Love and pain, beautiful and heartbreaking. Truth. These are dancing words.
Poet Neil Hilborn shared his emotional dance with the world. Now around the world people are nodding their heads with tears and cheers for his piece about living and loving with OCD. Neil Hilborn performed ‘OCD' in June during the individual finals at the 2013 Rustbelt Regional Poetry Slam.
I haven't been a fan of poetry, but this piece makes me want more. I want to know what happened! I want to know if she comes back, if he finds someone better. I laughed and nodded as I thought of those I know with OCD and sighed as I understood the frustration of having to wait as the one you love has to go back to the parking garage to the car parked at the top after you have gotten to the bottom to make sure it is locked.. again. Today I loved a little more and danced with words with this amazing man's song.
Hilborn explains that the poem was written in 2011. The tics in the performance are intentional, he says, “but they are also .. actual tics. Sometimes in performance they become real.”
Want to learn more about OCD? Check outDopa. Most of the largest sites on the Internet aren’t accessibility compliant. 51 million Americans have visual, cognitive and other challenges that make it difficult or impossible to access websites you and I take for granted every day. Websites can't be accessibility compliant without sacrificing design, interactivity and general user experience for visitors without disabilities (paying 50% more for designers and coders might help but would still fall short). Think of Dopa as the alternative to Wikipedia for important topics related to psychological and learning disabilities.
When I was younger, before I was diagnosed with Lyme disease I was losing a battle with the Lyme Monster in a war I had no idea I was fighting. Lyme is evil, there is no other word for it but evil. Because it's not just a disease of one area, you never know what's actually happening to you or why.
Crazy or Infected?
When I was in my 20's, I was losing the battle. Lyme comes with a range of psychiatric reactions because of the toxins that affect your brain. Some people experience mental issues including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder are common with Lyme disease.
My issue was a short temper because I was always exhausted.
Studies have 26% to 66% of Chronic Lyme patients suffering from depression. Suicide is the leading cause of death in Lyme Disease patients.
Life and Lyme weren't easy
As my body grew weaker with the disease, my heart and soul did as well. When I was going through a tough time in my personal life, trying to be a single mother and grow up at the same time. I didn't have any friends to turn to, and I felt like there were times I really just wanted to give up and sleep forever.
I look back now and just want to hug 23-year-old Me and tell her what was wrong and how someday soon it would get better, and she would have answers.
Attacking my Adrenal System
One of the favorite attacks the Lyme Monster used against me was attacking my adrenal system and hormones. Not only was I having a hard time moving around, remembering things, keeping my emotions in check, and staying awake. But my body began to put on weight as well.
My self-esteem just took a massive blow. After the birth of my third child, I watched in horror as weight gathered in places and refused to budge no matter how much I watched my diet and tried to work out.
The pain of working my muscles at the gym would last for days and ache deep and hot. Exhaustion after going to the gym was mind-numbing, and all I wanted was to sleep, so I didn't hurt anymore. And like anyone else, after putting myself through so much pain daily and feeling so run down, I pulled away from the gym too.
Lyme is a sick bastard, it tears at your self-esteem, your personality, and your body. I had to learn how to fight on a different level, I am always fighting it. It is emotional and you have to take control of them. I know that when I give in, even for a day, I will feel worse for much longer.
I know I am not alone in my fight against Lyme. Robert C. Bransfield, MD found in his study of Lyme disease that depression is the most common psychiatric syndrome associated with late-stage Lyme disease like I have. Although depression is common with any chronic illness, it is more prevalent with Lyme patients. There appear to be multiple causes, including a number of psychological and physical factors.
From a psychological standpoint, many Lyme patients are psychologically overwhelmed by the large multitude of symptoms associated with this disease. Most medical conditions primarily affect only one part of the body or only one organ system. As a result, patients singularly afflicted can do activities which allow them to take a vacation from their disease. In contrast, multi-system diseases such as Lyme, depression, chronic Lyme disease can penetrate into multiple aspects of a person’s life. It is difficult to escape for periodic recovery. In many cases, this results in a vicious cycle of disappointment, grief; chronic stress, and demoralization.
It should be noted that depression is not only caused by psychological factors. Physical dysfunction can directly cause depression. Endocrine disorders such as hypothyroidism, which causes depression, are sometimes associated with Lyme disease and further strengthen the link between Lyme disease and depression.
Suicide is the weapon that Lyme uses to finish us off. Sadly suicidal tendencies occur in approximately 1/3 of Lyme encephalopathy patients. Few of us are ever free of the thought of helping out the disease and sleeping forever.
The Jarish-Herxheimer reaction is hell. It's a hell we will go through for the rest of our lives. When in treatment, the Lyme fights back, and it wants you to think you are dying and even worse.. it wants you to help it take you down.
Some patients have described becoming suddenly aggressive without warning. For me, antibiotic doses have to be increased very gradually or else suicidal thoughts and depression swim in my head continuously.
I've felt as if the antibiotics were actually killing me with each dose and would beg my husband not to make me take another dose. In reality I was having an adverse reaction to the meds and should have been taken off it immediately. When I told my doctor about the thoughts, he said it was rare but dangerously real.
Lyme doesn't have to win
But please, don't think that Lyme will always win. Medications are out there to help with this part of your disease as they helped with mine. After suffering from terrible tremors and body vibrations, my doctor suggested a low dose of Sertraline for a few weeks to help settle the nerves in my body and keep my system from going into a hormonal panic attack. It worked to settle things down.
Now I have a low dose of CBD oil that I take nightly for the tremors and pain that I also can take when the anxiety kicks up a bit. I don’t do well on pharmaceuticals because of a bad liver. But the cannabis doesn’t affect my liver function and settles my nerves easier.
Lyme doesn't have to win. I am not going to let it take me down, nor help it win because I know to ask for help. You have to keep that in your head.
I am not my disease!
I am not my Lyme. It only has the power that you give to it. I am a beautiful, strong artistic woman who loves her children and husband dearly, enough to keep fighting through the pain.
Please, if you have these thoughts and need someone to talk to. I am here, and there are others who are waiting to help you too.