The day my life changed

Author’s note:

Narcolepsy is a neurological disorder that affects 1 out of 2,000 Americans and 3 million people worldwide. On average, it takes 10 years from symptom onset to diagnosis. About 75% of these cases are classified as Type 1: Narcolepsy with Cataplexy. This is my diagnosis and for me the journey took 12 years. This story is a combination of real life events that eventually led to my diagnosis 10 years ago. I’ve included more links and information in the comments if you want to learn more. 

***

My clumsiness has officially become a problem, I thought as I sat in the ER waiting room. I searched the surprisingly empty room looking for a distraction from the pain in my shoulder with no luck. 

As I sat there, a faint voice in the back of my mind insisted that my problem was much more than mere clumsiness. I agreed, of course, but not with a great deal of confidence. 

I'd lost count of all the doctors I'd seen and tests I'd been through over the last ten years. While my symptoms worsened, I’d been assured that it was nothing to worry about. The extreme fatigue, sleepiness, contradictory insomnia, confusion and difficulty concentrating were all simply signs of depression and poor sleeping habits. 

 The inability to distinguish dreams from reality at times, as well as the full on hallucinations I experienced at other times were hallmarks of anxiety. And the way my muscles seemed to turn to jelly at the strangest times? Nothing more than clumsiness, I was told with an indulgent smile. 

I'd stopped asking the doctors why this clumsiness appeared one day, out of nowhere. This clumsiness was the reason for my visit to the ER on this day. Something had startled me while walking down the stairs and my legs suddenly buckled, causing me to roll the rest of the way down - doing something exceedingly painful to my right shoulder in the process. 

This doesn't mean I ignored the advice and recommendations, though - quite the opposite. I was desperate for a return of my old self, so I’d done everything that was suggested. I’d been to psychologists and psychiatrists, and took every medication they prescribed. I’d been to nine physical therapists, which I actually enjoyed.

I had impeccable sleep hygiene. No seriously, I could write a book about it as long as my readers didn’t require a happy ending where I say I sleep great now and wake up rested. I exercised daily and followed a strict diet.

The overarching theme was that if I just tried harder, or was better at being an adult, all my problems would disappear. It was frustrating when my efforts failed, but I still held onto the idea that it was within my power to fix myself. 

I even meditated - twice a day for twenty minutes. It was the one thing that I thought actually helped, especially with my anxiety around doctors. 

So that’s what I did while I waited. I closed my eyes and focused on my breathing. I counted the in breaths and the out breaths. When the pain shot across my collar bone and down my arm at the movement of my breath, I told myself to feel it and allow it to pass. Everything is temporary. Pain is temporary. 

“Ms. Foster?” a young woman said.

I opened my eyes and tried to match her smile as I got to my feet. 

“If you’ll follow me, we’ll get some X-rays of that shoulder, then I’ll bring you back to the waiting room while they’re being reviewed.”

I followed her through the maze of the hospital to a cold, dimly lit room full of imaging equipment. After a moment of checking things behind a partial wall towards the back of the room, she returned and guided me to stand with my back against a wall where a X-ray holder was mounted. Then she maneuvered another holder attached to a large mechanical arm until my right shoulder was sandwiched between the two of them. 

As she loaded the film into the contraption, my legs started to shake. I don’t know why standing hurt my shoulder more than sitting, but it did. The woman, once finished with apparatus, told me to stand very still then headed back behind the partial wall to take the picture. I did my best to comply, and focused on my breathing again. I heard a faint buzz and click. I knew I hadn't done a good job of keeping still. I felt ashamed of my failure as she returned from behind the wall.

“I know you’re in pain, but I really need you to keep still,” she said. “Or we’re both going to be here all day.”

“I’m sorry. It’s the standing,” I said. I hated disappointing medical professionals, and it felt like the only thing I was good at lately. 

She sighed and left the room. I could feel her frustration and had to fight back tears. The tears weren't just about her or this situation, but rather the culmination of prolonged sleep deprivation, confusion and pain all landing on me in an instant. 

She returned with a chair and asked me to sit. I did. Weakly, I thanked her, causing her to sigh again.

“I don’t know if this will work with you sitting but we’ll give it a try. I need you to sit up straighter and angle your shoulder a bit this way.”

She pressed on the front of my shoulder and an intense stabbing pain shot across my chest. The clumsiness thing happened instantly. My neck went limp as my chin jabbed into my chest. My arms and legs suddenly felt like rubber. It lasted only a second and then my muscles were back, but shaky. 

