Ugly Like Me...

It's done. I cried.

They say when you are writing a book, whether it is an 80,000 word novel, or an 800 word children's picture book, you better cry when your protagonist cries. You better laugh when she laughs. You better feel what she feels, or you simply aren't there yet.

I cry a lot when I write from my adult place for adults. It's like a long chat, over tea in some dimly lit corner of an empty cafe. It's a 911 call from a friend, "Can you meet? I have no one talk to and I need you." It's easy to feel over conversations like these. With the children's book, however, I wasn't laughing or crying with this project.

Normally, I write as I would talk to friends when I know (or think) no one else is listening. Writing for kids, with such a seriously shitty subject, was different. Multiple Sclerosis is a bit of a topic for an adult mind, let alone a kid. Umm,paraplegia, adult diapers and catheters? I don't think so. I'm laughing as I write this...wth do you do with such an adult topic in a little kid's book?

If you need me to answer that for you-you don't go there. I don't let my mind wander there. There's no way I would lead my child's mind to those worst-case scenarios.

So,  I really struggled to find my voice. How to be honest and not scary, and then be MYSELF was a tough place to find. I didn't know if it was even a place.  Ask Johnny. He was there. It was a laborious, almost tedious task, but it felt like a job and something I had to do. I was tortured and pissy. BUT, walking away was not an option.

Side note: I actually did walk away for 3 weeks and wrote a novel in that time. That shows you how much harder it was for me to write a seven page children's book. 

I couldn't curse or use my natural voice. On one particular school night during all this, I was giving Zoe advice about a struggle she was having at school, and she walked away looking dazed and confused. I realized I just spoke to her like she was a 40 year-old woman and confused the crap out of her.

I shut the fridgerator door, continued out of the kitchen and mumbled to myself while shaking my head, "I have no business writing a freaking children's book."

But the thing was, I had no choice. If I can leave my daughter one thing, one loving, lasting message long after I was gone, something she could cuddle up to at night after she put her own kids to bed...it was going to be this freaking book. So, on I went, on WE went. Johnny was patient. It isn't easy trying to sketch beside an ever changing manuscript. I was like a story bomb and you never knew what ick of a story might fly out of my head on any given day.

Eventually, I came to a place where I was comfortable. It was the finished product, an 811 word children's picture book. It was 'good enough'. But at the end of the day, in the pit of my belly or soul, or heart, or that place where they all connect, it wasn't right. I wasn't identifying. I wasn't laughing. I wasn't crying when she was crying. And then something happened this weekend when I felt the title needed to be changed. With that teeny tiny change, the story changed in a big way. After rewriting and revising for a few days, and walking away for a couple days in between, I opened up the manuscript for one last look, one last 'no big deal' revision.

I tweaked and tightened. I revised and refined. And finally, fucking, finally...when the theme wrapped up at the end, I cried. It was rhyming and rhythm and a beautiful message, the precise words I knew were perfect, if and when I leave this world. It was me and my daughter, in the corner of a dimly lit cafe, talking and looking back at how well she managed all this. It was my voice, speaking to her. I cried.

Zoe Bowie and the Meatball MS Blues is done.

Zoe Bowie and the Meatball, MS Blues

Just when you think Zoe Bowie Sings, Despite All Bad Things...Even MS is finished, it changes once again. Good times! Insert sad face here.

The title changed this weekend when I spent the good part of the weekend revising the finished manuscript. It all started with a name change...Zoe Bowie and the Meatball, MS Blues.

The new name popped into my head. Actually, it was the very first name I thought of, and then crossed off the list months ago. Like everything else in this book, it has come full circle; from a more concise, minimalistic picture book, to a chapter book, back to picture book. From one name to another, then to another and another and then back to the original. I'm realizing while it is easy to think that all those words and months and pictures were a waste of time, they weren't for naught.

Something in me didn't want to acknowledge the pang that told me to change the name again because I knew where that would lead - an almost entirely re-written book. Sure enough, twelve hours after changing the name of the book the manuscript was rewritten. One tiny change, led to a huge commotion of words and revisions.

