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Why Having Stiff-Person Syndrome Feels Like the Crush of an Anaconda

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21 years of my rare, incurable neuromuscular disease, Stiff-person syndrome (SPS), transformed my muscles into the squeezing crush of an anaconda without ceasing. There is never relief. My medicines are failing to work, as my disease is severely progressive. My bones have been crushed into fractures and the entire metatarsal region of my left foot has collapsed. I fight seizures, tremors and muscular vibration on the inside, and it is embarrassingly visible on the outside every single day of my life.

I am the wires tied to a harp too tight to play, and with the slightest pressure, begin to burst apart.

I feel the fine fibers of muscles all over my body rip, tear, jerk, pop, freeze, burn, seize and flick like rebounding rubber bands throughout each day and night.

I feel my muscles actually shrink and stiffen as if they are petrifying cement blocks everywhere.

The worst leaden, shrunken places reside in my calf muscles in my legs. My thighs which squeeze and crush my kneecaps, my arm muscles, and the seized muscles throughout my neck and the base of my skull.

I hold on as intense vertigo and fainting episodes come and go from the intractable rigidity and acute pain of my musculature. Pressing nausea is a constant companion along with the strain of vomiting when my body just cannot contain it anymore. Cluster migraines from intractable shoulder, neck and skull spasticity also will last for days.

I fight to function through the agony.

I suffer excruciating pain jabs all over my body that last for days and leave me exhausted, uncertain each time which one may act as my assassin. I fight to survive each attack.

Every physical exertion I attempt, from trying to walk, showering, or washing a dish results in even tighter muscular seizing throughout my body. The anaconda crush that forces my body to feel it will spontaneously combust from the merciless squeezing pressure. The muscles around my calves and ankles are so seized, they keep my feet from touching the floor as I sit or stand, forcing me to clutch onto furniture to move myself around our apartment. I fight not to topple over and fall when I try to shuffle across the living room. It makes me sometimes wish my body would explode. I finally have the wheelchair I needed years ago, but I must have someone push me due to my rigidity.

Luckily, my devoted husband is happy to help in any and every way possible. The family I was born into abandoned me the moment my disease progressed and I finally received a diagnosis from UCLA. That presents a whole other disbelief for myself and others, though my specialists say that their patients endure this cruelty from friends and family all of the time. It does not make incurable, progressive physical struggling any easier.

Originally published: August 8, 2016
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