The Power of Hope in a Hopeless World

When things seem hopeless

When things seem hopeless

Early on in the diagnosis process of Conversion Disorder/Functional Neurologic Disorder, I realized that I knew more about my disorder than the doctors, therapists, and psychiatrists helping me. This became painfully obvious when I heard one doctor exclaim, “There is no cure for this.” Really?? That’s what you tell someone scared out of their wits, falling all over themselves and generally feeling like they’re on death’s door?

His translation of my disorder really came down to, “There’s no hope for you! So go be a good little girl, enjoy your non-seizures and pay the lady at the desk when you walk out.”

Okay, I might harboring a little ill will, but, really, who with CD/FND hasn’t heard these words before? Hasn’t seen the pitiful look in a doctor’s eyes when they tell you it’s all in your head. Of course it’s in my head, what do I do now?

Well, being the obstinate, ornery person I am. I said (in my head, of course), “Screw you! Not only am I going to beat this disorder, I’m going to help everyone else do it too. Just to spite you.” What is the biggest tool in my arsenal to combat CD/FND? HOPE. Even in small quantities, this has been the most powerful weapon of choice. With little hope, there is little chance of improvement, but when I see a silver lining on a cloud in the distance I can rally like a champion.

So, I haven’t beaten down the monster of CD/FND completely, but I’m chinking away at it. I’ve gone from 30 seizures a week to one every 4 months. For people that are constantly trapped in their bodies, even a day of respite is considered a blessing. And here’s what I’m telling you: Don’t believe doctors when they tell you nothing can be done. It’s not true. What they’re saying is they don’t know what the hell they’re doing.

The trouble with this disorder is that one treatment plan doesn’t fit all of us. I happen to have an underlying trauma that caused mine. I treated the trauma and the majority of my symptoms went away. I also have the lingering effects of complex developmental trauma and that’s not so easy to get over. That’s why I still have the occasional seizure here and there, but everyday gets better as I’m changing the way I think and react to stressors.

Healing from CD/FND is possible, but it takes a radical change of lifestyle to do it. It’s like a cancer that has to be carved out. I took a knife to the judge in my head and started loving myself warts and all. I dealt with my fears head on and faced the darkest parts of me and forgave me body for flaking out whenever things got hard. What helped me do this? Hope. Hope that if I couldn’t get it right today, I could try again tomorrow.  Hope that if I climbed this mountainous trial, there would be a peaceful valley on the other side of the stormy pass.  Don’t lose hope. Tomorrow CAN be better. Love yourself enough to keep hoping.

Posted in Articles | Tagged , , | Leave a comment

I Believe in the Sun When It Doesn’t Shine

3577759611_f4bf806e69_oI’ve neglected this site far too long. I’ve been posting frequently on my Facebook page, Convert This! Living With Conversion Disorder, but I think I’ve avoided longer posts because I wasn’t quite ready to put my thoughts into something concrete. Truth is like a balm and a curse. The truth I accept about myself is like an ache reminding me of scars that have faded but will always be present.

I had originally started this site as a way to disseminate information, but I realize that I just need to talk about what it’s like living with this diagnosis and how it’s completely transformed my life. I’m still me, but I’m completely different than I was ten years ago. It’s strange that I used to think I had a fairly normal life. I couldn’t even see the coping mechanisms that were suffocating me. But, as my daughter frequently points out: Normal is just a setting on the washing machine.

My normal life got turned upside down after the birth of my last son. In hindsight, I believe at the time a culmination of stress and specific triggers set things in motion. I had three older children, a newborn, a job, and then one of my child’s teachers turned himself in for child molestation. It was a perfect storm of psychological trauma waiting to drown me in a wake of frustration and confusion.

My first few episodes were second-long blackouts where I would drop the baby or my head would jerk forward. I went through the medical gamut with multiple tests that came up negative. It was a frustrating process not having any answers. I went through a couple neurologists and they suspected seizures. It took three years for diagnosis that would change everything.

It took three therapists and a psychiatrist before I figured out what was truly going on with me. The answers were more painful than the not knowing had been. But the truth in all its ugly glory did set me free. I waded through hell after hell in a spiral that eventually went upward after hitting ground zero. After re-living my trauma for three straight months, I just didn’t want to feel anything anymore. I had locked away the worst parts in my brain and my head kept regurgitating remnants of long-forgotten memories that haunted me in my dreams and my waking thoughts.

It’s hard to think about those times now, because I had almost forgotten how difficult they were. Healing has a way of softening the memories and making them just a pinprick instead of the knife wounds they used to be.

For so long, I was wrapped up in my own living nightmare that I forgot there was a world outside of me. Luckily, I had a support group of amazing people who helped pull me out. It’s time I started talking about what that was like, because so many people think it can’t be done. I am living poof that Conversion Disorder can be overcome.

Hope shines brightest in the darkest of hours. These words were found inscribed into the wall at a concentration camp:

“I believe in the sun when it’s not shining–In love when I am alone–and in God even when He is silent.”

