Life with “The Beast” is like the shell game you see played down on a corner in a big city, or on a boardwalk,
He has three big shells, and underneath them one says morning, another says evening and the last one says afternoon. These are the three different times of day that my meds can choose to kick in (no way of knowing which one it will be), and it is then that I can crawl out of bed and greet whatever part of the day is ahead of me. My alarm goes off at 7:30am for my first dose of meds. On most days “The Beast” is already waiting for me. He’s had his coffee and muffin. He’s done his laps. He is ready for the day to start. He is chomping at the bit to get at me. He sits at his table, puts the shells down and begins to scramble them. I watch intently – I am looking for ‘morning’. I would like to get a few things done today, and it would help to get an early start. He is doing his damnedest not to let me find it. He pushes the shells around wildly and I am trying to follow.
Since I just woke up, my mouth is so dry they could film “Lawrence of Arabia” in it. Water…..water… In the distance, otherwise known as my night stand, I see that my (I don’t even know what to call it) water bottle/sippy-cup is hiding amongst the abundance of paraphernalia I need to make it thru the night – now that “The Beast” has been gaining control. I hate the feeling I have been relegated to. No sense of control.
I am like a puppet on strings, and “The Beast” and “Tattoo” are putting on a marionette show like in “The Sound of Music”. Maestro please:
Give me my pill said the shaky lady
Lad ee odi lay ee odi lay he hoo
And a sippy cup so that I don’t spill
Lay ee odl lay ee odl oo
No one can read it when I try to write a letter
Lad ee odi lay ee odi lay he hoo
Going to have to practice ’til my penmanship gets better
Lay ee odl lay ee odl oo
O ho lay dee odl Lee o, oh ho lay dee odl ay
O ho lay dee odl Lee o, lay Dee odl Lee o lay.
Got to get dressed but no high heels today
Lad ee odi lay ee odi lay he hoo
Just a pair of flats is what seems okay
Lay ee odl lay ee odl oo
Gotta call an über cause I can’t drive my car
Lad ee odi lay ee odi lay he hoo
Might as well just walk down to the closest bar
Lay ee odl lay ee odl oo
Oh no I don’t like his ruse
Oh no I’m going to blow a fuse
Oh no it’s me against “the beast”
And I am not prepared to lose.
My head is spinning, “The Beast” stops moving the shells, and I take a big fat guess (cause that’s all it really is), and point to one of the shells. “The Beast” puts his mangy hand on the shell I have chosen. He is drooling now, in anticipation of my misfortune. He turns the shell over.
It says Morning!
I jump out of bed, he yells and runs after me. I run into the bathroom and slam the door shut.
He is beating on the door with his fists. I turn on the shower and yell out to him…
“I CAN’T HEAR YOU ! I won fair and square. I am getting up now. Not at lunch, not at dinner, NOW. ”
“The Beast” has been defeated! At least for today. He sulks away. Looking for “Tattoo” I suppose. Trying to come up with some other way to mess me up.
But I am ready for him. Our battle will begin again tomorrow .
Your an Amazing woman and I’m happy to know you and the other part if you, your husband who has nothing but love for you you see it in his eyes, Thank you Andy Stracuzzi
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Morgan, I love reading your blog. You have such a great way of handling The Beast and I’m sure it gives a great deal of encouragement to others with this disease. Your humor is fantastic. Keep fighting and don’t let the Beast win. Love to you and Donnie. Trudy
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