The hell that I’m in…


Hell. A place different for every person, and yet the same for all.

Willing yourself out of a hell-hole is fruitless. You can no more decide to get up, toss the cot depression has forced a deep slumber in, than the ocean can decide to leave it’s bed. Those who reside on sunny beaches do not understand. Lying on a sandy towel is far different than drowning in the sea’s bed.

I’ve not been able to write. For a writer to not be able to write, it is a very specific kind of hell. The way I keep the world from running me over like a Mac truck is to restrain it and contain it with words. Forcing life to conform to a page; insisting that it take up residence within letters, words, and sentences; it takes the helplessness away.

I’ve never written like other people do. I’m kinda an odd bird. Most people have a vague idea what they want to express, feel a burning desire, and then grab a pen and paper or the keyboard to sketch out what they want to say. It maybe only be an outline or a cluster of words or quotes, but they have a clue.

I’m not really sure how to do that. Writing possesses me, not me it. Authorship dictates what I have time for; what priority my time and obligations get to number in rank, deciding what I will do, in which specific order, to secure my release. Sometimes it can be freeing and heavenly. Sometimes it can be an impatient beast, moody and demanding. Regardless, I live within the parameters that it calls upon my soul in order to keep this life thing rolling along.

keyboard-1176257_960_720Usually I sit down, place my fingers at the keyboard, and I relax. I don’t look at my screen. I stare out the window, maybe watch a bird or a squirrel do their thing. I let my senses loose; let them carry me away while slowing my heart rate slows to a crawl, and, like a burst of life giving breaths, words spring forth and I begin to write.

Now is not the “usually” time in my life, not by a longshot. Now is hell.

Mother’s crave quiet. Mother’s crave the beauty of stillness.

Authors fear the stillness of fingers on a keyboard and the quietness of their minds.

The ability to not be able to write has not just squashed my voice, it’s murdering my wandering soul. I am no longer able to think. I can’t breathe. My lungs have a mountain of hopelessness sitting atop them.

Exhaling. All I can do is exhale. Panic rises with each bit of air that leaks out.

What happens when there’s no more air to release? Tears, sweat, then blood.

Blood begins to take the air’s place. Life giving blood pours out every crevice. Every drop empties me of the will to even try.

There was a time that words were like grains of sand. They flowed from my fingers, escaping regardless of whether I wanted them to or not. Now? What once was life giving, the act of putting words to the page, has turned on me, and, for every word that goes untyped, it punishes me.

I’ve become hollow, empty, depressed. I fell into a hole and I cant climb out.

I’m in a bottomless, wordless, hellish pit that light refuses to enter. The entrance is  sealed with nothing but a password and I can hear the mocking laugher, mocking the fact I have no words to offer.

I must escape. Much longer in this wordless hell and this damned place will become lethal. the last words that will be written will be, “The end.”

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I’m still kick-ass (if you don’t look close)


photo 9

Me… The kick-ass version from years back

When I stay far away from a mirror, I can pretend that I am a bad ass. Oh stop it. Mom’s CAN be bad ass too, ya know. Think of the quietly aware Angelina Jolie as Laura Croft, ‘Tomb Raider’ mode, only with this mom, sporting somewhat untamed red curls, decked out in an old tank-style Tee, ripped jeans, and an old pair of black combat boots, my favorite uniform of choice.  Well that, or maybe swap in a pair of red converse. photo 13 Yeah, I know, way less kick ass, but I adore these beat up old red kicks, so bear with me here. I can kick the world’s ass in any pair of footwear I choose, trust me.

Lately, however, I have been sporting far less of my kick-ass self and far more of my withdrawn and pathetic sister-self.  I really loathe this in ways I can’t even begin to put into words.

I’ve been faking it, playing a role, stepping into and out of it like an actress on a movie set.  I am so all about “ditching the masks” but I never want to admit the final truth that lay behind this one mask I often refuse to admit I wear… The “health” mask. I hide behind this one. I hate anyone knowing my truths here and the reality on this one.

