The How and Why I Create Art ~ by Monica Reents

I want to talk about the how and why I paint and draw while living with syringomyelia, a progressive spinal cord disease.

A quick, brief background, I was diagnosed at the age of 34 with syringomyelia and have been diagnosed with several other illnesses along the way. I also have Chiari Malformation, fibromyalgia, kyphosis, cervical degenerative osteoarthritis, and syringobulbia. Each of these has a long list of symptoms but I won’t get into all of that. For the purpose of this post, I want to focus on what and how I create art despite living with chronic pain. 

I love waking up early in the morning, absorbing the quiet of the world before it wakes, and sitting at my desk to draw, sketch, and color. This creative time is a wonderful way to wake up. It is time that I use for practicing, I just allow myself to make mistakes and to explore my abilities. This is a time when I am having to wait for my medications to catch up with my pain level, so I like to read or draw during this time as a way to distract my mind.

But it isn’t always as easy as sitting down and drawing. There are days that I have difficulty, or can’t, walk when I wake up. Laying in bed all night creates pain, incredible stiffness, and (sometimes) loss of mobility. I use my hands to move my legs when they won’t move on their own. Massaging my legs and lower back as my husband holds me up so I don’t fall over as I work on reminding my legs how to move. On days like this, it can take a few hours for my walking to return to normal.

Can you imagine not knowing if you will be able to walk in the

morning? And having that worry every day? Not everyone with syringomyelia experiences paralysis, or any loss of sensation or mobility. This disease can affect every part of your body, including your organs, there are no limits; so it treats everyone a little differently.

Thankfully, that doesn’t happen every day. But I do wake up with a great deal of pain and stiffness every day. That part never changes. This is what I have become accustomed to, chronic, wide-spread, pain.

I am also a writer and attempt to divide my time as needed. But for the last few weeks, I have concentrated on getting my artwork seen and building an online store on my blog. It really began by accident. I wouldn’t say that I am a gifted artist. It takes practice, patience, and persistence. I have always enjoyed drawing and coloring, but I never took it seriously. But something happened a few months ago… I drew a dragon. That may not sound all that exciting, but it was fairly good if I do say so myself. It’s not perfect, it needs some work. But I’m proud of it as it is. I decided to continue exploring different mediums and chose to play around with my acrylic paint. That’s when the magic happened! I had discovered my ability (and love!) to create fluid abstract art.

It’s expressive, bold, and feeling. I’ve become addicted to the

colors and how they react together. I enjoy hearing what people see in them and how they interpret each piece. It’s like performing a magic trick. Every piece I do, says something different to everyone. It’s comparable to my writing, in that if I write a poem, it provides different feelings for each person that reads it because they will interpret the meaning to tie into something in their own lives.

Something I am still working on, is time management. Honestly, I think most people have some struggle with managing their time when working from home. And with the state of the world right now, that statement is probably even more true. I want to work on everything every day. But my body becomes easily exhausted and it can take days to recover if I’m not careful. I have always worked long hours and slept very little, but since my diagnosis, there has been a huge decline in the amount of activity I can handle at once.

I’ve attempted to implement several different techniques to

improve my level of productivity without overwhelming my body. So far, I’ve seen most of them fail. The simplest ideas are often the best ideas… balance. It’s all in how I balance my days that allows me to check off items on my to-do list. I never paint and do any type of housework on the same day. I try to limit my painting to half days (but not always successfully - it’s hard to quit). Splitting my day so that half of it is sitting at my desk writing, drawing, etc… and the other half doing housework or painting really is the best way I can divide my time. I would like to say that when I’m tired that I rest, but not always. That’s when I end up dealing with several days of complete exhaustion. I don’t know why I do this to myself. I don’t neglect my health by any means, but I choose to be busy.

If you are someone who lives with a chronic illness and works, whether in or out of the home, you will be able to understand some or all of the aspects of daily living that I chose to mention. Daily life with chronic illness is almost a contradictory of terms. Living / chronic illness. These terms go together, but it isn’t a seamless match. There are plenty of rips and tears in the fabric that hold these two terms together. You learn to balance and to cope in ways others will not be able to relate. If this is you, keep going. Do your best because that’s all you can do and it’s enough.

Being able to work from home, doing what I choose to do, is the

blessing that came from my diagnosis. Whether with words, paint, pencil, charcoal, watercolor, markers, or even crayons, everything I create is part of who I am. Being able to share myself in these ways is important to me. When I was diagnosed with syringomyelia, I was given one year to live. Those were very powerful words. Although I have beat those odds, I know how fortunate I am to have an opportunity to follow my dreams. And I don’t intend to waste the time I have been given.

Artist and Author Monica Reents resides in Kansas with her husband and dog, Bentley. If you are interested in knowing more about her writing or art, please contact her at the links below.

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The How and Why I Write ~ by Monica Reents

Nothing captures who I am more than when I am creating art,

Photo: Deposit Photos

whether with words or paint. The mix of my emotions, thoughts, imagination, and feelings with the words I choose to work with is nothing short of magical (for what it does for my soul, anyway). It’s my love of creating that has always drawn me to writing. But it’s not my love of writing that brought me to sharing my work. Life events opened that door and changed everything about the how and why I write.

