Stronger Than I Look

*For those of you new to the story please don’t fret, I’m not currently in jail. This happened two years ago. Please go back and read the other parts to get caught up. 🙂

When I last left off, visions of A-Rape-A-Hoe was dancing in my head. It was around midnight and shortly after a guard opened the heavy cell door and shouted out “BREWER” at the top of her lungs. There were only four of us in the cell and three of them were sleeping, or, at least, they had been sleeping. One shot up off the bench and swore at the guard for being too effing noisy. My head shrunk into my neck as I tried to sink below everyone’s radar. The guard motioned for me to follow her. I looked around to collect my belongings only to realize that I had nothing to collect.

I followed the guard through at least five doors. Each buzzer she pressed allowed a massive door to close behind me, obscuring me further and further from freedom. Each new cell held a more stale and stagnant odor, confirming my dread that I was, indeed, moving further away from the world. Then we came upon the “pod” where I would be spending the night. The door slid open and she ushered me in to my new housing. It was very unromantic. No one handing me the jingling new keys to my dream home, no groom carrying me over the threshold. Just me, shuffling in my ACJ issued shower shoes that many other people had worn before me, terrified of what was waiting around the next corner.

The communal room was completely devoid of activity at that late hour. All the ladies were squirreled away behind numbered doors that outlined the room. I noted one TV mounted high above the tables and I briefly wondered how the remote was shared, or if there was a vote on what we got to watch, or if it was court mandated. It made me rethink all the bitching I had done about not having a DVR at home. And there was a clock! Oh, Praise God! How beautiful it was, ticking away the seconds. I got a bit misty as if I was being reunited with an old friend. Anyway, the guard took me through one last door, which revealed my good friend from the holding cell, Shona, and a woman named Cricket. I assumed this to be a nickname, but I could be wrong. They were both standing up in the tiny cell, waiting for mattress pads to be delivered.

The cell had bunk beds that towered three high, with the space between each bed just enough to afford the comforts of a standard coffin. I think even Houdini would have suffered from claustrophobia given these conditions. The top bunk featured a wafer thin sliver of window but the triple-paned glass was lined with what looked like a miniature version of chicken wire. Even if someone could break it open, there was no way that even the tiniest XS jail size could shimmy through to freedom. But, it was a slice of light in what seemed to be the darkest place in the world. I wanted that top bunk but wasn’t willing to speak up for it. You get what you get and you don’t throw a fit, right? Plus, I didn’t think this was the environment for debating.

We couldn’t lay down because there were no mats yet and the bed frames were thin, metal slats. So, we just stood there staring at each other. I decided to take the tour, which consisted of me spinning around on one foot for .5 seconds. I noted a small desk that held three buckets of toiletries: a roll of toilet paper, a toothbrush, toothpaste, a comb, a small bar of soap, a towel, and one change of undergarments and socks. One was marked “S” (for Cricket) and two were marked “L” (for me and Shona). Apparently, if you can’t remember your issued Inmate Number (which I did have memorized for about a year and then finally allowed my mind to let it go) you can just identify yourself as your jail size. Anyway, between the tiny desk and the tower of beds, there were three hooks to hang your towel (or another inmate) and then a tiny metal toilet/sink contraption. (At least I only had to share with two other women!) And that’s the extent of the cell. Oh wait. The fluorescent light bar that sputtered on and off enough to induce a mild seizure, which Never. Turned. Off.

Just then, the door slid open and a guard threw in one mat. We all looked at each other and Shona picked it up and handed it to me. “Crawl up, sister.” As I climbed to the top, I thanked Heaven for allowing me to have the highest bunk, pleased that I would smack my head on the ceiling instead of a cold, metal bar when I shot up during the night having a guaranteed nightmare.

I laid the thin, blue mat down over the metal slats and pulled the itchy wool blanket over my standard issue blue jumpsuit. Size L. I thought about changing but then remembered there was nothing to change into and NO WAY was I going to sleep in my standard issue skivvies.

I estimated that it was 1:30 am (our cell door didn’t face the wall that held the clock in the communal room.) I rolled over to face the wall, started mentally humming my “Don’t You Dare Freak Out” song, and rocked gently. A couple of tears escaped to pool on the hard, cold plastic mat as I listened to Cricket and Shona complain – over the buzz of the fluorescent strobe – about not having mats yet. And then, I think I fell asleep.

“Good morning, Ladies!” The eerily chipper announcement crackled over the loudspeaker that was piped into our cell. My eyes squeezed tight in an effort to forbid the shocking proclamation from entering my delicate ear canal. I remembered immediately where I was and recalled that there was limited air space between me and the ceiling. I slithered to the bottom of my mat, aiming for the rungs so I could dismount as gracefully as possible. The doors of all the cells automatically opened at the same time and I considered scooting to the back of the cell to allow my cellmates to exit first. I didn’t want to seem too eager to meet those I was co-habitating with. Shona and Cricket remained on their bunks so I had no choice but to exit first. Besides, I wanted to know what time it was.

I ignored the stir of other inmates beginning to congregate in the communal room and looked up at the clock. Imagine my shock to realize it was five thirty. AM!!! Why on earth would they wake us up at five-effing-thirty-in-the-morning?! Apparently, I said this out loud, which garnered an “AMEN” from one of my “colleagues.” I had drawn attention to myself without meaning to, so I kept walking across the room like I had a purpose. I didn’t know where I was going but I just kept walking. An inmate on the other side of the room held her towel and was pressing a button on the wall, yelling at someone to bring her an effing razor. Apparently, you had to ask for such dangerous articles, but that meant a guard would bring one in to you and stand there watching as you used it, taking it away as soon as you had completed your task. I spun on my heels to retreat to my cell. Once inside, I quickly gathered my toiletry bucket and ran like hell to get to the shower before razor girl and the guard had a chance to spoil my solitude.

There was no hot or cold settings. Just a timer. I was starting to understand why The Institutionalized were such experts with using swear words. As I stood under the sputter of alternating icy and scalding water, I used a tiny bar of Super 8 Motel soap to wash off some of the jail grime. I’m sure my face was twisted in a grimace as I dodged the dingy, green plastic shower curtain that kept threatening to flutter into my personal space. So help me God, if that material makes contact with my person, I was going to scream.

The towel was not much bigger than a wash cloth, but I tried as hard as I could to wrap my long, luxurious hair up in the swatch of worn terry cloth. I swear I heard my hair emanating tearful moans of having to exist without my standard Aveda Rosemary Mint. And when my hair met the flimsy black comb that had to navigate the jungle of unconditioned tangles, I shed my own tears. This had been the most unfulfilling shower EVER. I pouted on the trek back to my cell despite the the tight pull of my un-moisturized skin as I frowned. I maintained my scowl as I glanced at the clock, depressed that only four minutes had passed. The foul-mouthed inmate was still yelling into the intercom for someone to bring her an effing razor.