Unfortunately, my voice had not returned as quickly.

“What was that?” the woman said, clearly annoyed. “I barely touched you. If you’re not going to cooperate, I can take you back to the waiting room.”

When my voice returned, I said, "Sorry." It came out slow and slurred. I hated how I sounded after these little incidents.

“Are you under the influence of something right now?” 

Unlike me, her voice was strong… and angry. I cleared my throat and willed my muscles to work. 

“No, I’m not. I think it’s the pain. I’ll be okay.”

I tried to move to my entire body the way she wanted, hoping to avoid another touch to the sensitive area. 

“Okay,” she said, “one last try.”

I was so busy trying to position myself the way she wanted, I didn't see the hand going for my shoulder again. This time her fingers felt like they were digging into the tissue of the joint. I could feel the sharp pain reaching all the way in my stomach, urging me to tap out of this fight. The next thing I knew, I was on the floor. 

I must have slid out of the chair when my muscles failed me again. I could tell my legs were bent up behind me as I laid there, paralyzed, on my back with my eyes open. They blinked rapidly and randomly, not under my command. 

I'd smacked the back of my head on the floor when I fell, but luckily it was a short fall. I tried to move my legs, to straighten them out into a more comfortable position but they refused to respond to my wishes - not even a twinge answered my requests. 

My head ached and the jolt from the fall made the pain in my shoulder nearly unbearable. The woman stood above me, telling me to get up. I tried to tell her that I was trying, but no words came out. 

Cold fear gripped my insides as I slowly realized that I wasn't coming right back out of the muscle-less state this time. The clumsiness had never been like this before, and it terrified me. I couldn't move any part of my body, no matter how hard I tried. All I could do was lay there, silent and scared. I was a puppet and someone had just cut my strings. 

The woman called for help, then grabbed my right arm to try to pull me up. I wanted to howl in pain, but no sound escaped. I wanted to kick her, but again my muscles betrayed me. She let my arm go, and I collapsed back to the floor like a rag doll. She threw her hands up in frustration and left the room. I felt an angry tear run from my eye and pool in my ear. Forgetting that I was paralyzed I tried to wipe it away. When I felt no response from my muscles again, an intense frustration joined the pain. 

For the moment I was alone. I tried to use my brain to find a way out of this nightmare, but my mind was exhausted and distracted by the pain and the terror. And the worst was yet to come. 

The woman returned with a young man wearing matching pale green scrubs. 

“What happened?” he asked, looking at me confused.

“She just slid out of the chair and now she won’t get up,” she said, crossing her arms. 

“Jesus, maybe she passed out. Did you ever think of that?” he knelt down next to me, and checked my pulse. I felt a moment of hope at his gentle touch. He patted the side of my face with his palm quickly - not quite slaps, but meant to wake me. When they didn't, he grabbed my shoulders and started to violently shake me. The resulting pain was so enormous that I found myself in awe of it. I could almost see it as something solid, filling the room around me. I started to wonder in a detached sort of way if maybe I would pass out. I found some comfort in the idea. 

“Ma’am! Can you hear me! Ma’am! Wake up!” he yelled into my face. I could feel his breath on my cheeks. I absently wondered if the woman had interrupted his lunch, as his breath smelled strongly of onions.

I am awake, you jackass, I thought, but of course could not say. I still couldn’t say anything, do anything. 

He straightened my legs out, and I wanted to sigh with relief. My knees had been starting to hurt from being twisted like that, but it was such a minor pain compared to my shoulder that I hadn’t really noticed it until it was gone. As if punishing me for this thought, he began to pinch me. He pinched my earlobes, my thighs and my fingers. I would have laughed if it’d been possible.

“I still think she’s passed out,” he said once done with the pinching.

“No, she’s not. Look - her eyes are blinking,” the woman responded. 

“I’m going to try a sternum rub, just in case.” 

I didn’t like the sound of that. Panic gathered in my throat as I tried with all my might to thrash and scream. I watched helplessly as he made a fist with one hand and started rubbing his knuckles very hard up and down the middle of my chest. 

I didn’t know pain had such heights until that moment. In addition to blinding pain, I was extremely nauseous and started having trouble breathing. The world around me went dark for a moment, then returned. I prayed to go back to the darkness. The man stopped the torture for a minute and leaned back on his heels. He was panting and out of breath from the intense pressure he’d put on my chest. 

