Wednesday, July 28

When Narcolepsy Takes Over

Being married to a Narcoleptic is like living with two people: There's your beloved spouse, who has several wonderful qualities (of course, or why would you have married them?) and whom you love dearly, and then there is the Narcolepsy, who is selfish and aggravating and whom you may sometimes tolerate, but you actually hate with a passion.

My husband is so funny. He makes me laugh every day, which is awesome because I love to laugh. Sometimes it's silly self-deprecating humor, sometimes it's witty little comments about life. He is also very kind. He's one of those people who sees a teary-eyed kid alone in a store and starts walking over before I even notice anything's wrong. He is incredibly resourceful and clever, smart and confident, and he is a really loving husband and father. I adore him.

Image courtesy of Ambro/FreeDigitalPhotos.net
My husband's Narcolepsy is his unwanted but constant chimera. It's completely selfish; no matter what we're doing or what we've planned, Narcolepsy gets first dibs at my husband's time. It interrupts him at work, during dinner, on a date, while playing with our daughter, or even while he's trying to relax and enjoy a movie. It has no concern for his health. It often robs him of his memories, motivation, energy, and adds to his anxiety. It likes to scare him with horrific nightmares and tries to control him when he drives. It's already taken several years of his life, yet it refuses to give in and resists any medications we feed it. I hate Narcolepsy and I wish it'd never met my husband.

That's really how it feels to me.

I can look into my husband's eyes and instantly know when I'm looking at my true love. His eyes are warm, patient, loving, and sparkle with mischief. I gaze into them and feel a true sense of belonging to another human being.

I can also look into his eyes and recognize when Narcolepsy is looking back at me.

Even to this day, it astounds me that I can look into those same eyes and see a cold distant anger, tiredness, annoyance, and disdain. I cast my eyes downward when I look into Narcolepsy's face. I refuse to look it in the eye - not because I'm afraid, but because I'm enraged. I resent it for hiding behind the face of the man that I love. But rather than give in to the anger that it wants me to show, I swallow my words and treat Narcolepsy with tenderness. I know that my husband is also in there, waiting to take his place again.

8 comments:

  1. incredibly insightful post. My son has N and C, and so many of our family members and friends are being very hostile because they are not getting that it is the condition causing this behavior. I just discovered your blog tonight, and am appreciating it very much. You write well, and your husband's symptoms ring so true to what I have observed. Off I go to read more.

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  2. Thank you so much - tell your son to hang in there! Sometimes it's those closest to us that are the most close-minded when it comes to this illness... go figure.

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  3. great blog, I am the narcoleptic in my household, and I think my husband is alot like you. He is so caring and wanting and willing to help me with anything he can, but then there the times I just know that he is so aggravated at the narcolepsy but taking it out on me. Keep up the great writing it is really inspirational and informative.

