and thoughts. I was just me.
The level of warm gratitude I feel about that can not be expressed.
It’s not that those other things aren’t part of who I am, but sometimes my humanness gets lost in those things.
Which, you know, really brings me to why I love the web: I get to be a person, whole, unmasked, flawed and afraid, brave and courageous, hungry and scared, frustrated and thrilled over things little and big. The one thing that my life is these days is authentic: what you see is what you get, and those of you who join me here and on twitter and Instagram get all of my life, sometimes slightly out of focus and trembling, other times perfectly lit and aglow, but it’s real.
Then, when we meet in person, you see me not just my diseases, struggles, braces & mask, but the person who lives with them. And it gives people who meet me in person the chance to look past the filters & aids and see the woman behind the mask if they choose to look.
There is no greater gift then to be really seen. I am so grateful. And goodness, does it ever make me love the web.
* * * * *
There have been several patient. medical and web conferences lately. Expect more posts pondering the intersections of the internet, health, illness, and humanity. There’s a lot of stuff floating around in my head.
I am still on hefty doses of Prednisone. This will remain so for a few more weeks. At which point we will reassess my immune system. That’s all the news that’s fit to print on that topic for now. I’m just waiting.
I’ve got a few recipes I can no longer eat, but you probably can, which I am hoping to get up soon. The fall weather is making me fantasize about soups.
I’m also very curious about how you responded to, felt, or wondered when you saw me, or someone else, in a mask – either fancy like mine or the paper hospital kind. Feel free to comment below – there’s no judgement – I am aware that I make up stories and ask questions in my head, so I’m intrigued to see if there’s a way to my mask less unsettling to others. There may not be, but I would be happy to explore options. You can always email me at summerATsummerplum.com if you don’t want to leave a public comment.