January 31, 2008
Miguel Estes has been born with a rare genetic skin disorder called Epidermolysis Bullosa, or E.B. for short. Unsure of how much time he has left to live, his Aunt Shirley has helped him develop a To Do list - a place to keep track of all of the things he is afraid to try. She believes that it is necessary to conquer these fears to lead a more enriched existence. This certainly helps to motivate him and in spite of his daily struggles, keeps him in high spirits, after all, he can't let his aunt down. When his mother chooses to move in with her husband, Hunt, Miguel decides it is best for him to move in with his father, even though this means starting a new school, and changing doctors as well.
Aunt Shirley decides that when school starts, Miguel should start up an after-school program called F.A.A.T. or Fear Ain't All That. She thinks that this will be a good way for him to get to know new students, and help them realize that life is what you make it, and fears are all relative. Thankfully he already has the support of his new best friend Samantha, his nurse's niece. And there is no one that needs F.A.A.T. or Miguel’s help more than she does.
This book was a rollercoaster ride, and it was so wonderful to read a book that was sure to inspire children and adults alike. We all fear something, but we need to look past all of that and make a To Do List - I believe it would help us all stay positive, and realize that there really is nothing to fear, anything can be overcome, even death. Thank you, Clint, for opening my eyes, and I think you will do the same for many people in the future.
--Tracee Gleichner, www.UponFurtherReview.org (Manitowoc, Wisconsin)
13-year old Miguel Estes feels that being “scared to death,” and having “the life scared out of me,” are no longer just tired, old expressions …they’ve become part of a world-wide epidemic. Now rid of the fears that once paralyzed him, Miguel decides to help others eliminate theirs; he founds F.A.A.T. (Fear Ain’t All That), an after-school group with his eccentric but wise Aunt Shirley. In its first meeting Miguel befriends Samantha, a girl diagnosed as having an exotic variety of phobias, fears, and anxieties. With a fierce determination, Miguel helps Samantha rid her life of one debilitating fear after another.
Together, Miguel and Samantha learn much about life, fear, and death. Revelations from Aunt Shirley, and recurrent dreams of his brother Jorge (who already lives in heaven), also remind Miguel that “heaven is a far better place than here. It’s nothing to be afraid of; it’s the perfect place to be…everything about it is perfect.”
After undergoing a radical transformation, a stronger-than-ever-before Samantha, grows to be ill. As her condition worsens, Aunt Shirley informs Miguel that the greatest lesson he can possibly share with his dear friend is to help her be unafraid of going to heaven. Of course he’s uncertain about accepting this task. But, paradoxically, it ends up being Samantha who teaches Miguel. Prior to leaving, Samantha feels only joy, excitement, and relief about her upcoming journey; Miguel, due to Samantha’s experience, becomes unafraid of his own mortality. Samantha, now completely fearless, moves on; although left behind, Miguel celebrates Samantha’s life as well as her death.
chapter one: excerpt
Death still scares me. Especially since it almost happened to me again last week. If you count up all the times I was supposed to have died, maybe it’s sort of normal to feel this way. Even right before I fall asleep at bedtime, I keep telling myself a hundred times inside my head, “just get over it.” But it’s so hard.
The exact minute you change from being an alive person to a dead one is something I think about all the time. And wondering what happens next, after that minute is over, is the thing I think about even more times than that. For sure I’m not alone though. There’s tons of people all over the world who’re afraid of dying, and they don’t even have E.B. like I do.
That’s what my disease is, a skin-blistering one called recessive dystrophic Epidermolysis Bullosa. If my skin’s not wrapped up tight, it blisters and comes apart. My body doesn’t make the glue that keeps all the layers stuck together, so I’ve got to wear bandages like a mummy most of the time. I was born with it. And, most everybody including my mom, told me I’d probably never make it all the way to thirteen. But they were wrong.
In their lifetimes, most normal kids never have to worry that the hug their mom or dad just gave them may end up causing the infection that kills them. They’re not forced to take Clorox baths. Their skin doesn’t come apart like mine. They get to wear clothes with no bandages underneath. Their fingers don’t permanently stick together all the time and have to be separated by surgeries over and over and over again. Whenever they get a blister, it eventually gets better. My blisters are all over my body, they never go away. And their teeth aren’t twisted and discolored like Indian corn you only see at Thanksgiving.
My brown skin, brown eyes, and short black hair make me look identical to tons of other kids in California. That’s why people usually think I’m Mexican. I’m really half Salvadorian and half white-American though. My favorite clothes are my baggy, comfortable orange jeans and long-sleeve, pullover 49er’s shirt that has two easy-to-open front pockets built in.
I’m glad I’m more different than the same as most kids though. This is my life. Maybe I’m supposed to hurt for some reason. But what if the pain I feel every day doesn’t end even after my life’s finished?