I noticed that someone had left a brochure of Standard Jail Procedures with my last name printed in block letters along the top. I picked it up and crawled back to safety, noting that the sliver of window still only showed black. I flipped open the brochure and started reading rules that I never thought I’d be exposed to, a list of consequences that would occur if I broke any of those rules, and the time off I would earn if I didn’t break any of those rules. I laid there, feeling completely defeated. I started to hum my “Don’t You Dare Freak Out” song as my thoughts turned to so desperately wanting my mommy. Too bad she had passed away seven months earlier. Her timing really sucked.

“BREWER!” A guard yelled into my cell, making my cellmates jump awake. Luckily, no one smacked their heads as the shock wore off and they groaned at her inconsiderate use of volume. I craned my neck to the side to make her aware that I heard her – but I was trying to not smack my own head. She let me know that I needed to be ready in 30 minutes to go to the courtroom. I told her that I’d be ready. The crackling loudspeaker alerted us to the fact that breakfast was being served. The three of us shuffled out to see trays holding something that resembled oatmeal (which I never eat) and a choice of coffee (which I detest) or tea. My look of disdain must have sent a silent signal to Skinny Angel, who magically appeared beside me and asked her standard question: “You gonna eat that?” I slid my tray over to her and shuffled back to my cell to get ready to head to court.

It was 6:30 am.

 

 

 

 

**Disclaimer! This post is one in a series reflecting on my 36 hour stint in jail two years ago. I am not currently under arrest or needing bail money!** And… this one is twice as long as my usual posts, so buckle up! 🙂

Part III

Mid-afternoon saw minimal activity in the holding cell. I still hadn’t discussed my case with anyone. As of 4:30, the line-up consisted of me, Elle, Angel, and some woman who was following The Commandments to the letter. She hadn’t said a word to any of us, except to answer me when I asked if she knew what time it was. Her jumpsuit was orange, which I learned from my “teachers” meant that she had been charged with a felony. Now, every jail has the prerogative of choosing their own colors, but in Arapahoe County, blue=misdemeanor; orange=felony; tan=work release or trustee (they generally have more freedom), and red=flight risk. Now, I was in no position to judge, but I was terribly curious as to why The Silent One was wearing orange. I could only speculate, so I made up the worst possible story my mind could drum up to keep myself occupied.

Elle and Angel snoozed off and on while The Silent One stared straight ahead. She was three times my size (Hey! I wondered what her “Jail Size” would equate to?) She looked as if she could crack me open like a walnut and I assumed that this was not her first time at the rodeo. Seeing how she wasn’t opening up on her own I felt it was in my best interest to leave her to her own thoughts. I continued making up my story of what she did to earn that orange jumpsuit. Within an hour, the guard called her out. I asked the guard what time it was. She answered 5:30. I never saw The Silent One again.

A few moments after that, six women were brought into the cell. They had all been transported from the Aurora Jail to the Arapahoe County Jail. Actually, I want to note here that I was “stationed” at the Patrick J. Sullivan Detention Center. Sullivan was the former Sheriff of Arapahoe County, and shortly after my release, Mr. Sullivan himself was arrested for trading meth for sex with boys and ended up in HIS OWN FACILITY! Now, that right there is a big ball of crazy! Anyway, two of the six girls seemed to know each other quite well. I’ll call them Shona and Mel. They were laughing and joking with each other and I wanted to get in on that. One of them said that she probably wouldn’t be offered a “PR bond.” I saw that as my chance to jump in.

“What’s a PR bond?” I asked, eyes as wide as a doe.

“What? Ain’t you never been in jail before?” Crap. Here we go again. I cleared my throat and said, “No, I’ve never been in jail before.” This got everyone’s attention and suddenly all eyes were on me. This opened the floodgate of questions, with the inevitable “Why are you here?” This piqued the interest of Angel and Elle, because I had dodged their questions earlier. I was going to fail at keeping The Commandments. I mentally crossed myself like a good Catholic, even though I’m not one, and let it rip. It was eight against one, after all. Telling my story would be better than facing that giant.

I explained about my situation: getting divorced, living in the same house, very sick son (which garnered a sympathetic “AWWWW”) and the husband who called the cops because I removed him from laying on top of my daughter.

Shona said, “Excuse me? You’re in here because you moved him off of your daughter?” I confirmed. “He called the cops on you for that? You didn’t hurt him?” The murmuring amongst the ladies was strongly in my favor. I think they took pity on me and decided that I could be their pet. Yay! I’ve been accepted!

Shona said, “I bet you wish you would have clocked that f*cker with a frying pan, right? I mean, make it worth your while to be pent up in here.” For a moment, I could feel the heavy cast iron skillet in my hand and the resounding thud of making contact with his thick skull as the reverberation moved from my fingers… to my hand… to my arm… to my shoulder. For a brief moment it felt good. I shook it off quickly, understanding that revenge – which was his M.O. – was not a game I would be playing.

I said, “Well, at least I got to meet all you lovely ladies.” And that’s all it took. They took pride in educating me. They explained the process of what I would go through in the morning, and that I would most likely be released on a Personal Recognizance Bond (or a P.R. bond.) They also explained that the blankets here were some of the worst in Colorado. Jefferson County had the best selection of blankets. And if I wanted to pluck my eyebrows, the toothbrushes that were issued here could be scraped against the wall to create tweezers since there was a hole in the handle. The toothbrushes in Boulder County? You couldn’t do that with their standard issue. I learned all the ins and outs of ACJ versus any number of facilities across Denver’s Front Range. I also learned that ACJ’s food was nearly inedible. Now, I don’t plan to start a food critique of local jails (what a great idea, though, right?) but I had to agree with them on the food. What they brought for dinner was repugnant.

Yet, Skinny Angel asked, “You gonna eat that?” I picked up the piece of dry cornbread before shoving my tray down to her. Angel sat to the right of me on the bench, Elle sat on the other side, and everyone else sat in a semicircle around my feet. I’d been storytelling for hours and they were loving it, even going as far as to make up my own fake swear words. They had been swearing like sailors all day and even though I love dropping a juicy f-bomb from time to time, it wasn’t a part of my every day vernacular. So, I improvised. Shona said, “Girl, just think of this like a Jail-Themed sleepover. You’re gonna be okay.”

We were called out in groups of three to do fingerprinting, mug shots and make our phone call. The first thing I did once out of the cell was look for a clock. I hated not knowing what time it was. Fingerprinting came first, then the mug shot (which I cannot find online… I assume it’s because I wasn’t convicted?) then the phone call. By that time, it was 6:30 pm. And, I discovered as I picked up the phone, that I didn’t know a single phone number by heart any longer. Damn smart phones! I had no one to call. I tried calling my dad and boyfriend anyway, because I did know their numbers even if they weren’t local. But most cell phones are not set up to accept collect calls from inmates. I replaced the handset into the cradle, completely defeated. As far as I knew, nobody knew where I was and I had no way to let anyone know. I returned to the cell with a very heavy heart.

