Tuesday, August 31

I'm Glad It Ain't Me - A Confession

I have a confession to make.

I'm glad I'm not the one with narcolepsy.

This doesn't mean that I wish my husband ill - I'm not psycho - but of the two of us, I'm glad it's not me.

There. I admitted it.

If you're wondering why, it's because I don't think that I could handle it. I have a slightly manic personality. I'm always busy, always moving, and it's very difficult to turn off my mind - even to sleep. It's actually a little bit of a problem sometimes. It takes a whole lot for me to relax and even more to enjoy it. I'm a perpetual list maker, multi-tasker, Superwoman wannabe. I can barely keep up with myself as it is... if my brain and body wouldn't (or couldn't) cooperate with me, I think I'd go nuts.

Also, I'm good at taking care of people. Partly my maternal instincts, partly just my nature, I'm a good caregiver. I'd much rather play nursemaid than be taken care of.

That said, I can't wait until no one is ever sick, including my long-suffering husband, who tries his best to live his life - heavily altered by narcolepsy. Altered or not, it's still his life...
and I enjoy being a part of it.

Sunday, August 29

Step One - Find A New Doctor

I have officially declared myself to be my husband's advocate. What that means exactly, I'm still working on, but for now it means helping him.

The most important help for the treatment of narcolepsy - or any other chronic illness - would be finding a good doctor. A doctor who not only understands the disease, but is willing, able, and eager to help you find treatment for it. My husband's current doctor is not that guy.

In the past two years since my husband's diagnosis, I can count the number of times he's had a conversation with his current doctor on one hand. Now he's visited the sleep center where the doctor is located dozens of times, but rarely actually gets to see the doctor. This is because the doctor is never there or too busy to see my husband during his scheduled appointments, so instead my husband talks to the nurse on duty. His appointments go something like this:

They weigh him, take his blood pressure, and ask, "So how have you been feeling?" My husband tells them any symptoms he's been experiencing - or he doesn't. Either way, the result is the same. He gets his new prescription and leaves. Even when he tells them that things aren't going so great - which they often aren't - the visits are very, very brief. Even when my husband repeatedly asked to have the pressure on his CPAP machine adjusted - he was waking up gasping at night, even with his mask in use - they never called back, never returned messages, and of course we never heard from the doctor himself. This led to the night my husband could've died. They always mailed out his prescriptions late. Despite reminder phone calls from us a week in advance, the prescription would inevitably arrive 2 -3 days after my husband had already run out of his medicine. This led to an ugly cycle of sudden withdrawal which wreaked havoc on his mental/emotional state.

Now I'm sure you understand Step One: find a new doctor.

My husband has an appointment with our family doctor in a couple of days. I'm going with him. I've made a list of things to discuss with the doctor, including the fact that the specialist we're seeing isn't doing anything special. He's not even doing anything helpful. Hopefully our family doc will be able to recommend someone else.

Someone who cares.

Friday, August 27

A Narcoleptic's Guilt

Image courtesy of bigjom/FreeDigitalPhotos.net

My husband apologizes a lot.

I didn't notice this until a couple of years after we'd been married. I figured it was a quirk. We'd often have those conversations that are parodied on TV:

"I'm sorry."
"Why are you sorry? Stop apologizing."
"I'm sorry, I'll stop."
"You just did it again!"
"Sorry..."

...and so it goes.

Over time, I realized something. He apologizes sincerely, because he feels guilty. He feels guilty because his illness is a weight that prevents him from being the husband he envisions in his own head.

That's pretty deep stuff right there.

Imagine that - in your mind, you should be THIS. Whatever THIS is for you as a wife, husband, friend, sibling, employee, you have a mental picture of what you should be.

But you can never be that.

It isn't your fault, so why feel guilty? This really made me pause when I realized how my husband was feeling. Every day, he felt like he wasn't doing enough. Every day, he took stock of his failures. Lists unchecked, chores left unfinished, projects abandoned. Day by day, it stacked up - this pile of failures. It's his pile, and only he knows how tall it stands, but for him, it's always there. That makes me so sad for him because that is certainly not what I see. I'm so proud of him for getting up each day and persevering despite his constant fatigue. I don't know how he does it sometimes.

As if the weight of narcolepsy wasn't enough to bear, he has the added burden of guilt. Hopefully my bearing some of the load will allow him to breathe.

Wednesday, August 25

Narcolepsy and Depression - A Natural Combination

Narcolepsy is depressing.

