AS Warriors

My Struggle With Three Simple Words

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charis23

How are you?

Just three words.

Just three words silence my voice but incubate my thoughts.

The responses I wish to deliver get caught in my throat as I open my mouth to speak; I gag wordlessly without any outward signs of panic; I feel a glass wall erect itself to support and contain my stoicism while I suffocate. The words I want to use expand in my chest like air being pushed into an empty balloon, threatening to leak out of my mouth in a jumble of hot air and exhaustion.

Usually I manage to push aside the wordlump in my throat so I can still breathe and respond in a socially acceptable way. I say polite things, or I say I’m not ok and try to change the subject. Or I stand there awkwardly, ashamed and lime-lighted, drowning in my reality until I realize someone is waiting for my next move.

I recently visited my alma mater, Meredith College, to attend one of our many quirky traditions. Every four years the staff and faculty give a fantastically energized performance of Alice in Wonderland. Alumnae are invited to the final dress rehearsal that becomes a reunion as classmates from all graduation years gather to wait for the doors to open.

I was excited to see all these people with whom I spent four fantastic years of my life. But I was also terrified.

I wore a fancy dress, heels, makeup, and my hair down. These were things I never did in college unless I was going to a dance or banquet; I attended many classes in my pajamas or in sweaty clothes directly from soccer practice. I wanted to pass as healthy tonight, so I overdid my appearance. And people noticed. And it hurt. It was a bad idea, but I’m a good actress. Or so I thought.

Many people I saw are my friends on Facebook; they see my updates and blog posts. They know how sick I am. Others not so much. But all of them asked the same question, because it is THE question we ask by default, “How are you?”

Often, it was followed by, “You look sooo good! So pretty, so healthy!” This parallels what people struggling with invisible diseases often hear: “But, you don’t look sick,” usually partnered with the unspoken, “So you must be fine.” In this situation I knew my friends meant what they said – I DO look good. They weren’t challenging my diagnosis. I knew deep down their intention was to make me feel better about myself; we humans do a pretty good job convincing ourselves that other people are healthy if we think they are.

But I got so tired of answering THE question. I knew many of my friends really meant it; they truly believed they wanted the full truth. And they had no way of knowing that assuring me how good I look triggered the weighty assumption that because I look good I shouldn’t be sick. And they can’t possibly realize how pregnant those three words are with meaning, and how unprepared they are for the real answer. I really wanted to say, “I hate that question because it reminds me how sick I am and how much you really don’t know the magnitude of my pain and how much it consumes me and how impossible it is to put all that and more into a six-word reply.” I really did want to answer their question and say that I’m performing tonight as much as the people on stage. I wanted to rip off the nice, pretty facade so they could see how much I was hurting. I wanted to give them a true monologue that would show the enormity of my daily struggle to find a life worth living. But I knew the situation wasn’t appropriate. Even being sick, I still understand what society has taught us about small talk. Small talk should not be big talk unless it’s good news. And I was raised to be a polite, southern gentleperson.

Unfortunately, I was terse with some of my friends, keeping my response to a strained minimum. I was bursting at the seams wishing I could fade into the background so I could escape these interactions. In some conversations I tried being abruptly honest. “But you look sooo good” was met with “But I’m not. I’m really not. I forgot my cane and my pillow and my ibuprofen.” I witnessed their brains sprouting legs to run the other way screaming while their body remained, waiting orders. They didn’t know how to respond; I’d silenced them. In nice southern fashion I attempted to bury what I’d just said with some artificially joyful comment or joke. I silenced myself so their comfort would return. Southern hospitality.

I’m really sick. Can we change the subject please? This is a fine line to draw. It’s fuzzy. Where’s the balance between finding out how I am and smoothly transitioning to talk about my favorite food or bikes or our favorite classes in college?

