Little Miss Understood
My husband says I deserve the world. But lately, all I seem to get from the universe are unanticipated obstacles.
Employment barriers. Inadequate facilities access. Deficient healthcare coverage.
Living with functional limitations is an acquired taste. Not everyone can handle it. So much of it is a solo fight. Coping with issues most don’t understand. The fear of an exacerbation weighting on my shoulders. Holding me down. Repeatedly being told you must be this tall to ride the ride. It’s a crucible of struggle.
Constantly frustrated because people talk past me. Like I’m not even there. Asking the person who is with me, what I think. What I want. What I need.
Hello! You can ask me. I’m sitting right here.
I’m so misunderstood. Just because my voice is low. Just because my words are slurred. Just because my answers are delayed.
No one understands
No one knows the demons I face alone. Afraid the MonSter is going to wake up and attack. Use me to assault me. Use my own body. My own notions. My own fears.
Wall walking makes me feel like a failure. Not being comfortable in my own skin. Pins and needles crawling my whole body. And even though I know it’s not my fault, I can’t stop myself from concentrating on the broken parts.
Trying to hide the truth
I try my best to hide my deficits from the world. I worry people will find out my secret. Afraid I’m going to scare friends away. If they see the truth, what will they think? What will they say? How will they treat me?
Acting like I didn’t know what everyone is saying. But I hear all the rumors.
“She slurs her speech. She must be drunk.”
“She is so lazy. All she does is sleep.”
“She’s always in the bathroom. I think she’s doing drugs”.
So, I invent stories. Talking to my friends with a half dozen white lies in my mouth. Ready-made answers to any questions. Dancing in a minefield of half-truths. I’ve learned to blend in. I’m a chameleon.
Spending all my time selling deception and buying medication. And now I’m broken. Broken like a puzzle. Devoting my days to putting the fragments of my life back together again. Searching for pieces in the box. Looking on the floor. But every flare-up scatters and destroys the beautiful picture I’m trying to create.
Too sick to go out and scared to stay home alone
Limping and stumbling most of the day. Embarrassed to go out. But scared to be alone at home.
Wearing long sleeves to hide injection sites. Arms and feet swelling from needle sticks throbbing like a heartbeat.
Drunk from pain and forced to take daily sips. Fighting to stay sober. But my cup is full and the world pours more in my glass every day.
Hoping for some luck
And here I am, readying myself to fight again. I told myself I wouldn’t cry. But I can’t stop it. Blurry eyesight. Feeling like I’m staring at the sun. Every exhale fills the air with my pain.
Hoping for a blessing. Picking four-leaf clovers. Rubbing my rabbit foot. But there’s no peace for this sick girl.
So, I tighten my screws and prepare for the unexpected. Knowing most don’t understand my plight. And they never will identify with the life of this little miss understood.
Does your employer provide workplace accommodations due to your MS?