the “D” word

The medical term for it is Sialorrhea, a word that leaves one feeling a bit itchy.  It means “drooling,” and that is what I’ve started to do.  It happens when my head is in a downward position while I’m talking; when I’m licking food off my fingers; or lately, if I don’t swallow before opening my mouth to speak.  Saliva now loiters in my mouth – a lot of it.  Guess those weakened facial muscles can’t regulate the flow like they used too.

This is not an attractive situation.  I wondered what my neighbor thought yesterday – talking to me while I weeded – as he witnessed the long line of drool that went spinning from my mouth, landed on my jacket sleeve, and ended up attaching itself to a rock.

My body is on an ever-roiling course downward, and I wonder about how I’ll play-out physically.  Will I repel others as drooling increases?  Have I already gone down a notch or two in my neighbor’s eyes?  And here’s a topper: will I still be considered “socially acceptable?”

Indeed, drooling is one of our social taboos, right up there alongside picking one’s nose in public.

How do I cultivate a dignified demeanor that can mask my embarrassment when I drool; a calm exterior that will serve as armor against people’s judgement, pity, and discomfort?  You see, it’s faulty functioning of the body that is the cause of the drooling.  It’s not me; nothing to do with my worth, or being that is at fault.  I must seize this clarity of fact, use it to stabilize and hold me fast.

Sometimes I want to shout to the world that Real People reside in these broken, palsied bodies.  “We’re alive in here, we’re just like you – maybe we’re wiser than you because we are closer to the truth of ourselves – you whole people who still walk and talk around, filling yourselves with diversions that shield you from the REAL” (the Raw, the Edge, the Holy Unpredictability that life is).

But I won’t shout; I was once there too, on that other side, and if I had seen someone drool, I would probably have judged and turned away.

la fin

S

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9 Responses to the “D” word

  1. Grace says:

    Living with cp my whole life I know what your saying, It is very disappointing how much “we” the disabled have to worry or think how were looked upon. Anyone who is educated my dear will love you no matter what. The loss of control is NOT your fault. Think of all the stylish hanker shifts we could go shopping for. Those who turn away aren’t worth your love or time. We have Work to do remember? write me later and we can start getting people together and begin working.

    your a beautiful woman!

  2. dave says:

    Sherry,

    Thanks for bringing this up. You are brave to lay this all out. I appreciate hearing about this first hand and with your insight into how you feel about it. I can read articles from medical sites (and have) about all these aspects of PLS, but I think it’s great to hear it from “our side”.

    I’ve started into this phase. Actually, it comes and goes or perhaps it is just beginning stages? It has been happening for a year or so, but doesn’t seem to be getting worse. It occasionally makes me choke when I’m not prepared to swallow ( or think that I need to). The only thing good about it is, unlike spilling food on my shirt, is that when it dries it doesn’t show. Now that’s something positive.

    As to what other people think. I can’t control that, don’t feel the need to explain and just say excuse me. That’s all I can do without going into a long explanation of symptoms of PLS, which most don’t want to hear anyway. I do think it is important to not let this effect me in a way that further isolates. Like not going somewhere, or avoiding situations in which I would otherwise normally engage with people. Keep up the good work!

  3. Sherry says:

    Dave ~
    Sounds like you’re doing your fair share of good work too, regarding how you’re dealing with the big “D.” I appreciate your attitude.
    S

  4. Sherry says:

    Thanks Gracie! You’re the beautiful woman!
    S

  5. Candace says:

    …. Oh My Gosh, how i Love You Brave Folks! :’ ) This is a Beautiful place to come to. Thank you, Sherry for writing, and sharing your Heart! I grew up in the Convalescent Center on San Juan (it was my Mom and Dad’s business and Life), so sharing the whole business of Life with folks whose bodies had gone off on their own path was/is normal for me. We are all like Birds in a Cage, in this Life. Souls confined to bodies while we hopefully progress spiritually, and Love Love Love one another while we are here on Earth in the School that is Life. Brave Warriors like you are the Leaders and the Backbone of the Human Experience. Life in a Body, being wildly more challenging and fiercely rough, every Day, for you. Have always thought, my whole life, that i’d be a total dismal failure, if i had to live in a body that betrayed me. Thinking i’d be crying and raging and living in fetal position, mad at the world and mad at God. You and Gracie give me Hope …. You two Elegant Women are The Strong Brave Ones. Women I Look Up To. I think about you having to deal with the ambulatory Neanderthals that talk Over the Top of You, talk Too Loudly to you, who Condescend in their conversations with you……….. Oiy. How do you Do it?
    I’m Honored to Know You. Thanks for this site, Sherry :’ )
    Aloha Maka Nui Loa

  6. What if you carried a cute wash cloth? It would indicate your awareness of the situation, and it would also come in handy. One of my earliest wishes was to be understood, but I didn’t accomplish it until only recently when I a) felt I had less to explain, and b) didn’t need so much for everybody to understand. Still, I’ve often thought that if something happened to me, I’d make a button I could wear. Something that sounded humorous, not judgmental. Something like, “Yup, there’s a real person in here” with modified smiley face. Too cheezy? I think people look away because that’s what we were taught was the polite thing to do when we were kids. Maybe a button, or t-shirt, would give people an opening to smile, maybe say something.
    Hugs,
    Karin

  7. Sherry says:

    Hi Karin ~
    Thanks for the input; reading your suggestions helps me realize that it is a situation that must be handled in the moment in which it occurs, and each time will be different in how I’ll respond. Preparing for it by using a button or t-shirt, feels too anticipatory, as if I expect it, and I’m afraid I’d be setting myself up for it then to happen. I do appreciate your thoughtfulness though, and glad that you commented.
    S

  8. Bette Siler says:

    I work with a marvelous person who has PLS. He is an MD. Recently he began experimenting with the Scopolomine patch to help him manage oral secretions. He is currently wearing it for 72 hours, then removing for 72. Some articles address this secondary use of Scopolomine (in helping sialorrhea). The only difficulty he had was when he left the patch on longer, he experienced some side effects (tiredness, dizziness). Anyway, just wanted to connect and tell you what my friend and patient is doing. Best of luck!

  9. Sherry says:

    Hi Bette ~

    Scopolomine is not something I am familiar with, and I appreciate your contribution in commenting about its use. Your friend is fortunate to have you in his life.

    Sherry

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