Roughly translated from Greek, narcolepsy means “seized by numbness,” and the primary symptoms of this chronic neurological disorder are excessive daytime sleepiness, sleep attacks, and the overwhelming urge to take regular naps — sometimes truly overwhelming. For those with narcolepsy the boundaries between wakefulness, non-REM sleep, and REM sleep can be impossible to decipher. People with narcolepsy often have trouble waking and may never know what a restful night’s sleep feels like. A recent groundbreaking study published in the Science Translational Medicine journal showed that one type of narcolepsy may be an autoimmune disease, destroying the cells that produce the transmitters responsible for regulating your sleep-wake cycle. Some 250,000 Americans have the condition, yet it’s thought that fewer than a quarter of all cases have even been diagnosed. Some narcoleptics also experience cataplexy: sudden, seemingly inexplicable muscle weakness causing the cataplexic to temporarily collapse and lose muscle control. These episodes are almost always triggered by emotions like happiness, fear, or excitement. Here, a 34-year-old model and writer describes her experience with both narcolepsy and cataplexy.
Can you describe what happens to you during a cataplexic episode?
First, I get a heavy pins-and-needles feeling in my legs. Next, I get tunnel hearing. Then, my body temperature changes dramatically: I’ll either get very hot or very cold. Then I have to give in. I just have to let my body go. I can hear what’s going on around me but I can’t communicate and I can’t move. My eyes roll back. This is very unattractive and unpleasant to say, but when it happens I lose all my muscle power.
What does that mean?
I often throw up. I can’t control my bowels or my bladder. Everything is released.
How often do you have these attacks?
It really varies. When I was first diagnosed I had two episodes of cataplexy within two weeks. I wasn’t even doing anything unusual.
Does that mean it can happen at any time? Or are there specific triggers you’ve learned to recognize?
Cataplexy is always triggered by emotions: usually sadness, excitement, laughing, or crying.
What emotions are a trigger for you?
I’ll have an episode if I’m excited or let down. Just after I was diagnosed I was with my girlfriends at Lincoln Center going to see the ballet. We were so excited as we walked in wearing pretty party dresses. Everything was magical. Then I suddenly got really, really heavy. I had to sit down. My legs couldn’t support me. I knew I had to make it to one of those little benches by the concessions and collapse, because I could not hold my body up. It was mortifying. At this point I knew what it was but it was still utterly embarrassing — no, it was humiliating. I was humiliated. It’s awful to lose control in a public venue, nobody around you knows why. It scares people when it happens. Strangers might think you are on drugs or drunk and passing out.
You also have narcolepsy, which sounds a little less embarrassing, but in other ways just as bad …
My brain can’t properly regulate sleep-wake cycles. So, if I fall asleep, you can’t wake me. This means I miss things. I was once invited to a VIP fashion event by a friend. I was so excited — I really love the designer. I was living in Queens. I got up early. I got showered, got dressed, and did my makeup. I called a car service and then went to put my jacket on. I woke up four hours later. Apparently the cab driver was pounding on the door. I’d just closed my eyes for a second. My friend was so mad she didn’t talk to me for weeks. “I fell asleep” is a pretty poor excuse for an adult.
What else have you missed because you have fallen asleep?
It happens all the time. Recently, I was supposed to meet a friend. I decided to take a short nap. I had a shower, lay down, and woke eleven hours later. This morning I had the carpet cleaners come and I set my alarm for 7. I didn’t hear it go off, I ran out of my room right as they were leaving! In general, I never schedule appointments for the morning, they just are not going to happen. The very first night I spent in a dorm at college I slept through a fire drill and woke up hours later surrounded by public safety, my RA, professors, and the fire department. They took it so seriously I had to complete special safety classes to prove that I could continue to live on campus. I just thought there was nothing I could do about it.
Is it possible to say which of the disorders is worse for you?
The cataplexy is worse than my deep sleep because losing control is so embarrassing. I recently did some runway modeling and at times I was fighting the cataplexy. Really fighting it. During Fashion Week I was walking in lingerie, and I was so excited and so nervous when I was backstage I felt it coming on. And it’s not as if I’ve told all of the designers and models I work with. I have had to confide in some people because it’s much better to lose control when someone is there with you who understands what’s going on. I know nothing is going to happen to me, I know I will wake up and I won’t die — but it’s so totally and utterly humiliating.