Around that time, a very young girl was brought in to the holding cell. Her hair was cropped extremely close, she had tattoos on her neck, and even though she was tiny, I knew she was not to be tangled with. She sat with her back against the wall, her legs pulled up to her chest. She wrapped her hands around her legs as if she was warding off the cold. That’s when I noticed the tattoos on each finger of her left hand spelling: K. U. N. T. Now, I hate this word, but I wasn’t sure if I was disturbed that she had this horrible word permanently inked on her fingers or if I was more bothered that it was spelled incorrectly. And being a former H.R. manager, I would never consider hiring her. No wonder she had turned to a life of crime! That tattoo was a deep hinderance on her employable future.

For a long time, she didn’t say a word. Shona, Mel and I kept talking and eventually, I tried to incorporate K-girl. She looked up, teary eyed, and confessed that this was her first time in jail. Now, I wouldn’t have believed that, but I exclaimed, “Hey! Me, too!” I motioned for her to move into our circle. She did. And she let it all out. If I ever worried about losing my skills as a social worker, it is clear that I have not. I am an excellent listener, even if I am guilty of judging others for poor grammar and incorrectly spelled tattoos.

 

I had lost myself for most of the evening. But the sneaking realization of the fact that nobody would ever suspect that I was in jail had me scared. How long would I be here? And if I was released tomorrow, how would I get home? I had no coat. No bra. No shoes. No money. And I was at least 10 miles from my neighborhood. I was terrified.

And, worse, I had to go to the bathroom. People were starting to drift off to sleep but I wanted to wait until there were no witnesses. I’d been humiliated enough.

The guard opened the door and yelled “BREWER, you have a professional visitor.” I shakily stood up, wondering who on earth it could be, and went with the guard. We walked down to a small cell where a man introduced himself in a heavy, Indian accent as “Harry B.”

“I’m your criminal attorney.” Jeez. My very own criminal attorney. He opened a manila file folder, looked at a piece of paper and then looked at me. “Well, Sarah (which sounded like Sadah with his thick accent) your husband? He is a piece of shit.” I started crying and shaking uncontrollably. I had so many questions. How did he know I was here? What was going to happen in the morning? And what time was it, for crying out loud? He explained that my initial text message to my boyfriend was what set the wheels in motion. I had texted him around 7 am saying that Matt had called the cops. When he didn’t hear from me for a couple of hours after that, he grew concerned and called my dad. My dad called around to find that I had, indeed, been arrested. My boyfriend got in touch with my family lawyer who was handling the divorce and they found Harry B, who was miraculously making a 10:30 pm visit to see me.

“I’ll be here first thing in the morning. Do not be afraid. We will get you out of here tomorrow and this will likely be dismissed. You didn’t hurt him, he admits to that, and it’s clear the only reason he called the police was for leverage in your divorce case. ”

I shouldn’t have been surprised. This is how the Brewer’s roll. After all, as they gathered to mourn the passing of their father, there was a verbal throw down between two of the siblings which resulted in one of them going to jail. Classy. And to think of the two times that I should have sent Matt to jail for very serious and scary reasons, but refrained. Live and learn.

I am not perfect. I contributed to the downfall of our marriage. I had an affair. But just because I had moved on from our relationship wasn’t a reason to have me thrown in jail. Especially to have me arrested in front of Ben and Madeline.

Anyway, I begged Harry to stay for a while longer as I didn’t want to go back to the holding cell. It was nearing midnight. He assured me that I’d be out by tomorrow and left. The guard escorted me back to a different cell – I guess it was a “post-holding cell” before going to the actual jail cell – and I was separated from “my girls.” I was in with three orange jumpsuits who were waiting to be transported to another jail. I figured it was time to go potty. I didn’t know these ladies, so it didn’t seem as weird to go in front of them. I call this phenomenon “Jail Logic,” and I was grateful I’d had the foresight to hoard some toilet paper in my bra.

I didn’t make the effort to get to know these ladies. They still talked to me and questioned my jail history (I came to accept that I looked like a total newbie.) I asked if they ever dimmed the lights so we could sleep and one of the ladies said, “Girl, they ain’t gonna do that. Didn’t you know they call this jail “A-RAPE-A-HOE?”

My relief from Harry’s visit was completely overshadowed by the fact that Arapahoe County Jail was known as A-Rape-A-Hoe. I was horribly unsettled for a completely different reason.

And realized that I was never going to go to sleep as long as I was “inside.”

I think the most maddening thing about a holding cell is that there is no clock. Thanks to my son’s illness I am a professional at waiting for long stretches of time. And thanks to my incredibly active imagination, I can keep myself occupied for hours. But not being able to keep track of time when that’s all you have is extremely upsetting.

I sat there for three hours before the door reopened to allow another blue jump-suited “friend” to join me. My mind heard the canned applause usually reserved for a taped sit-com, you know, like when the Fonz had a scene on ‘Happy Days’ and you could hear everyone clapping, grateful that he had finally graced the screen with his presence. I looked at the floor, remembering the harsh words that the guard had left me with. Her Commandments: thou shalt not make friends, thou shalt not discuss your case, etc. It was an odd feeling to be scared and grateful for her presence all at the same time. I guess I could liken it to a middle school dance. God, how I wanted to be in her company, but her company made my palms sweaty.

“Nine months. He gave me nine months.” She paced back and forth as she told me.

“I’m sorry,” I squeaked as quietly as I could.

“No! That’s great! I thought I would get at least a year,” her long, dirty blonde hair was completely motionless even though she was pacing off her adrenaline rush. Then she quietly admitted, “I deserved more.”

I kept to The Commandments despite wanting desperately to ask more questions. I’m a social worker by nature, for crying out loud. This is my thing! She said her name was Elle (all names have been changed for obvious reasons.) Without my having to say a word she continued to tell me she had been busted for drunk driving a total of three times. This last time she had caused some property damage. And her pre-teen son had been with her. She was clearly ashamed of this fact, that she had subjected her son to something so horrible. He hadn’t been hurt – the only thing that died that night was a privacy fence. So, when the judge handed down something less than what she thought she deserved, she was grateful. She was going to use this time to get her life together. She had a plan. Honestly, I was envious. I had no plan. Heck, nobody even knew where I was except Matt, and, unfortunately, my children.

Elle stopped pacing and sat down. “They’re bringing lunch. I saw the bags in the hall before they brought me in.” For the first time, she really looked at me. I kept my chin low but peered up at her through my lashes, wondering if I wanted this new found attention. Then she asked, “Why are you here?” I deflected and asked quickly, “Lunch? Do you know what time it is?” She told me it was about 11:45 am. Then, she made the obvious deduction. “You’ve never been in jail before, have you?” I humbly admitted that I hadn’t. “Well,” Elle exclaimed, “lunch is the best option out of the three meals, so I’d eat this if I were you.”