Picture the life: You are intelligent, love to be active, involved, affectionate, and funny. But your illness makes you dull and slow. Mentally lethargic, you'd rather just listen to the conversation rather than participate. You can sometimes make it to the party, but the first thing you need to do is find a place to nap.

Such is the life of my husband, the narcoleptic.

Understandably, he gets down about his condition. A born list-maker, he always has a million things he wants to get done each day. Realistically, he often has to settle with just getting through the day. This frustrates him and sometimes saddens him. Many times he gets very sad. So sad that he feels hopeless. So hopeless that he feels like giving up. He swings from ranting to crying and back again, in an exhausting cycle of emotions that drains us both.

That's depression.

My husband didn't think he was depressed. He thinks that he's just "messed up" sometimes. While I certainly respect his opinion (it is HIS body, after all), I vehemently disagree. See, about 10 years ago, I was clinically depressed. Major depression was a large part of my life for many years. Too many. I spent years seeing psychiatrists and therapists, participated in group therapy, tried several different anti-depressants, and was even hospitalized a few times.

Nothing helped.

Eventually, I decided that if I was going to get well, I'd have to take matters into my own hands. When I did, I slowly got better and now all these years later, I know I made the right choice. But that's another post. My point is that, if nothing else, I recognize the symptoms of depression. I recognize them like I recognize the facial features in a photograph of someone I once hated. Someone who stalked me relentlessly, teased and tortured me, and fought tooth-and-nail when I was finally able to push them away. Yes, I know depression.

So what to do? If you suspect that someone you love suffers from depression, can you force them to get help?

No, but you can show them what healthy looks like.

In describing my experience with depression to my husband, I saw recognition in his eyes. Now I just have to introduce him to something else.

Hope.

Monday, August 23

Living In Your Head Without Anything to Numb You

Today I realized that I listen to Sia a lot. She's a musician who has a lovely voice and wonderful arrangements, but I like her so much because she sings about feelings and such. So today I was listening to "Numb" which is an oldie but most definitely a goodie. The song is really (in my opinion) about someone she loves and wants to be close to, but they'll first need to stop numbing themselves... with drugs, food, alcohol or whatever - she doesn't mention any of those specifically, that's just my take.

The song's refrain is "It has to end to begin." In other words, her loved one will have to stop doing whatever it is that's numbing them to "begin" a new chapter in their life. That's what I think re: my husband's current lifestyle. I think some things will have to end in order for him to begin to thrive despite having narcolepsy.

It isn't that I think he's failing, but he's just... surviving. I want him to thrive despite his health conditions. I believe it's possible or else I wouldn't be trying so hard to help. But who am I to force him to change things? Besides, he was only diagnosed with his illnesses 2 years ago. I think he's still getting used to the idea, actually.

When your chronically ill spouse has the mental, emotional, and physical energy to change, be there to help - hold their hand if necessary. Until that time, support them in what they can do now. That's what I'm trying to do. I want my husband to try some new treatments, find a new doctor, get off his current meds... but right now, he can't motivate himself to do those things. He's just trying to make it through each day. Until he's ready to try some new things, I'll keep researching and reading and blogging... and holding his hand.

*For the lyrics to the entire song "Numb" by Sia, you can click this sentence.

Saturday, August 21

How to Have a Conversation With a Narcoleptic

Image courtesy of Boykung/FreeDigitalPhotos.net

It sounds like the opening to a really good joke, doesn't it?

If you don't already know this, a person with narcolepsy is often tired and sleepy. But that's not all. They often suffer from problems with concentration, short-term memory loss, irritability, and mental confusion. Imagine having all of that going on and try to hold a normal conversation.

It ain't easy.

With my husband, I've learned to repeat things. A lot. It's not that he isn't listening or didn't hear me. It's just that it didn't quite register. Imagine his mind is a sleepy, distracted person trying desperately to play ping-pong. If I fire the ball at him, he definitely won't hit it, but if I lob it gently over and over, eventually he'll reach out at just the right moment and voila! He gets it.

Then there are the other times.

Other conversations are just the opposite. By nature, I'm a fast talker. No, I'm not a swindler - I just speak really quickly. Over the years I've learned to slow down and let people get in a word every now and then, but I never have a problem spitting something out. Every now and then though, my narcoleptic husband out-talks me. Excited and eager to share his thoughts, he impatiently trips over his own words in a rush to get them all out there. It's like verbal ping-pong, it's so fun talking to him in that mode. Back and forth we bounce ideas off of one another, laugh at impromptu jokes, and frequently apologize saying, "I'm sorry, go ahead," when one of us gets too excited and interrupts the other.