It sounds like you’ve sort of half figured out how to build your life around the disorders, but it must’ve been hard when you were younger …
I’ve always been able to organize my life so I can take an afternoon nap at 3 p.m. As a schoolgirl I would sleep after class. When I was in college I worked in a restaurant so I could take a 3 p.m. nap before my shift. Then I was a writer — I had the luxury of starting my day when I wanted to. I fell in love and my focus became planning my wedding and life with my husband, so I wasn’t working. Again, I could nap each afternoon. Even in my 30s I still have to take an afternoon nap around 3 p.m. and then I am good to go. But, a few years ago, my marriage ended and I moved from Long Island to Queens. I got a job in Manhattan and the commute took about an hour. I didn’t have the luxury of an afternoon nap and I was running around more than usual. I wasn’t getting enough sleep and that’s when I started to experience terrible health problems.
What’s the relationship between sleep and episodes of either —why does being better rested prevent them, do you know?
That’s the thing — you never really know when or why an episode will happen until it’s already happening. Diet, sleep, rest, behavior modification have more of an impact on my ability to keep to the plans I have made in the “waking world.”
Going back to the Lincoln Center episode. That day I had headed into the Upper East Side from East Hampton to meet friends for a Yankees game in the afternoon. I indulged in ballpark treats: popcorn, pretzels, and beer. We had an early dinner before going to the ballet. Of course, I didn’t know what caused it but I assumed it was connected to the food I’d eaten that day and the fact that I missed my afternoon nap. After that I cut out alcohol, greasy food, and sugary treats. I was taking my daily afternoon naps, and spent most of that week resting at my home on Long Island but then I had another episode later that week! This showed me that rest and diet have little effect on my cataplexy.
How was your sleep when you were younger?
I was a big napper. My friends teased me for getting “tired eyes” and when that happened I was going to bed, no matter where I was. I got lots of sleep but it was impossible to wake me up. I never made it to school on time. I’d go to bed at a normal hour but I would always miss the bus and my mom would drive me. I got in trouble because I’d come home from school, have a snack, and then go straight to bed instead of doing my homework. I’d wake up around dinnertime. I’d try and fight the nap. Often, I’d just read but I would always fall asleep. Then it could be impossible to wake me. We all thought I was a very deep sleeper.
What were you like as a young woman?
I was active and adventurous. I competed in beauty pageants. I was a Girl Scout — the first time I left the country was on a Girl Scout trip to Niagara Falls. My high school didn’t have a female lacrosse team and I didn’t have many friends because I was so busy with extracurricular activities, so I tagged along with my brother. I ended up challenging the school board for a girls’ team. I also petitioned to let me play on the boys’ team, and I won. I had a real sense that it simply wasn’t fair. I loved the Girl Scouts. I had the opportunity to travel and to do public speaking. I ended up focusing on that more than pageants. Instead of winning a crown I would get a badge to show what I had achieved.
How did you manage all that? Did you not have cataplexy back then?
Looking back I did, but I didn’t know it. I just thought I was fainting.
How often did that happen?
It’s hard to say because I didn’t know what it was. One Christmas Eve when I was a teenager I went to midnight mass at St. Paul’s Cathedral and I had what must have been a cataplexy episode. It was so embarrassing. I could hear everything but I couldn’t speak. It was so hot. I’d brought all my girlfriends with me, it was so terrible. The church was packed and I thought I’d been standing up and sitting down too much. My two Jewish girlfriends carried me outside and I came to when I got some fresh air. I thought it was just an extreme situation and I passed out.
Was that a one-time thing?
I remember I babysat for a while but the kids would complain that I was sleeping when I was supposed to be looking after them.
In junior high, I played sports and ran track. I would always get unusual pains in my legs. I’d get pins and needles from my tailbone to my toes; then it would go numb, and then when the feeling comes back it’s like more intense pins and needles. The only way I can describe it is like a charley horse in both my legs. It feels very heavy but I have no control over it.
That sounds mysterious and scary. Did you worry there was something very wrong with you?
Yes. When I was a child my uncle died from Lou Gehrig disease. He was a triathlete: Before he became ill I never saw him without his running shoes on. He was so active and he ended up unable to move. I would always identify my episodes as fainting spells because I didn’t have any other explanation, but there was a point where I was terrified I was dying. I just remember being told that he wanted to move his body but he couldn’t. I really thought I was going to die young.
Did it affect your studies?