And with that, I had made my first friend.

Elle was curled up sleeping on the bench as I continued to count cinderblocks. I’d already counted them before but, what the heck. I was checking my work. The door opened and in came a tiny girl (no doubt she was still deemed a Size S regardless of “Jail Size”) She sat down to the right of me by the toilet/sink/water fountain thingy. Despite my never being in jail before, even I knew that this was not an ideal place to sit.

Her Latin skin was covered with tattoos. There were a lot of angel wings anchoring names. I figured these names were either honoring her children or she had a lot of dead relatives. Damn those Commandments! I really, really wanted to ask. She eyed the apple that came with my lunch and asked if I was going to eat it. I said no. I had been bothered by visions of someone planting a razor blade in the apple, so I was scared to eat it. “Angel” held up her hand as if to catch a baseball. I chucked it in her direction, which she caught effortlessly. BAD ASS.

“You ain’t never been in jail before, have you?” God. Was it that obvious? I mean, outside these cinderblock walls I would be proud to say I had never been in jail before, but while I was being held captive within these walls, my jail-less past was a liability. “No. I’ve never been in jail before.” There. I said it.

“How old are you?” Angel asked as she crunched into my apple. I winced, waiting for her to catch the edge of that razor blade. With one eye closed, I said, “I’m 43.”

Her eyes popped wide as she exclaimed, “You’re 43? And you ain’t never been in jail before?” I winced again at the grammatical errors but quickly stopped before she caught it. That was the type of nonsense that would definitely get me killed.

She smiled at me and said, “Well, that’s pretty amazing. My first time in jail I was 16.” She went on to reminisce about her first time, and I listened. Her animated hands flying as she explained how she was caught trying to hide someone, not under a bed or in a closet, but she was trying to hide her 200 pound boyfriend by laying on top of him, shielding him from the police. We ended up laughing at the ridiculousness of this small woman attempting to camouflage a 200 lb man from the cops simply by laying on top of him. We laughed as if we were old friends.

And so far, all I had admitted was that I was 43 and “ain’t never been in jail before.” I was doing pretty well with the Commandments without alienating the women I was trapped with.

It was only 12:30 pm. I had over 28 more hours to go.

Clearly, this story will be continued….

Earlier this year I wrote a little bit about being arrested for Harassment and Domestic Violence. The entry is called “Jail” and you’re more than welcome to go back in the archives (March, 2013) and read about the events leading up to my arrest. In fact, I demand that you read it because I’m not planning to rehash all of it in this post. I’ll just say that my ex-husband called the cops on me because I removed him from laying on top of Madeline during a fight we were having. I didn’t hit him, he wasn’t hurt in the least, but in Colorado if the cops are called, someone gets arrested. Since he made the call, I went to the slammer. Today is the two year anniversary of my arrest, and I’m forcing myself to write about it now. You’re going to love it.

When I last left off, I was barefoot in the back of a cruiser, the plastic handcuffs a little too tight for my taste. The officers were talking about the Broncos and my mind was scrambling with how I was going to get out of this mess. My phone was left behind with my shoes. And my coat. And my bra. It was early morning, after all. Who gets arrested before 8 am on a school day? Me.

As the officers gripped my arm to “assist” me out of the back of the cruiser, I remembered that I was supposed to volunteer at the school library that day. Dammit. Should that be my one call? Just not showing up would be in poor taste. But my hands were tied. Literally.

The officers ushered me in to the intake area. There were two other men there, eyeing my bare feet as they completed their paperwork. Getting judged in the intake area at 8 am by these two nearly turned me into a real criminal. The intake officer was sorta nice. I sat on the edge of the hard, plastic chair, trying to keep my feet off the disgusting ground. I felt a little like Goldie Hawn’s character in “Private Benjamin” when she first joined the army and stated, “I think there’s been a mistake. I joined the army but I joined the one with the yachts.” Clearly, there had to be a better jail for a middle class lady like myself, right?

The officer saw me trying to balance on the edge of the seat with my hands tied behind me and my feet hovering (which is an excellent workout for the core, by the way) and got me a pair of paper booties. Then, taking his kindness a step further, he snipped off my cuffs. I thought to myself, this might not be so bad after all! Then he said, “You know, in a domestic case, you can’t be bailed out. Your case will be heard in the morning. You’ll be staying overnight.” My vision narrowed as all hope drained out of my soul. I thought I was going to be able to call my attorney dad, beg for some cash, and get out within a couple of hours. My thoughts of making it to my scheduled volunteer time at the school crumbled before my eyes.

The next few steps were humbling. They took my measurements to outfit me in a jumpsuit. “Are you a large or an extra-large?” It was the first statement that completely jarred me out of my thoughts. My face screwed into a “what the frick are you talking about? CLEARLY, I am a MEDIUM,” kind of look. Well, just so my fellow readers know, the jail system ups you a size. If you didn’t feel bad about yourself for being arrested, you could now feel bad about yourself because you are deemed heavier than you believed you were. I jerked the proffered blue jumpsuit, size L, from her cynical, non-manicured hands and stepped into the small closet to change.

Now outfitted with a Correctional Facility bra, I felt safe again. The guard took me down to the holding cell, took out her janitorial-style keyring that could serve as an alternate weapon, and unlocked the cell door. Before allowing me to enter, she said, “These ladies are not your friends. Do not talk to them. Do not discuss your case with them. And, if you’re smart, you won’t tell them where you live. Keep to yourself. We’ll bring you breakfast in a few minutes.” I entered the holding cell thrilled to see that I was the only one present. The long, narrow room had one bench that spanned from the door to the opposite wall. It was deep enough to lay down on, which I had already made up my mind that I was NOT going to do. There was one pay phone affixed to the wall at the end of the room. Even if I had stored a quarter in my, well, never mind, the phone was inoperable. Why it was there, I’ll never understand. It was probably a prop that brought hours of entertainment to the guards who peered in on what we were doing throughout the course of the day.

Regardless, the door slammed behind me and brought a chill that could not be alleviated. I noted the metal toilet/sink/water fountain set up that was in the corner and knew at some point I was going to be forced to use it. I have a very sturdy bladder but I’ve never gone an entire day without needing to evacuate. My survival instincts surprised me as I grabbed for the sole roll of toilet paper sitting beside the contraption. I stuffed wads into my Size L bra to save for later. I was going to hold off on using that thing as long as possible. And no way in hell was I going to take a drink from it.

The guard reopened the cell door and threw in a plastic coated mat and a military grade wool blanket. She said, “Sleep while you can.” I shivered in disgust of using a blanket that many other criminals had curled up beneath but my chill was worse than what comes with a skyrocketing fever. I couldn’t stop my teeth from chattering. And I don’t know if it was the cold or the intense fear of what the rest of the day would bring. Or utter disgust of eventually needing to use that toilet thingy.

