the new normal

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Smiles and Duct Tape went to Wisconsin last weekend. I’ve been speaking a bunch with the ALD and the special needs worlds, but this was the first time I was sharing our story at a book festival with regular folks. This is what I learned — Regular folks are special, just like us.

I tried not to, but I couldn’t help myself from reading through the bios of all the authors attending the Southeast Wisconsin Festival of Books. MFAs, PhDs, awards, long lists of writing accomplishments. As I boarded the flight to Milwaukee, I couldn’t help but be nervous. How could I compete with all these real authors? And, why on earth would anyone want to go to The New Normal panel when they could go hear about The Poet as Historian or From Page to Stage or Teaching, Writing and Thinking about Queer History?

As soon as I landed, I was put at ease by the warm smile on the face of the man picking me up. He also had a sign with my name on it (I love that whole sign thing). As we got into the car, I asked about his connection to the Book Festival. He shared that he was not just a big fan of the event, but a dedicated volunteer and a former English teacher. My nerves ramped up again as I imagined him editing my work. Why was I here? Maybe Candy invited me on a whim, never thinking I would actually get on a plane and travel the 870 miles. I kept telling myself to breathe. Candy’s an old friend (from elementary school), but she was under no obligation to extend the invite and send me that plane ticket. She must have read the book and thought it would be a good fit for the festival, right? Breathe.

We arrived at the hotel and as soon as I checked in, another author quickly put out his hand and introduced himself. He couldn’t have been nicer and I quickly got over his PhD and other credentials. He was warm, sincere and interested in chatting. Then, I met up with an author who was part of The New Normal panel, and within a few minutes she felt like family. I thought – if everyone here is this friendly, I’m going to be okay.

They were, and I was.

The New Normal drew a larger crowd than I expected and I managed to keep up with the two other panelists. We each had very different stories, but all sorts of connections. I’ve never given a talk with other people and didn’t know what to expect, but it felt natural and I don’t think I even did my usual shaking. I also got to enjoy attending talks by an assortment of talented writers and to reconnect with my old friend Candy (and a pile of her creative/talented friends). All weekend was spent sharing and listening – lots of talking. This was a group that likes words written AND spoken.

As I think about the experience and all the people I met, I’m amazed by the fact that nearly every person I talked with understood “special”. Since I was there to share our family’s journey, people felt comfortable sharing details about their own lives. Many had gone through incredible challenges themselves or helped family through the horrors of illness or depression. They all had been witness to a new normal. Perhaps that’s true about everyone. I think we need a new word for “special”. Human?

Being around such a creative assortment of humans for two days was incredible. Everyone had a story and everyone was eager to hear mine. I walked away energized and eager to start my next writing project (I’ll fill you in on that soon).

I’ve been getting out of my comfort zone quite a bit of that lately. It’s been exhausting, but I’m honored to share Jack’s story with a broad audience. I’m learning a lot about the world and myself along the way.

It’s also good to come home.

Love, Jess

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My reading list:

 

Carolyn Walker’s Every Least Sparrow

Mary Jo Balistreri’s Best Brothers, Joy in the Morning, Along the Way, and Gathering the Harvest

Das Jenssen’s Phenomenal Gender: What Transgender Experience Discoloses

Jeaneete Hurt’s Drink Like a Woman

Nickolas Butler’s The Hearts of Men

AND if this show comes to a city near you —- GO! The Pink Hulk 

 

cringing and shaking, but okay

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When I was a junior in college, I took an Old Testament class. It was a small class and most of it consisted of open discussions around a large round table. One week in, I approached the professor and told him I was sorry, but I needed to drop the class; “I just can’t do it. My heart races just thinking about speaking in front of everyone.”

Had you known me at that age, you might find my anxiety surprising. I wasn’t someone who hid in a corner or didn’t like attention. It was the combination of academics and public speaking that made me panic. School hadn’t been easy for me thanks to some learning issues, so when I was at school, I did my best to stay safely in the back of the room. I saved my loud, social self for after class time.

To make a long story short — the professor would not let me drop the class. He bargained with me, promising that he would not make me speak until the last class of the semester. I sat silently for months in a class of maybe a dozen people – until the last day. Of course that made things rather awkward. Everyone had thought there was something wrong with me and couldn’t believe it when I actually opened my mouth that day. I did manage to get my words out, but not without a whole lot of “Ahhhhhhh”s and “Uhmmmmmm”s.

After that class, I promised myself that I would never again speak in public. Then, I decided I wanted to be an art teacher. My first few attempts to model lessons in graduate school were painful, but I got over it and managed to become comfortable . . . in front of a classroom of children.

As an adult I have done a little more public speaking. I spoke at a fundraiser for The PG Chambers School, and to some small school groups with our service dog, Keegan. I even spoke at Listen to Your Mother. Each time I walked away cringing and shaking, wondering when it would get easier.