Most of the time I’d show up around midday. It wasn’t as if I was staying up late at night. I wouldn’t be able to stay awake while I was doing my homework, but my sleeping wasn’t a legitimate excuse. Everyone kept saying: Get more sleep! I come from a family of educators. I did not have a learning disability — I scored high on standardized tests. I feel like my poor performance wasn’t linked to anything other than laziness. People thought I was lazy.
That must have impacted your confidence …
I thought I wasn’t as smart as everyone else. I had a lot of self-doubt and not much self-awareness and I had no idea that I was sick. It was defeating, to say the least. If I had known about this when I was younger my entire life could have been different. I could have known about medication and maybe that would have helped me. Luckily, I received a lot of accolades in my extracurricular activities. I don’t want to sound obnoxious, but some things did come easy to me: Socializing with people, my appearance, the way I walk. I pushed myself in those areas instead of others because I knew I could do it and I knew I could do it well.
Did you see doctors or did anyone offer an explanation?
When I saw a doctor all my tests came back normal. My height, weight, blood work. As far as they were concerned I was “healthy.” Narcolepsy was never discussed. I was young so I’m sure my perception of time is warped, but it didn’t seem like the doctor thoroughly investigated me. But, to be fair, I was a child, I probably didn’t have the language to articulate what I was experiencing. Even when my adult physician suggested I do a sleep study I resisted because I thought I had no problem with sleep. I didn’t link the fainting with the deep sleep or my need for naps, at all.
So, when were you finally diagnosed?
In January 2015. I was 32 years old.
Wow. That’s pretty old. How did it happen?
I did a sleep study. My physician convinced me because I was living in New York City and I just couldn’t make it. I’d be on the subway and I’d miss my stop because I couldn’t move my legs. I was having sleep paralysis. I was working in midtown, living in Queens, taking the E train. It was not pleasant. I didn’t know that skipping my afternoon nap was having such a detrimental effect on my body. It sounds so stupid to say it out loud but I really didn’t understand the value of sleep. I’d spend hours online going back and forth trying to diagnose myself thinking: Could I have this? Maybe it’s that?
I was exhausted and I was fainting all the time — at least that’s what I thought it was. I figured I kept passing out from stress. The worst part was that I had terrible, persistent stomach pains and my belly blew up like I was pregnant. It wasn’t bloating like I’d overeaten or had too much Pellegrino. It was scary and so large I had to take photos because I knew nobody would believe me. I was in extreme pain. I went in and out of hospital. When they asked me to identify what it was I said it felt like my appendix was bursting because I had no other reference. I can’t describe the pain. I was nauseated but I was not capable of throwing up. It turned out my pancreas was extremely enlarged — that’s where the bloating came from. I wasn’t digesting properly. The pain is all I can remember. My organs were going crazy. I went to the hospital a number of times. First in Queens where they said it was probably menstrual cramps. It wasn’t. Obviously I know what period pain feels like. I was at an overpopulated inner-city hospital. I felt as if it was very understaffed, and because my complaint wasn’t life-threatening things were overlooked. But in Long Island I was given a room in triage and I was able to speak to someone in depth. I think they were able to perform more tests and they were better equipped. When they did the sleep study they realized that there were moments where I seemed to be awake, I was reading and sending emails with the lights dimmed, but my brain was actually in REM. So I could have no idea if I am sleeping. That’s kind of creepy.
What did you think when you finally found out what was wrong? Please don’t get me wrong. The last thing I want to do is diminish narcolepsy because it’s terrible and it really impacts your quality of life, but it’s not life-threatening. So I was relieved. Had my doctor not forced me to do a sleep study I would never have thought my problems were related.
But cataplexy seems like a different thing. Are you scared of that?
I do have the fear instilled in me. A while ago I was driving out to Montauk and I started to get overwhelmed. The closest place for me to pull over was Long Beach, so I got out of the car and sat on the sand. I focused on my breathing and watched the sun set. I told myself to chill. That’s when I realized it’s more the fear and anxiety of a cataplexic episode that interferes with my everyday life.
Now that you know excitement is a trigger for cataplexy what do you do to avoid getting excited? Are there techniques that you use to stay calm?