I wanted to scream. I kept myself distant. I’m no longer the role model who bounced around campus doing cartwheels and wearing silly outfits for St. Patrick’s Day, who sat for hours encouraging people to go far in life. I’m no longer the invincible student athlete and the full-of-optimism, care-free person they once knew. Why destroy it for them now? I am now an old, sickly, grumpy, distant person. And even though I wanted to be there, I was in a lot of pain and tired. And when the performance was over, I was too spent – both physically and mentally – to navigate crowds so I could greet my favorite former professors and staff. I was ready to leave. And I did.

Often it is left up to the person with the invisible illness to guide the conversation away from the sensitive stuff, but when everyone is asking THE question, it takes all my energy to just occupy space and stand obediently in a fog while my brain enters standby. Voices merge into one buzzing echo: “How how how are are you you you you?” It is like people are walking up to me with a handheld mirror. Instead of asking me how I am they hold the mirror up in front of my face and on it is written, “Hey, you’re sick!” People and their greetings become a reflection of my own insecurities, my pain, my worst fears. Asking me how I am makes it impossible for me to look into the future because all I see is myself and what I’ve been through. It’s a roadblock to conversation. I get stuck examining my flaws, unable to conjure up a phrase to change the subject, because when people hold up that mirror they hold it up until I convince them to put it down. I either drown or snap, losing any chance to move the conversation along, before walking away and internalizing the interaction to process later.

When people we went to school with see us, all they expect is a nice conversation about how amazing our lives are since we graduated from college 5 years ago. And without an amazing 5 years to share, I’m left with nothing but my deteriorating body that barely lets me out of the house.

I’m not my disease – I need a distraction from it, that’s why I’m here.

People care. But we haven’t, as a world, figured out a way to interact with those who will fight the same thing 24/7 for the rest of our lives. Most difficult things in life are temporary, not chronic. Grief eventually subsides, although it may be the most relatable experience. If you’ve ever lost a dear loved one, you may understand what it is like to prefer to stay home because interacting with happy people is too difficult. You probably know what it’s like to put on your ‘face’ to mask the pain, because it’s easier to have the lake damned and levees reinforced rather than clean up after a flood.

Those who’ve defied death like me are the people I know I can really talk to openly. When Jack calls my name as I walk by him, I know I can be brutally honest because he’s no longer in the wheelchair we believed he would die in three years ago. When Erin, who has defied all odds with a rarely detected cancer, and I recognize each other a few seats down, I feel comfortable when we seesaw between talking about our hobbies and the various methods we use to administer shots. When I go backstage to find ibuprofen and see my friend Cynthia, who lives with MS and now uses a scooter, I feel at home because she and I can joke about how much pain medicine I’ll need to get through the show; and when her son Austin says he has a full bottle of ibuprofen and doesn’t even bat an eye when I ask for twice the allowed dosage – I feel safe. These interactions give me comfort because I am not putting on a show and I don’t feel pressured to unpack all my feelings and condense them into one teaspoon. These people get it.  When they ask me how I am, what they really mean is, “Let’s dodge the real question for now talk about other things without needing to focus on how you really are, unless you feel like talking.”

For my friends now wondering what to say – how about: “It’s so good to see you” or “I’ve missed you.” Give me a good hug. If I feel like opening up, I will.

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Charis Hill
Advocate at Being Charis
Charis is a professional model, chronic disease advocate and blogger who lives with Ankylosing Spondylitis, severe depression and Post-Traumatic Stress Disorder. She leads the Sacramento area Spondylitis Association of America Educational Support Group, is involved with local and national nonprofit organizations related to Spondylitis and Arthritis, and she is a regular contributor to awareness campaigns and political legislation for those living with chronic diseases. Charis graduated in 2009 from Meredith College, Magna Cum Laude, with a BA in Sociology. When she is able, she enjoys sewing, cooking (she’s vegan), gardening, soccer, running, and her two cats Dora and Juno. She is also an Episcopalian and gives really good hugs.

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