This day was never going to end. So I sat on the bench, shivering desperately, and started counting the stark, white cinderblocks that caged me in.

 

Tune in tomorrow (I promise I won’t make you wait like last time!) to meet the “Cast of Characters” who eventually became my friends. 🙂

My Uncle Buster died this morning. I don’t know how old he was but he was an adult when my mother was born and she would have turned 70 this year.

Louie Carlyle Hinson, AKA “Uncle Buster,” was from Sumter, South Carolina – the oldest of eight children. There were four boys and four girls. Two of the boys died at the age of four – one from an illness and one who was decapitated on their farm. My Uncle Buster was the one who found his little brother after the accident. The other brother, Uncle Bill, died several years ago of a heart attack, which left Uncle Buster as the only surviving brother. Then, of course, my mother passed away two years ago, so now all that’s left are three sisters.

My sister called to give me the news. I was driving Madeline to school and had noticed that the flag was at half-mast. I saw Cassi’s number pop up and answered the phone with “So, why are the flags flying at half-mast?” and her response was “Uncle Buster died this morning.” It took a second to process what she had said and to briefly entertain the thought that the entire country was mourning the death of my Uncle. I had to pull myself away from that quickly or I was going to get stuck there for hours. “Really? He died?” She confirmed that his daughter had called this morning to let her know he had passed. Evidently, he had been in the hospital for a few days. He had been in poor health for many years. The doctors revived him once this morning, which lasted for about an hour, and then he died.

I hadn’t seen Uncle Buster for many years. In fact, I think the last time was when Ben was a baby. In my defense, I have been a little busy dealing with cancer over the past decade. But growing up, we saw Uncle Buster at least once a year. We’d pile into our van and make the pilgrimage from Central Ohio to Sumter, SC to visit my relatives for the annual family reunion. This was always in August, which anyone from the South knows that this is the worst possible time to visit. The bugs. The heat. The humidity. It was uncommon that I looked forward to the trip because this little redhead does NOT do well in those conditions. To make matters worse, my family always packed a tent for us to sleep in for the week. It was big and blue and easily accommodated all of us, which numbered anywhere from six to eight people. However, the first night of our trip I would find alternate lodging. Many of Mom’s relatives still lived in the area, most of them in trailers scattered about over two lots of property. I would duck into one of those air-conditioned beauties and hide out until it was time to go home. There were so many kids no one really noticed my absence and no one really noticed one extra person sitting at the table. I was small. And quiet. I found that I could get away with a lot based on those two traits.

One day out of the vacation was always dedicated to Myrtle Beach. Now, I love water but back in the 70’s when I was a child, the sunscreen options were poor. There was baby oil and then there was Sundown, which was thick, gooey and made me whiter than I already am – if that’s possible. It took four hours to dry and had to be reapplied every half-hour. And then the sand. God, I hate sand. The beach was about two hours away from Sumter. We’d get up early, drive forever, rent an umbrella in front of the kitsch store “The Gay Dolphin” and spend an entire day getting sandy and goopy and still end up getting blisters from the sun. What made it more “fun” was that Uncle Buster loved to play in the waves. With me. He’d lift me up and say “Wheeeee!” but the timing was all wrong. He put me down when the waves crashed over us and lift me up as the water melted back into the sea, salt water gushing up my nose causing my sinuses to drain everywhere. The salt and sand stuck to my splotchy white skin. Despite loving the water, I have an irrational fear of drowning. I figure that I will someday meet my demise trapped under ice… and have the eerie feeling that I’ll hear my Uncle giddily crying “Wheeeee!” as I run out of air.

Uncle Buster was as round as he was tall. His beach attire was a pair of cut-off work pants that were held up with a length of rope. He would go shirtless but had an amazing sombrero type hat where we could all seek refuge from the sun. I loved that hat. He was a good natured man. We’d go to the hot dog place next to the Gay Dolphin for lunch. I don’t think he ever met a stranger. Even though it was not my scene I still enjoyed myself. Until the long car ride home covered in itchy sand and painful blisters.

The rest of the week revolved around a pig roast and running around with my hordes of cousins. My Uncle was the unofficial ring leader of this circus. His trailer was HQ. There was always an ice cold pitcher of sweet tea in the fridge and his wife, Aunt Wanda, holding court with all the sisters. She was a lovely lady. She taught me to crochet and sew. As the ladies were in the “hen house” Uncle Buster would cat nap in his recliner. His girth allowed for some mighty snoring. My “twin cousin” (we were born hours apart) and I would pretend like we were riding motorcycles, revving up in time with Uncle Buster’s obstructed breathing. It was great fun.

Uncle Buster was a Navy man. When he completed his military service, he worked for Campbell’s Soup for years. He was set in his ways (a nice way of saying he was stubborn as a mule.) I liked the way he said my sister’s name with great verve. I liked that he worked hard and put himself through school after his military career. I liked that my mom could go to him when she needed help.

Interestingly enough, I made a big batch of sweet tea this week. I haven’t made that in at least 14 years when I was married to my first ex-husband – also a Southerner. I don’t know what compelled me to do it, but I enjoyed a big glass last night with my homemade fried chicken. When I woke up this morning, I knew something was wrong. I could feel it. Not to seem weird, but I usually have an intuition when someone is about to die. I don’t know who it will be but I know it’s coming. When I saw the flag flying at half-mast, I thought maybe I was wrong because I don’t have premonitions about famous people or politicians dying, just those close to me. But I should have taken from my cues of making sweet tea and frying up chicken that it was going to be one of my Southern relatives.

So, this morning, I’m eating my grits with cheese and bacon and remembering my Uncle Buster. He is predeceased by his wife, Wanda, and son, Louie Carlyle, Jr. (Dickie) and survived by his daughter, Carla. Rest well, Uncle Buster.

I sure hope they let you into Heaven wearing that awesome hat.

My heart is breaking right now. My little Yoshi, the dumbest dog in America, is basically laying on my head vibrating with fear over the lightning flashing outside.

When I write my daily missives, I sit in the same place on the couch (the kids call it “mom’s spot”) with my computer balanced on the arm of the couch and my left leg, which means I’m basically curled up in a ball when I write. I don’t imagine it looks very comfortable from an outsiders point of view, and my chiropractor insists that my 45-year-old body is no longer a candidate for such shenanigans. But something about twisting my body in such a manner creates a path of creativity that cannot be duplicated by sitting in any other position.

Today, however, my jittery dog is jockeying for space where there is none because of a little storm. The jolts are close so they are fairly loud, but I don’t think it’s anything to worry about. Yoshi cannot be convinced of that. My lyrical voice coaxing him to understand that it’s okay falls on deaf ears. Maybe his brain is just shaking too hard for him to hear me? This poor dog is a big old mess.

