Verbal Diarrhea

Saying “verbal diarrhea” sounds comical.  In writing, the phrase looks vulgar, but who am I kidding?  I’ve considered an alternate title, yet this phrase succinctly and correctly captures my crass, adolescent-dude-masquerading-as-middle-aged-mom to a tee.

I own the affliction.  The shoe fits and all.

The Muscular Dystrophy Association’s summer camp director emailed me a few weeks back, asking if I’d be willing to share our family’s MDA story, to share what camp has meant to my son and/or to us.

I loathe asking for money (but PLEEEEEEEEEASE donate to our 2018 Muscle Walk campaign by clicking here).  The list of things I’d rather do than solicit donations for our Muscle Walk team covers more linear feet than the distance from the earth to the moon, but I can write and I can talk.  So, after joining the MDA “family” three years ago, I finally went to a family hoe-down.  And by hoe-down, I mean business meeting.  MDA staffers from around Wisconsin met to kick off this year’s camp planning, and asked me to toss in my two cents.  Everyone introduced him- or herself, so I knew who to thank, and that is how I began: with thanks to them for their work on behalf of individuals afflicted with crap muscle disease.

I think I was meant to be inspiring.  Stop laughing.  I can hear you over here, you know.

I was decidedly not inspiring, but I did share our narrative.  Not knowing my audience ahead of time, not knowing how many people would show up, I did not prepare any remarks.  You speak differently to a group of ten people around a table than you do in front of an audience of a couple hundred, so I flew without a net.

We have a story, and my recitation of our story feels and probably sounds like a script.  I don’t know if that’s what they wanted of me, but that’s what I related: our story.  I talked about how we came to learn about MD–how an offhand “It’ll probably be months before they get you in, so don’t worry, it’s just a rule-out” became “He has an appointment with Children’s Hospital Neurology on Wednesday.”  I said, “You’re all lovely people, but I wish I didn’t have to know you.” (and no, I didn’t use the f-word because I used to say ‘I wish I didn’t have to effing know you,’ but they invited me, and you don’t use the f-word in a business meeting.  Usually.

I explained that immediately following the diagnosis, I took to the internet to chronicle my feelings.  It wasn’t shameless blog promotion, because really, my blog hits a pretty boutique market–I’m not for the masses, I get that–I didn’t bring it up to ask them to read it.  I brought it up I guess because this blog has been my companion since that horrible January day.  Nearly every MD revelation that’s floated through my cortex has found its way here.  Three years later, I’m still Greater Than Gravity-ing.

And now I can add talking too much to my MD mom experience.  The members of the group with whom I spoke were gracious and attentive, but I couldn’t shut up.  I just kept pushing through my narrative, kept talking, staring off into middle distance too often probably.  I wanted to tell them exactly why greater than gravity, but that wasn’t part of the script I didn’t know I had followed I guess.  But that’s it!  Love.  The love I have for my child, the mama bear love that makes me have to write so that I can deposit all the marbles rolling loose in my head and be present for him.  Love.  It’s greater than gravity.  Betcha Ed didn’t know how much that, or any lyric would possibly come to mean to anyone when he wrote the song.  It’s dumb if you’re not me.  I know, it’s OK.

Muscular dystrophy is my kid’s story, not mine.  My story is how I became an unwitting blogger after learning my child had a progressive, terrible disease, and how this unintentional blog has become my confidant.  Since the patina of shock has now been dulled by three years’ time, I don’t write about MD every post.  But I have this collection of 200+ stories about parenting two boys, public education, my friends, Barenaked Ladies, baseball, my squishy-faced, sock-stealing idiot rescue dog (whom I LOVE), and kitchen remodeling.  I wonder how bonkers I’d be if I hadn’t written this all down.

Through my collection of tales, I’m given opportunity to thank those people who matter tons to me, and I’ve been able to educate, inform and yes, raise some money for the MDA, so kids like mine can find where they belong.  Even if it’s only for a week, it’s A WEEK.  You just don’t know what that means, to find your home.  For my kid and too many others?  It’s greater than gravity.

They asked me to read the letter I wrote to the camp counselors last year and I did.   I didn’t even ramble on.  I didn’t even ugly cry.  It was hard, but I did it.  I can talk and I can write.  I may not be a top fundraiser this year, but I did a good thing.

9 thoughts on “Verbal Diarrhea

  1. I am so glad I found your blog….was it a year or two ago? Different journeys but started for both of us as an outlet for the crap in the head so the day to day shit doesn’t weigh us down. And if it does a glass of wine and pick myself up because today it starts again and it’s wonderful that it does.

    Liked by 1 person

    • And the same in return–glad that I found yours! I do sometimes wonder how bonkers I’d be if I hadn’t begun to write this all down. It’s not a journal per se, but a place to deposit whatever it is I need to put in one, confined space Doing this allows me to do the rest of the stuff, because you nailed it–it starts over the next morning we wake up. That is a gift. Even when I’m really tired. . . 🙂

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    • I’m OK. 🙂 I guess I hope that if and when anyone wonders about his/her purpose in their particular job with the MDA, they can recall this weepy mom and be assured that the purpose matters, that the work and compassion matter. You are the amazing one! Can’t wait to read what you’re going to offer up tomorrow. I do look forward to Sundays!

      Liked by 2 people

  2. Your son and I are related, not by blood or by family genetics, but by our DNA strand. Somehow, in some mysterious way, in some very ancient time, we were together. Connected by regional ethnicity. Your looking glass reflects my feelings even though you are an observer to the “experience of being one with a chronic illness,” you are also the voice for your some and for me. We don’t know each other, have never met, and probably never will. Nevertheless, our hearts beat with the same rhythm for I, too, love your son. I, too, want him to feel at home if even for a week.

    Liked by 1 person

    • This made me cry, Rose. Thank you for this beautiful message of empathy and support. To read that my view reflects your feelings means the world. I don’t want to assume that I can speak for another person, that I could possibly KNOW how another feels or experiences their days, but I do believe that none of us is alone in whatever feelings we experience. If I can connect or capture that, however occasionally, and that can be of help to someone else is a gift back to me. Thank you!

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  3. Mama Bear Love is Greater than Gravity. There are so many ways one can take a lyric and BNL has wonderful lyrics to consider and make your own. Poetry in a pop song, gotta love that.

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  4. Sharing our stories, Wendy, is both an act of courage and an act of generosity.

    It takes courage to be vulnerable; as Stephen King once wrote: “The most important things lie too close to wherever your secret heart is buried, like landmarks to a treasure your enemies would love to steal away. And you may make revelations that cost you dearly only to have people look at you in a funny way, not understanding what you’ve said at all, or why you thought it was so important that you almost cried while you were saying it. That’s the worst, I think. When the secret stays locked within not for want of a teller but for want of an understanding ear.”

    But to that understanding ear, the story you’ve shared, the part of yourself you’ve exposed, is a profound gift — a reminder that we all feel pain, and that in our pain, we’re “alone and yet together,” as Rush once put it. Maybe when you started this blog, you did it for yourself; but the courage it took to do it at all has transformed your pain and misfortune into something beautiful and relatable — something we’ve all had a chance to share in. And I hope you take as much comfort from that as your stories offer to those with whom you share them.

    And, hell, if that’s what constitutes verbal diarrhea, well… it’s hardly the worst affliction I can think of.

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