Though these depictions are intended to make you laugh, narcolepsy is a really scary disorder that affects real people.
Being married to a narcoleptic is like having two different relationships going on at the same time. On one hand you have your relationship with your spouse, whom you love dearly, trust completely, and pretty much cannot live without (after all that IS why you married that person is it not?). But on the other hand, you have a relationship with Narcolepsy—who is a selfish and aggravating monster that you try your best to tolerate but you actually hate with a passion beyond which you have ever known.
For those of you who do not know, my husband was recently
diagnosed with this monster called narcolepsy.
Narcolepsy gets first dibs on his time.
It interrupts him while he is at work, when he is trying to complete
school work, and when he is at home with his family. It affects him all the time. His family, his friends, his work associates—we all come second to
narcolepsy. It affects him at dinner, when
we are out on dates, when watching movies or catching up on TV shows at
home.
This monster has no concern for his health or the health of
those around him—trying its hardest to interrupt him while driving, causing him
to drop things (he hasn’t dropped the baby yet—but it has been close). It refuses to give in and is resistant of the
medications we have been throwing at it.
And if this on its own is not bad enough, narcolepsy almost always brings
along its friends cataplexy and REM sleep behavioral disorder. For those of you who don’t know cataplexy is the abrupt loss of muscle tone, usually triggered by a strong emotion. So picture something emotional (someone you know dying, seeing a family member struggling to heal from a traumatic surgery, even something as little as your partner being angry and yelling at you); instead of a normal response a person with cataplexy will basically faint without losing consciousness. The person’s entire body will go limp for a few seconds to a few minutes but mentally the person is completely aware of what is happening. That is cataplexy.
REM sleep behavioral disorder is narcolepsy’s sleepy time partner. You think that falling asleep all the time is bad enough---REM sleep behavioral disorder affects you while you sleep and can range from paralysis during REM sleep to unconsciously acting out a dream. This includes sleep walking (people have even been known to drive during this condition), getting into strange positions in bed, violently flailing and hitting, having full conversations, or jumping suddenly out of bed. Sure this can be funny—sometimes, but one can only wake up to someone standing over them so many times before their heart gives out.
A person with narcolepsy is not just tired or falling asleep all the time. People with narcolepsy often suffer from problems
with concentration, irritability, short-term memory loss, and mental
confusion. Imagine trying to have a
conversation with that. And so, I will be
the first to admit that I am not dealing with this monster well. This monster brings out my own personal Mr. Hyde. It is frustrating to always have to repeat things, to do most things by yourself because he has fallen asleep AGAIN, to constantly be the chauffeur for the entire family. It is scary to leave our children at home alone with him or to let him drive which means that I rarely get alone time. And on top of those concerns, every time he is late I wonder---did he fall asleep at the wheel and get in a horrible car crash. Like I said, this monster, it affects the whole family. Even though I know that my husband cannot control it;
it is a chronic neurological disorder after all, it still angers me. I just hope he knows that I am angry at the
narcolepsy and not with him.