Every time you change direction and explore, you grow. It's like wondering through the forest, finding some cool berries, and then going back home and making muffins with them. MMM...muffins. It is never wasted. The thoughts and discussions and work are all stored inside you somewhere and even when you turn around, you take those with you. It's not only cool, but necessary to enhance that original version.

 Johnny's art has also evolved. His earlier, more bold, black-and-white sketches of Zoe Bowie have evolved to a style that accompanies the artwork laying around and hanging within his home. It's more abstract. Vibrant and colorful. It's more Johnny Keane.

It's not easy working creatively with anybody, not even your closest confidants in the universe. Our primary goal for this project was to write a book that would lend itself  to kids who have a loved one with MS--they need a protagnist who too deals with a loved-one's MS. Our secondary goal was to achieve this by me writing like me, and Johnny drawing like Johnny.

Although the latest evolutions of the book, at least on my end, were a smidge of a bummer, "Oh man, I thought we were done. I just want to send it out!" I could still step out of my finger crampage from typing long enough to understand this was the best for everyone involved. It was more me. It was more him. Hopefully, together that equals a clear, concise, upbeat, rock on of a message to the kids out there who struggle as caregivers, carers, and just strong little humans who manage and cope and kick MS-arse on a daily basis.

 

The 'Zowie Bowie Sings, Despite All Bad Things...Even MS' Project is done...well sort of.

The Zoe Bowie Project is done...well sort of…

My three-and-a-half years of community managing and blogging for MS communities throughout the world, reaching 95 countries, while simultaneously living with Multiple Sclerosis have taught me so much-about myself, about strangers, about fighters, about people who continue to triumph over whatever life throws at them.

Oddly enough, or perhaps not so oddly, many of these beautiful souls don't even have MS, but they have something. Everybody has something. Ahhh, yes! The first rule of fighting whatever hand life deals you is that pity need not apply, because everyone has something.

Much of my own personal journey has been about dealing with my MS in such a way that I teach my children this one, true, nugget of importance—no pity, everyone has something. It’s true that MS is hereditary. Sometimes I lay awake at night, staring at that one dust bunny in the corner of the ceiling in my room, and I think about that—what if Zoe gets this? What if AJ gets this? I pray, and I try not to let it haunt me.

Those nights staring at dust bunnies on the ceiling led me to where I am now, in this post, about this book. My goal this year was to stop blogging so much, and to put my words to better use-to write my ‘big girl book', and to write a children's book, the one I started way back when and never finished because, truth be told, it’s harder than I realized to write a children’s book.

This year was a success, I have finished both. I'll tell you this, running a marathon was less exhausting. After finishing my 'big girl' book, I lay on my friend's floor exhausted and woke up the next day. Mission accomplished! Not really, but sort of.

There are other mountains to climb after writing your first manuscript. You would think writing two books-one being 318 pages, would be climb enough, but nopers. The biggest climb comes after you are finished. You begin that insurmountable task of writing query letters, proposals, stalking agents (essentially) and publishing houses that are the most likely to be attracted to your genre, and your subject. So onward I go. Well, we go actually.

I knew if I wrote a children’s book, I’d want to work with someone I trusted and loved; someone my family trusted and loved. And then there was that whole ‘talent’ thing. This person, I would imagine, would have talent and a vision similiar to mine. Talking to Tony about who that someone would be, we knew within a total of 3 minutes that I would ask our friend Johnny J. Keane.

I called Johnny. He didn't flinch. His response was a simple, "Sure, buddy!"

We started the Zowie Bowie Sings, Despite All Bad Things…Even MS together in January. Every Saturday I would shlep up to his apartment/studio. I’d write, totally unaware of his presence. Every now and then I’d shout out a, “Johnny, what’s the word for that ….you know...thing?” Knowing me well, he’d fire off some choices and we’d find the word together. When he was inspired, he'd begin to sketch. We worked in one sense solely alone, but in another, together. Side-by-side, but both of us by nature and, thus, work, loners.