Aunt Shirley always says, “E.B. ain’t the issue at all, it’s fear.” Then she usually calls me goomer or a pain in the ass just to make me laugh. Aunt Shirley’s funny lots of times. She’s kind of like a white-lady version of Wanda Sykes. When she turns serious, Aunt Shirley says fear never should have existed in the first place, it’s a man-made thing and people aren’t born with it. Since she’s pretty much right about most stuff, I guess that’s the truth. I think Aunt Shirley’s the smartest person around, even though she dyes her hair shiny blue whenever she goes out 80’s dancing at the I-Beam on Haight Street.
I’m glad Aunt Shirley didn’t die after staying inside her coma. Now, all my guilt can disappear. I don’t need to worry anymore if I was part responsible for what had happened. Plus, it was her idea to come over and rescue me from…my fears, anyway. I’m so relieved Aunt Shirley was able to start making herself well so fast. Her doctors never did explain how she woke up from it so quick either. Maybe that part’s supposed to stay a mystery.
Sometimes Aunt Shirley just calls mysteries miracles ‘cause that way they don’t need to be explained. Get it?
“Oh, I certainly hope she forgives me. Those were dreadful things I’d said to her. And that was the very last—”
“Aunt Shirley’s not the type to hold a grunge, Mom.”
“Grudge, not grunge, dear.”
Mom did that a lot, corrected my vocabulary words while she was driving. And it’s not like she’s an English teacher or something, she just wants things to come out right…all the time. We were on our way to see Aunt Shirley for the very first time since she woke up. She’s at Kaiser Permanente on Broadway in Oakland, and Aunt Shirley said on the phone that she was so eager to see me.
It usually bites big time whenever I had to go to any hospital, mostly ‘cause of all my surgeries, but this time was so different. Aunt Shirley was getting back to normal, and her hair even started growing back in. That meant that it gave everybody a chance to see what the real color underneath was. I couldn’t wait to see Aunt Shirley and her new real hair.
“Did your aunt happen to say she was looking forward to us coming to see her?”
“Well, yeah, Mom. Us.”
“Did she use that word exactly?”
“I’m not really sure. Us. Me. You. Whatever. We’re going to see her.”
“I only hope she’s not still angry with me.”
“Hey look, Mom. That car’s from Nova Scotia,” I said while pointing over to a dirty, mud-covered Canadian BMW.
“And going much too fast, I might add.”
Above us was the upper deck of the Bay Bridge, the very same place where Aunt Shirley’s windshield got hit by a spinning car tire that came flying off a limousine. Right in front of her. That’s what made her car smash into the off-ramp that goes to Treasure Island when she was on her way to get me. It was very serious. Sometimes I couldn’t even breathe whenever my mind thought I’d never be able to talk to her again. I’m so happy all those thoughts got extinguished.
Looking out from the lower deck, with the lanes that go to the East Bay, made me wonder about how many car accidents happen on bridges. The news says that the Bay Bridge is the fifth most used traffic artery in the country. From Science class I learned all about arteries, but I never realized they had to do with traffic. I think it just means tons of people go across the bridge to get to work in San Francisco, not that they have heart attacks while they’re on it just ‘cause it’s mostly always clogged.
“You look so very good, Miguel,” Mom said as she put her right hand on top of my left hand lightly. Even though I could tell she was a little cautious about touching me too hard because of my fragile skin, I knew Mom loved me.
“You too, Mom. But your hair’s different.”
“What? You don’t like it?”
“No, it looks way cool. Why did you—”
“Hunt wanted… Well, if your aunt can change hairstyles often, perhaps I should try on a new one myself. Let’s talk about you. We have so much to catch up on.”
It was good to see that Mom was making some changes in her life. Maybe a new haircut’s the best way to start. I still worried about her a lot. Hunt’s Mom’s new husband. He’s the kind of guy that calls all the shots. And after the court hearing, Mom moved to be with him full-time at his house down in Malibu. She ended up selling our old apartment at the top of Nob Hill with its killer views. By the way, it was the judge who decided I should stay with Dad instead.
Moving in with Dad, and getting to be away from this guy Hunt, put such a permanent good feeling inside me. It’s kind of a bummer though that Mom still had to live with him. Maybe that’s the sort of guy she really likes, movie producer-types, or just guys that are really used to people doing whatever they tell them. Or maybe that’s just the way it is on the surface. Aunt Shirley said he was “completely bad news.” That pretty much summed it up.
Right when Mom had picked me up to drive over to see Aunt Shirley in Oakland, was only the second time I’d seen her since the court hearing from the month before. “Your new place here is charming, Miguel. It’s very…artsy,” she’d said.
“Yeah, Dad and I both picked it. And, check it out, there’s lots of weird stuff that goes on across the street. All over the place there’s tons of signs that say Drug Free Zone on the fences that go around the park.”
