Screaming At The MonSter

Friends and family provided me hope.

“A hospital bed is a parked taxi with the meter running.” ~ Groucho Marx

I never planned to live in chaos. But here I am again. Trying to steady my brain. Looking up at the sky. Searching for my purpose with the stress of my diagnosis sitting on my shoulders.

Endless doctors appointments, various symptoms and unsolicited magic potion advice builds the pressure. Until one day I blacked out. Fainting from the force of my burdens. Regaining consciousness in an all too familiar place. Laying flat on my back in a hospital bed. Waking to monitors flashing my status. Echoing like slot machines. Not knowing if I was dreaming or awake.

I silently looked around the room and saw my husband sitting in a corner chair. Eyes closed, slowly bobbing his head with headphones wrapped around his ears listening to Kanye West yell at him. Music so loud I could hear every lyric.

Above his head, there was a dry erase board hanging on the wall. The date, my vital signs and unfortunately my weight were written right below the on duty nurse’s name.

I glanced back at my husband and realized he had fallen asleep. And worst of all his music was still playing. I couldn’t help but think, if I die right now the last voice I’m going to hear is Kanye West. What a horrifying fate.

Why couldn’t he be listening to Adele or Beyonce? I love crying to their music. The distraction of sympathizing for them always makes me feel less sorry for myself.

For the next 30 minutes, I listened to muffled rap music and watched as twilight slowly pierced the window blinds and overtook the room. Creating a murky space with an aura of sadness. To ward off melancholy feelings, I concentrated on all the good times. The love I received from others and the love I had for myself. I diverted my attention to a tray table displaying a row of cards and flowers undoubtedly given to me by my friends and family. It provided me hope and a feeling of joy.

Then from the shadows, I noticed a nurse entering the room. She approached my bed and very cheerfully said to me, “Welcome back.”

Her acknowledgement confirmed I was not dreaming. So I smiled the biggest smile I had ever smiled. Because at that moment, I recognized I had once more faced and conquered my demon. I was triumphant. And thanks to the universe, I was allowed to continue living, loving and laughing.

So as my hospital room filled with the voice of Kanye West screaming at the world, I began screaming at the MonSter, “I’m still here!”


(The first things I saw and experienced after waking up in the hospital. And finally being discharged.)

Leftovers

People with MS inhale air others are scared to take.

“You should never view your challenges as a disadvantage. Overcoming adversity is actually one of your biggest advantages.” ~ Michelle Obama

A permanent limb got me feeling inadequate. Times like this, I should take it slow. But I can’t stop moving. Stillness brings a scary focus to my circumstance. So I keep busy.

I know nothing is set in stone. However, my MRI prophecy still weighs on me. At last check, I had too many lesions to count. The spots show my reality. Even when I hide in the shadows of denial, symptoms always shine a light on my condition. No matter how hard I try to ignore the elephant in the room, at some point, everything gets smashed. Tingling, blurry views and forgotten appointments clog my head with uncertainty. And worst of all, when I experience new symptoms, the fear of disease advancement washes over me. Each flare up, no matter how small, makes me so scared.

That’s because, the scars from my last attack are still fresh in my mind. My hands still shiver when I think about going back to that moment. The echo of my voice silently screaming for help, still rings in my ears.

I was completely bed ridden. I had no control. Deceived by my body. Swindled by Judas, trading away my health for 30 pieces of silver.

It took me to a strange place. Where time didn’t matter. My feelings didn’t matter. Nothing I wanted mattered.

And when I thought it was over. When I believed it wasn’t coming back. When I had nothing else to give. It struck again. Taking more. Eating everything in sight. Memories. Cognition. Energy.

Filling up until all I had left was what the MonSter’s plate couldn’t hold.

Leftovers.

And unfortunately, those snippets of abilities are what I must use to rebuild my life. Re-establishing my existence with foot drag, extreme fatigue and a cloudy mind.

People with MS inhale air others are scared to take. And sometimes we become frozen in fear. Starting off the day in the back of the line and spending the rest of our time trying to keep up with the crowd. Listening to everyone telling us to never give up hope.

