My name is Monica Reents, and like most people, I wear many hats. I am a woman, a wife and mother, daughter, friend, writer, blogger, and I am surviving life with several chronic illnesses. I titled my blog, My Chronic Happiness, because when you mash all of the things together that create my life, you have the ingredients for my ability to live chronically happy. My mission is simple, I want to share my experiences so that others can find inspiration in their own lives to be happy and pursue their passions, whether they live with illness, or not.

One of the hardest lessons I have ever learned was that of acceptance. That word holds a world of meaning and weight, and it looks different for everyone. For me, acceptance was something that I had to embrace in order to move on with my life.

When I was 34 years old, I was diagnosed with a rare spinal cord disease about three weeks after marrying my husband, Kevin. I sat next to my new husband and listened as the doctor told us that my disease was advanced, the biggest tumor inside of a spinal cord he had ever seen, and that most of my spinal cord was involved and that I would likely not survive surgery at this stage. He ended his explanation by saying that I should go home and enjoy the next year of my life. Now, mind you, when we walked in to his office, we were all smiles and happy because I figured I had a herniated cervical disc that was pinching a couple nerves and would need physical therapy or surgery to fuse the disc. To hear all of this made me feel like I was in the wrong room. I didn’t know what to say. Hearing words like disease, spinal cord tumor, not survive made it difficult to put everything together. But the last part, “go home and enjoy this next year as best you can,” was now on repeat in my mind. I was just given a year to live because of a disease that, as of a few minutes before, I didn’t even know existed. I sobbed for a life that I had not yet lived.

Syringomyelia is a rare spinal cord disease that is defined as, a chronic progressive disease in which a fluid-filled cyst (syrinx) forms within the spinal cord. The syrinx is made up of cerebral spinal fluid. The spinal cord should not contain any fluid, this fluid is meant to surround the brain and spine as a protective barrier. This disease causes damage to the nerves, which in turn, causes chronic, widespread pain. It is an autoimmune disease and has no limits as to where it can go in the body. It can be behind the cause of organ disease, respiratory disease, bone/joint problems, bowel and bladder disorders, and so on, there are truly no limits. It also causes muscle weakness and wasting, nerve pain, stiffness, scoliosis, and paralysis, just to name a few. And because this disease has no cure and takes a different path for each person, doctors have no way to let the patient know exactly what to expect as it progresses. For this reason, it is important to keep track of your symptoms, see your doctor regularly, even if your symptoms are stable, and have regular MRI’s, because that is the only way to check the condition of the syrinx.

I was diagnosed in July 2011, and here I sit, telling my story, over seven years, one new neurosurgeon, and ten surgeries later. I am proud of what I have accomplished and the odds I have overcome. I’ve learned many lessons along the way and, like I mentioned in the beginning, acceptance has not come easily for me. I have been forced to give up many things because of my body’s inability to perform certain functions. I have struggled with depression and anger while trying to maintain my role within our family. It’s not easy to sit in the back seat of your own life. And for a long time, that is what it felt like. I had become an observer and I could not have been unhappier.

My life became easier to handle when I changed the way I thought about everything. I had convinced myself that I was a burden on my family, particularly my husband. Syringomyelia came with several giant hurdles for me, such as kyphosis (scoliosis of the neck), paralysis (incomplete quadriplegia), MRSA, bowel and bladder problems, asthma, hypothyroidism, fibromyalgia, syringobulbia, Chiari Malformation, and constant widespread chronic pain. There are many lasting effects from these challenges that I have learned how to cope with, or should I say I have learned how to work around. For example, my fingers are stiff and have very little sensation, but I have learned, through trial and error, how to type, write, cook, get dressed (buttons are hard), and so on. The point is, to not feel defeated, at least for long. Think positively about your future.

What saved me was a rediscovered love for writing. I began writing in high school, poetry and even played around with short stories, but I never shared anything that I wrote. In fact, a person would be hard pressed to find someone who even knew that I wrote that much at all. So, I started spending my days writing poems to express what I was going through and found that I was fairly good at it. I decided that I wanted to share this revelation with the spoonie (a person who lives with chronic illness) community. I wanted to reach out to others with syringomyelia and help them find ways to cope in whatever way I could. I volunteered for the ASAP kids club, American syringomyelia & Chiari Alliance Project, for a while before reaching out to the community through social media. I have made some of the best friendships I have ever known this way and I continue to reach out today. My Chronic Happiness serves as the place where I can offer a positive outlook on life with chronic illness, regardless of what you have, while keeping it real. I don’t pretend the negatives aren’t there, believe me they exist. I want to show people that a diagnosis does not mean your dreams have to end; my diagnosis is the thing that taught me the value of life and has pushed me to live more than I have ever lived before.