I feel so “less than” when I am forced to reveal this and abide by the restrictions that come with it. I know my family loves good ole, “Chiari Christi,” but I loathe her. I don’t like anything about her. She annoys me and sounds whiny in my head. Who would want to be around me if I was always being truthful about the question, “How are you?”

There are very few people in my life I will look in the eye and tell them the truth. THAT is the real truth right there. Why? Because I fear letting anyone know this side of me. Because I am sure they will turn and run the other way. Because I am sure they will say to themselves, “I just walked into a hot mess.”

My reality IS a hot mess. Chiari Malformation is a hot mess.  Period. What is Chiari Malformation you ask?  If you are new to it, the layman’s terms (very non technical) is that my brain is simply too large to fit into my skull.  My skull is too small.

What happens when your brain is too big for the container provided to keep it in?  Bad stuff, that’s what.

It then herniates (or squishes down into) the brain stem where all the nerves run from your brain into your spine; so that you can do lots of messaging work in the rest of your body.  Squishing brain matter into a space specifically designated to do some demanding networking  work, things get mucked up.

It can cause many different things for many different people, and no two Chiari patients are the same. Why? Because we are talking about squishing a brain and it’s networking system of nerves and signal translators. No two brains squish the same two nerves the same way. It makes it hard for anyone to really understand, and why it goes undiagnosed for so long for most of us.  (More info read over @ http://en.wikipedia.org/wiki/Arnold–Chiari_malformation )

I wasn’t diagnosed until 4 years ago now.  The fact is that I was born with it and had constant issues with it much of my life. We never had a clue and for me, it wasn’t life threatening, so it was okay that it wasn’t diagnosed. Right now I am waking up each morning on at a 7 on a 10 pt scale.  My pain is so high I am beside myself most days. It makes me irritable and grumpy.  If I didn’t wear a mask, even my family would disown me. I had so much I wanted to do this summer and I am now just mad, constantly, about the damper this puts on my plans. Last trip for 4th grade

My goal, recently, was to just make it through the rest of the school year, to go on that one last school field trip and make it appear I somehow was loving every second of the day with my son,. I wanted to laugh with him, to help him shake the stoic seriousness he seems to wear as his mask at school, and to have him cut loose and have fun. Only then I would gratefully return home to collapse.

(When no one was watching, I did exactly that.)

Still, I had one last goal.  I HAD to make it to my writer’s conference.  It was scheduled for the last day of school and that weekend.  If I could hold my act together for just one more round… one last performance, then I could come home and just let it all go.  I didn’t really know what I’d do then, exactly, but at least I would get to go and then I’d figure it all out.

When the Chiari calms down, and it doesn’t decide to add extra stress to my life, I feel so normal. It’s easy to forget this even exists.  It feels like a bad dream.  When it flares up, I am hit with 2 tons of bricks swinging directly at me.  There is no way to duck. I just have to face the full brunt of it head on.

It’s been harder this time around to really dig in my heels and do what my Dad taught me. Yesterday was Father’s Day and I really thought of him a lot.  My dad has known pain, a LOT of pain, and most of it is chronic and can’t be “fixed,” meaning no cure.  He’s been though numerous surgeries to combat pain and to try to make it better, but he will never, EVER, be without pain.  I have a whole family, honestly, who had chronic pain issues stemming from an assortment of this and that, none of which are Chiari, but who all have shown me that pain is not something that stops you, but that is an obstacle to simply be overcome.

My dad talked me down off a hypothetical cliff one day in the midst of one of the biggest pain days, and one in which I was scared out of my mind as they discussed brain surgery with me.  The surgery would “relieve” some pressure and symptoms, maybe some pain, but it would not cure this.  Not ever.  So at that point I had to decide to keep running from the pain and loathing it, or turn and embrace it.

10473184_10204434408446724_1070815805391277483_nMy dad told me that sometimes we are not meant to live pain free lives.  You have to turn and face the pain head on and not even tackle it… not overcome it.  Instead look at it and hold out your arms and embrace it.  Each time you feel the pain getting stronger, squeeze tighter, know it as a sign you are alive, and own it as your own.