It's weird, but that's narcolepsy.

Of course I prefer the times when my husband is more articulate and engaged in the conversation. I fight impatience when he has to speak slowly, when there are lengthy pauses while he fights to remember what he was saying, dead silences as he contemplates an answer to my easy question. At those times, I know he's just a prisoner. Narcolepsy is holding his brain hostage once again.

I still haven't figured out the cost of the ransom.

So for those who genuinely want to know how to talk to their friend, co-worker, or loved one with narcolepsy, the answer is simple: be patient. If they stumble, forget, or ask you to repeat, just be patient and wait for them to hit the ball. They may speak slowly this time 'round, but the next time, you may just need to get your paddle ready.

*For a very insightful view of how a person with narcolepsy sometimes feels trying to converse with people, read this blog post from Confessions of a Narcoleptic.

Thursday, August 19

Vow - What It Really Means

I'm not just going to tell you that the dictionary defines vow as "the words said when making a formal pledge." I'm not only going to mention that the origin of the word one refers to one who makes a sacrifice, or list the synonyms of vow being oath, promise, and guarantee. Instead, I want you to think of times you've heard the word actually used.

Probably only on special occasions, right? Like wedding ceremonies.

When you utter those words, "I solemnly swear" or some variation thereof, it may seem romantic and meaningful then. But what about later? When do you get to take back your vow?

You don't.
Image courtesy of Boykung/FreeDigitalPhotos.net
That's the very nature of a vow. The whole point is that you are promising that you are going to do what you're claiming you will... no matter what. If you vow to love someone and stick with them no matter what happens, then that's what you do as long as you're alive/able to fulfill your vow. In Biblical times, intentionally breaking a vow often received a punishment of death. Throughout history, dissolution of wedding vows was only acceptable if one mate committed adultery or of course, if one died.

We live in very different times.

Now we live in an era when breaking a vow is actually more common than taking one seriously. Today reasons for divorce are so trivial that it would be laughable if it weren't so sad. So what happens when you marry someone who appears to be perfectly healthy but they develop or are diagnosed with a chronic illness? Are you allowed to break the vow you made to stand by them in sickness and in health? Are you obligated to care for them forever? Consider a few examples:

Recently featured on a segment of 20/20 on ABC, Trish and Matt have been married for 13 years. When asked why she didn't consider leaving her husband, who developed narcolepsy and cataplexy during their marriage, Trish proudly stated: "I happen to love this guy." You can view their story HERE.

For Corey, who blogs about being a good husband, when people tell him he's brave for marrying a woman he knew was chronically ill, he says, "It's not really a bravery thing, it's a love thing."

For me, it's a no-brainer. I promised to try to be a good wife and love my husband come what may. Well, may has come and I'm not going anywhere.

Tuesday, August 17

Does Narcolepsy Make It Ok?

After my husband slammed the door in my face, I dropped my head and stared at the floor for awhile. When our daughter asked "What's wrong? Why is Papa angry?" I gave her a brief explanation and quickly distracted her. But later, she came back to it, asking "Is Papa angry?" My response included "It's OK," before directing her attention to something giggle-worthy.

But is it OK? Does having narcolepsy make it OK to treat your family poorly?

Here's the scenario in a nutshell: the sleep center that "treats" him didn't have his prescription ready for pickup. (In the past they mailed it, but we put a stop to that when it was sent late every month). Before he drove all the way back there, I suggested we call first. He refused. I insisted. He refused again. We went back and forth for a bit, in an I-totally-disagree-but-I'm-calm way until he suddenly shouted at me, slammed the door in my face, and stormed to the car. I went outside, waving to him, but he ignored me and drove away.

I just wanted to remind him: don't drive angry.

I'm not one of those people who thinks an argument is the demise of a marriage. When two imperfect people live together, disagreements happen. But yelling and slamming things isn't good for any relationship unless you're WWE partners.

So is it narcolepsy's fault then?

