Arlene is on the SCENE

Posts Tagged ‘charcot-marie-tooth

I read a comment today written by someone with Charcot-Marie-Tooth, and it stuck with me.  She was trying to talk about the sense of loss she feels with each passing day that brings a little less movement, a little more pain, a little less independence.  The response to her was: it’s not “loss,” it’s change.

She didn’t agree, and went on to vividly articulate what this loss feels like.  Sure sounded like loss to me.  Problem is, she points out, that because of her own inner strength she figures out a way to cope with this loss, and then all of a sudden people admire and applaud.  She’s become an inspiration, and the loss is replaced by change, which I dare say is an effort to normalize it.  As the writer points out, until you have lived with your independence being slowly stolen from you, day in and day out, don’t label it, please.

Which brings me back to something my friend/co-author Marybeth and I have talked about a lot, something that I’ve dealt with often in my work and that I have talked about here.  We all seek to cope with life’s pitfalls, and in doing so we all try to find the silver lining.  Marybeth tells me, though, about the dark underneath that silver lining–the anger, the frustration, the disgust.  And she’s one of the most spiritual people I know.  It’s not about denying there’s a silver lining, or not acknowledging our blessings along with our burdens.  It’s about standing in the dark for a minute, for ourselves or with a friend.  Uncomfortable and frightening as it is, it serves a purpose.

I was talking with a young client of mine today.  He’s been in foster care a while and has had quite a difficult time of it in his eight short years.  “That’s cuz I’m bad,” he said.  “I’ll always be bad, everybody in my family is bad, we just bad people.”  The “You’re not bad!” response almost made it past my lips before I had enough sense to shut my mouth and wait a minute.  I paused as long as I could.  Just tried to sit in the dark a moment.  I asked him why he thought he was bad, and he went on to express his anger–no, make that pure rage–at me, the judge, the social worker, everyone that had anything to do with his situation.  And we sat in the dark some more.  And frankly, he seemed relieved.

Now, he’ll go on and continue to cope, continue to perform to the applause of all of us adult onlookers.  But I’m glad I followed him into the dark, just a few steps anyway.  That underside is indeed dark, scary, and probably lonely.  Those traveling it could probably use a little company, and not always just to be led out.

Hey, it’s Arlene again.  Yes, I’ve been gone all summer.  I mean, not really GONE, but you know, you and I haven’t really talked in a while!  Doesn’t it always seem to go that way?  We say let’s stay in touch over the summer, but then we go to camp, Mom and Dad drag us off to see cousins and family, we watch a whole lot of TV, whatever.

But I did read some great books too!  I read the new Diary of a Wimpy Kid, and to get a little more serious, I read Esperanza Rising.  That was good.  I also read the Guiness Book of World Records because one day I will set one.  Haven’t decided which one yet.  I know it’s NOT going to be longest fingernails, because I tend to bite them.

But now it’s time to go back to school.  Part of me is really excited.  The other part is…I don’t know…nervous.  Just like last year.  This year my braces aren’t new, but still, it’s stressful, you know?  I read this thing online that made me laugh, but it was also very true.  Here, you can read it yourself, but come back to this page so we can finish talking.

So this girl is a little older than me, but she is talking about going to school with a disability, an “upper limb deficiency” to be exact.  I had to ask Mom what that meant.  As far as we could tell, sounds like this girl has only one arm, or at least only one hand.  Now that seems pretty intense to me.

But then again, I have Charcot-Marie-Tooth, and that sounds pretty intense to most other people too.

But what made me laugh is that when kids asked this girl what happened to her arm, she said it got flushed down the toilet!  Crazy!

People do ask funny questions when you’ve got a disability, and it helps to have a few of those funny answers handy when you need them.  But this girl talked about more serious stuff that is really true, things that make me a little nervous walking back into school this week.

Things like, the staring.  And I’ll probably get some funny questions too.  I’ll get new teachers who don’t know me and try to do everything for me, instead of letting me choose when I need help and when I don’t.  And I’ll get friends who get to know me so well that they forget about my disability, which is great, but then they run down the stairs ahead of me, never stopping to wait.

It’s all a big swampy mess of things and feelings that are harder to push through than say…hanging around the house this summer.  I’ll make it though.  No doubt.  In fact, I’m sure I’ll have a blast.  Just gotta get psyched up for it.

Post a comment, tell me about what went on for you when you started school this year.  I’d love to hear about it!

We were incredibly moved by the voices of those living with Charcot-Marie-Tooth disease, as recorded by the New York Times Health Section.  We need to continue to raise our voices until everyone knows what CMT is, everyone understands the urgency, and we all join together to maximize the quality of life for people living with CMT.

Matthew Downing puts an orthopedic brace on the foot of his son Matthew, 5. Both have Charcot-Marie-Tooth, a progressive neurodegenerative disorder.

