Still Living With a MonSter

By Nicole Lemelle

2 min read

I’m not sick, but I fit the description. So, I keep going back to the hospital. We exit the car, check in, and wait for my name to be called.

The back room is cold and the lights are dim. A curtain separates each space.

“Please remove your clothes and put this on.”

Paper dress with an open back. Ass out like Prince. Strange relationship. World turned upside down. Blood rushing to my head.

My life of coping with MS complications

The emergency room is just a rest stop. Six hours waiting for a bed. I fell asleep watching television. I woke up while being transported on a rolling cart. Heading to the main floor.

Frequent UTI symptoms. Peeing through a catheter. Lucky me. I got a private room with no privacy. People continually in and out.

So hungry. But no food or drink. They need to run some tests. Throat parched from swallowing pills all day. The nurses bring them to me in a little cup with a sip of water. On extended stays, I watch as it goes into my veins from a hanging bag on a pole.

This is nothing new

I should be crying, but it’s normal for me to be in the hospital. I’m a frequent shopper. Been here so many times. I don’t show the pain anymore. The doctor’s strange faces bring me comfort.

Thousand-dollar wheelchair in the corner. I can’t stop myself from thinking about my former life. Was it real? I’m not sure. It’s so far away from current reality. My mind holds onto pieces of things that have long been erased.

Spacing out

It must be bad luck to speak on why I’m in here. Because no one talks to me about it. They all address my husband like I’m not in the room. So, I space out. Reflecting on my predicament. Penny for my thoughts. I got a million dollars now.

Half the time I don’t know what’s going on. I stay confused about the current day of the week. It all seems the same. Tuesday looks like Friday. Thursday is just like Sunday. I go to sleep Saturday. When I wake up its Saturday again.

Window shades stay pulled down. I haven’t seen the sun in a while. Can someone tell me if it still comes out?

Praying for a miracle

Social worker asked me my religion. “If you want, someone can come pray with you?” Yes, please! It’s lonely in this room and I’m bored. Plus, I need all the prayers I can get.

They must have seen my head was under water. And thought I needed to be baptized.

Preacher showed up. Stands over me mumbling. Sounding like he is speaking in tongues. He tells me, “Call on God for help.” I sealed my eye lids shut. Squeezed them tight and shook my head. As he talked to the universe and hummed a gospel tune. When I opened my eyes, he was smiling at me.

I guess no miracle today. Because I’m still in this hospital room. Still in this body. Still living with a MonSter.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Kim Dolce Moderator & Contributor
 Nicole, every time I read one of your articles, I rediscover the sophisticated way you move seamlessly from interior perceptions of your pain and confusion to observing hospital routine and how members of the medical team take care of you; from emergency medicine to inpatient acute care and back inside your head, recalling your past before MS took hold, only to question the accuracy of that memory. All the while carefully crafting your sentences to reveal to us what it is like to be you with MS. You make it look so easy to write your life in the ways you do. I know it cannot be any easier to write your MS than it is to feel it and live it. Your spare style leaves big spaces where you can pivot to switch perspectives. Those spaces are like open windows where we can poke in our heads and look around, try to see and feel it the way you do. While I can't crawl inside you and feel your MS full-on, I can see a few things through your descriptions. Thank you for this. It is a gift you give us, this chronicle of moments that all add up to something you struggle to grasp. Hoping you stay well and stay home through the holidays.
1. Nicole Lemelle Member
 <inline-mention username="Kim Dolce" user-id="4084112"/> Your comment made me cry. Because U understand. Here is a picture of me being discharged after that hospital stay. <img src="/content/images/2022/12/21/9f02a89ac5844988294a4046a0ce9f54_medium.jpg" alt="Discharged" class="uploaded-image"/>
2. Lori Foster Member
 I couldn't possibly say it better than Kim, <inline-mention username="Nicole Lemelle" user-id="4057272"/>. Your story. your moment in life, touched my heart. I hope you are able to stay out of the hospital through the holidays. Thanks for sharing this piece of you with us. Sending the best of all wishes and lots of gentle hugs your way. - Lori (Team Member)
Laura Kolaczkowski Moderator & Contributor
<inline-mention username="Nicole Lemelle" user-id="4057272"/> it is so good to hear your voice, even when it is full or pain and questioning. There is so much others can still learn from you, even when you are sharing your doubts. I hope the holidays will find you at home with your dear husband and you can stay away from the cold hospital environment. hugs to you and Tommy, Laura
kdcase Member
Thank you for perfectly, eloquently, and poetically describing our unique situations. The blur of which day of the week, the monotony, the spacing out during high stress moments, I felt this!
cholderby Member
As soon as I saw your name in the email I clicked. Beautifully said. I'm so glad you continue to write, even though you are writing about a sort of loneliness it makes me feel less alone.
f42s6m Member
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