We went from an 800 word picture book, to a 13,000 word chapter book. Ironically enough, all those words, and all that time, and I ended up writing myself in a circle. My finished manuscript would end up looking pretty darn similar to what I started with. I realized the time, the words, they were not wasted. Johnny and I worked through a lot, accepted some things, evolved, then we were ready to see from another angle and shoot down other ideas. Things we weren't ready to see before had we not gone through all those 'wasted' words and writing in circles.

When he would feel inspired, he’d draw based off the content and concepts I was thinking aloud. None of this was a waste.

The Zoe Bowie Project is an 800-word, children's picture book about a girl whose a smidge downtrodden after the birth of her brother Meatball, and her mother’s new MS diagnosis. The book explains the nature of MS without scaring the bejeezus out of the young reader, AND it illustrates through Zoe Bowie’s own revelations as she watches her mom deal with the disease-that everyone has something.  The worst of these ‘somethings’ to have, however, is a bad attitude.

That shit can be lethal ;). However, we don't say it quite like that. This is a kid's book afterall.

Johnny had an epiphany yesterday. I called him on the way home from my infusion. He thought it was time to share our process on my Ugly Like Me/Multiple Sclerosis blog. So here we go, complete with illustrations that have been nixed or will evolve to the more abstract.

This book is an important one for me. I decided to push for this before my ‘big girl’ book for one reason-above everything else and all that comes with Multiple Sclerosis-there are 2.1 million people with Multiple Sclerosis world-wide. Whether they have children of their own, whether they teach children or are an aunt or uncle to them, there are so many kids out there who are walking around touched, and confused, by the nature of this disease.

I mean I'm still confused, I can't even fathom how my babies process this.

If I could find a way to explain this to them, in a glass-half-full way, I was going to try my hardest to find it. As I get older, I realize I don’t matter much, my MS doesn’t even matter much to me, EXCEPT in the way that it affects my children. Hence,  this book. If you know any literary agents, or if your mom owns a publishing house lol…feel free to point them in this direction. Thanks my friends. 

Oh, and check out (euphemism for LIKE)  Johnny J. Keane’s art page on Facebook. He'll be sharing the illustrations and the process as well. Johnny is a quiet, humble soul. He doesn’t own a microwave. He recently went wild and got cable. After graduating from art school, he decided his calling was serving students with special needs. This is how we met. We taught together.

We finally got him on Facebook for his art’s sake. Next step-a microwave! Heating my tea up in a saucepan really disrupts my work flow when I’m in the zone. We hope someday you will be able to hold our published book, Zoe Bowie Sings, Despite All Bad Things, Even MS. Thanks so much for your support through the years my friends. I love you muchly.

I can't go home again, not without him...for James Bombanti

I wrote this on my first visit back to CT after my grandfather had passed away. It was a heartbreaking journey for me. I apparently wrote this, I honestly don't remember. I was in that much pain. But I feel like I can let it go now, and put it up there and out there...for him.

Most people think, "Ninety years, of course he passed away. What did you expect?" My response to that is that 90 years is a long time to love someone. It is a rhythm you never forget. You pine for it when it's gone. This is for my grandfather James.

 

They say you can never go home again. I wonder what that old adage means to my parents, who met when my father was technically a runaway, sleeping in bowling alleys in Berlin, CT. They were sixteen. They eloped and he was drafted. Long story short we landed in Bergenfield, NJ. Long story short, he overcame a tragic childhood and turned out to be one of the most loving, albeit stoic, men you could meet. Long story short he became a professional bowler and my parents are still together. Their love overcame.

This is what I associate Connecticut with. My seeds. Their tragic pasts. Their triumphs. Their ‘love conquers all’ story. My roots. My grandfather and grandmother. My aunties. My cousins.

