The coach benched me


IMG_2248This week has reared up and bitten me in the butt. The weather and the pressure fronts are to blame, mostly, and I’ve tried hard not to be insufferable to live with, but I am not the do-nothing type. I don’t do down time well. Living with an invisible chronic illness really stinks. A lot.

We all basically forget I have this thing. I have weeks and even months at a time that are good and I have virtually no issues that force me all the way down. We all get used to me doing all the mom things, doing all the this and thats, driving the mom taxi, running the errands, making dinners and cleaning house. Then a front will move through and weather will sneak up and it will bring with it a particular brand of harshness that seeps into my bones and changes me from the inside out.

I have something called Chiari Malformation. It’s a fancy name for “Squished brain” because my brain is too big to fit into my skull and it squishes down into the brain stem, causing nerve issues and pain galore. There is a day-to-day factor of this thing I live with, but mostly it’s livable. In general no one would know I have an issue. When these pressure fronts move in, however, things change. I’m sidelined, taken out of the game, subs put in.

This week my family got their reminder because the coach had to play them. I’ve been benched and the couch is where I’m doing all my parenting and have-to’s from. It stinks. They’ve really stepped it up this week, however, and I have to say I’m really proud of them. In spite of why I am seeing it all, it’s nice to know that they can take over and keep things going, doing the cooking and the chores, getting gone what needs done, and doing it all without a single complaint.

Thanks guys. When a mom is sidelined, it’s really hard. Knowing that things won’t fall apart and that you’ve got it covered really does ease the pain more than you’ll ever know.

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Beyond backstage – the unseen hurdles and what this play means REALLY


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The finished set of “The Savannah Disputation” – 2015

A couple of years ago, I came out of a motherhood-induced-hiatus and stepped back onto the stage again. I’d written and directed and been in plenty of church skits, silly sketches, and dabbled with doing drama at retreats, but I hadn’t been on a REAL stage for an actual play, in 17 years and there is a very distinct difference.

I assumed the dream of doing theater was dead. I didn’t see how I’d be able to do it again. It wasn’t because of motherhood, nor of schedules or the like. The reason wasn’t even the physical issues associated with my Chiari Malformation (where my brain tissue does not fit into my skull correctly and instead herniates into the brain stem, creating challenging issues and pain; to put it neatly) No, the obstacle was tied into my seeking help with Chiari pain management and how I was overmedicated and medically abused.

After being diagnosed, I chose not to do the surgery where they remove a part of the skull at the base and relieve the pressure, kinda like unbuckling a belt after Thanksgiving dinner. It was risky and I was told I had an 80% chance of walking out the same or worse than I walked into surgery. Every case of Chiari is different. Mine was not a good match for a “fix” and, sorry, but my kids were really young at the time, and I couldn’t afford to be worse than I already was. So I instead sought out a pain management clinic. A friend of mine, who also lives in chronic pain, gave me the name of her doctor and I made the call.

Long story short? The doctor (term I use LOOSELY) nearly killed me.

Luckily for me my own family doctor, who is my hero, as well as my fully involved family who loved me, took me to Indy, helped me get out of his clutches and saved my life. I was close to deathly overmedicated and at one point I actually questioned how much longer I had. Would I be here to raise my kids? I begged God one night to answer “yes” I’d be there for them. I didn’t tie Him to my ways of “being there” – but instead asked that he restore me – let them have a mom who the not only need, but let them know ME – the real ME – the one HE created once, and I no longer was. I wanted to somehow have that vivacious, courageous, spunky, bubbly, goofy, spitfire there for my girls to roll their eyes at and my son to be embarrassed by.

It was a long hard year when I began to get clean. I was one of those red ribbon “Just say NO to drugs” kids.  I’d never tried a single drug over Tylenol in my life. Then suddenly I was on all these hard drugs, muscle relaxers, and pain pills. I had every one of the most stolen and desired prescription drugs in my medicine lock box… All legally and completely hooked. My body was a mess. I had body tremors that came randomly and my arm or leg would even jerk and move on their own, waking me from sleep. I was a mess.

I detoxed one drug at a time, hiding for long periods in the bedroom so I could do the ugly stuff alone, out of my kid’s sight. I thought when I finally came off the drugs, and I was back on track with some management that was SAFE for me, that I’d be out of the clutches of this mess.  Then I realized… I had brain damage.