“I don’t know what to do next,” he admitted. “I suppose she could be having a seizure?”

He turned and looked at the woman. I followed his gaze to her, trying to beg for help with my eyes. She shrugged, and he turned back to me. 

“I’m going to try the sternum rub once more, but I think we might want to get a doc,” he said. 

No, no, no! I silently screamed. As his knuckles raked against my chest again, I wondered what I could have done in this life, or some other, to deserve this. For the first time since my strange symptoms began a decade ago, I felt myself give up. I no longer cared about anything but ending this pain. I decided that if I ever got out of this, I was going straight home and would never speak to anyone about my problems again. I was completely done, and held onto that decision like it was my ticket out of this hell. If I hadn’t already been lying there like a bag of bones, I would’ve gone limp under the weight of this final decision. 

And wouldn’t you know, just when I gave up hope, a reason to hope entered the room. A man, wearing a white coat ran into the room and pulled the young man off me.

“What the fuck are you doing?” the doctor growled. He didn’t wait for an answer though. “Both of you - I want your backs against the wall.”

“We can just go…” the woman said in a small voice. 

“No. I want both of you to stand right there,” my savior said, pointing to the back wall. “Tell me what happened - quickly.”

The woman explained how I slid out of the chair and stopped responding. How she tried to get me up and couldn’t, so she went for the other tech. The male tech took over and described his efforts to wake me using pain stimulus techniques. 

The doctor moved around the room, but I couldn’t see what he was doing. He returned with a pillow and blanket. Gingerly, he lifted my head and placed it on the pillow. Then he covered me with the blanket with equal care. I felt another tear escape to the pool in my ear at his kindness. I’ve never been a fan of fairy tales where knights ride up on white horses to save the day, but in that moment, that was how he appeared to me. 

“What is the patient’s name? And where is her injury?” the doctor asked the two techs, still standing against the wall in timeout. 

Neither answered, until he turned to look at them. 

“I’d have to go get her chart,” the woman said softly.

“Do that,” the doctor said. 

She returned with the file and slowly read: “Katina Foster. Right shoulder - fall down the stairs.”

“Katina,” the doctor said to me, his voice now gentle. I focused on his face and realized I’d moved my head a fraction of a degree. It was barely a movement at all, but it was something. He noticed and smiled.

“I promise you are safe now. I’m going to pick up your left hand. I want you to try to squeeze my hand when I give you the signal, but it’s okay if you can’t right away. We’re in no rush.”

He picked up my cold, limp hand, draping it over his warm one. After a minute he nodded and I tried to squeeze. Joy and relief flooded my mind when two fingers responded ever so slightly.

He nodded, “Good work. You’re coming out of it now. I think severe pain must be a trigger for your cataplexy, or maybe it's the fear that pain creates. Either way, I think getting your pain under control will help you to come out of it. I need to check your chart first, but if you've been given something for pain here before without issue, would it be okay to give you something to take the edge off? Just squeeze for yes." 

I squeezed for yes, three fingers responding this time. I had no idea what he was talking about, but didn't need to know in order to say yes to pain relief. 

The doctor got up, and asked the techs to leave the room. He followed them out and shut the door, leaving me alone in the room. I don't know how long he was gone, but by the time he returned, I could move my legs a little. While he was gone I thought about that word - cataplexy. I’d never heard of it. Hope tried to spark in my chest but I tamped it down. I’d been through this so many times. I told myself I was beyond hope now.  

He returned with a nurse and a wheelchair. The nurse gave me a shot, and the doctor sat down on the floor next to me while it kicked in. 

"My sister has narcolepsy with cataplexy, too," he said, just like we were old friends continuing a conversation that had been interrupted. "It was really scary sometimes, but once she understood it, things got so much better. She just finished her PhD.”

I was touched by the admiration for his sister I heard in his voice. The pain medication took effect quickly, and now that I wasn’t being attacked, I slowly started to regain control of my body.

“Thank… you,” I said in a hoarse whisper. 

The doctor stayed with me long enough to finish my X-rays. He gave me the name of a good neurologist, along with the name of the test I needed to confirm his assumption about my diagnosis. When I was ready to leave, the office manager told me that the doctor didn’t even work at that hospital. He’d just been meeting his wife for lunch when he’d passed my room. I never saw him again, and never even got his name.

I think about that day a lot, though. I think about how incredibly lucky I was. And sometimes - very rarely - I wonder if he was another one of my hallucinations.