Why are so many of us afraid of storms? Is it because we don’t know when lightning will strike or are we just afraid it’s going to ruin our picnic? Uncertainty is annoying, that’s for sure, but what can we do about it? I’ve faced many storms, especially over the past 10 years with Ben’s illness, and the jarring electric pulses of surprises nearly always startles me leaves a metallic taste in my mouth. But then there’s the time to recover from the shock and find normalcy even though the storm continues to rage. It might not match any definition you’ve ever had of normalcy before, but it becomes a part of you. You have to learn to live with it. You have to make peace with it. Or at least come up with a schedule of when it can interrupt you and when it can’t.

Sometimes life is a bad roommate and locks itself in the bathroom when it’s technically your turn – according to the schedule, anyway – but you find a way to deal with it even though it infringes on your rights as a human being. Besides. It’s just a storm. It will pass, right?

I guess I am afraid that this storm will never pass. Or, I guess I’m more afraid that if the storm does pass that it will take my Ben with it. Admittedly, I’m afraid of this storm. But there’s nothing I can do about it. However, I’ve let it take up enough of my time by cowering in fear of it. Yes. It’s raining. The lightning is loud and obnoxious. But, if I listen close enough, the pelting rain is soothing. I’m able to find a certain amount of peace.

No amount of lyrical coaxing will take away what we’re dealing with. Ben has chronic disease. It’s always going to be lightning that is threatening to strike us. But if I curl up and hide – if I remain shaking in fear of the damage it may or may not do – I’m missing the point.

Life goes on despite the storm. Find a good umbrella and get on with it.

 

I’ve been sorting through tons of photos lately. Partially because I’m sick of having random boxes filled with pictures sitting around the apartment but mostly because I’m trying to put something together for my sister honoring our mom who passed away in 2011. I’ll be traveling with the kids to Pennsylvania to see my sister in less than two weeks so this is my one shot at getting her Christmas present to her in a timely manner.

As I’m sorting through my photos, I notice that I have a lot of varying piles. I imagine most people have piles labeled “childhood,” then, perhaps “high school” and “college.” Other categories might be “first dates, the wedding, birth of Junior.” But I have crazy piles. I have baby pictures, then the first splinter of pictures with mom versus pictures with dad. Then pictures of my new extended family with mom and pictures of my new extended family with dad. And all that comes with that. The one thing that stayed consistent was that I stayed in Southwest Licking School District from first grade through graduation. So, I knew all the same friends and acquaintances from 1974-1986 but my family changed more times than I can count. I tried tallying up my step-siblings at one point, I stopped counting at 20.

As I read through my prior posts, I notice that I talk a lot about my crazy family. I feel the need to clarify some things. My mother married when she was very young. She had my sister when she was 18. She divorced her first husband (who I know very little about) and raised my sister on her own. Then, a few years later, she met Dan. It was a whirlwind romance (he is a charming SOB) and they married within a month of meeting each other. His looming participation in Vietnam made them make some hasty decisions, like marrying quickly and creating a reason to keep him home from the war. That reason turned out to be a seven pound, redheaded troll-like character they named Sarah Danel Phillips. Me. Since my grandma’s name was Sarah, they called me by my middle name, “Danel,” which I always hated. It’s spelled wrong and nobody pronounces it correctly. And I wonder why they didn’t just call me “Dammit” like they really wanted to since I failed at keeping my father out of the war.

So, Dan went to Vietnam, got shot up a bunch and was sent back to his new wife, adopted daughter and newborn. It could never last. They divorced when I was four or five. I lived with my dad’s parents, Sarah and Jake, for a year while everyone went out to find new spouses. And that’s when shit got weird.

When I speak of my crazy family, I’m usually referring to my biological father’s side. With the exception of temporarily living with Jake and Sarah, I always lived with my mother as did my sister. We’re nearly seven years apart though, so we didn’t interact much. My mom remarried a man with four children. My dad remarried a woman with two children and then had a son when I was seven. So, I went from having a solitary sister, to having eight siblings. Some weird stuff happened with the new family I was living with but most of the weird stuff happened with my dad. He is not a bright man. He is not an affectionate man. And, since I had a new dad to care for me, he didn’t feel the need to be involved. It’s been a difficult thing to come to terms with.

My mom divorced the man with four children when I was 12. My dad’s marriage ended when my step-mom killed herself in 1987. My dad has remarried a few more times, which added to the step-sibling tally, but after my step-mom died I stopped having much interaction with my dad at all. I made it a point to maintain my relationship with my little brother because he had no one after his mom died. He was only 11 and I thought it was terribly unfair that my dad was now his sole support.

My mom, Patricia, was always my one and only mom. We didn’t always get along (it was downright combative at times, with both of us earning multiple purple hearts due to our inflicting so many injuries on one another.) My “dad” is Rob, the man who married my mother when I was 19. My sister, Cassi, has been there from the beginning of my redheaded-troll life and my brother, Scotty, deserves to have something other than what was given to him at birth.

We aren’t whole. We’re splinters. And I like that I can categorize so much of my life with wacky subsets like “second step-mother” or “step-sibling, twice removed.” My family tree isn’t one that is easily traced but what it comes down to is that biology has so very little to do with it. I complain a lot about my family, but, admittedly, it’s very rarely my “real family” that I’m complaining about. I miss my mom terribly. My sister is lovely. My step-father, despite never having any biological children of his own, actually understands how to love me like a daughter. And my brother needs the protective love of his older sister.

Love is where you can find it. Family is who you accept into your inner circle. And even though some of my splinters hurt a lot, I kinda like who I am because of all the craziness. It has made me a better mom. A better friend. Many have wondered why I would get a divorce after seeing what it can do to a family. But I know that if my parents had stayed together that it would have been disastrous. Maybe I didn’t make the right decisions. I admit that I made some mistakes. But when it comes down to it, my children know they are number one. They will never doubt my love for them because I learned at an early age how painful that feeling of doubt truly is.

Adversity makes us stronger. And my jacked-up family has given me a multitude of material that – if I were brave enough – would fuel my stand-up comedy career for many, many years.

Yes. I complain about my crazy family and dysfunctional childhood all the time. But, in all honestly, my core family is pretty darn awesome.

It’s uncommon that I sit and stare at a blank screen for long. My overactive imagination rarely lets me get away with having nothing to think about – or write about – but here I am. Staring. Wondering what to do. And how I’m going to get from point A to point B. But I don’t even know where or what point B is. So, I guess I’ll just sit idle on point A for a while.

I woke up to hideous news this morning. My friend’s son isn’t doing well. I don’t know what the next steps are – if there are any steps left to take – or what to say or do. For once, I’m seeing this from a point of view that many of my friends see it from with me. What do you do? I can understand why so many retreat from me. Not that I am planning on the old “cut and run,” but there’s simply nothing I can say or do to offer her any comfort. Her son is losing his battle and she is forced to sit by and helplessly watch his struggle.

