“Wanting to be someone else is a waste of the person you are.” ~ Kurt Cobain

Cheating on my husband because I’m sleeping with my worries. Nocturnal seizures. Epilepsy. Head working the graveyard shift. Midnight insomnia taking over. Skin crawling. Pins and needles at 2AM. Mind racing. I just can’t rest.

Wondering, where did the money from all those MS Walks go? I heard the CEO got a raise. Can we use more of those dollars to repair some of these broken hearts? Help pay air condition bills in the summer? Reimburse some co-pays?

Thinking about tomorrow. Trying to manage my insanity. Biting my nails to the nub. Not sure how a normal life goes. Can’t get a job because my resume is full of hospital stays and doctor appointments.

Moonlight turns into sunbeams. I can see the rays glowing through the window blinds. Still tired from being a warrior all day yesterday. But I can’t rest too long. I have plans to keep.

Tossing prescription pills into my purse. Then I’m on my way. Places to go and people to see. Calendar full of “got to do stuff”.

Off to the next clinician specialist. A scheduled doctor’s appointment. Watching him make predictions from an x-ray. Seeing a future full of uncertainty. Tormenting me with every word. Active lesions. Optic neuritis. Progressive symptoms.

Giving me more meds. Keeping me high so I don’t feel so low. Asking me to pick a new drug treatment. But cognitive issues get in the way. Confused by simple questions. Trying to remain independent but my decisions are like scratched records.

Repeating mistakes over and over.
Repeating mistakes over and over.
Repeating mistakes over and over.

Living everyday closer to exacerbation than remission. Not knowing what is next. Attempting to be brave. Remembering what people like me like to say.

I have MS. MS doesn’t have me.

Such an optimistic chant. I use to scream that mantra at the top of my lungs. Now I whisper it like a prayer.

Still out and about. Running the streets. Feeling worn out and weak. Sitting in the passenger seat. Forward facing. Leaning my head on the front side van window as my husband chauffeurs me around town.

Asking him to slow down. My world literally spinning for hours. Vertigo stays until I’m back home. Planted on my couch. Reflecting on my lengthy day. Exhausted.

Trying to save my broken soul. Sipping on lemonade while Beyonce plays in the background.

Dreaming with my eyes open. Watching Turner Classic Movies. Breakfast at Tiffany’s.

I stare at my reflection in the hazy mirrored coffee table. Checking my lipstick and hair. Thinking life would be easier if I was someone else. Deep down I know that’s not the answer. But still, when I look up at the television, I can’t stop myself from wanting to have Audrey Hepburn’s style.