As my journey with the perils of Multiple Sclerosis marches on, I become increasingly cognizant of the like characteristics between the MonSter and apathetic people. Those afflicted with MS know it and its effects to be uncaring, insensitive, and indifferent while callously and cruelly compromising one’s dignity. There are a plethora of examples: from robbing one of their independence, bladder and bowel control, driving ability, to inflicting pain and causing one to endure establishments with limited to no handicapped accessibility, employers who have no allegiance to employees with a disability, etc. I’d like to share a very personal and incredibly blatant example of an experience at the heartless hands of an absolute disregard of my handicap (my ‘gift’ from MS) that was both scary and humiliating.
My deep sleep was abruptly disrupted by an intense, loud rat-a-tat-tat on my front door. It took a minute to comprehend what I’d heard, to get myself together, but already, my MonSter was one step ahead of me… keenly on alert and planning ways to let me know just how unhappy it was. You see, we had an understanding…wake up, take a mere moment for my vision to adjust around the Optic Neuritis, before being rendered a less than generous 2.1 seconds to get to the bathroom, then sit there until fully awake. Things were going much differently on this day unfortunately.
Yelling from my lift chair
My young daughter goes to the door and it’s the police. They swarm into my home, shouting incoherently with guns drawn. At this juncture, the MonSter took control of my hands. They curled tightly as I yelled from my lift chair (which now doubles as my bed), “I’m her mother! I’m handicapped and can’t get up!” I was then accosted and yelled at to put my hands up. The issue? With my lift chair remote inside of my tightly curled hands, I worried they would think I had a weapon. With all of their ‘energy’, I definitely didn’t want a ‘shoot first, question later’ situation. I tried to hurriedly explain that it’s the remote control in my hand as I attempted to lower my chair as quickly as it would allow through my fear, nerves and confusion. They could have cared less.
The MonSter unleashed
I learned that they were at my home to ‘talk to’ my son, and that he was “not under arrest”. Worried and confused because ‘this’ was new to us, my son had never been in any kind of trouble before, needing to ensure he had his hearing aids, etc. My requests to see my son were answered with, “Soon”. I was told there was a paper for me to sign. An hour or so had passed, and I asked for my son again, at which time I was told he was already gone. I began to cry, and it was at this point that the MonSter unleashed. I knew that now, as in right now, I needed to utilize my 2.1 seconds to get to the bathroom.
Apathy and insensitivity
I got up with daughter’s help – the MonSter had taken remote access of my legs, feet and gait at this point. To say mobility was extremely challenging is an understatement. And law enforcement, void of any compassion, simply, well…simply watched me cry and struggle to walk and then, much to my horror, ‘it’ happened. My sphincter, that the MonSter damaged years ago, decided it was a good time to remind me that it was of no use to me and allowed the liquid waste to fall from my body onto the floor – under all those apathetic, staring eyes. And once the last drop hit the floor, one set of the eyes, the ones belonging to the hands holding the paper flatly asked, “Did you wanna sign this now orrrr…”?
Insensitive? Uncaring? Lacking compassion? Cruel? Yes, yes, yes, yes and heck yes. MS is nothing less than atrocious and, unfortunately, this was an experience which showed me that there are some after it’s own ‘heart’.
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