Like it or not, Chiari makes me who I am.  I would not be the woman I am without it. I am forced to do hard things every day of my life.  Getting out of bed today, for instance, took a hell of a lot of doing, will, determination, and drive.  I can guarantee you I would prefer to still be back there in  bed, pretending I was not awake.  Sleep never claims me easily and when I wake I am sad.  The pain is right there saying, HI!!  REMEMBER ME??  and I want to punch it in the face.  But I am gonna kill it with kindness and instead just hug the thing to my chest and claim it.

There isn’t much I fear in life, except failure.  Once you live with chronic pain your brain says, “seriously? If you can do THAT everyday, then this is a cake walk.” I’ve found that the only way to fail is to never have tried at all. I can’t succeed if I don’t step out the door and try the day. I’ve failed if I don’t get out of bed and I don’t try to meet the day and all it throws my way.

So watch out world, Chiari Christi or not – I still intend to kick some ass out there.  I got dreams ya know.  I still got things I wanna do.  I don’t care how hard you try to knock me flat, I am still gonna stand back up and try twice as hard as I did before. That’s just how I roll.  You’ve been warned.

Failure. Simply not an option.


She stood in the kitchen with tears streaming down her face. Her hands were over her mouth and she tried unsuccessfully to stop the sobs before they began. A gut-wrenching cry escaped from her core and she melted down. The harder she tried to stop, the more angry she became with herself that she wasn’t stronger, and so the faster the sobs came. She loathed this part about herself. She hated when she did this. Angry hot tears burned her cheeks as she sucked in a breath that did nothing to cool her parched lungs. She could hardly take a breath in for all the emotions flowing out of her. She was terrified of herself.

She glanced at the dirty dishes on the counter and her eyes lingered on the long knife that lay there. No thoughts consciously went through her mind. Nothing said, “Oh, I think I will solve my problems by sinking that long knife into my chest,” but the reality was that the image was firmly in her mind and her will was being enacted in order to refrain from doing that very thing. She was horrified.

An unseen force was relentlessly telling her to do it, egging her on, but she didn’t want to, not really. She wanted to run, but there was nowhere to go. There was no where to hide from the voice inside her mind. She was angry with herself. She was so stupid and so pathetic. Why couldn’t she just be normal? Why couldn’t she just do what other girls did? Why was this a big deal? When would she be different? Why was she such a failure? She hated herself. She couldn’t hate herself more than she did right then, except when she thought of how her mom would react when she found her like this.

With that she began to sob uncontrollably.

 

This was the scene in my kitchen on Monday night. The fact that I did not have the reaction my daughter was dreading was good. Truthfully? I never know how I am supposed to react to the fact that my daughter battles weekly, even daily, thoughts of suicide. I don’t know the way a mom is “supposed” to feel about the fact that their child has been battling demons that tell them that ending life is a better choice than fighting through whatever there is to face at any given moment. I don’t know the right way to love my child through pain and torment that only can be experienced and understood from living on the inside of their life.

Her realities aren’t ones I can see nor even understand. Her mind does not allow her to see reality as most of the world out there does. It skews it and distorts it, twisting it in sickening ways that makes me ill just to see from the distance I am forced to keep. I am as close to her as I can be, but I can’t get inside her heart and soul and know her pain more than what she shares. I can’t make it better. I can’t make it go away.

How is a mother supposed to react to that? 

Let me tell you how. WRONG.

Most of the time I get it wrong. Don’t be nice to me and say that I am doing great and that I am doing the best I can. I don’t want to hear it. Sometimes the best you can is just frankly not enough.

I often get mad. I get livid mad. I am not mad at my daughter, but I am mad because she lives with bipolar disorder, OCD, and a host of anxiety disorders dictate more about OUR lives than I want to admit. I can’t change this and it makes me madder than hell. It makes me angry that she can’t just enjoy her life. She is so imprisoned by her mind and her mental illness that I am angry. It affects everything she does.

I don’t always say the right things. She needs to hear “it’s OK” one more time, and I am tired of saying it. Not because I don’t feel it’s OK, not because I don’t care, but because I am tired of needing to say it. I am tired of her mind telling her a lie that requires me to do battle with it daily.