“My goodness. Well, are you about ready, hon? What can I carry?”
“Nothing, Mom. I can do it. I’m just bringing personal things that’ll make Aunt Shirley feel like she wasn’t ever in a coma in the first place.”
I could tell from the way she’d grinned at me that Mom was impressed.
Next, we gathered up my stuff, and headed down the hill to Mom’s rental car.
“The Mission district certainly is diverse. Isn’t it, hon? Are you and your father going to stay here?”
“Yeah. We live here, Mom.”
“I mean, he’s not looking for a different place? In some other neighborhood?”
“No. This is our home. And, we even have DISH Network with upgrades. Isn’t that awesome?”
Mom didn’t look too thrilled. But to me, getting to have satellite TV was like a major bonus. Dad and I spent every late night together watching all our regular old shows on either Nick-at-Nite or TV Land. Roseanne started up a while ago on Nick, and we’re both really excited ‘cause of it. Roseanne definitely has it going on. For real it seems like she never has any fears inside her. That’s so obvious, especially when she sang that song way bad at that baseball game. Roseanne’s hell’a cool.
Mom never cared too much about all the awesome shows on TV. Isn’t it strange how some people really love certain things, while other people are into other stuff? Mom mainly likes the de Young Museum, PBS, the San Francisco Ballet, operas, fundraisers, and other junk to do that gives a positive impression to other people. Aunt Shirley never cared about making impressions on any kind of people, good ones or bad. I think just impressing herself is what’s most important to her.
On VH1 Cher said, “If you’re all the time trying to impress someone, or trying to get someone else to believe in what you’re doing, you might as well forget it.” I think she really used the f-word in between well and forget. But they had to cut that part out since VH1’s basic cable, not premium. ‘Cause Cher’s famous she can use the f-word anytime she wants, and not get into trouble like most other people.
Over halfway across the Bay Bridge, Mom said, “I thought this retrofitting would be finished by now.”
“What’s retrofitting again?”
“Repair work. Before the next big quake.”
“Um. Do you want to hear about my new school, Mom?”
“Of course I do, hon. Tell me all about it.”
“Well, it’s really old. They’ve got awesome after-school programs…and right next to it is a huge park to play in. I can even hang out at the library that’s built right into the park there, the Marina Library.”
“Your new school is the Marina Middle School? In the Marina? Will Khadijah will be driving you?”
“No. Dad said I could take the school bus there.”
“A bus? Oh, Miguel. I don’t now. I think it’s best if you’re driven there, dear.”
“No way, Mom. Dad said it would be perfect. Dad says there’s lots of things I can do now. Dad believes in me completely. He believes in all the stuff I want to make happen for myself.”
Mom turned silent and didn’t have an answer to what I’d just said. She knew that’s exactly why I got picked to live with Dad in the first place. She knew that that’s the main reason the judge decided Dad should get the custody. So I could be around someone like Aunt Shirley who always believed I’d have a future and end up staying alive. Someone who wasn’t going to make me even more afraid than I already was.
“Are you staying well these days, hon?”
“Yeah, oh definitely. Having Khadijah back is so cool. She’s the best nurse ever.”
“As long as your father’s able to afford her, that’s terrific.”
“And, you know what? She’s going to be in a professional dance play at Davies Sympathy Hall—”
“Symphony Hall in a few weeks. Do you want to come with me to see her do that? Dad can’t take me since he has to work every night.”
“So, Khadijah did become a dancer after all.”
“She’s totally psyched. And, she said I’ve really got to come. Khadijah even told me once that she’d like you to see her dance. Especially since you’d said that that was probably never going to happen for her.”
When Mom reached up real quick to adjust the rear-view mirror just after I said that, it made me think she didn’t like being reminded of how things ended with Khadijah right before Hunt fired her.
“It’s a possibility, hon. Of course I’ll need to see what Hunt has planned.”
Instead of changing the subject, I decided to do a checklist inside my head of all the stuff I was bringing to show Aunt Shirley. My crammed-full To Do list, my report card, what I printed out from the Internet about my new school, the watch she’d given me that doesn’t tell time, the picture some tourist took of us when we were at that restaurant in Big Sur together, my favorite drawing of a chewed-up purple Frisbee my brother Jorge made the day before he died, and an extra-big sized Hallmark Thank You card, the over-five dollar kind, for staying alive.
Finding the hospital was simple, and Mom found a parking space right away on the fifth floor of the high-rise garage. “I hope your aunt’s happy she moved to Oakland after all, instead of living in the city with us,” Mom said.
“Same difference,” Mom said while turning off her classical station. I felt that being in downtown Oakland for Mom was like a break-in waiting to happen.
“Hey, Mom. Only positive thoughts, remember?”
“Oops. You’re right.”