When she shared the bad news via text this morning, my sole response was “shit.” Eloquent, right? But, in commanding my inappropriate mind to come up with something more powerful or what would express my true feelings, “shit” was all I could come up with. I immediately apologized for my profanity, and that’s when she admitted that my apology made her laugh.  I let her know that while I may not be the most articulate person in the world, my heart was sincere. And if nothing else, I’m always good for a laugh.

This is a lonely way of life. Or maybe it’s not. Maybe I’ve just isolated myself over the past 10 years. I always had a knack of hiding in a corner as a child. I created my own mecca by shoving two tall dressers together and planting a beanbag in between them. I’d crawl to the top of the dresser and slide down to the safety of my fortress, sinking into the comfort of my beanbag chair and writing for hours on end in my Holly Hobby notebook that held all my hopes and dreams: To have a good hair day. To pass an upcoming math test. To find the disembodied head of my favorite Barbie Doll. To someday get a tan.

I think I underachieved in the dream department when I was young. Really, all I wanted was to get through the day. I faced a lot of adversity in my youth. My family was full of dysfunction and I never quite got over losing my beloved dog, Dino. He bit some kid in my neighborhood and mysteriously “disappeared” afterward. I know I’ve recounted our less-than-amazing family life in prior posts, but all I’m trying to say is that when life got hard, I would tend to hide from it.

But here I am, a mother, something I never thought I’d be because I don’t really like children. At least I didn’t when I was a kid. Now I find that I absolutely adore them. And my children are the star on top of my Christmas tree. My world isn’t right without them. To be faced with potentially losing either one of them is nothing short of ridiculous. It makes me question absolutely everything.

So, how do I comfort my friend when I’m falling apart myself? She expressed her desire to stay in bed today, so, being the excellent friend I am I did that for her, pulling the covers up over my head and willing all the outside ickiness to disappear while I hysterically cried. Until a bill collector called me to “gently remind” me what I still owe. And then another phone call from school to report that Ben was sick. Again.

Seems that I no longer have the impenetrable fortress from my youth. Holly Hobby no longer protects my hopes and dreams. The bad news keeps coming and I keep tripping over this life. But the world keeps spinning. Faster and faster. Eventually, I’m going to fly off and smack into a wall, skidding slowly to the bottom like a cartoon character. That might not be all bad, I could certainly handle being unconscious for a while.

I know that’s not the answer. And I’m not going to take the path of my ancestors of dealing with my pain through alcohol, or beating others, or taking lots of drugs, or turning bitter. Life is hard. But I feel like I’m at a critical point where something has to give, darn it. Sadly, my fortress is no longer an option. I wish I could hide from all that is devastating me. And I wish I had all the answers.

But I don’t.

 

 

When I was in high school I was commanded to study a number of books that I deemed as unreadable fiction. I’m typical in the way that I hate to be told what to do, so the list of books outlined on the syllabus of my American Lit class was seen as a ball and chain that would undoubtedly drown me. “Lord of the Flies?” Gross. “Catcher in the Rye?” What’s the big deal? Holden wasn’t that crazy. “Last of the Mohicans?” Please. Someone shoot me with James Fenimore Cooper’s beloved rifle, ‘Killdeer’. After reading the opening paragraph of each novel, I knew whether or not I’d be heading for the Cliff Notes.

One story I read, however, has stuck with me my entire life. It was the deliciously bizarre short story “The Lottery” by Shirley Jackson. For those who haven’t read it, it’s about a small, rural town where the residents hold an annual lottery. It’s a highly anticipated event, everyone in the town participates, and the person who draws the paper with the little black dot on it gets stoned to death by their fellow villagers. Neat, right? I was stunned after reading it and have been haunted by Shirley Jackson’s little nugget of terror ever since.

Breaking down the story to discuss the overtones of human hypocrisy and the thought that evil lurks in every single one of us is not why I bring up this story. Whenever something strange happens to me, I think of “The Lottery,” and wonder how I could keep drawing the same tainted piece of paper over and over. There must be thousands of papers in that black box, neatly folded to obscure the delicate dot from nervous eyes. But my hand must have a magnetic attraction to that little black dot, for I keep drawing that SOB every single time. It’s a Crap Lottery.

Before you think I’m feeling sorry for myself or being a “Negative Nancy,” I’m not. I’m simply stating facts. If statistics show that there’s only one percent of a chance that some craziness will occur, then I guarantee that I’ll be that one percent. I have many examples, but let’s focus on what happened today.

Ben is due to start his next round of chemo tomorrow so we spent the majority of today at the hospital completing blood work, checking vitals, being examined, etc. The subject of flu shots came up and I stated that I hadn’t had one yet. The kids got one a couple of weeks ago as a prerequisite to attending a cancer-family retreat with their dad, but since I didn’t go, I didn’t get one. So, when a shot was offered to me today, I accepted.

Now, I have a long standing fear of needles that is borderline phobic. The reason behind this rests on the dentist who worked on me throughout my childhood and into my early adulthood. He was French. He wasn’t particularly gentle. He hated Jane Fonda and felt it necessary to take it out on me. Every. Single. Visit. When I was around eight, I had an abscessed tooth. The adult tooth was growing in before the baby tooth could fall out, which caused a lot of conflict with my gums. My dentist decided to pull the baby tooth.

Like all good dentists who practiced in the 1970’s, he loaded me up on lots of laughing gas. As my world seemed to float just out of reach and everyone’s voice became echoey, I listened to my dentist’s latest rant against Jane Fonda in his thick French accent. Then I heard a disembodied voice ask, “How are you feeling?” I turned my head to see where the voice was coming from. It must have been funny because the dental assistant giggled and said, “Who are you looking for? I’m right beside you!” and then she said, “I believe she’s ready, Doctor.” I saw my dentist’s pudgy fingers slide through the handles of the syringe that looked like it was pilfered from Dr. Frankenstein’s lab, his thumb poised on the plunger. “Relax and open wide,” he commanded, “This will feel like a small pinch.” I closed my eyes and opened as wide as I could, the gauze padding stretching my cheeks as full as a chipmunk’s.

And then, like all good dentists who practiced in the 1970’s, my dentist said, “Shit.” Well, technically, he said “Sheet,” thanks to his French accent. My eyes sprung open to see the tip of the horrific-looking syringe missing. Even though I was only eight, I was quick to make the deduction that the missing piece was still imbedded in the roof of my mouth. He tried pulling it out with his fingers first, but eventually had to go in with a tiny pair of pliers. Despite my anxiety and hyperventilating, he continued the procedure. My tooth was out before I could regain any composure.

And, unlike the subject of Jane Fonda, it was never mentioned again. So, now I have great anxiety revolving around needles, especially when coupled with any discussion of Jane Fonda.

