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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