Driving up the Berlin Turnpike always felt a bit blurry to me, fuzzy;  no matter how close I get to my heritage, to my auntie’s, to Frances Street and Rocky Hill, to my grandparents’ home in Newington, to his garden, I always felt like I was going home in a way, despite the unfamiliarities. A paradox of sorts. It felt like home even though I grew up in NJ. I was a young six year-old when we left. So, it’s always this strange sense of nostalgia; one that I never feel quite worthy of. But still, it is innate. And then there's this emotional pang I feel as I count the bridges on the Merritt Parkway. They flash by, like that pang I feel everytime I come up here. It's a pang that is rooted in the feeling that I was never emotionally close enough to this place, to these roots. Not close enough to the depths I wish I had been when my grandfather passed at 90.

I should have counted, "1, 2, 3..." and dove in, and held on, a long time ago. Shit, he was 90. How long did I have to reach those depths? To answer my own question, quite a lot.

Sad thing about these moments where we learn who we are and who we wish we had been, is that they often come too late. My grandfather passed, just shy of his 90^th birthday. It was too late for me to be the person I should have been to him.

I mean we were close enough. I savored the time I’d go up north and spend alone with my grandparents, but I wasn’t like my sister, or  my Auntie Linda. I didn’t visit every weekend. I didn’t plant his tomatoes when he could no longer physically do it himself. I didn't drop my world for his. I should have been there more. With two young children, and not enough space for all of us to visit, and a job where the bulk of my work is done on the weekends, my visits were few and far between.

I picked up The Story of Edgar Sawtelle and had a flashback the other day. I remember it was circa 2008. It was an emotional fall. Just a few weeks pregnant with A.J. Turmoil at home. I fled to my grandparents house to find the solace only they had the power to restore. I let my fingers trace the edges of the book, as I was overcome with a feeling of warmth. How ironic that despite the hormones and the chaos that was my life at that time, all this book conjures up now is warmth. That solo trip when I was just a few weeks preggers. A blue Ralph Lauren knitted sweater to hide my not quite pregnant looking belly. Some soft throws on their living room couch. That book. Dusk. Gramps succumbed to my cravings and escorted me to Outback for takeout. 

He knew it wasn't about the food. He came with me on that ride because it was about the time. The little bit of time we would ever have together.

Despite not really digging that book, I will never let it go. It is, by default, by chance of being there during one of the sweetest and hardest moments of my life with both my grandparents by my side, ...one of my favorite books of all time. I shall read it again.

I would visit every few months; make the 3 hr drive from NJ. I watched him getting older. His hard working hands slowly being taken from him, while his mind remained sharp. In my own MS way, I knew the pain of that feeling. When your mind is going and it is well, but your body simply can’t keep up.  His pain was even greater, however, because doctors would tell him there was no point in operating. In other words, “You are too old. You are as good as expired.” I can’t imagine what that must feel like, to have doctors not even bother because you are as good as gone. It’s probably the most extreme, painful form of ageism one can experience.

He was no longer able to tend to his garden. My sister would come up and figure it out as he  micromanaged from a few feet away, holding his cane and wearing his USS Scott cap my brother gave him when gramps went to visit him him the navy. My grandfather loved that hat. He was proud of my brother Steve. He wore that hat like a badge of honor. It was one of his prized possessions.

Have you ever seen when Peggy Sue Got Married? When Kathleen Turner’s character is s able to go back in time, and all she wants is to see is her grandparents again. She wants to hide in their home, listen to their soft-spoken words of wisdom and rest beneath their loving gaze, just one more time. They were her cozy safe place. Oh God how I can relate to that crappy movie now. My safe place is gone. My sister, who was extremely close and always there for them, she keeps going back, attempting to find this safe place, but it is simply not there anymore.

My grandfather was first generation Italian. I have a picture of him, the youngest in his father’s arms, as the family stands around in what was probably the first, or only surviving, family picture of all them. They saved up and bought a farm in Rocky Hill, CT. My grandfather was born a farmer, but he grew into so much more. He knew how to do everything. He was a carpenter. An electrician. He built solar powered panels in his Florida home. And although he left school at 13 to work on the farm, like many kids did back then, he could teach himself anything.

