Don’t Even Think About Trying To Escape

In July, my family acquired a new assistive device called the Hoyer lift. It looks like a torture machine with its dangling chains and numerous metal bars. I half expected it to work the way the machine in The Princess Bride worked, with me as a whimpering Wesley watching the six-fingered man turn the dial up to 11.

I think I’m mixing up my Christopher Guest movies. Also the lift doesn’t work anything like what I described above. Obviously.

As an aside, any time we watched The Princess Bride in my family when I was growing up,
my brother and I would tell our sister that the creepy white-haired dude from the pit of despair was her husband. That’s just the kind of nice kids we were.

The way the lift actually works is that I am rolled onto a mesh net every morning, and my dress is pushed up to my lower back, leaving my bare ass hanging out of a hole in the net so that I am able to use the toilet. It is the height of dignity. But it’s also critical, because lifting me manually takes a toll on my caregivers. I will happily swing around in a perverted hammock if it means taking better care of the people who are taking care of me.

Scarlett was wildly entertained the first time she saw me hanging in the lift. “I can see your butt!” she yelled, bending down to get a closer look.

And if you think its awkward when a dog sniffs your crotch while you’re wearing clothes, imagine the horror of that same dog running at you while you’re half naked and trapped inside an elaborate spiderweb. Not that my caregivers will let Otto anywhere near me in this helpless state, but that doesn’t stop him from trying.

“Get away from me, Otto!” I tell him. “I don’t like you in that way!”

It’s a little bit surreal to have to tell your dog that you just want to be friends.

So the lift has provided excitement for everyone. It is also very large, and takes up a good deal of space in our bedroom, which is looking increasingly like a hospital room. Rob loves this, because who doesn’t want to live in a hospital room? It’s fancy.

We have also added a shower chair to our collection of ALS gear. I don’t have much to say about that, it works fine. But as with every change that comes with this disease, I was dreading the new equipment. And true to my past experience, life is better and easier with the lift and the shower chair. And the cough assist and the BiPAP. And the wheelchair. And the foot braces. And alcohol.

Things are increasingly challenging, but I feel happy. I used to make fun of my friends with ALS when they said that in some ways they were happier now. I still think that is a bunch of BS, but for me there is suddenly a shimmer of truth to it. The superfluous parts of life fall away and I feel more attuned to the little moments that I might not have even noticed before. Although I am upset and angry over much of what is going on in the world right now, I can easily see what is good.

Scarlett was leaving for school one morning last week, and in her 15th farewell to Otto, she squealed “Oh Otto! Today is your big speech at the dog park! Good luck!”

I didn’t even know that Otto gave speeches. I’m guessing this one was a motivational talk about never giving up on your dreams, especially if those dreams involve naked human bottoms just floating through the air.

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20 thoughts on “Don’t Even Think About Trying To Escape

  1. Kay

    So glad to see you posting again, and you’re so right about the love/hate relationship with all this damn equipment. The first time my two year old grandson helped with the hoyer he stared underneath and exclaimed, Where’s your penis, MoMoe!

  2. Amy VA

    If you can’t see the humor in your bare ass being hoisted into the air, then what do you have?
    Hilarious and wonderful post; there’s no such thing as oversharing (says everyone on the internet).
    When I was a kid, me and my dad (who is a pediatrician and therefor should have some idea of the potential impact on a child’s mental health) would tell my sister that her biological father was the creepy old guy on the Menard’s commercials. We called him Grandpa Menard, the child molester. We are terrible people. My sister is now 33 years old and seems pretty ok despite our best efforts.
    (My apologies to anyone who grew up outside of the Chicago area and didn’t have access to Gramps Menard.)

  3. Chris

    HI Sarah,

    I’m writing an article for MDA’s Quest magazine about role models in my life as I’ve dealt with my adult-onset muscle disease. I don’t have ALS (I have limb-girdle MD) but I am nonetheless inspired by your story, and you are an incredible writer. I always look forward to your blog posts, and I appreciate your honesty in dealing with your condition. I’d like to mention you in my article in my list of people I look up to, if that’s ok.