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  4. DEAR NARCOLEPTIC'S WIFE,
    OMG!!!!!! I HAVE TRIED SO HARD TO GET PEOPLE TO UNDERSTAND WHAT THIS DISEASE REALLY DOES TO A PERSON,I'M SO TIRED OF PEOPLE CALLING ME LAZY,OR [MY FAV] I'M NOT TRYING HARD ENOUGH TO GET BETTER. I DIDN'T GET SICK UNTIL I WAS 36,IT TOOK ME 11 YRS. TO WIN MY DISABILITY BECAUSE OF THE FACT THAT PEOPLE DO NOT UNDERSTAND THIS DISEASE. I HATE IT,IT TOOK ALL I HAD WORKED SO HARD FOR, FOR MY 3 KIDS. BEING A SINGLE MOM MAKES IT EVEN TOUGHER.I OST EVERYTHING,MY HOME,CAREER,401K[GONE IN A YR] FINANCIALLY I WAS RUINED,LOST MY ONLY MEANS OF TRANSPORTATION,AND THE LIST GOES ON. MY FAVORITE SAYING I HERE ALL THE TIME IS "IT'LL GET BETTER", WHAT THEY DON'T REALIZE IS THAT IS ABSOLUTELY NOT TRUE. MY DOCTOR THOUGHT THAT SINCE I DIDN'T GET ILL UNTIL 36 I HAD PLATEAUED,AND THAT I WAS WHERE I'D ALWAYS BE,WELL, BOY HE CALLED THAT ONE WRONG. I HAVE THE WORST CASE HE TREATS,HE'S ALWAYS SAYING I NEED A VACATION,I NEED TO GO TO STANFORD,BUT ON DISABILITY THAT'S NOT GOING TO HAPPEN.AND NOW MY STATE HAS DECIDED THAT WE HAVE TO PAY OUR SPENDDOWN,EACH MONTH INSTEAD OF TAKING IT FROM OUR DR APPT'S. MINE IS ALMOST $150.00 AND I STILL HAVE 1 CHILD AT HOME TO RAISE,I JUST DON'T UNDERSTAND HOW THEY EXPECT YOU TO LIVE.I GOT TO GO TO ONE OF THE NARCOLEPSY CONFERENCES,ALMOST 12YRS.,AFTER MY DIAGNOSIS. UP UNTIL THEN I WAS ALONE,IT WAS SO SURREAL,I DIDN'T FEEL LIKE I HAD TO BE ON MY GUARD,AND I FELT NORMAL AGAIN FOR THE FIRST TIME IN 12YRS. BUT, THE SIMPLE FACT IS THAT U NLESS YOU ARE WEALTHY OR ABLE TO WORK,YOU CAN'T AFFORD TO GO EACH YEAR,BECAUSE THEY HAVE IT IN A NEW PLACE EACH YR.,THEY DIVIDED TO DIVIDE THE STATES,AND THAT'S HOW THEY DO IT.MINE STARTED DURING MY LAST PREGNANCY, SO I HAVE HAD TO DEAL WITH MY SON THINKING HE CAUSED IT,EVEN THOUGH THE DR. TOLD HIM THAT WASN'T TRUE. WE ARE IN A BAD SITUATION,AND HAVE BEEN TRYING TO MOVE FOR A YR. NOW,HE ASKS ME ALL THE TIME WHEN THE BAD THINGS ARE GOING TO STOP HAPPENING TO US... BUT,HOW DOES ONE ANSWER THAT WITHOUT LYING OR STRETCHING THE TRUTH. BELIEVE ME WHEN I SAY I KNOW HOW YOU MUST FEEL BECAUSE I LIKE ME THE PERSON BUT I HATE ME THE NARCOLEPTIC. THANKS FOR SHARING YOUR STORY. SINCERELY, BARBARA HOPKINS

    barbara.hopkins39@yahoo.com

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  5. Your words are what I feel on a daily basis within myself. I have narcolepsy. You are an inspiration of hope that there are others out there who are just as kind, compassionate, tolerant, strong, and beautiful as you, who will love me and be capable of dealing with my disease too. Thank you.

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  6. This is the first time I've read your blog and it explains my life to a "t". I love what you say in this set. I do see immediately upon looking into my husband's eyes whether I am looking at him or at my "other" husband. It sucks! But, my vows were "for better or worse, in sickness and in health". Good thing we don't know what's coming in the future or no one would be able to make those vows. Thank you for your blog! It truly helps!

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  7. Great blog. My wife would agree with you on all counts. Like you, she has gotten very good at recognizing if i'm having a bad narco day, or if i'm having a crash. It doesn't make it easier, but at least she understands what is happening, and with that she can focus her anger at the disease and not me. To your credit, along with my wife, it takes a strong person to live with a narcoleptic. From my perspective, if narcolepsy were simply an issue of falling asleep without notice, it wouldn't be so bad, I can deal with that. Unfortunately, it's not. Narcolepys hijacks our personalities, changes our perspective, changes us. things seem so much more difficult, depressing etc. It gets to the point, i'm aware that i'm under the influence of narco monster, sometimes i feel it hit me, know what's to come. But, i also know, when i get those days where mr. narco isn't near, not even a hint, those days life is beautiful, and that's when thank my wife for helping along the way. And I'm sure your husband feels just as greatful to you.

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  8. Hopefully it's never too late to say how grateful I am for these wonderful, touching comments. They truly encourage me to keep going on the more difficult days... Thank you all for sharing. XO

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