I have been trying different methods. Remember the Fashion Week show I mentioned earlier? Well, it was a lingerie show. To walk in a lingerie show is nerve-wracking enough. There is so much to be anxious about, not only could you fall or trip but you are exposed, which adds an extra layer of fear. In the build-up to walking you have your final fitting and then you get your hair and makeup done. I could feel my anxiety escalating and I just didn’t know how I was going to do it. I was wearing a really tight bustier. A friend of mine who is more of a professional runway model saw me hunched over, gulping, and I told her I was trying to focus on my breathing. She thought I had stage fright and she took my head and gave me an amazing massage. It was so nurturing and it completely calmed me down. And then I walked without incident. So remembering how that calmed me down I treat myself to weekly massages. I go to the gym each day. I focus on my breathing and I monitor my body a lot. I know what the warning signs are. I feel my energy drain away. My eyes get heavy — they turn into what my friends call my tired eyes. My eyes are larger than average but when I get “tired eyes” they sink.
The episodes that don’t have an obvious trigger scare me the most. If there’s no trigger, how can I possibly control it? I have had episodes when I have been in at home in my comfort zone. I’ve had them when I have just finished an early Sunday dinner with my parents. Those incidents, or, like, a time at the Cheesecake Factory are frightening because there is no trigger. I’d just had a healthy lunch at a mall and drank water with lemon in it.
So you’d rather avoid going out than risk an episode?
If I feel off I stay home. It’s humiliating. Narcolepsy is rare and nobody really knows the real symptoms. My concern is that other people think I’m out of control or sick-drunk. Passing out in public is a total loss of control. Cipriani is one of my most favorite restaurants in New York. Back in the fall I was invited to cover two charity events there. I was so pumped, but as I was getting ready I started to feel heavy pins and needles in my legs. There was no way I could risk it — not there at Cipriani 42nd Street, around all those people. I knew I couldn’t risk it.
How did you find your way to modeling? Was that something you’d always done?
I have done it off and on. I began when I was about 11 at our local mall for a shoe brand. I tried to do more but I wasn’t getting any callbacks. I didn’t have the sort of body that most models had back then. I’m voluptuous and curvy — I was that girl in junior high with breasts, and this was the super-skinny, Kate Moss era. So I started competing in beauty pageants. People were focused on me, on my skills, who I am, and the things that I can do. It gave me a sense of identity and community, like the Girl Scouts. When my husband and I were married there weren’t that many career opportunities for me in Southampton. We were very fortunate that money wasn’t a concern, but I needed to do something, so I got involved with local charities. I wanted to give back to my community and have a little more of a voice so I started competing in beauty pageants again. I represented Suffolk County but I didn’t end up competing in Mrs. New York, America, because a week before the pageant my husband asked for a divorce. I couldn’t share my views about love and relationships while my life was falling apart. Pageantry isn’t acting. You are representing yourself and I couldn’t just go and perform as another happily married woman living a beautiful life when my partner was so unhappy he had to remove himself from the situation.
Tell me more about your husband …
We were only married for a year. We were friends first (he was literally the boy next door) and we still are. We share a puppy. He was early to bed, early to rise. I’m late to rise, late to bed, with a mandatory afternoon nap. I’m sure it was irritating for him to be up on the weekends waiting three or four hours for me to wake so we could go and do something. If we did make it out I’d need a nap after a few hours.
Did you have a big wedding? I imagine the excitement would have been a cataplexy trigger …
We got married in the Hamptons, we had a private ceremony for close family, and then we had a ceremony for show the following week. It was an exhausting day. My dress was a big ball-gown decorated with fabric and crystal roses lined with tulle, it weighed 40 pounds. We had originally planned to make it a larger affair with about 300 or 350 people.
Everything had become too much for me and I started to resent it. Planning the event was leaving me drained. There were so many people to think about and it felt like it was just growing and growing, and I started to wonder why it even mattered? I was overwhelmed. I cancelled my own wedding.
Do you think it was really about the stress of the huge event or were you having cold feet about the relationship in general?
I think it was a combination … I was very lucky. My husband is not an overly social person, and I am. He thought he could get over it and just go through the motions. But he wasn’t happy. I spent what energy I had on socializing and we weren’t doing things he enjoyed. He’s a very physical person. He loves nature. He enjoys hiking and adventure sports. My sleep patterns will not let me do that. By the time I’ve gotten dressed, driven somewhere, trekked out to the start point, I need a nap. As soon as we get on a bike I am so tired I just want to find a tree to lay under. I guess at the time I couldn’t understand why he didn’t get that it was something I had no control over. But I didn’t even know that it was involuntary …
And if you don’t understand it, it’s hard for other people to.
