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Unicorn Trapped In a Cage

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • JulesPMH
    6 years ago

    Thank you for sharing this! I laughed so hard it hurt. I could very much relate, as an MS caregiver, though only for the past 8 years – but only having a DX the last 2, I know what it’s like to go without accommodations.

    I read it to my husband and we did manage to agree that if he were symptomatic (he has RRMS) he would definitely opt for a mail-in ballot, though I could CLEARLY hear his voice in your last example. . . his newest symptoms are largely cognitive/verbal…there have been several instances where his verbal filter has gone away, not just specific words he might use, but conversational content and volume and place…a symptom of the reduction in inhibitions. . .just like everyone said…nothing about MS is funny, until you find a way to laugh at a moment – just a moment – and it can help lighten the load. Thanks again!

  • kemo
    6 years ago

    Good writing leaves me wanting to laugh and cry at the same time. I’m there. So glad for absentee ballots!

  • Maribeth
    6 years ago

    Thank you for sharing and giving me a good chuckle. Sometimes I need to remind myself to laugh through all of this.

  • Ronald Huff
    6 years ago

    I enjoyed reading your humor in a not completely humorous situation. Keep up the good work. You and Patti both sound a bit lucky.

  • Sandy
    6 years ago

    This made me laugh Patrick. Thanks for that. Not laughing at you or Patti tho. Laughing with you. I “get it” !!!
    One of those Murphys Law moments, when if sh…IT can happen, you can write it on a rock, it will !
    Glad to see you maintain your sense of humor about it.
    God Bless you all.

  • Eden
    6 years ago

    Patrick, Thank you SO much for a very well needed laugh!

    My recent voting experience was far from being this funny. I fell while trying to sign in.

    They didn’t have my current info on file so I had to fill in another form. Since I have ‘shakes & tremors’ I can’t print well & needed someone else to help me.
    Three official moderators at the polling station had to ‘interview’ me in private, each with the same questions (Who do you wish to mark on your ballot?). However, the only ‘private’ area was in the handicap washroom!
    What was worse is debatable…
    …the fact that 2 of the three WOMEN interviewing me in the men’s room barely spoke English, OR…
    …the fact that I was sitting on the toilet (lid down!) at the time! The toilet itself had a Motion Sensor & flushed when I stood up! I though 2 of the three moderators were going to faint because we were all laughing so hard!!!

  • Laura Kolaczkowski
    6 years ago

    Eden, thank YOU so much. What a great visual. Those motion sensor toilets are always flushing at the wrong moment for me. The image of that toilet going off is priceless.
    best, Laura

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