Yeah, the memory issues I had on the drugs were bad, but they didn’t go away. I had lost my ability to drive longer than 20-30 minutes tops in any given stretch. My brain can’t concentrate in intense periods for longer. It will shut down and I have a tendency to suddenly jolt to “consciousness” and realize I’m driving when my brain lapses.

I now had serious trouble with short term memory. I could no longer depend on remembering I’d even heard a conversation. Everything had to go into the long term memory, or be written down and reminders popping up on the phone for me to have a chance to retain it and show up to places and do things.

IMG_0097All that to say, while romping on the stage had always been a dream, it was never one I thought I could ever do again with any kind of success. How would I ever remember lines?  There was no way.  I struggled the first few shows to remember my 2-15 lines. I was trying to put them into my memory the way I always had.. and those methods didn’t work anymore for me.

IMG_0259I had a few moments of panic and freaking out, I’ll admit it. I was sure I’d never be able to do it. My family listened, but encouraged me anyway. My friends told me to shut the heck up and just go be AMAZING. I found little notes in my script that made me feel like I was no longer doing this for me… maybe I was doing it for us all… my kids needed to see me succeed. They needed to know that stress can good, not just not something to avoid; even thrive under.

I refused to give into it. Otherwise it was like I was letting this doctor steal a part of my soul, not just have robbed me of years of my life, and of quality.  I am a heck of a lot more stubborn than that!

I told my family all I wanted for Christmas was the chance to do this show with their support. I had won a role in a four person cast, with some amazingly talented actors. Every night was like taking a college class in acting.

IMG_0613My hidden fear, however, was that I’d fail them all. I was increasingly worried when the words wouldn’t come, wouldn’t stick. It’s always a struggle to get the words to stick. Now? I wondered just how much brain damage there was. Could I do it at all? Again, a few key friends told me to SHUT UP AND GO STUDY. I may not have believed in myself, but everyone else did.

Could I still do this? Could I be who I always wanted to be? Could I step back on stage and really be any good? YES… I can. I know that now. I overcame the limitations and while I may never forget these lines as they have been placed in a crazy hard longterm spot, well, maybe that means I wont forget them when I’m on stage! Ha!

We open tonight. The first of three weekends of shows will begin in just a few hours. I am excited, but not just because I am 40, finally back on track to live my dreams and enjoy my passions… but because I overcame a massive life obstacle, kicked my way through some pretty hard crap, and will get to romp across the stage, holler, smirk, laugh, and undoubtedly, have the time of my life.

What dream have you given up on? What refuses to die inside of you, or nags you? Maybe 2015 is the year to decide what controls you, what control you have, and how to change the balance of power. Be amazing. I know you can!

To hear the director chat about the upcoming show, check out this link: http://wboi.org/post/disputation-takes-comic-look-lines-divide-faithful

Pain is meant to be felt. It means something


picI was going along, minding my own business, attending meetings, a family gathering for a final Thanksgiving meal, birthday celebrations for my husband and daughter, and working on a plethora of stuff when, BOOM! Suddenly the world came to a halt.

Getting up from the chair I had sat in to enjoy my beautiful turkey coma sent a stabbing knife through my side that took my breath away. A few more steps, more pain. Not muscular pain like a pulled muscle, or how it feels when you throw your back out, but something deep inside of me. A place that muscles don’t move and I couldn’t put my hand on to ease the sharp pains repeatedly that came wave after wave.

I explained it away for a few hours, as they came and went. I went to bed and tried to relax.  I was starting to fall asleep when suddenly I straight up with a pain that was undeniable. I’d had this before. Four times in fact.

“Oh please, God, no.  Not this. Please no.” I said aloud as my husband put his hand to my back and wished he could do something.  With that began a long battle of kidney stone vs the tiny passageway to my bladder, wherein I would finally rid myself of this beast of a demon rock.

Sorry, “stone” is a sweet round little pebble of a thing. Mine are built like torture devices with wicked barbs that hang off each side, mean and vicious, tearing up my insides the whole way down. I christen them “demon rocks” from here forth.

Thus began the battle that would steal away all my holiday ugly-sweater and white-elephant parties. It would steal away time for work and for doing normal mom things. It would steal away my sanity!

