Call Me A Jerk

Hello my dear friends,

Today and the previous two days my myoclonic jerks and/or dystonia have been acting up.  Just call me a jerk.

UnknownI’ve been so spasmodic that my husband’s face was creased with worry.  He demanded that I go back to bed.  It was a good thing to do.  I was slipping and sliding in my chair because I could not control the jerks that propelled me forward inch by inch towards the end of the chair, and eventually, I would be on the floor writhing in agony.

You see, I also have a form of Dystonia.  I forget which one my Neurologist told me, but he rattled it off on my last visit.  He said, “You know that you have?????? dystonia, don’t you?”  I was surprised.  He said, “not only do you have MS but you have a secondary disease of ??? dystonia.”  I stared at him looking dumb.  I replied finally, “Great, just great.”  I knew I had myoclonic jerks, but I didn’t know that I had a second disease.

All of what is happening to me these days is because of stress.  My quality of life is a daunting challenge and I have to fight every day for some form of normalcy.  I mean, my kind of normalcy, which we all know is also challenging.

The cause of all this stress is my upcoming surgery on Thursday.  My surgery is unrelated to Multiple Sclerosis or Dystonia.  This surgery will be attended by two Doctors and will take 3-5 hours.  I have good reason to be concerned which I won’t go into here.

slideshow_1259634_131408-clocksI have to focus on my 5-minutes at a time.  If I didn’t, I would be a mess right now.  However, the stress is still there even if you have a plastered smile on your face and I’m good at wearing a smile despite everything in my life.  Surprisingly, it works in that once you have a smile on your face, although it is “put on” in the morning, you find yourself living that smile.

My take on all this:

Stress is not always evident by your physical nature, however; it finds it way to the surface psychologically of physically in due course.  When it becomes evident to you and others by your body’s reactions to every day occurrences, then it’s time to figure out what may be causing that stress.  Once you know what it is then you can find a way to deal with it.  When you can’t find a way to deal with it, take your day in small increments and handle it that way.

I sit here hoping to hear your prayers on Thursday with a smile on my face taking my life 5 minutes at a time.  Sure, I’m still jerking around all over the place but that can’t be helped.  There is no way to take away the underlying fear of surgery.

I will happily jerk my way until Thursday at which point I will probably succumb to tears.  Meanwhile, I am as ever, a jerk.



I have such an incredible headache.  It pounds at the back of my head like an impatient person at my front door.  I’m working very hard to keep it at bay but I feel my strength waning.

I wonder what would happen if I opened the door.  Would the headache cease because the pounding at the door stopped or would something worse happen because a stranger is now inside my home?

I don’t think I care to find out, so I’ll fight until the fight is over and I come out the winner.

I think I know why this pounding is going on.   I can’t sleep at night.  Part of this problem is due to Multiple Sclerosis and part of it is because I love the night.

I escape into the night and I find it quiets my soul.  It is a time of day where there is no sound of passing cars, no ringing phones, no appointments to get to, no meds to take and no responsibilities whatsoever except to myself.  There are some in my family who feel that my love of night is irresponsible because of how it affects my days, but I continue my love affair with the man in the moon, when he shows up to keep me company.

I am a composer and I do my best work at night.  I am a creative person in other areas and that is when ideas come to me.  What do I care how my days go?

My days are where I have my worst nightmares.  It is during this time that I have my myoclonic jerks, my narcolepsy (partly my fault), my inability to walk a straight line, the never-ending visits to Doctors, the onslaught of 38 pills in a day and the affects that they have on me, and so on and so on.

Leave me the night where the blanket of warmth covers the bodies of those I love and those I could care less about.  Leave me the night where melodies role around in my head and with headphones on, the notes spill out of my fingers onto my keyboard.  Leave me the night where there is no one to pretend to, the putting on of my mask where there is a painted smile on it.  I wear it well.

You have your days, I dance in the night where my waking dreams have me waltzing with the man in the moon without canes or walkers and I am beautiful in body.

Multiple Sclerosis and various other maladies struggle with me to take over my body during the day.  At night, I am a fierce warrior and take control with ease and I am who I am without the interference of well-meaning people who tell me I CAN’T.

I’m here to tell you I CAN.moonlight_dance_believe_fairy_bag_backpack-r2844394b97cf4741a5da0d85d1da4f77_zffcx_324