I get impatient, irritable, frustrated and fragmented. I am tired, stressed, sad and alone. Most of the daily routine and battle against her mind falls to me. It is wearying. She feels responsible for this and she adds stress upon herself for this, guilt and anger of her own. It’s a vicious cycle. We both understand it and we talk about it.

I apologize a LOT. I flat out tell her I don’t know what the hell I am doing. I tell her I love her, that I do know, but that’s all I know. I tell her I don’t know how to love her through the pain the right way, but I love her. She gets it. She somehow manages to understand me. She somehow knows in her heart I am trying. And I am. I’m just not doing a good enough job. I’m not.

How do you ever get used to having a child who battles a demon inside that says that suicide is a good option? At the age of 10 she gave it her first real try and it scared the hell out of me. She’d been talking about it since she was 7. She’d shown signs of issues and problems and we’d been in and out of counseling since she was 6. We did everything “right” and still we didn’t have a plan that was helping her, so she tried to end the pain. Now at 15 we have been at this more than half her life and somehow I am no pro, nor old hat, at handling it. In fact, I still sometimes wish I could wake up one day and it would all just be over.

There are days I lay facedown on my bed and sob into the feathered duvet, screaming at God that I’m not strong enough to do this anymore. I’m not strong enough to be her mom. What if I screw up? What if one day I get it wrong and she acts upon this demon of hers. No one will see a mom who tried so hard for half her daughter’s life; they will see that I failed on one random day when push came to shove and she couldn’t hold the demon at bay. They will see that no one was there for her. They won’t see years of trial, pain, torments; successes, victories and massive strides made. They will see the failure. They will see the death.

I live in fear of failure. Not because failure is bad in and of itself, but because failure isn’t an OPTION.

Do you see? Failing means I lose my baby. It means she’s dead and there was no better way out she could find. It could be as simple as I had the reaction she was dreading. A look on my face or word from my mouth that confirmed (in her mind) that she wasn’t worth it. That I was tired of HER, not just tired. That it was HER I hate, not the disease. If I get that wrong, even once…

This is real life here… One with no answers. This is what life behind my front door looks like. It’s raw, it’s real and it’s a hidden life that I don’t live alone.

There are many faces that you pass in the store or on the street that hide lives that live in fear of failure. Lives that are touched by mental illness. I am grateful for my network of support. Living without it is not an option.

If you or someone you love needs support, please get it.  Here is a link to some here in Fort Wayne:  http://www.nami.org.

I don’t have answers, but I can be real. Know that, while I will still share my silliness (like a week where a squirrel decided to move in with us because he mistook ours for NUT house versus a nuthouse…https://ditchingthemasks.com/2014/01/20/mistaken-for-a-nut-house/) I will still keep it honest here.  My guess is that is what someone needs.

Laughter is good. Honesty, needed. Prayers, crucial.

 

This blog, to anyone who questions, were written with full permission from my daughter. She and I are beginning a blogging venture where we will be blogging through the reality and pain from her eye and mine. My hope is that we will give hope and a needed look at reality to what is often an invisible battle waged in homes across the country, and worldwide. We are hoping to be “real “and open an honest dialog. Mental illness is not just school shootings and tragedy. It’s daily life on multiple fronts – including some amazing highs and powerful successes mixed in with the lows.

 

 

 

Breathing is NOT optional


Good heavens. Some days I forget that breathing is NOT optional.

I get overwhelmed some in life. “Some” being a gross understatement, and one to which my dear husband would roll his eyes at. I woke up today remembering that it was family “vacation” week… meaning Hubs/Dad doesn’t have to work third shift. I smiled and rolled over and greeted his morning mug with a kiss. Then I remembered that I had a deadline to meet for my editor, before noon, and fifty thousand other racing reminders quickly flowed in next. I held my breath and didn’t even realize it.

The article was a no brainer. I love doing them, and this one would be easy-pachiesie. All I had to do was turn my motherhood-insanity into a 500 word reality on paper, throwing in a splash of hope, determinism, and maybe a smile or laugh. The rest on my list? Yeah, I’d need to re-read my advice and take it for once!

