Some slumber, some never wake

IMG_0012In response to The Daily Post’s writing prompt: “To Sleep, Perchance to Dream.”

Reading all the benefits of sleep sounds great in a conventional sense but then again….there is a group of us everyday people not depicted. How about those of us that cannot stay awake, yes its possible to sleep too much or at the most inconvenient times. Like in the middle of a meeting or maybe while driving 40 mph down the road. I would love to lose a little sleep. Or better yet to feel awake in the daytime instead of at 2:00am. This is my life and I have narcolepsy. What exactly is it, its not the funny portrayal that occasionally has been depicted on television. Often upon telling someone I have narcolepsy their first reaction is to laugh and say so you just fall asleep whenever. To be honest the only person allowed to laugh is the person who has it. I have in retrospect been able to laugh at some of my sleep episodes, and I have cried. I have felt deep embarrassment and despair. I had it most my life but the symptoms showed themselves in subtle ways. They also evolved and changed over time and its a sneaky disorder. When mine really started to show up it was also at a time of great stress and crisis in my life. At that time my oldest daughter was eighteen and was in a very serious car accident. She had to be cut out of her car and her heart stopped 2x. She had been hit head on by a Salvation Army truck. She was in surgery 9 hours while they put everything back together the best they could. She suffered a frontal brain lobe injury that improved but will never be gone. She has approx. 38-42 titanium screws in her face. The term they used for her facial injury was degloved. You could literally put your hand thru her face. she has wires and a titanium mesh eye socket also. Her sinus cavity was nonexistent and her jaw shattered. I worked fulltime and would end up taking 4 months off from work to care for her and to get her to months of massive amounts of Doctor visits. I was burning the candle at both ends. She was living with her boyfriend when this happened and they had a toddler and a infant. Because he worked swing shift he watched their daughters while I took her to what at times were 3 appt. a day. Some weeks she had 10 appts. She had lots of different types of Doctor visits in addition from physical therapy, cognitive therapy and personal counseling. She could not be left alone or care for her daughters for months.  She had absolutely no attention span and emotional outburst from her brain injury. So while the boyfriend worked I was there still. Often heading home at midnight after I had left my home at 9:00am. I started falling asleep anywhere I was. As I waited often 3+ hours a day while she attended her different therapies I would sleep almost instantly upon settling down on a chair. It was constant and I chalked it all up to exhaustion, stress etc. But….it didn’t get better. After going back to work and a resemblance of normalcy returned I still fell asleep anytime I was waiting anywhere. I got to where I couldn’t watch a movie on the TV  because I couldn’t stay awake. It was a big joke to everyone every  time I rented a movie because everyone knew I would be sleeping as soon as it started. I thought something was wrong with my eyes because I thought I kept going cross eyed whenever I tried to read a book. ( I was a avid reader) I was actually falling asleep and unconsciously I was trying to stay awake.  All this went on for years. There is so much more but ultimately I was diagnosed, and prescribed medication. I alternated between meds  and though nothing can eliminate all symptoms It was under control for about 8 years. I struggled after that to wake up and to stay awake. I confess and I feel great guilt over the fact that I drove many times when I should not have. Struggling to stay awake and get home from work. I fell asleep at work constantly. (my employer and several co-workers knew of my condition) I would get up in the morning and begin getting my makeup on for work ( I sit when doing this) only to fall asleep and wake up 20 minutes later with my mascara wand in my hand. My world exploded when one morning while driving to work (I live outside of town )  I woke up going about 70mph in a field beside the road I had been driving on. No injuries no accident I honestly believe God saved my life that day. I quit driving that day. I also abide my doctor to never drive again unless he releases me to do it. That was over two years ago. It does not look as if I will ever drive again. I also live approx. 8 miles from the nearest bus route . It is stretching it to say everything has worked out. I have lost my independence, my freedom, what on some days feels like everything. My life changed forever. So….maybe now you can understand a little better why for me….sleep has become my enemy. It is what I rage at and hurl screams of unfairness, anger and frustration. While most people long to fall asleep, to get more sleep or just a better quality of sleep. I long simply to just stay awake.

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