But You Don't Look Sick
I love Disneyland. I don't think you quite get what I mean when I say that I love Disneyland. I'm talking Annual Passholder, pin collecting, dole whip obsessed, cry during the fireworks, go to the park just to get a Monte Cristo Sandwich for lunch, know every shortcut there is, Disneyland addict. As cheesy as it sounds, Disneyland really is my happiest place on earth. However, even with all of my Disney expertise, there is still one thing about Disneyland that I don’t quite understand: how people in a place of such happiness and wonder can be full of so much bitterness.
In the spring of 2012, one of my friends suggested a Disney day just a week after I had knee surgery, and of course, I said yes! I was lucky that my first knee surgery was able to be done arthroscopically, so there wasn’t a huge brace or anything marking me as broken even though it was just a few days post-op. However, I wasn’t allowed to do much walking without crutches yet, so I packed up the wheelchair that I borrowed from a friend and headed off to Disneyland.
On this particular trip, my friend and I decided it would be fun to go on Star Tours. This ride is a little funky when it comes to being in a wheelchair since the first three-quarters of the line is accessible, but the last portion isn’t. A castmember instructed us to wait through the first chunk of the line with everyone else, and once we reach the point where my wheelchair would no longer fit, they would guide us down a hallway where we would skip the final room and be sent straight to the loading area. It seemed reasonable enough to us, so we jumped in line with everyone else.
We weaved through the line while talking and laughing and playing silly games to pass the time. For the first time since learning I needed surgery, I felt like a normal carefree teenager. About 20 minutes into the wait, I noticed a little boy just ahead of us in line turn to his mother and ask, “Why is that girl in a wheelchair? I thought those were only for old people”. Being the nosey person that I am, I began to listen in on what I thought was about to be a heartwarming teaching moment for this child. I will never forget what his mother told him.
“Because she doesn’t want to wait for things”. The woman’s voice began to get louder as if she wanted to be sure I heard what she was saying. “Never be like her, do you understand me?” the woman spat out in a disgusted tone. “We don’t lie just to get ahead”. She locked her gaze with mine as she said the last few words. She then rolled her eyes and proceeded on with her day. I sat there in silence, embarrassed, and feeling like I needed to explain my situation to everyone else in line.
I knew that I had every right to that wheelchair. I understand that Disneyland has a history of teenagers faking sick to get to the front of the lines, but that wasn’t me! I was just days post-surgery and trying to get my life feeling normal again, and somehow this woman made me feel like I owed everyone there an apology. She didn’t say it in so many words, but this was the first time of many that I would be told in some way or another, “But you don’t look sick”.
My dad used to take me into the ER when I first started dealing with Pseudotumor Cerebri. He would always remind me, “Kim, you need to look as sick as you feel. No making small talk with the nurses and cracking jokes. They aren’t going to take you seriously if you are smiling while saying your pain is an eight,” and he was right. I was once sent home from an emergency room by a doctor who told me I just had a headache and didn’t need to be at the hospital. I was back a few days later almost completely blind in one eye.
Over the last decade of living with a whole collection of different medical emergencies, I have learned that in order to get the treatment that I needed from hospitals and bosses and teachers, I had to tone down the joy. Humor has always been my coping mechanism, but that doesn’t work out very well when you are trying to convince doctors that your head feels like it is about to explode and you need their immediate attention. If I wanted help, I needed to look sicker.
But then one day, it hit me: I do look sick. This is what sick looks like guys because the fact of the matter is that I am sick, and this is what I look like. Once I began to comprehend that fact, I had to start asking myself a different question. What is it that people actually mean when they say, “But you don’t look sick”?
I have concluded that what people are actually saying when they tell me, “You don’t look sick,” is that I don’t look defeated. I don’t look like I am barely holding it together. I don’t look like I am hurting because I have a smile on my face. I can’t possibly be at risk of dying because someone just heard me laugh.
Our society has this absurd idea that you are either joyful because everything is fine, or bitter because you have a problem. It makes me sad that people have been taught to believe that pain and joy can’t coexist. That grief and laughter have to be strangers.
Friends, you can have both. I don’t know if anyone has ever told you that before, but I need you to understand it. Things can be a disaster and you can be hurting AND you can be filled with joy and light. These things can happen at the same time. In fact, I believe they are meant to happen in harmony with each other.
You see, your life is too valuable for you to buy into the lie that your circumstances control your attitude. Your attitude is a choice! I am not saying that you should be happy when a loved one passes away or celebrate even though you still aren’t pregnant after six months of trying. I am saying that even in the darkest times when happiness eludes us, we still have the option to choose joy.
Joy is something so much richer and deeper than circumstantial happiness. Joy is good friends with grief and pain because it is the thing that keeps us afloat and running towards tomorrow when today seems hopeless. Joy is the thing that says, “This sucks, but there is still so much to be thankful for”. Joy understands that things don’t always make sense, but that tomorrow I am going to be a better person because of the things I went through today. Joy knows that at the end of the day, a God who loves you sits on the throne and is in control of the mess of a situation that you are in. Joy is knowing that while my body may not work right today, and it probably still won’t work right when I wake up tomorrow, that one day I will be in a place with no more sickness and this disease will not have the final word.
Sister, you were made for joy. It is okay to find the bright side even in the midst of utter tragedy. It doesn’t make you fake or insensitive. Brother, you were made for grief, not just a facade of strength. It is okay to cry. It is okay to let God know that you don’t understand why you are going through this. He’s a grown-up, He can handle it.
We are all complex beings who have a complex set of emotions that are meant to bring us to the highest of highs where we can’t help but thank God for all of his provisions and allow us to cope during the lowest of lows when we don’t understand the plan. Let yourself experience true grief at the appropriate times, and then remind yourself that even in the midst of the grieving process, you have the ability to choose joy.
So yeah, maybe I don’t “look sick”, but it isn’t for lack of scars or bruises or bags under my eyes. While I may not have some drastic physical abnormality that you notice at first glance, you don’t have to look too hard to see the bottles of medications on my nightstand or the lump in my head where my shunt is. All of that is there if you really look for it. What you really mean when you say I don’t look sick, is that I look like I’m full of joy.