My daughter, nearing 13, came up to me, glancing at the “MOM is on DEADLINE” note and deciding this was worth disturbing me over. She told me she had been listening to music and came across one that she really loved. It really meant something to her. She said it kinda shy and with an offer of, “do you want to see it?”

It was called, “Just keep breathing.” Hmmm, sounds like one I need to “see”.

It takes some getting used to, but now days, kids often first “see” music while hearing it. Its a YouTube generation.

But with my daughter Allison, she really understands the song if she sees it on a video with the words keeping time to the song. She struggles with ADHD, and while she is not a behavioral sufferer with it, her attention and ability to take information in is a struggle for her. Coupled with her Dyslexia, she’s had a hard road this last year.

It reminds her of what she tries to say to herself when she’s not at the ranch. She volunteers at a local horse ranch, http://www.daretodreamyouthranch.org,

Alli leading a therapy horse named Joe during a week of Autism Camp.

Alli leading a therapy horse named Joe during a week of Autism Camp.

that rescues horses and then trains them to minister to the youth of the area. They actually are giving therapy horses to kids who need it… Because they are fully donation supported. They do not charge families who come to the ranch. They have a huge heart and its grown Alli’s soul by an astounding amount.

The best part for Alli is the way the ranch partners with other organizations such as the Autism group and puts on Autism camps for weeks during the summer months. Or how rhey have kids who are in any way touched by cancer to come out and be refreshed and ride with like minded families who understand their exact life struggles.

Out there, she says she can BREATHE. I think it is as much a ministry to her as it is for her to be there ministering to the kids and working with the horses.

So she showed me the song that is weaving itself into her heart. It’s actually reminding her to breathe, and in turn, reminding me to breathe.

Take a moment… watch and listen… and remember, it’s just life. No matter what gets done/goes wrong/doesn’t get done/or does not go right… we will all reach the end of this life at the exact same time we were supposed to. We dont know when that will day will be when breathing is NOT required. While it is, take time to DO it.

Call a friend, grab coffee, plan an afternoon out, go hide in a cubby hole in the library and veg out, and don’t feel guilty for it. The world will keep spinning, and we WILL make it through.

What? We CAN’T eat our young??


polar-bear-5-paul-nicklen-ngsI think it is completely unfair that humans are a species that frowns upon mothers eating their young. I understand those fed up Momma’s-with-the-munchies who say, “nope, this kid’s just one too many for my sanity,” or, “THIS one pushes me too far too often.” Now listen, don’t go all high and mighty on me and assume I am a crazy off-her-rocker kinda Momma. I’m not advocating abuse here… and YES, I love my kids like words cant express. But, that said, there ARE days when… Well, I wont make Mother-of-the- Year. I’ll give you that.

Have you ever had one of those days where anything that can go wrong DID, and just when you thought you’d caught a second wind and a little smidgen of peace it all fell apart AGAIN. This is where parenting goes from really hard, to borderline-crossing, to crossing all the way from one species to another. If you’ve been a parent for oh, say… a week, you probably have enough fodder for a serious melt down day.

Can I be brutally honest? My mom lied to me. She did. So did every other woman who had children before me. Not a single one told me how hard it was going to be to be a Mom. Nobody. They never told me there would be days where I would want to run away because I had no idea what I was doing, that the kids would refuse to fall into rank and would form a coup, often, and that no matter how hard I tried, I’d never be able to get ahead of the laundry pile, the dishes, nor fall into bed at an hour that would allow me to feel like I HADN’T, in fact, been run over by a MAC truck.

Many told me how fast it will go, meaning the years, and the years DO fly by… but the days, the days are long and the nights longer (if your children are but babes in arms!) I don’t want to miss a second of it, and yet there are times I want to run away. I’m just so tired! Know what I mean? I’ll come back, I will, but I just need to run for a minute. Run free, with no one saying, “Hey Mommy, Mom, Momma, Mommy…”

imagesI’m not alone. I can’t be. Honestly, tell me, doesn’t Candied-Campbell-kids sounds swwwweeeeeeet? Oh yeah, right… sigh… we don’t snack on our brat-packs. Well, lucky for my brood I am easily bribed with chocolate. Heck, I’m bribed with a handful of forgotten M&M’s from the bottom of my purse – and THAT is good for everyone.