But I’m growing tired of living off of hope. Always looking for help. Craving to win the lottery. Longing for a cure. I’ve done it so much, sometimes I get lost in my dreams for a better existence. It’s all I think about. And before you know it, I’m no longer living. I’m just wishing my life away. Daydreaming about what could be, instead of thriving in the here and now.

But today I want to stand in my truth. Because I realize, beauty lives where truth resides. And no matter how loud the world can be, once all the noise fades away, we still have to sustain ourselves regardless. Even if all we have to exist on are leftovers.

(Written three weeks after two ER visits, four days in the ICU and two weeks in the hospital)

Attention, Love And Time

I need to foster relationships.

“You find strength in knowing you have a true friend and possibly a soul mate who will remain loyal to the end.” ~ Bob Marley

You do so much for me that I believe you can accomplish anything. You can handle anything. Plus you provide support without any questions or expectations. And it’s not fair.

When it’s time for me to give in return, I almost always fall short. And that makes me feel like a failure. It’s not because of a lack of effort. I really try my best. It’s because I am not the same person I used to be. I’m different.

It’s amazing, despite my flaws, that someone in this world can still love me. I limp. I fall. I stutter. Sometimes I sleep all day. My thoughts are frantic. Most of my ideas are only half thought out. And I seem to drift through the day.

Once, I did everything on my own. Now I need assistance. I’ve become such a liability. I feel like a burden to everyone. My deficits put so much pressure directly on our relationship. Forcing you to constantly adjust between being a companion and a caretaker.

That awkward reality makes me withdraw. Where I become absorbed in my circumstance. Compelling me to complete task unaided, when I should be asking for help. Placing all my focus on myself. Putting everything else on hold. And unfortunately that sometimes includes you. Those times when my heart is so far away. Even when we’re sitting right next to each other, I’m still thousands of miles away.

It’s because I’m just so distracted. My mind is preoccupied with staying sane. The pain in my head sounds like a conversation with my grief. And it will not shut up. Creating a diversion so strong I barely listen when you talk. When you ask questions, sometimes I don’t even answer back.

But I can’t use my difficulties as an excuse to neglect you. The answer is plain and simple. I need to find a different way to foster our relationship. Just because some of my abilities are lacking, doesn’t mean I don’t have anything to offer. I can’t physically assist in strengthening and growing our bond. But I can give you what I do have. More attention, love, and time.

Lesions Of Doom

Just look at my x-rays. That’s where you can see who is in charge.

“Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you.” ~ Misty Copeland

I made future plans and the universe laughed. Now I’m scratching my head, trying to figure out what to do next. Prescription pills and prayers help me cope with the reality that I’m not in charge.

Just look at my x-rays. That’s where you can see who is giving the orders. The lesions are in control. They are the lesions of doom. And I’m constantly fighting to regain power over the plaques.

I try to ignore the bitter pain of losing authority. But it always breaks through. Leaving a sour taste in my mouth. Each doctor’s visit is a reminder of my inabilities. MRI readings reveal each spot’s hiding place. And once I learn the locations, it’s almost as if I can hear the violence in my head and spine. Annihilating myelin while slowly trying to destroy me from the inside out. Manifesting itself as fatigue so powerful I now spend most of my day in bed. No make-up, uncombed hair and half of my clothes on the floor.

Its supernatural control has me living under an orange sun of fear. Where I sleep through my days and live in my nightmares. I walk in my dreams and limp when I’m awake.

I’ve become a shadow of what I once was. I don’t act the same. I don’t talk the same. I don’t move the same. And if you listen closely, you can hear me whispering for help. Praying to God for relief. I do it for so long, sometimes I run out of air in my lungs.

And whenever I stare in the mirror, my reflection holds me still. I can’t look away. My heart skips a beat when I see the real me. And I can’t hide the pain. Even my shadow looks sad some days.

So to combat the control I’ve lost, I spend time with people that know how I feel. They understand me. They have been where I have been. We talk online and in person. Most have experienced the same symptoms as me. No one laughs when I ask silly questions. I don’t have to explain why I’m tired. I’m not judged because of my weak voice. Everyone just accepts my limitations. It gives me a sense of community. It brings me joy. And most importantly, it grants me some control. Control over the lesions of doom.