Since Smiles and Duct Tape was published, I’ve had the opportunity to speak more — at bookstores and schools. And, it’s really ramped up this month. I spoke to a psychology class at Seton Hall University about “exceptional children” and was honored to speak at a CPNJ fundraiser sharing our story and our love for CPNJ Horizon High School. Next week I’m speaking about ALD up in Boston and then heading to Wisconsin for the Southeast Wisconsin Festival of Books. I can’t say I feel completely comfortable as I start a presentation, but I do think I am getting the hang of it.

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It’s so strange how life can send you in a direction that you never expected. The girl who got Cs in English, wrote a book. The girl who couldn’t stand up in front of a small group of classmates, now speaks in front of large audiences of ADULTS. It’s not without plenty of nerves and a whole lot of shaking (honestly – it’s unreal how my whole body shakes), but I am doing it. If it helps other families going through similar situations or helps students trying to understand what “special” looks like or helps people understand ALD or if it encourages people to support wonderful organizations like CPNJ – I’ll do it.

It’s my way of taking back some control. It’s my way of proving that our family has reached the other side of hell. It’s my way of not letting ALD win.

 

Love, Jess

 

 

 

HaPpY 19th!

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I’m happy to report that we did not take any bit of HaPpY out of Happy Birthday (if you don’t know what I am talking about, click here)! JackO enjoyed every minute of his 19th Birthday and looks forward to celebrating all month long. Thank you for all your birthday notes – keep them coming!!

 

 

Love, Jess

PS HaPpY Birthday PopPop!!! We will celebrate soon Block Island style;)

 

It’s NOT a Secret Anymore!

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An article I wrote about medical marijuana was published today on The Mighty – CLICK HERE TO READ IT!

If you are an avid reader of this blog you may recognize the initial story, but dig a little deeper – there’s a lot of information. Medical marijuana has been a life-changer for JackO. I hope sharing our story helps other people dealing with chronic pain/spasticity/anxiety/digestive issues – the list goes on and on and on.

Love, Jess

 

#THISiswhatALDlookslike

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I do some of my best thinking at night. Thanks to a small (kinda broken) bladder, I wake up often and before I fall back asleep, I often have these brief moments of genius. Sometimes I wake up and laugh at the absurdity of my late night ideas, but sometimes I think I’ve actually stumbled onto something good.

I’ve been fighting a wicked cold and have found my late-night-mind-spinning-time has increased exponentially. Lying in bed, cursing my cough and trying to find my way back to sleep, I’ve been thinking a lot about our boy, ten years and ALD.

I’ve shared our story from the beginning of our journey with ALD for a lot of reasons. Initially, it was to keep people posted on Jack’s progress, then it was for me to process the madness in our lives. BUT I’ve come to realize that one of the biggest reasons that I continue sharing is that I want people to see what our lives look like.

Adrenoleukodystrophy is not a disease you can picture by Googling the word. What you find when you Google Adrenoleukodysrophy is words like “demyelinating” and “metabolic,” and “long-chain-fatty acids”. If you dig a little deeper, you find statistics about boys who develop Childhood Cerebral ALD and men who develop Adrenomyloneuropathy (AMN), the percentage of Addison’s Disease reported, even the effects a carrier can develop. But ALD is not just about these facts — it’s about the people that it touches. They each have a story. Some good, some horrific, some somewhere in-between.

In order to really understand the disease you need to meet the people.

I went to a seminar a few weeks ago (run by Maplewood Cultural Affairs) and the cool, young, hip speakers spent a lot of time discussing the importance of social media in promoting your work/causes/etc. Apparently my time on the Facebook (even calling it THE Facebook) was getting a little dated. The seminar gave me an education on Instagram, Twitter and hashtags.

I came home and tried to figure everything out and thanks to my personal IT person – Anna – I got some extra schooling on Twitter and Instagram and finally understand what a hashtag is (FYI #hashtag is not a cool thing to tweet).

I started not just adding #smilesandducttape to archive my writing/photos, but I added #THISiswhatALDlooks like.

A few nights ago while coughing uncontrollably I thought – wouldn’t it be cool if all the other ALD families did the same and we could have a giant archive of who we are? Not just the boys post-transplant with complicated lives, but the boys who have hope thanks to New Born Screening, and the boys on Lorenzo’s Oil, even the boys who have lost their battle but are still alive in the hearts of their friends and family. AND, I picture it being not just our boys, but their siblings, their families, their community.

I’ve come to know many families with our disease and each has a story. I would love it if we could band together and introduce ourselves to all of you. I think if the public can SEE our disease they will understand it more.
Let’s see if we can get this to work – could all the ALD families out there use #THISiswhatALDlookslike to show the public the PEOPLE behind the disease?

Love, Jess

OK – awake Jesse has done some digging now that I understand this whole hashtag thing. #savetheboys #adrenoleukodystrophy  #fuckALD and #aidanhasaposse are 100 steps ahead of me. Not just archiving family photos, but starting a movement to save our boys. Not sure if I am helping or adding to the confusion here. You tell me.

 

#THISiswhatALDlookslike