Writing was something I always did in my free time before shoving it in a drawer or saving it on some random file on my laptop.

Like so many, I have had a lifelong love affair with books. The

Photo: Deposit Photos

written word garnered a special place in my heart before I even began kindergarten. I excitedly read everything I could get my hands on, looking to escape into the fantastical worlds born from genius minds, as far as I was concerned. It was in middle school that I decided maybe I could write a book. A friend and I tried to write and illustrate a book together. I have no memory of what the book was about or what happened to what we wrote, but a need to write was born.

If you ask someone who writes, why do you write? You’ll gather various answers, but the principal reason may simply come down to need. That’s my why. It offers a release that nothing else compares to. But always keeping it to myself, that came from fear. Much of my writing is dark and emotional. Most of it has no tangible origin, it just comes to me.

Without giving you an entire timeline of my life, let’s jump to 2011. I had been writing poems and short stories for many years, never sharing them. Most people who know me never knew that I wrote. It was for me and, while I wanted to write and publish novels (someday), I was fine writing for myself (for now). Newly married, working on blending our families, and working full time as a pediatric ophthalmic surgical assistant, I didn’t have time to write and I needed the creative outlet it provided. Little did I know that my opportunity was fast approaching.

In July 2011, I began having severe chest pain that radiated up into my shoulder, across my upper back, and down my left arm. I was experiencing numbness and tingling, along with loss of sensation on my left side. After two or three days of coping with increasing pain, I went to the emergency room and was quickly taken back and hooked up to an EKG (electrocardiogram). My results came back normal. Which was great, but the pain persisted.  A week later, an MRI (magnetic resonance image) was taken of my entire back.

This scan changed my life.

The first neurosurgeon I saw (I’m leaving names out for privacy) read the results of my MRI to me, and my husband (of three weeks). Walking into the office, I felt fairly confident that I had a pinched nerve in my neck from a herniated disc. We weren’t worried.

Once the surgeon began speaking, I felt myself becoming hot, nervous, then came the tears. So many tears. I sobbed until breathing became difficult. I became a mess while hearing words like tumor… largest I’ve ever seen… entire spinal cord… not surgical… and about a year left… even, now, knowing that I beat the odds, it’s still emotional

At the age of 34, I was diagnosed with syringomyelia. My tumor (syrinx) was from C2 to T12 (2nd vertebrae in the neck to the last rib vertebrae)

and was extremely swollen. He was surprised that I could walk and still had use of my arms.

Syringomyelia is a rare spinal cord disease that creates a fluid filled sac (cyst) within the spinal cord. The cyst, called a syrinx, can expand and elongate, destroying the spinal cord. The damage can result in chronic pain, loss of feeling, loss of sensation, paralysis, weakness, stiffness in the neck, back, and extremities. There is no treatment or cure for this progressive disease.

It was a long, quiet ride home from that first appointment. By the time we had made it home, my husband had decided what he was going to do. He made me comfortable on the couch and then made  a phone call. We couldn’t accept that I only had one year left to live and our minds were racing with anxious thoughts. But that phone call he made, saved my life.

He called his cousin who works for a very talented neurosurgeon. I had an appointment within a week and surgery two weeks after that… these amazing people literally saved my life!

I survived surgery (obviously), moreover, I have survived ten surgeries!

Every day is different for me. Some days are ‘fine,’ I go about doing whatever I want as long as I can maintain a level of pain to my level of tolerance. Other days are high pain days and I don’t even get dressed, staying in my robe, minimal physical activity, and dozing whenever I need to. I’ve learned to listen to my body because I know that having a busy day means not having a busy day for the next two to four days. 

Post sx 2016

My life is all about the balance of activities. I hate nothing more than a wasted day, so I use my love of list writing and planning to try to prevent from overexerting myself. I see a pain management doctor once a month that helps me track my ever changing symptoms, as well as a myriad of medications. I’m thankful to say, that I have been stable for about a year and a half now. I have a lot to be thankful for.

It was during the recovery of my first surgery in August 2011 that I told my husband about my writing. He was surprised, but not overly. He knows how much I love books, so wanting to write them wasn’t a far stretch. I asked him for a notebook and pen; explaining how I had hidden everything I had ever written in the past and never even talked about it with anyone.

Here is where I walked through that life changing door I mentioned. I immediately began filling the pages with poems and story ideas, character profiles, world building thoughts, and plans for the hopeful future of my writing.

I read my poems to my husband every night. Now, he isn’t a reader, but he listened, said each one was great, and supported me as I had just (re)discovered what I was going to do with my life.

For me, writing out in the open has been a dream come true! I have had several major bumps in the road since announcing to my family and friends, most importantly to myself, that I wanted to publish my writing. Unfortunately, I was paralyzed for about a year in 2016 and was unable to write. I had a year of therapy and have regained use of my body, but I don’t have much sensation and my balance is questionable. Again, a lot to be thankful for. 