I'm pretty confident that my husband will apologize later, and explain how he feels w/out his meds. I'll accept the apology and gently urge him to allow me to help him more. To be an advocate, I have to be allowed to help. I wanted to deal with the sleep center today, but he chose to go without me. I wanted to call to make sure that his 2nd
Image courtesy of David Castillo Dominici/FreeDigitalPhotos.net
visit there wouldn't be a wasted one, but he wouldn't allow that either. No one likes to be made to feel incompetent, and I'm certainly not trying to make him feel that way.

But I'm not liking the way I'm feeling now either.
The answer? No. Nothing ever makes it "OK" to treat people you love like dirt. But sometimes there are valid excuses.

I'll let my husband give his later.

Sunday, August 15

Narcoleptic Does Not Equal Lazy

A narcoleptic may be tired, but that doesn't mean that they can't get things done. The other day my husband did chores, completed a repair on the car, ran errands, took our daughter on an outing, and was able to stay awake at the dinner table.

Image courtesy of Ambro/FreeDigitalPhotos.net
When we moved, my husband pushed himself all day in the hot sun until our large moving truck was empty and all of our furniture was (roughly) in place. Before the group of people we had helping us left, he passed out. Literally.
He collapsed, unable to get up, and slept for hours right where he'd given out. It wasn't until that evening that he was able to struggle to take a shower and collapse again - this time into bed.

So although my husband can at times force himself to keep going when all he wants to do is sleep, it isn't good for him when he does. It only intensifies his symptoms and sometimes makes his cataplexy more severe.

Although the temptation may be to push himself until he drops, it just isn't a lasting solution. The recovery is just too taxing.

Friday, August 13

Narcolepsy Is Absolutely Not Contagious... Right?

I've been very tired lately.

It's funny how a lack of sleep is the last thing we consider when feeling unwell. I considered everything but sleeplessness as a reason for my malaise. Then one day - I fell asleep.

I never fall asleep, even when I should. But this day, I fell asleep in the middle of the day, quite unexpectedly.

Apparently, I need more sleep.

It's makes perfect sense. Sleeping with someone who can never get a good night's sleep is bound to affect their partner. Not to mention we have a toddler who sometimes decides to wake up at 3am. It's hard to predict when I'll go to bed though. For instance, last night my husband called home around 11:00pm to tell me that he'd have to nap before he drove home. Worried, I waited up for him. I didn't get to bed until 2am. Our daughter gets up at 6.

If I'm going to be an advocate for my husband, I'm going to have to take better care of myself. Isn't that the first rule of care-giving? The caregiver must take care of self first. That's going to be hard for someone who considers her family's needs before her own and feels guilty if she doesn't.
For starters, I've begun painting again. I started a series of ACEO (Art Cards, Editions, and Originals - art the size of baseball cards) with different themes, including narcolepsy.

I feel better already.

Wednesday, August 11

I Hate Adderall... and It Hates Me

So last night I finally told my husband how much I hate his medication.

Adderall.

If you could hear the loathing in my voice when I spit out that word...

My husband has narcolepsy. That means he is often sleepy, tired, or mentally drained. The solution to that would simply be to wake him up, right?

Wrong.

The solution actually does not currently exist as narcolepsy is incurable (for now). But there are several treatment options available, including a variety of medications that can help alleviate or lessen symptoms. Unfortunately, I don't believe Adderall to be one of those for him. Although it does keep my husband awake sometimes, the side effects are so extreme that the moments when he is lucid aren't even worth it.

Here are some of the benefits of Adderall:
  • Improved concentration
  • Mental alertness
  • Appetite suppression (some may consider that a benefit)
That's the effect I can see it has on my husband. Here are the side effects:
  • Irritability
  • Inability to sleep
  • Teeth grinding
  • Loss of appetite
  • Agitation
  • Mood swings
  • Depressed moods
  • General anxiety
  • Increased desire for nicotine (in ex-smokers)
Image courtesy of Stuart Miles/FreeDigitalPhotos.net
See the difference? I'd rather have my un-medicated, sleepy husband who is at least normal to a certain extent than the alert but antsy, unpredictable guy Adderall makes him. Last night when I told him exactly what I thought of his medication, I felt like I was confessing to hating one of his close friends or something. His reaction was similar. He sighed, admitting that he knew it wasn't the best for him, and he was already considering letting it go. Like telling the friend who isn't good association, "Sorry, man. We can't hang out anymore."

So now as he weans himself off of this drug, we're going t figure out what to do next. Until then, good riddance.

Monday, August 9

The Narcoleptic Parent - Dangerously In Love

Image courtesy of arztsamui/FreeDigitalPhotos.net
Can someone with Narcolepsy really be a good parent?

