Hospital Bed

Healthiness is a hell of a drug.

“Life is what happens to us while we are making other plans.” ~ John Lennon

Our time on earth is a distinctive mystery. We all use individual life strategies. Some cross their fingers. While others, like me, plan for tomorrow. But yet, I never saw this coming.

The other day I fell apart. The doctors put me back together with steroids, a breathing tube and bed rest. Intubation was required and the ICU became my new home.

My memory of that episode is stitched together by faded voices and blurred faces. The whole experience seems otherworldly. But a fly on the wall told me it really did occur.

And since that time, I’ve been scared. I wake every morning to face another graceless day filled with attempted wall walking and moments I’ll soon forget.

I spend my days recuperating in this bed. Dictating my feelings to my husband as he types my words into his iPhone. Trying to make sense of the scattered thoughts my weakened muffled voice is dribbling out.

Reading messages asking me where have I been?

In which I always answer, “I wish I knew.”

And unfortunately it seems my MS is progressing. Each medical challenge is more intense than the last. And all I have to show for it is debt and bedsores.

All day long my hospital bed swallows my frame within its thickness. Making me feel like I’m buried in a tomb. Restricting my body, thoughts and movements.

Every night I try to ignore the sounds coming from the rooms of other patients. I struggle to sleep while nurses are constantly invading my personal space. My mind aches, as I lay awake humming a goodnight lullaby. Hoping for a better tomorrow. Staring at the ceiling. Waiting for the reckless thoughts too stop attacking. Thinking about how many times I failed today at completing common everyday task. And no matter what I do, those concepts are always delivered to my head like a present from my worst enemy.

It just doesn’t seem fair. Healthiness is a hell of a drug. And I’ve become use to it. So now I want more. I can’t stop myself from wanting more. I want more than thousand dollar wheelchairs, muscle relaxers and side effects worse than the original problem.

I want to feel “normal”. I mean normal all the time. Not just when my head is filled with dope. I’m on fourteen prescriptions and counting. I take medications junkies kill for. They use it to get high. But those pills don’t make me high. They help me make it through the day. It stops the sad songs from taking over my mind.

This whole MS thing just wasn’t apart of my life plan. I wish I could go back to the time when my mother told me stories of moons, cows and spoons. But I can’t. I’m here now. Facing my demon everyday.

But as long as I want more, I will never settle. So I guess I’ll start today by climbing out of this tomb and doing my physical therapy so I can leave this hospital bed behind.

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.