I have been diagnosed with several other diseases since learning about my syringomyelia. It makes writing challenging, if you want to publish, because chronic pain hurts more than your body. After years of pain, I have found that my mind isn’t always clear. It becomes a reflection of what my body feels, leaving me tired and weary. Later, reading what I write in those moments isn’t always anything I keep. I’ve learned to listen to what my body is telling me. I never feel rested or that I've had a good night’s sleep. So, I have again adjusted my thinking on what determines a “good night’s rest.” I know that I do best when I sleep from about 10 pm to 6 am. My writing feels most productive in the afternoon into the evening as long as I haven’t been physically active. It’s all a balancing act. But so worth it to have the opportunity to do what I love.

I have published two poems. The first one was in 2014 in the Cogs in Time 2 anthology, called Darkened Love. The second poem, Whispering Seduction, is in the novel Tempted by Kristine Raymond.

Currently, I’m working on a poetry collection and a debut novel. I know that I will publish, but I don’t have a clear deadline as to when. As long as I am taking steps forward, that’s okay with me.

Monica Reents was born and raised in Kansas, where she lives with her husband and Bentley, their dog. She grew up with a love of books and found a passion for crafting her own stories and poems in High School after reading Of Mice and Men by John Steinbeck. 

   Monica also runs a blog, My Chronic Happiness. She designed her blog to be a reflection of who she is. It is informative for anyone living with chronic illness, as well as anyone interested in the world of writing and books. You can find her at the links below.

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Writing Therapy ~ by Beth Worsdell

At a very young age, I fell in love with words and began to write poetry. It was a great way for me to pour out my emotions, and process everything that I didn’t understand, such as my parents’ divorce and a new life in a different city.

I also fell in love with books, which fueled my imagination and made my poetry more creative. Before long, I was writing poems for family members and special occasions, and I realized that words held power. Power to touch people's hearts, make them realize how special they are, and also give people comfort. As much as my writing was therapy for me, my writing was benefiting others too.

When my kids and I were T-boned by a truck in 2007 and I was left permanently injured, I turned to my poetry writing as a way to cope with the physical pain I was in. It was a wonderful distraction from my pain, a way to express my feelings and frustrations. It was a huge transitional phase for me. I was no longer the person I used to be, and I had to come to terms with the new me, with new physical limitations. What I didn’t expect, was my poetry evolving into songwriting.

As I sat at my kitchen table, trying to write a poem about two little girls, who had recently been murdered by a school janitor, I thought about the loss of these innocent children. I poured my words onto the paper before me. My words began to flow, but also a melody started to form in my mind. I was shocked, as I never even thought of trying to write songs, even though I was just as passionate about music.

I decided to go with it and find out where it would lead. Within a couple of hours, I had written my first song. Not being able to read or write music, I had to rely on my limited singing skills, to share my song with my husband and kids. When they actually loved my song, I was keen to see if I could write another. Before long I had written over ten songs, all about life, love, and the shenanigans in between.

It honestly felt like a natural progression. In my mind, I was still writing poetry, but now my poems were musical. I loved the flow of the songs and the way my words could be sung in so many ways. Some were ballads, while others were upbeat and would make you feel like dancing. While recovering from my accident over many years, my songwriting was not only a comfort to me, but it was a wonderful form of expressing my life changes. Being able to still do some of the things I enjoyed, pulled me out of the grief phase of my recovery.

Then in 2017 my writing took another turn.

I don’t usually remember my dreams, as I sleep like a log. However, one night I had the weirdest dream, that was so vivid, I told those close to me about it. I joked that it would make an epic movie like Avatar. The dream wouldn’t leave my thoughts and would pop into my mind on a regular basis.

After nearly three years, I finally decided I should write it down. Before I knew it, I had written three chapters and the story was continuously forming in my mind. After sharing those first chapters with my mum and sisters, and getting such a positive response, I decided to continue and Earth’s Angels was created.

It never ceases to amaze me, that we have so much creativity within us. Plus, the fact that our writing craft can evolve in ways we never thought possible. As a woman in her forties, who’s a mother of four, with chronic regional pain syndrome, I never thought I could be a published author. I’m thrilled that I can be an example of the expression “it’s never too late”. 

I have now published two highly rated books, and I am working on

the third of my Sci-fi fantasy Trilogy.

While writing and promoting my own books, I have also been interviewing other authors. This has been such an amazing experience. The authors I interview are all at various stages in their careers, and it’s wonderful to share their publishing journeys with other writers. So far, I have interviewed authors young and old, from fantasy to poetry, and they all have wonderful life stories to tell.

I honestly believe that we all have a story to tell, whether it's told in poetry form, a song or a novel. There are no limits for writing and I still love to write poetry, songs and books. You are never too young or too old, and it is never too late.

Beth Worsdell

Beth and her husband Ian have been happily married for over 20 years, spending most of their married life in Portsmouth, England. When Beth and her husband had the opportunity to move to America in 2011, they jumped at the chance. After five wonderful years of living in South Carolina, they now reside in California. You may connect with Beth at the links listed below.

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