My husband and I have one child. We adore her, dote on her, and watch the sun rise and set on her. She is a precious, genius child - and I say this with absolutely no bias at all of course. She is 3 years old. Because we have planned for just one child, ours is a very relaxed family in which she is the centerpiece. She's like the playing card that makes that cool sound as the bike's spokes turn 'round.

Notice that I said that we adore her.

I know that my husband loves our daughter. I'm also proud to say that he's a very good dad. He's never hesitant to get down on her level to play with her, read with her, or make up silly songs. I like seeing them together. As any mom would understand, it does my heart good. When Narcolepsy takes over, he struggles to treat her with love and kindness, even when he's tired or irritable. Sometimes he fails at this, but then again, sometimes I do too.

But I've never left medication within her reach.

This is a recurring problem for us that started about a year ago. When my husband was taking Provigil, this never happened. It was when he was switched to Adderall that the issues began. One evening, I was washing dishes when my then 2-year-old walked into the room chewing something. Immediately, I opened her mouth and wiped out tiny pieces of something orange and chalky. The color looked familiar, but I just couldn't place it. I investigated - checking each room, looking under furniture, going through her toy box... nothing looked even close to what had been in her mouth. I saved the fragments in a napkin and considered calling Poison Control. Because she was acting completely normal, instead I called my mother. Hours later, my daughter was still acting normal - except... she seemed a little hyper, she refused to eat or nap all night, and then she started to move her mouth in a weird way. It was barely noticeable, but eventually I realized that she was grinding her teeth! Then I knew. She had eaten one of my husband's Adderall pills.

That night was terrifying, but it could have been so much worse. Because I had wiped most of the pill out of her mouth, it was determined that a hospital visit wasn't necessary unless she started exhibiting certain symptoms that would indicate she was having an adverse or allergic reaction. I was instructed not to leave her unattended, and when she did fall asleep, to watch her breathing for several hours. Suffice it to say it was a long night. My daughter wasn't able to fall asleep until the next day. By then, my whole family was exhausted but relieved. She was OK.

Although I was initially furious with my husband, I got over it. It was an accident. He dropped a pill on the floor and didn't notice. Our daughter was fine, he would be more careful, life would go on. I let it go.

Until it happened again.

This time I found several pills on the floor of the car and got to them before our daughter did. The next time they were in-between the cushions of the couch. The next time the bottle was on the living room table. The next time I found a pill on the floor of the bathroom. Most recently, the bottle was on the sofa in the living room. Because no pill bottle is truly, absolutely child-proof, I consider leaving a bottle of prescription medicine within her reach just as dangerous as leaving a single pill.

We've had several discussions about my husband's carelessness. I know that he doesn't mean to put our daughter in danger, but that isn't the point. He resists any suggestions I make to keep his medication in one particular place because he prefers to keep it on his person. This also means that he sometimes leaves his medicine at other places and then doesn't have it when he needs it. Narcolepsy makes my husband incredibly forgetful. Believe me, if you aren't familiar with narcolepsy, you can't imagine. He literally forgets things all the time. It drives him nuts. Lists and nagging don't help - so his frustration with his memory is hard to watch. That's why he prefers to keep his medicine with him at all times. Otherwise, he might forget to take it. I'm sure there's a solution that will work for our family - we have yet to find it but I know it's out there.

As for my question - can a Narcoleptic really be a good parent? I think the tone of that question is a little inflammatory. Would I ask, can someone with cancer be a good parent? Can someone suffering from depression be a good parent? Can someone with any kind of chronic illness be a good parent? How about, Can someone out-of-shape, undereducated, poor, or ______________(Fill-in-the-blank) be a good parent? To me the answer is obvious. My husband knows that he can do better keeping our daughter safe. And he's willing to try. So no, maybe not everyone with a chronic illness is a good parent. Maybe they simply can't be because their illness is too debilitating. For others, maybe they do the best they can and are willing to try. To me, that's a good parent no matter what sort of health they're in - that willingness to try.

Saturday, August 7

Narcolepsy Haiku

From Savage Chickens


Everyone is familiar with haiku, right? In case you aren't: familiar with this beautiful poetry form: "Japanese haiku have been traditionally composed in 5-7-5 syllables. When poets started writing English haiku in the 1950's, they adopted this 5-7-5 form, thinking it created a similar condition for English-language haiku. This style is what is generally considered "traditional" English haiku." Taken from AhaPoetry.