I can be the sun in the darkness

Posted in Articles | Leave a comment

Something to Write Home About

After being diagnosed with this disorder, I would constantly think about all the things I couldn’t do. No trips to the mall. No driving. No hanging out with friends. No peace of mind. No swimming. No. No. No.

Now, don’t get me wrong, one of the most helpful tools in my healing process has been learning the art of saying no. Yet, I find that I like to reserve the right to say no when and where I want. I’d like to say yes to hanging out with friends without the fear of a seizure or a mental breakdown.

Someone gave me the best compliment the other day. They said, “I used to think you wouldn’t be able to handle something like this, but you’ve made so many changes lately that I think you can.”

Really?  Me? Handle stress in a normal and healthy way? Oh, yes, I did.

I became the musical director of musical theater production. I had a few seizures and used every coping technique I’ve learned over the last few years, but I did it. And now, I’m not afraid to say yes anymore. Who cares if I wig out a couple times? Who doesn’t wig out when the @#$% is hitting the fan? I just wig out in style! 

Posted in Blog Post, Daily Life | Tagged , , , | Leave a comment

Editorial on Conversion Disorder

The new definition for Conversion Disorder has some in the field of Mental Health already wishing for an updated model. Check out the article in Latest News.

Posted in Articles | Tagged , | Leave a comment

Trauma, Memory and Pain

I found an article that articulates well the processes that contribute to psychogenic pain in Conversion Disorder and other Somatoform disorders.

I found Section III the most informative.

Posted in Symptoms | Tagged , , , , | Leave a comment

Touched by Darkness, Healed by Light

I feel despair. The residual hand of darkness lay across my scalp and it burns. Memory’s pain flashes and I cringe until blessed numbness replaces the ancient ache. Pain is a memory lodged in my synapses until a spark of remembrance calls it forth and spreads the unwelcome intruder across my brow and drives an ache into my gut. “I will remember,” it says, until my skin numbs away the message. The icy fingers of night reach out to me once more, but I shrink from its cold, penetrating touch. My soul reduces until I’m packed so far down inside myself, I feel nothing. To feel is to remember. Remembering means pain. Pain means death. I don’t want to die. I want the pain to die, but how far will I go from the pain before I can’t come back anymore? I continue to shrink until I’m a pinprick in the center of myself.

Looking out from the infinitesimal hole, I spy a light far in the distance. Although the light seems to mirror my own miniscule habitat I created, I notice the light expands the closer I get. Or, am I expanding? Soon, I forget myself and the pain and focus on the piercing warmth of light. Its rays thread through me and poke holes through my thickened skin. Although it hurts at first, once the light is infused into the wounds, I start to feel something besides pain. I don’t recognize the feeling and I’m frightened at first. But, I can’t stop craving the light to penetrate my perforated self. It becomes delicious to me and my body thirsts for it. The more I drink, the more relief I feel. The places where the hand of darkness touched me whither from the heat of the blinding light. The shadows of pain flee before it. The darkness cannot stand where the light touches. Then, I realize, I feel joy.

Posted in Blog Post, Daily Life | Tagged , , , | Leave a comment

Interplay Everyday

This text is an excerpt I wrote to show mental health care workers how important body movement is when treating people with trauma, specifically Conversion Disorder.

Interplay Everyday

She wants me to do WHAT!?!

My first reaction to the techniques of Interplay made me instantly uncomfortable. The daily pseudo-seizures from my Conversion Disorder hadn’t eradicated all of my dignity. When asked to do a “hand” dance, I felt foolish. When asked to do karate kicks and fake Tai chi, I felt ridiculous. When I couldn’t think of the words to describe how I felt, I was asked to make up a language or tell a story about it. I did it, though it seemed absurd. However, despite my initial unwillingness to move my body, I found over time that I craved the motions. Usually, paralytic seizures controlled my body for hours on end; yet during Interplay, I was in charge. After “warming-up” with Interplay, I felt my body relax. It helped me see the difference between an anxious and a relaxed state. It helped me reach those hurt places more easily, because they didn’t feel so raw looking through the eyes of a fictional character. I could tap into my emotions and let tears go that refused to fall or anger that refused to surface.

Many trained therapists don’t even know what Conversion Disorder is, let alone how to treat it. I went through two master’s level therapists and one with a doctorate. They tried Cognitive Behavioral Therapy, Psychoanalysis, and Hypnotherapy. Nothing lessened the seizures, dissociation, PTSD, depression, or anxiety. My body received the trauma. Therefore, it seemed only fitting that through moving the body and listening to its needs that I was able to move through the trauma and finally process it. Today, I find myself instinctively using the techniques on a daily basis. If I start feeling my body tense, I “shake out” my arms, legs, and do heavy sighs. It’s not uncommon to see me karate chopping in the kitchen, yelling in gobbledygook, or singing random tones. My body instantly relaxes and I avoid pseudo-seizures. I went from having 20-30 seizures a week to having one every four months, and I’m still improving.

So, what happens now when I’m asked to do a hand dance? I just smile and go for it.

Posted in Articles, Treatments | Tagged , , , , , , , | Leave a comment