Carpenter. Electrician. Farmer. Even as a boy, somewhere around the age of ten he was into politics. He'd run around the town hanging up flyers for whatever political issue was his passion at the time. He was on top of everything, and very passionate about his beliefs, even at 80, and then 90. I’m guessing he never saw himself as an intellectual, but I did, and I wish I had told him that before he passed away. Despite growing up states away, I have such fond memories of my grandfather, he was stern but loving and fun. And even though we weren’t close geographically, it is amazing how much of him I notice in me. When I catch myself in a moment like that, I look up to the sky and say, “Thank you.”

My biggest regret looking back is that I wish I paid closer attention. I was so young. So dramatic. So heartbroken. So incomplete. If I had known half of what I’d know in my 30’s, as a mother and a wife and a teacher and a sister and daughter and a friend, a Christian, a human with Multiple Sclerosis, and fucking granddaughter  I would have paid attention to every word, every single word he ever said when he was visiting, or I was visiting. I’d jump up, catch each and every syllable he spoke. I’d jump so high, catch those words as they’d float on by, and hang on for dear life.

I still hear him though. Sometimes in the smaller things, like when I leave the refrigerator door open for a second while I pour a drink. “Shut the fridge doll…your letting the cold air out.” And sometimes the bigger things, when I feel resentments coming on, “She’s doing the best she knows how doll…” The latter is my new mantra for life. Because of him I give people the benefit of the doubt. I choose to believe we are all doing the best we know how.

So he still speaks to me, and subconsciously I was hanging on to some lessons, but I could have tried harder. I didn’t try like I should have. If only that thing ‘youth’ didn’t get in the way.

I came up to watch my grandmother this weekend. I haven’t been up since he passed on April 30^th. I didn’t realize the emotional ride I was in for. I would reach my destination, but it was not the same place as when he was alive. It was half a place. Incomplete. My beautiful grandmother looked like half a woman. Her beautiful room in my aunt’s house, no matter how pretty and dressed up, felt empty.

I realized on this trip that we kind of mourn twice when a loved one passes away; once for the person we loved who is now gone, and then for the life that will never be the same, as it moves on.  I wasn’t prepared for this second mourning.

I put my grandmother’s glass of water near her bed, turned her bed down like she did for me when I was a little girl. Immediately I had flashbacks of her teaching me the Our Father, and I cried. I got on my hands and knees and prayed over her empty bed. It was a bit hysterical and gurgled, not sure if God caught everything I meant to say. But it's okay. Times like these, he reads my heart.Words just get in the way.

Coming up here this weekend, I realized how I’d never come home, again, never in the same way. I will never sit with him in his back yard, bundled up against the fall chill, watching the fall leaves dance in the wind, and then crash like exhuasted little dancers. I'd never hear his voice. I'd never sit, simply SIT, quietly next to him again. And this family, the family we were when he was here, would never feel quite the same. 

My children and my husband did me the honor of visiting his house one last time, so I and we, could give it a proper good bye. My dear cousin James came by to join us. James was also named after my grandfather James, like me. And James and I have always had a strange connection. We end up near each other at the parties. We speak without speaking. We get each other. And he showed up for me, to help me say goodbye. We walked through the old house, one last time, empty and despite the For Sale sign.What happened here cannot be sold.

I stood beside his work bench, remembering all the things he built throughout his life. It took my breath away thinking it ended here. Nothing more to build in this tangible way. But other things, like babies and grandbabies and legacy will grow nevertheless. This helped me regain my breath. We sat in a circle and prayed for the chapter that closed. We prayed for those who were beginning their next chapter in this place. Despite the pain, we understood that the miracle was the time we had together. It was only right to sit and give thanks and praise as we parted. I promised to see him in his great grandchildren and their children as they grow. None of this would be without him.

I’ll see him again, for sure, but I will never see Connecticut again, not like I did then, not like when Connecticut included him. The old adage is true, you can never go home again.