From Literarious
Last night was... not good. None of us slept well. I had a terrible nightmare last night which was quite unusual for me. I can't even remember the last time I had one. It was really awful... I thought that I was going to describe it but I can't yet. So rather than blog about it, which is what I really want to do, I'll post some of my favorite haiku. I love them. I try to write one a day. Aren't those awesome? That cheered me up already. And here are mine:


N Haiku #1
-------------------------
The Narcoleptic -
misunderstood often, true...
but forever loved.

N Haiku #2
-----------------------
You hallucinate -
your demons alive, breathing
our love will slay them.

Thursday, August 5

Yes, Sleep Disorders CAN Kill You

Jimi Hendrix. From Johannas Visions

Jimi Hendrix, John Bonham, Anna Nicole Smith... my husband was almost on this list. People Who Have Died Choking on Their Own Vomit.

Officially it's called aspiration of vomit, which means that a person literally breathes in their vomit. This can cause breathing trouble, obviously, but it can also lead to choking, pneumonia, or asphyxiation. It happens most often when a person is too inebriated - either by drugs or alcohol - to realize that they're vomiting, probably because they're unconscious.

It can also happen when you suffer from sleep apnea and sleep paralysis.

I never knew that combination could be deadly. No one ever cautioned us either. But one night, it nearly cost my husband his life.

John Bonham. From DrummerWorld
This past March, my husband and I went to bed early. He had taken the weekend off so that we could attend a religious assembly, so we went to bed early in order to get up early the next day. A few hours later, I jerked up in bed, startled awake by the strangest, scariest sound I've ever heard - to this day the thought of it gives me chills. I didn't immediately realize that it was my husband. In fact, I couldn't place it at all. Terrified, I turned on the lamp and saw my husband jerking in our bed, vomit on his face and chest. I screamed his name and tried my best to help him sit upright or at least turn over. When he was able to move on his own a couple of minutes later, he exploded from the bed, rushing around the room still making that horrific choking sound.

I admit, I didn't do the right things. I didn't call 911, I didn't administer the Heimlich maneuver, and I didn't act calmly or rationally. Instead, I kept screaming, "What's wrong?!! Honey, what's wrong!!!" After several minutes of this, he gestured for pen and paper, which I promptly got for him. With shaking hands he wrote that he must have gasped in his sleep (as he often does), and started choking. He then regurgitated and since he couldn't move right away, he started to choke on the vomit in his throat.

Concerned that he may have breathed in some of it, I wanted to call 911, but he refused. We argued a little, but we were both so shaken that I gave in. He couldn't talk for a couple of hours and when he finally could, he voice was raspy and strained. When he was able to lay down again - on his side - I called his doctor.
AnnaNicole Smith. From The Sheila Variations
"I know it's after midnight and no one will hear this until hours from now, but I'm calling because my husband almost died just now and I'm a little upset," was my angry intro to the lengthy message I left. My husband is being treated at a local sleep center. I use the term "treated" with contempt. For over a year, they've done very little to help him. Very, very little other than writing prescriptions for a drug that doesn't seem to be working. My loathing for the "treatment" he's received will be the focus of another post, but suffice it to say I'm unsatisfied. But I never did anything about it.

Usually they take days to return our calls - if they ever do. Usually we end up calling repeatedly until someone transfers us to someone else who can then transfer us to the right person. After I left that message that night, they called back later that day.

That night was when I decided to become my husband's advocate. He could've died - that's all I kept thinking about for weeks. I usually sleep with earplugs, but I didn't use them that night. What if I had? What if we had slept separately that night? What if my husband died because he doesn't know much about the disorders that plague him and neither does his wife? We didn't know how dangerous sleep disorders can be until my husband almost lost his life.

I had to do something.

Tuesday, August 3

Cataplexy Isn't Funny In Person

When our daughter was born, my husband almost dropped her once.

I was enraged. How dare he risk our child's life by not being aware enough to put her down when he realized how tired he was?

Looking back, I can't believe how unreasonable I was.

The first time I remember meeting Narcolepsy's close personal friend, Cataplexy, my husband and I had been dating for awhile. He had this weird habit of taking deep breaths and closing his eyes whenever he was really amused at something. It was like he was trying to keep himself from laughing. Sometimes when I give into hysterical laughter, I get a bit of a piercing headache that goes away quickly. Sort of a laughter-brain-freeze, so I understood his desire to suppress his laughter.