Now, I’ve been around a lot of needles over the course of Ben’s therapy. In fact, when Ben was discharged from his first round of chemotherapy in 2004, the discharge nurse came in to explain that I would have to give Ben a shot every day for the following five to seven days post-chemo. Oh, no. No, no, no, no, no. I don’t even like to LOOK at needles. How on earth do you expect me to deliver a shot to my toddler? Clearly, these people were on drugs. Matt said that he would take charge of that piece of therapy, but when the nurse came in to teach us how to do it, Matt had mysteriously disappeared. I asked them to wait while I looked for him, but they couldn’t. So, I learned. I practiced on fruit. I practiced on a doll. And later that day, I practiced on my toddler. Never was there more sweat emanating from a human being than on that day.

Do you get it yet? Needles are gross. Me no likey. I do get a flu shot every year, and I have recently participated in acupuncture (which, by the way, truly helps!) So, I CAN handle needles, but I still have some anxiety revolving around it. When Ben’s nurse came in to administer my shot, I explained my apprehension and that I would ultimately be fine but to just let me do my deep breathing. She was very understanding and mentioned that it was quick and relatively painless. When the time came, she deftly plunged the needle into my arm. I didn’t feel a thing. Whew! But within moments, she muttered, “Uh-oh,” under her breath. Wha-wha-WHAT? my mind screamed as she tried to maneuver the needle while she explained that the plunger wouldn’t work. She got half of the dose in but the rest simply wouldn’t go. She pulled the needle out and gave me a curious look as I laughed maniacally. “I laugh when I’m stressed, so don’t worry,” I nervously giggled. She said “let’s try the other arm.” I said NO and she complied. She let me have a breather before trying again. Still, no success. My laugh became a little more anxious.

She pulled it out and held it up to the light to inspect the needle. She depressed the plunger, which worked without issue. Then she left to reload a new syringe with more vaccine. She asked if she could try the other arm once she returned. I had to surrender. The needle sank below the surface and the shot was successfully administered. Just like that. Just like it was supposed to the first time.

In all her years of nursing she had never experienced such a thing. Of course, it’s me just winning my Crap Lottery. They should examine me and write an article for their trade journals. Statistically speaking, I am a rarity. A freak. A plain, old oddball. It’s just the luck – or unluck – of the draw.

I walked out holding both arms, wondering if it was all worth it. If I end up getting the flu after all that, I’m going to be completely peeved.

But, rumor has it, the third time’s a charm. It was with today’s shot. Maybe it will be with my next husband. And hopefully, it will be with Ben’s fight with Neuroblastoma.

I truly hope my crap is running out.

Whew. Ben’s scans were clear. I can breathe again. Well, until the end of next month when scans will be repeated.

I spent the last week peeking around corners, trying to be as quiet as possible, so we could sneak by cancer. It’s still around… it’s always around, but for now it’s sleeping. It’s like a volcano. It has erupted in the past and we were on super-double-secret lockdown while we rode the storm out. But with each passing day we sneak closer and closer to normalcy, knowing it can erupt at any time and spew its fiery lava into our lives. It’s like a bastardized game of red light-green light. Run like hell until it shuts us down. Covering us with its incendiary ash and freezing us in our tracks, daring us to move so it can catch us again.

Tag. You’re it.

But for now, we’ve found a good hiding place. And as each day passes we become more comfortable. Forgetting the promises and bargains we’ve tried to make with the beast as it leaves us to celebrate the frailty of life. Always understanding that becoming too comfortable will end up surprising us in a way that has the power to destroy us.

This is not a fair way to live.

I know this sounds a bit paranoid, but there are always a few people out there who don’t understand the process. “Ben is NED? Does that mean it’s over?” Unfortunately, the answer is no. It may have been the case for us once upon a time but when he relapsed the first time – despite it being four years post-treatment – we knew that we were up against a new type of beast. There are some children who have neuroblastoma once and finish treatment, never to hear from neuroblastoma again. But when a relapse comes, you find you’re fighting a whole new horror. And with each relapse it gets harder and harder to beat.

Last week before scans, I dropped Ben off at school. I always sit and wait at the curb, my idling car patiently waiting, just to make sure he makes it inside. Or, to rescue him if he decides to make a run for it. He never does the latter, but I want to be there just in case he does. On this particular day as I watched his oversized backpack dwarf his small frame, his arms devoid of its usual pendulous swing, I knew he was tired. I think he likes school okay, but he’s exhausted. Middle school is a whole new ballpark. Switching classes. More homework. New people. Some of them friendly, some of them not. And coupled with this new course of chemo, despite it being a fairly low dose, he’s wiped out. I’ve formed a bond with the school nurse, who is absolutely precious and a cancer survivor herself. She knows the drill. He seems to spend quite a lot of time with her, feeling nauseous, feeling tired, or snagging a soda from her stockpile. I know he’s in a safe place with her.

He did, however, get bullied by a few kids recently. One kid was calling him “tiny Ben.” Ben advocated for himself and told the kid he didn’t like to be called “tiny.” He is particularly sensitive about his size, so this is hurtful to him. I was proud that he asked the kid to stop and when he didn’t, he took it to the next step. I applaud his bravery. But then a couple of girls approached him and his best friend in the cafeteria and asked if they were going to the dance after school on Friday. The boys said they weren’t. Then the girls turned evil. They said that Ben and his friend were the ugliest boys in school and no one would go to the dance with them. When Ben told me this, I went looking for my Edward Scissorhands gloves. Tears immediately sprang to my eyes and I asked Ben how he felt about this. With downcast eyes, he reported that he didn’t care. I mentally called bullshit but I left him alone. I immediately contacted his counselor at school and reported what happened.  She, too, had a very emotional response and said she’d take care of it. Within two days she presented Ben with a handwritten note from both girls, apologizing for being meanies, and promising to amend their behavior. They got in big, fat trouble, both at school and at home. The Edward Scissorhands gloves are back in storage – for now. Ben went to the dance with a group of friends and had a good time, and even danced a bit. I would have loved to see that. 🙂

I so wish we could get a handwritten note from neuroblastoma, saying how sorry it is for torturing Ben and killing so many of his friends. Unfortunately, it doesn’t care. So I have to sit by and watch as it wears on my son – mentally and physically. I can’t tell on it. I can’t stop it. So I sneak around it, praying every day that it doesn’t come for our lunch money.

It’s hard to live in this shadow of fear. But with each clear day, we’ll creep towards normalcy, hoping the bully shrinks into the shadows. We certainly don’t want it to torture anyone else, but we sure would like it to move to a far away and desolate location. Like Detroit.

Scans will happen every other month for now. This study he’s on will take a year. Things are good right now – and we’ll embrace that – but this is far from over. We’re patiently waiting while begging and pleading for the coast to be permanently clear.