My kids can’t handle seeing me in pain. They worry and stress.  Such is the life of a kid who knows their mom has a real health issue that has held her captive in the past. I have an invisible illness stemming from my brain. It is too big for my skull and the squished part herniates into the brainstem. It’s called Chiari Malformation. This can not be fixed or cured. There is a surgery to ease the stress of the “squeeze” but unless you cut off the “extra” brain, it’s a problem. Usually cutting off pieces of the brain is not something you choose to do unless life is unlivable. So around here, the worry crops up in a way maybe other kids would let breeze over them. I made a mental note that no matter how bad it got, I needed to be the mom they needed me to be.

I would not give into a little piece of demon rock.  No way.

So I curled up on the couch and took medicine to help ease the pains, watched movies with my son who needed to snuggle because I was in pain. I laughed and chatted with my daughter about her day at school and listened long into the night when there were things that needed to be heard again later. I was on the same big red couch for my oldest daughter to come have a much needed heart to heart. There were times she was in mental pain, dealing with her bipolar, and it made my pain manageable. I wanted to take hers away, and I couldn’t.

It’s hard to put into words, but I somehow felt like bearing this one silently gave me more power, strength, and peace. Life is hard enough around our house without adding to it with physical ailments. No one wants to have me down again. Cant have me down. Those were hard days and the kids really sense them when they come now. That feels good and overwhelmingly bad to me. I hate that they know the hard things so well. I really hate that. I appreciate that they are so intuitive and sensitive and caring kids.

So this literal pain in my side made me feel like I could do it one more day and I dug into it and really rolled with it, and didn’t let it overwhelm me like in times past. It may help that it was passable too!  I’ve had surgeries for them when they block vs pass. I focused on the pain being a GOOD thing – a no SURGERY thing. Pain equalled a blessing.

I’m rambling, but I really felt something strong through this unexpected detour. Pain is meant to be felt. It has a message. A story, a purpose. It’s not always a thing to be loathed and avoided. It can build a person, and it can define a person. I refused to allow it to define me.

It was simply passing through. Life would go on. And it did. I even had some quality time with the kids.  🙂

Yeah, so THIS happened…


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Yep, I sometimes nap in the back of the Soccer-mom-van and I’m proud of myself for doing it too.

I don’t usually fess up to stuff, not when I don’t HAVE to.  I mean, if no one is around, no one was harmed, and it is more than a bit embarrassing, why bother? What happens between Me, Myself, and I , frankly, should stay that way. Who NEEDS to know that stuff?  For whatever reason, I have this burning need to be truthful. So even though it’s none of your business, I’ll let you in on a little tidbit of ridiculousness. There have been many days that have been hard lately, and somedays are harder than others.  There are times that in the process of doing my day, I’ll feel like I need two naps to get through it. Other times I am fine. It’s not a big deal. When the naps sneak up on me, or the NEED for one, I always obey them. It’s an agreement I made with myself a while ago; to never berate myself for my body’s needs in this, and to just give myself the refresher I need to go about living life as best I can. So I stop what I’m doing and grab a couch, snooze for 30 mins to an hour if needed, then I’m ready to tackle anything. So what happens when the nap sneaks up on me and I’ve been out running errands? I already only go within a 10-15 minute drive from my house. If I HAVE to go further, I have come up with a creative way to do it, I break the drive up into 10-15 minute blocks and run an errand between or stop the car and lean the seat back and give my brain a rest.  This is working. What isn’t working is the sneaky nap needs. I’ve not shared this with anyone, but there have been several times I have taken little short cat naps in the back of the soccer-mom van and then gone about grocery shopping, or driving the rest of the way home. The answer is to not stop going out in case this need arrises. The answer is to get creative and adjust to my changing brain and it’s needs. I refuse to give up living life and being a mom and doing mom-ish kinda stuff, and having my independence. I simply refuse. That said, I don’t dare refuse to listen to my brain when it tells me to catch a catnap, as the dropsy – falling while awake feeling signaling that the body is falling asleep while awake –  means “behave or disaster.”  Doing the dropsy behind a wheel isn’t okay. I ALWAYS obey the call to nap. photo 5What’s embarrassing about all this? Well have YOU ever opened up a van door from the backseat, unfolded yourself from it, straightening your clothes, fixing your askew hair, and felt eyes on you wondering what in tarnation you had been up to back there? No, you’ve never done it? Then don’t ask… Cause Me, Myself, and I, we know and it feels downright ridiculous. Trust me. (But it feels way better than an accident or worse.) So I will continue to embarrass myself when needed. There’s always something around here to be humbling me! P.S. Someone needs to make a van seat that leans fully flat or a back bench that is a heck of a lot more comfortable. Just sayin.

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


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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.