But he wasn't always successful.

One day we were having a great time - dancing, laughing, playing around, and in the middle of laughing, he suddenly fell to the floor. Quite suddenly, actually. This was no slow slump or slide down the wall - he fell down like he'd fainted or something. Still laughing, I went over to him to help him up. I thought he was still joking around. I put out my hand.

From Vector Magz
"Come on, get up," I said.
When he didn't move, I stopped laughing and stared. He was just lying there, eyes open, his face still frozen in a smile. It was creepy. He looked like the Joker.
"Come on, knock it off," I said, and grabbed his arm.
It took a few minutes, but I finally got him to "unfreeze" and take my hand. By now, I was concerned... and confused.
"What's wrong? Did you hurt something?"
He didn't respond.
"Take my hand, I'll help you up," I said.
He whispered, "I can't."
I looked around as if someone could help us, but we were alone. I considered calling an ambulance.
"Why can't you get up?" I asked again.
His hand moved in mine - very slightly.
"I can't make a fist yet," he said.
Several minutes passed. Finally, he gained enough strength to sit up and I helped him onto the couch. Within 20 minutes, he was back to normal.

My soon-to-be-fiance was embarrassed and couldn't really explain what had happened to him. He told me that any strong emotion - anger, laughter, fear, even excitement - could cause him to "feel weak" and sometimes even collapse.

Baffled, I told him that he probably just needed a multivitamin.

Years later, after his narcolepsy/cataplexy diagnosis, I apologized to my husband for yelling at him the day he almost dropped the baby. I know that accidents happen and I also know how much he adores our daughter and would never intentionally put her in danger. He gracefully accepted my apology, but then I told him that I had a confession:

Once when I was changing her diaper, she fell off the changing table.

I swear I don't know what happened! One minute she was on the changing table, preparing for a new diaper, and the next minute she was on the floor, staring up at me with a really surprised look on her face. That's not the best way to discover that your baby has learned to roll over, but it happens. I was frantic but she was totally fine. You know, my husband didn't even get angry - didn't call me a hypocrite... he didn't miss a beat when he said,

"Good thing we had carpeting."

Sunday, August 1

Falling Asleep In Public

Image courtesy of imagerymajestic/FreeDigitalPhotos.net
I remember the first time my husband fell asleep in public.

We were at a talk, nicely dressed, surrounded by other nicely dressed people. It wasn't an enormous crowd; but it was a roomful - a little over 100. While taking notes, I was distracted, but when I gave my hand a rest, I noticed my husband's chin was on his chest. His eyes were open - barely - but he looked like he was in some sort of stupor. I gave him what I hoped was an unnoticeable nudge, which only slightly helped. I kept a close eye on him after that. Sure enough, just a couple of minutes later, his head was drooping again. Then he dropped a book. When he nearly fell out of his chair, I leaned over and hissed, "Why don't you go get some water?"

I didn't really hear the rest of the talk. Instead, I was hearing an angry litany of questions in my head.

Why are you so tired? You got more sleep than I did last night!
This is so interesting! Why aren't you interested in this?
How could you embarrass me like that?
When you started feeling sleepy, why didn't you just get up and go do something?!!!

Of all the inconsiderate, selfish, embarrassing... how could he have done that... to ME? I hate to admit it now, but I really was mortified.

Long after that talk, the narcolepsy diagnosis, and a few years of marriage, we had a conversation in which I felt a sincere apology was long overdue.

An apology from me.

See, Narcoleptics don't get to pick and choose when they're going to get tired, have a sleep attack, or lose concentration. That's why it's called narcolepsy! My husband never intended to fall asleep at that talk or any other public event. He can't always get up and get some water because... he's falling asleep. He holds a book in his hand to try to keep himself awake. Most importantly, he doesn't mean to embarrass me - or himself. That's right. It's not about me - it's about how annoyed and embarrassed he must feel as the one actually falling asleep in the middle of a super loud movie, or a concert, or anything else that he would like to watch but can't.

Long gone are the days when I would see someone fall asleep at a public event and "tsk" under my breath. Yep, I was one of those people. Now when I see someone who can't stay awake, my only thought is if anyone else notices, they'll give the sleeper the benefit of the doubt.

We actually still attend talks every week. I still take notes, and my husband still falls asleep sometimes. It's OK though. The notes help me to tell him what he missed.