Not everyone is a morning person, or so I've heard. Me, myself, personally (in case there is any doubt of whom I am speaking), I am a morning person. When my alarm goes off, I get up. Heck, I will beat my alarm clock some mornings. My typical morning routine consists of a workout, checking and responding to emails while enjoying a cup of tea, or maybe reading a couple of chapters of whatever is currently on my nightstand. I like getting up in the morning and getting things going.
Imagine waking up one day and not being able to get out of the bed. I don't mean not wanting to, and thus hitting snooze five teams. I literally mean: not.being.able.to. You are fully awake, your brain is telling your legs to move, you can feel yourself trying to move your arms, yet nothing happens. In March 2009, this is what happened to me. I remember it distinctly because I had plans for the upcoming weekend with my gyrlfriends. We'd rented a condo in Savannah and I was looking forward to my gyrls getaway.
It was a Wednesday morning, I was wide awake, I had to report to work, but I could not move. AT ALL. I was used to being sore or stiff in the mornings. Who wouldn't be sore and stiff from working out 5 days week at 5:00 am and dancing 3 nights a week in addition to a full-time job and full-time doctoral studies? I was scared; but I chalked it up to my body being overworked. I called in for sub and then called my mama (I only call the doctor when my mama is not available). "This will pass," I thought. And it did for a little while. The next time it happened, about a week and a half later, I knew in my heart that my inability to control my muscles was more than a response to my being overly active. I just knew it wasn't that simple.
fast forward three years...
"You don't look sick to me."
"I never would've guessed you have lupus."
"You're so active, I wouldn't think anything was wrong with you."
"You don't act like you have lupus."
"Ain't nothin wrong with you gyrl."
These are just a few examples of the things people say to me. In their minds, they have a picture and profile of what defines sick. Apparently, I don't fit the image. Most people are not very familiar with lupus or its symptoms yet they know that I don't look or act like I have it. Amazing!
In medical terms, Systemic lupus erythematosus (SLE) is an autoimmune disease, which means the body's immune system mistakenly attacks healthy tissue. This leads to long-term (chronic) inflammation. In Quita's terms, this shit hurts. All.The.Time!!! It renders a person incapable of doing not big things-but simple everyday things that most take for granted. To add insult to diagnosis, the cause is not known. By all accounts, I have led a healthy lifestyle for as long as I can remember in my adult life. Eating right, exercising, not participating in any risky behaviors. This is not something that was supposed to happen to me. Yet it did anyway and everyday of my life brings new challenges for me.
So what am I supposed to do? Should I allow myself to be the victim or should I try my best to live the life that I have grown accustomed to? I'm sorry if I don't "look sick". I'm sorry if I only post pictures on Facebook in which I look good. I have to apologize if my activity level is still higher than people who suffer from no disease at all. Perhaps I should take a picture of myself crying at the gas station when my wrists are so inflamed that I can't remove the gas cap to fill up my car. Maybe people would feel better about my illness if chose to update my status with complaints of being in pain. Oh.....this is a good: I should make a video of my mama or my sweet thang having to brush my teeth for me because the joints in my fingers are so swollen that I can't even pick up a toothbrush, let alone use it. Would that make me look sick enough? Even if I did that, some people still wouldn't be convinced.
But here's the gotcha: I don't need to convince anyone. I live lupus everyday. Those who are close to me also live lupus everyday. It's not easy. Nor is it fun. For those two reasons alone, I cannot and will not give it any more power over my life. I do acknowledge my limits and I take heed when my body is telling me to slow down. But I won't walk around ashy-faced, nappy-headed, wearing tattered clothes for no damn body. Oh no! God has been too good for that! Yes, it is tough. Yes, I have had to cut back on many activities that I love; but there is no way I'm going to just sit down and be sick, look sick, or act sick. I will not walk around looking like lupus.
Candidly,