Staring at Aunt Shirley with a shaved head in her undecorated, yellow hospital room didn’t seem so unusual to me. After all, that’s one of the things she’s known for, weird hair. The rest of her still looked the same. Being able to actually see her awake again made it seem as if she wasn’t even gone for those two months, she was just catching up on some sleep. Having her back made my insides so relaxed too. At first Mom, me, and Aunt Shirley could just make small talk. But then, after the huge excitement of seeing her again began calming down, I asked Aunt Shirley, “Does your TV get Lifetime? The Nanny’s coming on pretty soon.”
“I’m not so sure, doll. Give it a shot,” Aunt Shirley said while gently tossing me the remote.
“Shirley! Be careful!” my mom yelled out.
Just as Mom shouted that, it was as if I had experienced this part already. Been there, done that. Dad told me it’s called deja view. It’s like when you’ve seen it all from before. It reminded me of when Aunt Shirley first came over on the plane from Boston to move in with me and Mom. I remember being so happy then, I could hardly wait to spend time with her. In only one year so much had changed. Seeing how different Mom and Aunt Shirley were together, ain’t nothing new though.
Before the two of them could even think about getting into an argument, I thought it was the perfect time to handover my Thank You card to Aunt Shirley. In the silence she read what I had written. Halfway through, in my mind, I was reading the card aloud right along with her.
… It’s way obvious, but that’s why I love you so much, Aunt Shirley. You’ve taught me about a million different ways to keep alive. Like keeping my To Do list full, saying only positive words out loud, to always believe that what I plan is actually going to end up happening, to throw away anything anybody says to me that has the word no in it, by always wearing the watch you gave me that doesn’t tell time, and most of all, to always say thank you. I think with all the stuff you’ve taught me, all added up, I’ll be around forever.
Thank you, Aunt Shirley
Without saying a word, Aunt Shirley gave me the most serious look I’d ever seen. It was like she gave me an A+ without having to write it down on my report card. It seemed like a mixture of how proud she was, and how much she loved me, all coming out of her eyes at the same time. She had worked so hard to teach me to believe I’d have a future, and I learned it. Aunt Shirley taught me how to get rid of all my fears ‘cause that’s what I needed to do most to survive.
Since this was the first time in a long while all three of us were together, I thought maybe it would be good for Aunt Shirley to tell us some more of her extra smart ideas. Especially in front of Mom. “Yo, Aunt Shirley. I never did ask you this before, did you know what was happening when you were asleep? On the outside? Like all the news, all the terror explosions and stuff?”
“You bet’cha, babe. I sure did. Same old sh—,” then while quickly glancing over in Mom’s direction Aunt Shirley said “crap” before she was able to finish what she was really going to say.
“Seriously? You really knew about everything that’s going on in the world?”
“Yep. Same old, same old. I don’t know what it’s going to take for these folks to get it. How much more of a wake-up call do they need?”
“Shirley, you’re supposed to be resting,” Mom said. “We don’t need to talk politics.”
“Who’s talkin’ politics? I’m not referring to you-know-who, I’m talking about everyone. They still don’t get it. Fear’s the only enemy, folks…get over it!”
“Aunt Shirley, guess what? I for sure don’t have any anymore. I’m not afraid of anything. My To Do list is way long, see?” I said as I showed her the massively-filled-up printout I’d brought with me.
“You’re my hero, doll. You really are.”
“Crescent what?” Mom asked. Then, as they rolled around in teeny semi-circles, Aunt Shirley’s eyes said clueless for both of us to see. So right after that Mom told her, “I’ll always be indebted to you, Shirley, for helping Miguel. He’s doing so well.”
“For sure, A.S. Ditto. But you know what? There’s one more thing. You’ve definitely got to tell us if there’s anything really big you learned while you were inside your coma. Something you could say to us right now.”
“You got it, doll! I’m tellin’ you, I did learn one enormous lesson, something I never would have learned completely if I hadn’t been in a coma.” Then Aunt Shirley waited a few seconds before saying the rest, probably just so she could have the chance to be more dramatic.
“Well, what was it?” Mom asked.
“To never be afraid of dying. Heaven’s a wonderful place. It’s so much better than here. No burdens, no lessons to learn. Total, absolute freedom.”
As Aunt Shirley said that, Mom and I both looked over at each other and stared. Aunt Shirley had said stuff like this before, but how could she know? And she said it just like it was the truth, like she really knew what she was talking about.
“For real, Aunt Shirley?”
“Oh, positively. I got to be around you guys all the time, whenever I wanted. Not once did I have to wait for an invitation.”
“Shirley, you can’t be serious.”
“I’ve never been more. It works both ways too. Anytime you needed me, I was right there for you.”
“You can do that when you live in heaven?” I asked.
“You better believe it, bub. And I can’t wait to go back.”
Copyright © 2015 Clint Adams
All rights reserved. All material is copyrighted by Clint Adams and may not be reproduced without prior written permission from Clint Adams.