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Why CRPS Prevents Me From Going to Movies

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I want to go to a movie theater. I want to have a date night out with my husband, eat popcorn dripping with artificial butter, and spend two and a half hours watching a fast-paced action movie on a screen so large I become immersed in the story.

My last movie theater outing was four years ago. It ended in tears, a severe pain flare, my brain wracked with guilt over us having spent $20 just to leave early, and a feeling of loss over one more thing my condition had taken from me.

I live with complex regional pain syndrome (CRPS), full-body. CRPS is a nerve condition that tells my brain I am always in pain, and tells my nerves to interpret all incoming stimuli as extra pain signals. My body tells me that I am always in life-threatening danger too, so I constantly have too much adrenaline pumping through my system, allowing me to tolerate exorbitant pain levels equivalent to that of someone being tortured, without ever going into shock and dying.

On the universal pain scale, an 8 out of 10 is my normal pain level on a daily basis. I have about five different types of “10 out of 10” flares, depending on what caused it. One type of “10 out of 10” causes me to experience shock symptoms, but my natural adrenaline overdose keeps me conscious. Another type makes me feel beyond desperate to be absolutely still and have nothing touch me. I’ll feel like a piece of paper caught on fire, rapidly disappearing into the flames. Each 10-level pain has its own level of hell, its own set of circumstances, its own rules on how to snap out of it or ride it through, and its own rules for my capabilities. A 10, too, is normal for me.

My condition has taken a lot from me. Some of it, like training problem horses who buck and kick was to be expected. Others, were unexpected and just add torture to my life.

Showering without supervision, that’s gone. Going swimming, that’s gone. Riding horses for several hours, that’s gone. Driving, that’s gone. Seeing a doctor only once a year, that’s gone. Being able to live alone, never had that chance. Lifting something over 10 pounds, that’s gone. Being able to do anything without feeling pain, that’s gone. Going to the movies, that’s gone.

My last movie was one of the “Hunger Games.” My boyfriend and I really wanted to see it. The last few times I’d been to a movie, things had started going more south for me in terms of rising pain levels and getting too cold, but we were hopeful. Tickets were expensive, even without snacks we ended up spending a little over $20. We struggle with finances sometimes, so I felt a hint of pressure to be able to withstand being at movie when I heard the total. We found our seats, close to an end row, but not super close or far away. We had waited for weeks in expectation, and were both so happy to be there. Date nights were always a great break in the week, and as my condition got worse, they were a way for me to feel normal.

I was cold. I had on long pants and a hoodie, but I was cold. I could feel the cold AC wrapping around me like a snake. I brushed it away. The movie was starting. I watched the images flash before my eyes, and tries to let myself relax into the story. The colder I got, it felt like my strength was slipping away. My teeth started going numb, my fingers tingly. I curled my toes and flexed my hands. It would be OK. I’d be OK. I could do this. Then the music started, and the first few bass notes of a fight scene shook through the surround-sound. I felt the vibrations ricochet through my bones as if I was standing on top of a jackhammer. Even the quiet parts of the movie sent waves of pain smashing through me as if I was made of glass. I could barely sit up. My hands were white. My head pounding. I felt like I was experiencing that “10” that comes with shock symptoms, but never lets me drift away. My boyfriend asked if I wanted to leave. Everything inside of me said yes, yes, yes, let us run away and escape this torture! But I felt guilty for us spending precious money, so I said no, that I could take it. A few more minutes passed, and another fight scene erupted on screen, bigger than the last, and it tore right through me. I could barely talk, but I managed to say that I needed to leave. He took my arm, and we left, him supporting most of my weight as I stumbled out, wracked with pain and holding back tears.

When we got to the car, we sat for a bit, me sobbing, him holding my hand. We had waited for so long to see the movie, and my terrible body had let us down. All I could think about was how much I hated my pain, how guilty I felt for making us waste that money, and how I had taken the movie away from my boyfriend too. I kept apologizing, and he kept shooting them down, reiterating that nothing was my fault.

I’ve never gone back to the movies. That was my last movie in a theater, and the memory of that night sticks with me. The feelings of guilt, how terrible I felt, how much I desperately tried to force myself to withstand the torture inflicted on me from the cold room, hard seats, and constant vibrations so that I could have a date night and my boyfriend could see a movie he’d been anticipating. I think about how what should have been a night off turned into a survival situation for me. How conflicted I felt, trying to weigh what was more important – my pain or giving us a fun night.

Since that night, he has never again put me in a situation where I feel like I have to choose. Neither of us do that to me. We think through everything, and we strategize before every adventure or outing. As much as he wanted to see the movie, he wanted me to be OK even more. Not all my friends think that way, though, which makes spending time with people very difficult for me. They don’t think things through; they don’t realize that I’ll try to weigh my pain against their enjoyment, and will often trap myself in more torture so that I’m not an inconvenience.

I protect myself by not doing common activities. I don’t go to concerts. I don’t go to movies. I don’t go to bars. I don’t go to loud restaurants. I don’t go to restaurants at rush hour. I don’t go to rallies or malls or other places that are crowded. I don’t go swimming. I don’t go ice skating or roller blading, and I don’t go to fairs.

I don’t go places that will “trap” me.

I don’t do activities that will force me to force my pain levels way too high, just so other people can have fun and think that I’m having fun too. 

This makes people think I’m anti-social, or lame. They don’t get that it’s dangerous and unfair to push me into a situation where I feel trapped between pain and obligations to having fun. They don’t get that I want so desperately to be able to see a movie, that I’ll let my body slip into shock just to do it. They don’t get that slipping into shock symptoms is easy for my body, way too easy.

My last movie taught us how to look out for myself better, and how to avoid situations where I get trapped between what I want and what I need, because there isn’t a way to win there. But I sure do miss going to movies.

Originally published: August 15, 2018
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