All kidding aside, Motherhood is hard. There’s no “do-overs” in our job. It’s also the most rewarding job we’ll ever hold. One sweet sticky smile and I was hooked. I wouldn’t trade it for anything. Not really. Not even for an obscene amount of FRESH chocolate.

(This was first printed in the MOMs.fortwaye.com printed bi-monthly edition for May-June 2013)

Added for additional information and your learning enjoyment – here are a few animals who DO eat those yapping and annoying offspring!

The polar bear. Yes, they are cute and cuddly – what baby bear isn’t cuddly? The adult polar bears will definitely have a go at eating one of their own babies. Given their natural predatory instinct, eating its own baby probably isn’t that unusual at all.

wolf-desktopThe wolf. Wild dogs are predators, too, and have been known to kill a variety of other, much smaller animals just for food. Just like the polar bear, the wolf will consume its young if given the chance.

The hyena. Native to Africa and Asia, this animal, known for making a laughing sound, is a vicious predator, and will consume the entire kill, including any bones. Well, at least the hyena gets points for neatness and not leaving the remains of dead animals hanging around to attract the maggots. But this guy will eat his own offspring too.

The hippopotamus. This large partial water animal is native to Africa. Related to the whale, the hippo also lived in Europe right before the last Ice Age. Usually portrayed as cute animals, the hippo has another thing that is not very cute: canine teeth that measure twenty inches long and slightly more.(3) Maybe the hippo is not perceived to be an eater of its own because it is an herbivore, but given the chance, an adult hippo will indeed eat its young. Don’t let the hippo’s external appearance fool you: this animal has powerful jaws, can outrun a human with no problem, and can cause immense damage to anyone if provoked.

1. http://www.livescience.com/animals/080206-cannibal-parents.html

2. http://www.huffingtonpost.com/olivia-zaleski/veras-cub-why-some-moth_b_81146.html

3. http://www.thebigzoo.com/Animals/Hippopotamus.asp

(As listed on http://voices.yahoo.com/animals-eat-their-own-young-2689128.html)

Stop the world, WE are getting OFF…


The past week had been so trying, so mentally exhausting, so physically taxing, that it had left me not only in tears, but on the edge of even being able to cope.  I was so over the edge that i was shaky and beginning to show signs of stress in my weak points, my headaches and body tension and pain.  Those sent me over the top.

My husband saw this.  He saw ME.  He did something.

He searched and found a song I had never heard, yet described my life, my pain, my challenges, our life together.  I was rushing around on a day where there was not even 15 minutes between all the scheduled things on the day’s calendar from morning 5:45am wake up till I would fall into a bed at 11pm that night.

dancing_couple-green-lgI was near tears and rushing about the house when my husband gently took me by the hand into our bedroom and shut the door.  He laid his phone on the dresser, pushed play, held out his hand, and asked me to dance.  I melted.  The tears came even before I had been fully embraced in his strong arms.

I had not much left in me, but he led me in a slow and gentle rock that melded us together so closely I’d swear our hearts began to keep rhythm in time.  My head on his shoulder, nestled under his chin, I began to let the world slip away.  There was nothing but the two of us.  My eyes were closed and my tears were flowing, and the only thing in the world was the two of us, together, no longer in the world at all.  We hovered somewhere a step above it.

The dog pushed his way into the room, the kids were loud, the song had ended.  I stood in his embrace still.  I broke away for only a second as I shut the door again, and asked for the song again.  I wasn’t ready to step back into reality yet.  I needed more of this wonderful man and his embrace, his love, his strength, and his arms wrapped around me protectively.  The world could not snatch me from him.  I was safe.

As the song came to an end, I felt ready to keep going.  I could finish the night. I got myself ready to leave the house and as I drove off a few minutes later I was grinning to myself and knowing that beyond a doubt, I was the most blessed woman around.

Thank you, God, for giving me such a wonderful and Godly husband.

Thank you, Derek, for loving me in the way I need loved, finding a way to reach down into my pit, my darkness, my overwhelmed frenzied days and plucking me from the grasp of it all.  Thank you for seeing me.  I love you!