I wanted to write about our recent article in the Quadangles magazine, especially as we begin writing the sequel to Arlene On the Scene and get into this whole “helping/caretaking” issue.  In the article, I am described as offering help, or “ministrations,” to Marybeth while we were roommates in college.  Okay, that’s true.  But I’m afraid my point that this was as helpful to me as it was to  Marybeth might be written off as just another line in the caretaker’s script, just a standard demure response to the waterfall of gratitude.

The helping relationship is incredibly complicated.   I should know; I have lived it both personally with Marybeth and professionally as a social worker.  From the outside, it really does look like selflessness, pure human kindness, in essence a one-way street.  But I just don’t see it that way from in here.

There is incredible personal reward for those who help others.  It’s  just there, whether it stems from your religion, your value system, your personal moral code.  We’re a connected society, and when one reaches out to help another, that helper gets rewarded, usually directly and in the moment, as well as indirectly from others.  In a lot of these situations, the helper enjoys an increased sense of efficacy, self-worth, perhaps even…power?

When it comes to people living with disabilities, sometimes their life is stuffed to the brim with situations in which they need to ask for help.  Inherent within the “Can you help me?” can be “…because I can’t do it myself.”  And then of course, there’s the thanking of the person who has helped them.  Does this get old?  I really wonder what would be left of my own sense of efficacy, self-worth, and power if I were in that position.

As we advance our thinking about people living with disabilities, as we begin to embrace disabilities as differences that enhance the mosaic of our society, I think we also need to rethink the helping relationship.  Caretakers and those who offer help deserve every bit of gratitude, no doubt.  But when I think back to my college days, and I read the article in Quadangles, I’m sticking with my version of events: I benefited as much or more from those years as a caretaker, and I’d redo it again in a heartbeat.  Because I got something out of it too.

Who is helping who?  It’s a two-way street.

Arlene has been popping up on blogs these days, and we wanted to share the links!

Arlene On the Scene was rated as one of the top children’s books that teaches compassion by Pragmatic Mom, a great blog about children’s literature, education and parenting.

Top 10: Books That Teach Kids Compassion (ages 2-14) UPDATED2

CMT Charcot-Marie-Tooth books to teach children compassion, pragmatic mom arlene on the scene special needs children in the classroom


Marybeth Sidoti Caldarone,  co-author of Arlene and parent of Grace on whom the book is based, was interviewed by Louise Kinross for Bloom magazine which focuses on parenting kids with disabilities.

For us, we are so thankful that in 2010 Arlene stepped onto the scene and brought much-needed awareness to Charcot-Marie-Tooth disease and the experiences of those living with it.  We will continue to spread Arlene’s message throughout 2011 by visiting schools and hosting book events.  We are inspired by the growing community of folks working together to change things for people living with CMT and other disabilities as well.  It all starts with our own perceptions and understanding, and from there, things blossom!


P.S.  We’re beginning work on the sequel…here’s to 2011!

We had a fantastic time at Revolution Books in New York City!  NTOR’s music poured out onto 26th Street and drew in a crowd as we enjoyed refreshments and good conversation with friends of the Hereditary Neuropathy Foundation (HNF) and our new partners in the mission to support people living with Charcot-Marie-Tooth disease.  Author Carol Liu read from Arlene On the Scene and led a great discussion about disability, difference, and our vision of a greater understanding, appreciation, and embracing of the differences among us.

We were thrilled that the young woman who inspired it all, Grace Caldarone, joined us!  It was great to have the entire Caldarone family there to share in this special event.  We know how tricky it can be to travel to New York with both Marybeth and Grace facing the challenges of CMT, but with help from friends at HNF, Revolution Books, and Vincent Limo, the Caldarones navigated their way to downtown Manhattan.

With so many friends and visitors, we sold out of the entire inventory at Revolution Books!  But don’t worry, they’ve re-stocked and have plenty of signed copies for those who were unable to make it on Saturday.  If you’re a New Yorker, we encourage you to visit Revolution Books at 146 26th Street.  It’s a welcoming and friendly place, great for holiday shopping and stimulating conversation!

We also owe a special thanks to the talented members of NTOR.  Your music rocked, and your energy is contagious!  We hope to work together on future events!

We can’t thank the folks at Revolution Books enough for their hospitality and support.  We also love that they saw in Arlene a revolutionary spirit.  We agree!  We are planning many more bookstore events and school visits to continue to spread Arlene’s message and build support for people living with CMT.

Authors Marybeth Caldarone and Carol Liu, Allison Moore of HNF, and Grace Caldarone

Author Carol Liu reads from Arlene On the Scene

The band NTOR rocks the crowd

It’s CMT Awareness Week, Sept. 19-26!  Arlene has arrived on the scene just in time!

We feel strongly that Arlene on the Scene should be a part of this week.   Repost/retweet this to the CMT Awareness Week site.   It is time for the folks working on CMT issues to join forces and make things happen!

We thought Arlene might be the one to spark this collaboration among people dedicated to raising CMT awareness and supporting people living with CMT.   Perhaps that’s too much to ask of a nine year old (okay, fictional) girl.   So we’ll let the grown-ups take over.   Marybeth and I are looking forward to hearing about new team efforts!

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