Unicorn Trapped In a Cage
'Unicorn in a cage' was a popular phrase in the late 80’s early 90’s to motivate MS fundraising before maintenance meds signifcantly changed the focus for some.
Living with MS as a family is frankly what you make of it. Believe me after a quarter century both as a home care spouse caregiver and care facility spouse caregiver sometimes I think I have seen it all. However my wife Patti, like everyone diagnosed with MS, is a wild card...as are we all.
Our war with MS precedes AMA regulations and while always well intended, people living with Multiple Sclerosis are not cookie cutter molds of accessibility needs.
Voting for example through the years is just one example not to be missed with Patti. Patti turns voting with MS into a fun house tunnel.
Patti’s visual impairment is one MS symptom that affects voting. She is “legally blind” and needs assistance. That is one issue and usually can easily be resolved.
Never suggest mail in ballot, she wants to see touch and feel her vote.
When we lived in Maryland we used to joke it was “torture the disabled”. Poor Patti had to be accompanied into a voting booth by three poll workers representing the Democratic Party, Republican Party, and an Independent because she was visually disabled. First of all they were the pull down lever machines behind a curtain and three standing people plus a person in a wheelchair is VERY crowded. They each had to explain a prewritten statement for each lever category. It was voting hell! That was bad enough for each candidate but when they got to referendum issues and ballot initiatives it was ‘torture the disabled.’
Even worse was that they could not touch a lever for her. Patti had to pull the lever. Three little old ladies would try to support Patti in a standing position. It was unbelievable.
I was not allowed to assist as I might try to "influence" her vote. Even though each time we were reminded that Patti could vote with a write in ballot and I could help her prepare it at home. Go figure! Wouldn’t I be better able to manipulate at home alone? All I wanted to do was help physically support her while the little old ladies explained!
My favorite anecdote was the second Clinton election. It was not a good physical day for MS and while Patti was behind the curtain being tortured by the little old ladies trying to physically support her she began to fall and grabbed the voting machine for support. Voting machines are not very stable and it in turn began to fall.
I’m watching this develop like a single domino in a line start to go. The little old ladies, about to be crushed, pushed the falling voting machine in the opposite direction. Patti loses her grip and falls into her wheel chair. Without Patti’s resistance the voting machine now begins to tip over in the other direction. The little old ladies race to the back of the machine to keep it from falling. They startle the person behind the curtain in the machine to the right who shrieks. The machine they are trying to stabilize comes to a loud clunk as it settles.
In the meantime, back in Patti’s wheelchair she had not set her brakes. When Patti falls into her chair she shoots out in the opposite direction slamming into yet another voting machine on the left. The impact knocks the machine a couple feet knocking down its yelling occupant and setting all kind of machinery inside spinning and whirring.
I cannot tell if I am a Three Stooges movie or if this is really happening. I can tell Patti is absolutely unharmed; me and others waiting to vote are laughing so hard eyes are watering.
One or another poll worker begins to exclaim, “Oh my God!” (In addition to the voters startled and knocked down attempting to vote in adjacent machines.) From what I can overhear poll workers believe the two machines have suffered ‘tumbler damage’ and possibly hours of voting has been contaminated.
I nearly dissolve into hysteria as Patti rolls up to huddled poll workers and exclaims, "Excuse me, I don't believe I finished voting."
Here in Pennsylvania ‘reason prevails’. We arrive and poll workers ask Patti simply, "Would you like one of us to help you?" "Or would you like someone of your own choosing to help you?"
With more progressed MS symptoms such as short term memory loss, cognitive impairment, and inability to modulate her voice volume can turn whispered assistance into … what I call ballot envy. Certainly “What the f#ck is a Prothonotary?” brought chuckles from way too many other voters.
Voting with us is not unlike the delicatessen scene from the movie “When Harry Met Sally” after Meg Ryan demonstrates a fake orgasm and the older woman customer remarks to the waiter “I’ll have what she’s having.”
Other voters look up from their computerized voting screen toward ours wondering why theirs is not so entertaining. … Frankly you learn to remember to treasure the fun moments living with Multiple Sclerosis as family, the person inside the MS is still there even a quarter century later - A unicorn trapped in a cage.
Editor's note: We are extremely saddened to say that on November 11, 2013, Patrick Leer passed away. Patrick was an essential member of the MultipleSclerosis.net community, providing unique insight and perspective as the primary caregiver to his wife, who has MS. His heartful writing continues to reach many. He is deeply missed.
How well do people around you understand MS?