Exactly, and he was miserable. I look back at pictures of us together in the society pages of local magazines and I realize there isn’t a single photo of him smiling. He must have been so unhappy. I pushed him to socialize and it was against his character, so it was very unfair of me. He went everywhere with me. Everywhere. I recently saw him with his new girlfriend who is much more introverted and that dynamic is obviously way more effective for him. He’s grinning all the time, you know? Nobody understands it. When I’m talking to anyone chances are that they will complain about being tired. It usually comes before the weather during small talk. It’s a great go-to, especially in New York. I’m not a lazy or a selfish person, but this condition makes me come across as if I am. As I said earlier, my teachers assumed that I was lazy. My husband thought I was depressed. I wanted to do things but I physically couldn’t move. I’d get so tired I didn’t feel safe driving. He’d work all day and come home and I wouldn’t even be dressed. It wasn’t like we had a dynamic where he wanted dinner on the table but he wanted us to enjoy our evenings together. I’d say “Oh, I got up this morning! I started the dishwasher…” I think now I know what my limitations are it will be a lot easier to adjust to being in a relationship. I came across as sad and disinterested. It’s not that I didn’t want to get up early or do things with my husband; I just couldn’t. Admitting to this is very difficult because it seems like I’m victimizing myself.
You’re single now, what’s dating like? I’m thinking about safety. Would taking a guy home be scary for you?
I never know if alcohol will keep me awake or put me to sleep so I only drink with people I trust. It’s more likely that I will get drunk when I am out with my parents than with a date. I need to know I am in a safe situation. It’s very difficult to date because people really don’t understand. I’m that girl in the Jay Z song falling asleep in a bowl of soup, or pasta, or whatever it is. I was recently seeing a guy and it fizzed out and now I’m thinking about things from his perspective. I canceled a lot. Sometimes I just didn’t show up. I would say I wasn’t available when I had previously said I was. I would organize dinner and oversleep. The truth? I was blowing him off to nap. I’d just fall asleep and slip off the face of the Earth. What must he have thought?
That you just weren’t that into him … ?
Right. I would have come across as a total flake and I didn’t even think about that because I was so focused on myself. I was being evasive and unreliable.
So really, you were acting like a single dude from New York City? Maybe I should call back all the guys who have ever ghosted me. They probably have narcolepsy, right?
That’s the thing though: You never really know what’s going on with people. They might not know even what’s going on themselves. He had no idea what was going on and here I was wondering why he was putting up so many walls. He was protecting himself. We would make plans and he would get excited, and I can’t even pick up the phone because I’m asleep.
Do you take medication, or are there any chemicals that help?
I talk with a therapist and I see a sleep specialist. But I don’t take prescription drugs because I’m very sensitive. If I take an antibiotic, I’ll get every side effect. They just don’t agree with my body — it’s not a political stance. A lot of people in my support group take Adderall during the day and smoke weed at night. I’m waiting for the laws in New York to change so I can get medical marijuana, but I haven’t tried Adderall — I’m concerned about the impact that it will have on me. I drink coffee throughout the day and I always carry around a tiny glass jar with about 12 chocolate-covered espresso beans in it. If I feel my energy dropping and I can’t get coffee I’ll chew one.
You said earlier that you were very family-oriented. What are your thoughts about having kids? Is that something that you even want, or do you worry about your condition?
My life just would not be complete if I wasn’t a mother — it’s something that I have always wanted. But I just had my 35th birthday, so I am approaching “that age” when they say everything gets hard. So, I have to be realistic. A friend recently told me that he’s giving me a voucher to have my eggs frozen. I’m not even sure he was joking. And the ironic thing is that this is a 43-year-old childless bachelor! You know that typical Long Island trust-fund baby? Who is he to tell me to freeze my eggs? As much as I want to have kids my focus is finding a stable career. I know I’m going to be a mother, and, ideally, I fall madly in love and raise a family with a husband — but I can accept it if that doesn’t happen. If I’m still single in a few years, hopefully I’ll be in a position where I can afford to pay for help. It might be difficult to be a single mother who is dependent on her afternoon nap! But, I’ll make it work. I think the main obstacle is that I’m divorced and I don’t have a partner. But there are many children out there who need to be loved, so adoption is certainly an option. I want to be a mother, and for me it’s the act of loving and caring for another person that’s important. I want to encourage my children and share my life with them — they don’t need my genes.