Fear of Feeling

This morning, I was on the phone with a close friend who has been with me through every difficult moment of my narcoleptic journey. I was saying to her, "I wish there was a way I could express how grateful I am..." and then I went silent. I could no longer hold the phone to my face or convince my tongue and jaw to form words. My eyelids refused to stay up, and before I knew it, my neck and shoulders gave out. With my neck unable to support even the slightest weight, my face fell to the table top, pressing my nose and mouth so firmly against the wood that it became difficult to breath. In my mind, I encouraged myself, "Tell her to call 911! Ask her to come over and help!" But in that minute, not even the muscles in my throat were under my control enough to conjure a moan or a scream or a whisper. After a few seconds, I was able to catch a breath deep enough that I could whine into the phone. My friend, confused and frightened on the other end of the receiver must have thought I was just crying hysterically, because she was clearly trying to provide comfort and support. Her kind words however, we so touching that they actually made me more emotional, causing the little bit of muscle control I'd regained to drain away until, once again, I was being suffocated by an antique hand-crafted heirloom. 

Using strategies I had read about online, I was able to calm myself enough that I could ask her to stop talking. I explained in slurred speech that I was having a cataplectic attack and that I was OK. More over that as soon as I could walk, I was going to get into bed, because it was the only safe place for me to be.

My friend, compassionate and concerned as she was, insisted that she wanted to come sit with me for the day to be sure I was alright, but I resisted. While I claimed it was because I just wanted to rest, the reality is that I was humiliated that she had witnessed, even if only through the phone, the worst cataplexy attack since my diagnosis in 2009; and that I had never felt more afraid and impotent in my entire life.

The experience chronicled above is why I will not be watching the SuperBowl today. It's why I don't feel like I can safely go to the basement to do my laundry or drive to the grocery store. It's why, as I'm typing this, I'm debating whether or not to get up and go to the bathroom. On the one hand, I'm afraid to test my legs. On the other hand, if I lose muscle control, will I also lose control of my bladder? This is why I'm struggling to choose a movie on Netflix right now. If it's too funny, I might lose control again, but if it's sad, I will definitely not be able to maintain physical strength. I need something that is neither funny nor at all emotional, yet is still engaging. Does that exist? This is the thought process of someone who has learned to fear feeling.

Stereotypically, men are thought to have trouble getting in touch with their emotions. What is it they are afraid of? Vulnerability? Exposing their true selves? Or is the stereotype no more than a myth?

In the case of cataplexy, fear of feeling comes from something more concrete and physiological. Essentially, as I've explained in prior blog entries, cataplexy is marked by the loss of muscle tone in response to extreme emotional reactions. So a funny joke, a moment of deep grief, or a sharp shock will leave one feeling tingly, numb, or in the worst case, incapacitated.

In the past, I've joked about cataplexy (a cataplectic being chased by a bear is doomed, because the fear of the bear would result in a loss of muscle tone that would make it excessively easy prey...and so on). There is something undeniably bizarre and lovable about it.

For instance, watch this short video of a man and his wife laughing hysterically because he farted. See what happens toward the end of his laughing fit...

The man is not asleep. He is 100% awake during the entire experience. However, the muscles in his jaw, face, neck, arms, legs, abs, and everywhere else for that matter, are reacting the way they would if he was in a state of REM sleep. You see, the reason you don't act our your dreams in a typical night of sleep is because your brain paralyzes the body during REM. The brain has evolved over time to protect itself from self-harm. If the body weren't paralyzed during REM, you would suffer a disorder like the one Mike Birbiglia depicts in his autobiographical film, Sleepwalk with Me. Check it out:

So back to cataplexy. Essentially, when narcoleptics sleep, they are constantly in REM. Somewhere along the line, however, the brain and body ceased producing hypocretin (the neurotransmitter responsible for signaling arousal, wakefulness, and appetite). So, along with the mixed messages received during REM, it also occasionally tells the body, "Quick! You're feeling some extreme emotion! Paralyze yourself STAT!" And that is cataplexy. So when I, or any narcoleptic with cataplexy feels something suddenly and intensely, our brains stay awake and alert, but our bodies literally become paralyzed. 

In the short Youtube video below, you can see why this has potential to be such a depressing diagnosis, particularly in the case of a child like Robin:

This blog post is called "Fear of Feeling," and poor Robin illustrates the point as well as anyone could. For Robin, the small act of skipping makes her happy, which in turn sends her crumbling to the ground, which in turn erases the pleasure from skipping. How does a child find enjoyment in the world when the body repays it in such humiliating and scary ways?

I, luckily, did not develop this disorder until later in life, so I know that the things I love, even if they briefly paralyze me, are worth pursuit. So despite the fact that I experience moments of cataplexy every time I watch football with my friends, I continue to go and laugh and hope that I don't look too insane when my face is struck numb from pleasure. As a close friend once said about the disorder, "There is still joy to be had."

I believe her when it comes to joy. In fact, at first my cataplexy was triggered solely by laughter, so it was almost a welcome sensation. If I couldn't feel my face, it meant that I was incredibly happy and amused. Over time, however, the disorder has generalized, leaving me in constant pursuit of emotional numbness to assure physical sensation. It's an odd dichotomy when you think of it in those terms. If you feel emotionally, your body will be paralyzed. As long as you are emotionally numb, your body remains your own. 

My experience this morning was bar none the scariest minute of my life. Alone in my apartment, struck mute and motionless by the simple desire to tell a friend I love her, I wanted nothing more than to be asleep. The consciousness is the curse. Wishing you could will your body to move or your eyes or open or your head to turn, and knowing that the lines of communication between body and mind were cut off for the time being. The panic must be how it feels to be drowning.

Luckily I was not hurt and was able to drag myself to bed soon after my episode. But how does one go forward from here? How do I live my life avoiding grief, sadness, joy, and humor? Those are not things we seek out; they are not optional. So instead I forge ahead living in a constant low level state of fear, thinking, Careful Rachel. Don't feel too much...