Passion for writing saved my life. But for the longest time, I was in denial that there was anything even wrong with me.
It’s been almost twenty years since I was diagnosed with lupus and seven since my mom died of the same disease.
Mom had lupus for several years before I got tested. I showed many of the same symptoms she did. I developed a rash on my face, I was exhausted and sick all the time, and I was sensitive to the sun. By the time I finally went to a specialist, I had ten out of eleven of the diagnosing factors for lupus.
Lupus has been called one of the invisible disabilities because most of the time we don’t look sick or disabled. What people don’t see is that a lupus survivor’s immune system is continually attacking the healthy parts of our bodies. Our pain is in our joints and organs. Some days I can’t even get out of bed, yet a week later I could be enjoying a brisk walk in the shade. It’s a strange disease.
The first ten years I quietly went through rounds of chemotherapy shots and was a participant in a double-blind research study. I rarely talked to my friends about my illness or what I was going through. I didn’t want them to pity me or treat me differently. I wanted to be normal.
The medicines were keeping me alive, but not living.
After one particularly life-changing visit at my doctor’s office, I started writing again. I had stopped mostly because I was busy with kids and struggling just to get to work and back home to my couch. But this day the doctors told me I only had two years left to live.
I knew at that moment that I had to change something or what time I did have left I’d regret not having done anything remarkable with my life.
I turned to journaling and poetry to help find answers. Writing had always been a way of making sense of my world as I grew up.
My new routine consisted of working my day job for as many hours as I could, coming home and taking a hot bath to help with the painful joints, and then writing. Since I still had teenagers in the house I wrote from the couch so I could still be part of the family.
Over the years of this new routine, I did get stronger and I wrote more.
But as anyone with a disability or chronic illness knows, depression sinks in alongside the pain and struggles. Although I was doing better, my Lupus would still flare up at the most inconvenient times. Depression would set me back mentally and physically.
That’s when I entered a poem into a national disability contest. I didn’t know anything about the organization that sponsored the contest, at the time. It was just one of several I entered for something to do with my poetry.
I ended up winning first place for that poem! It was a great boost to my confidence. A few weeks later something even more amazing happened to change the direction of my life.
After the poem was published online with a small article about my disability, I received a letter in the mail congratulating me for the win. It was from one of my state’s U.S. Senators. I do vote, but I’m not someone who is active in politics. This Senator would have no reason to know me.
When I got the letter it was an amazing confidence boost. I do realize it was probably someone in his office who sent me the letter, but it was still confirmation to me that my writing didn’t suck. Someone out there took the time to read my words.
It got me thinking that I just wrote a winning poem about the same disability I was trying to hide. I realized my lupus wasn’t going away. And if I could still win a poetry contest while fighting for my life, I could have lupus in my body but not let my lupus define my life.
This was the beginning of learning to live with my disability but not being defined by it.
NaNoWriMo started a month later, and still empowered by the congratulations from the Senator, I decided to take the challenge. NaNoWriMo is National Novel Writing Month. Wrimos, as the writers who take on this challenge are called, have the month of November to finish a novel of 50,000 words. After only writing poetry and grants this was a mountain of a challenge for me.
Since 2012 I’ve entered and won NaNoWriMo every year. It developed a competitive spirit within me. Now I love writing challenges for accountably and motivation. I’ve published ten novels and several short stories, all while typing on my laptop in my favorite recliner or in hospital waiting rooms.
After I published my first book, I received another letter from the Senator congratulating me on my new novel. These small acts of kindness still brighten my dark days. They’ve taught me to celebrate each small victory.
Knowing how much those kind words boosted my own confidence, I’ve become a volunteer in several grade schools and high schools in my area. I visit during NaNoWriMo month to mentor young writers in creativity and encourage them to love the stories and the process of writing.
You never know how much a kind word will brighten someone’s life.