    I always get squeamish when people try to call my story “brave” or “inspirational”, as if making the decision to live in spite of my disability is some noble choice that only a few choose to make. The truth is, we all roll with the punches to the best of our abilities. I’m sure you feel the same way! Nonetheless, I appreciate you sharing your journey with the world.

    You inspire me, and I don’t say that lightly. I don’t mean inspirational in the cliche, slightly condescending way that people throw the term around (“Look mom, the woman in the wheelchair has decided to show her face in society today, how inspirational!”), but in the sense that by sharing the good, the bad, the profound, the mundane, and the daily battles and victories, you brighten my day, and make me feel better equipped to handle the changes in my life.

    I am on the verge of getting a wheelchair. Adaptive equipment is not something that I am accepting very easily. Reading about your journey, I find the courage to do it. That is inspiration.

    Chris

  4. Sarah Coglianese Post author

    Love this, Chris and I would be honored to be a part of your article. Thank you!

  5. Nana

    What joy you must feel with friends like yours. Bless them all for sharing in your humor. You are inspirational. Love always.

  6. Kathy P.

    You continue to be an inspiration. That Scarlett just keeps things funny. Hope Otto’s speech went well.

  7. Barbara Heinhold

    Hi Sarah,
    My cousin Matt, who also has ALS, has a good sense of humor too. Keep up the good work.
    Barbara

  8. Gaurav Gollerkeri

    Always look forward to reading your inspiring, thoughtful and downright funny writing, Sarah. Life is all about those little moments…

  9. Ipshita

    Dear Sarah,
    So glad to see your post. I check the site every week. You sure know how to make lemonade out of lemons. And you are an incredible writer. Hope Otto impressed his fellow mates with his motivational speech!!

  10. Beth Carey

    Sarah, you are adorable. There is no other way to say it. Thank you a million times over for spilling it all to us. You are wise and funny. And so strong. Obviously, Coincidentally, I just read the letter you wrote on my 60th birthday- at Michele’s request- got such a kick of your memories of high school. Sending lots of love across all these miles.

  11. Jane

    Scarlett & Otto are a tag team of hilarity. And that sweet boy, tortured with a dangling butt he *must* sniff; it’s every dog’s dream come true. You make life exciting for those two, for sure. And your very, very loved.

    Favorite line “…I feel happy.”

    You will, for so long to come.

  12. Barbara Smith

    Sarah,
    Always love your posts and they make me laugh out loud. What honesty and humor you bring to all of us. We just experimented with a Hoya lift for Jay and had some humorous moments as well. Missy tried it out and our goal was to see how much of your butt would be exposed, so she dropped it as far down as possible to make sure it wouldn’t drop out completely. Lots of love to you from Texas.

  13. Elizabeth Leone

    You are the best, Sarah Cog. Your posts and your damn-the-torpedoes attitude make me smile. Give Scout a hug from us, and know how much we love you.

  14. Ida Bianchi

    Such a funny story! I am missing my dad lots this week and your story reminded me of a story my mom told me when my dad was still alive. A nurse at the hospital was helping him get bathed and dressed. She had to crouch down for some reason and her face was inches away from my father’s bare bum when he let out a thunderous fart. We were not sure about the extent of his cognitive impairment (he had FTD and ALS) but when my mom saw the smile on his face after he farted, she knew that he still had enough going on in his mind to appreciate the humour of what just happened.

  15. kate

    Hi Sarah, I am an able bodied “bloghound”. A google search or subject matter that strikes me takes me on a journey to articles, posts and blogs where I am able to get to know so many wonderful people and get glimpse into their lives and perspectives. I added you my favorites list a long time ago.

    You are amazing, funny, inspirational. genuine and gifted. I just wanted you to know that I read your blog often and it has given me strength, motivation and introspective reflection, gratitude for my blessings and renewed faith in people. I look forward to as many more blogs as you bless us with.
    Kate

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