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. 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Lately, however, I have been sporting far less of my kick-ass self and far more of my withdrawn and pathetic sister-self.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.
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.
My 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.
I have a confession to make. Actually it’s a confession on an obsessive addiction. You know you want to know more. I KNOW you do. You are wondering even now what the heck I could mean! Jump over with me to my “chocolate” blog and read more about it. Maybe you can find a vice as colorful as mine!
It beats the heck out of dealing with stress the usual way! That’s for sure!
http://moms.fortwayne.com/?q=blogs%2Fpost%2Fnostalgia-nose-how-beat-stress <——————click here!
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.
There’s NO way Mom’s are allowed to get sick. Ever. Right? It’s just the way it is.
Imagine my surprise when I got a bad case of bronchitis and NO ONE DIED while I was down and out and somehow the house stood up to the onslaught and so did the family! Join me over at the MOM’s blog for a funny look at the realities of being a parent and battling illnesses. Reality is ever changing when you’re a parent!
Sometimes in life, even though you know better, you hunker down for a long… slow… sulk; because, darn it, well… you DESERVE to! After all – who would blame you, right? The circumstances (insert your own set of whatevers here) just call for a little down time, and no one would blame you for feeling down at all. True enough. I’ll nod along with you. I have to, because that’s just what I did today. But God? He had other plans besides that slow sulk. He usually does.
Today I went to the dentist for some repair work. I have been doing battle with my genetics since I was a teen when I received some damage to my enamel from braces I had. It was no one’s fault; my teeth were just sensitive to the glue used and I then began cavities everywhere there had been glue. Jump ahead to this month, I am sporting a mouth full of root canals, caps, fillings, and a very large 6-tooth-bridge that spans the width of my smile. The bridge is as wide as my smile is. This is not the type of thing they (dentists) prefer to do. It’s a large bridge and a LOT of teeth. Since it is my entire front smile, it was not possible to break it up into smaller sections that were more stable. It would be obvious. The thinking was to save as many real teeth as we could, and I didn’t want to wake up without teeth in my 30’s and have to instead “put them in,” yet, so that’s what we did 5 years ago. We essentially bought me a shinny new smile.
Jumping to today, I have a wiggly bridge (no bridge is sposed to be wiggly, but most especially not one that involves teeth). The post that anchored the right side has broken and needs repaired. It sounds very simple till it’s explained with a serious expression upon the face of my dentist. Drilling through the bridge = a large risk of damage or breakage of the bridge. Remove it to fix the problem and re-glue it = risk of breaking it in half. The later seemed more of a better shot than the first. Grudgingly I agreed to give it a whirl. We (meaning the good doc) tried to take it out, but it wouldn’t budge. Not cool. We now wait to see if we can loosen it more naturally with a few weeks of wait-and-see-time and hope for the best. If not, we wait longer and then try to fix it and cross our fingers, toes, (and eyes if you can). If it breaks, however? I am out a bridge (aka TEETH) and have no back up set. No way to purchase a new set. It feels like a huge deal. Like the end of the world. In my head I know it’s not, though I am fully sulking anyway. I want teeth, and for more reasons than just eating. I leave in a sour mood knowing lots more smashed bananas are in my future. I’m told no hard food till it’s fixed. I am soooo done with smashed food!
Sulking, I stop by the little grocery on the corner on my way home. My head is down and I’m mumbling to myself. I get to the checkout with my milk, bread, and yes, more bananas, and I’m wearing that “Poor Me” shirt proudly for all to see. An older gentleman is in front of me and lays out his weeks worth of meager groceries. I can tell that’s what it is just by looking. All I think is that it’s nice I wont have to wait long to check out. That’s all until his food stamp card is declined not once, not twice, but three times.
By the third time God was already screaming at me so loud I was deafened. He was clearly embarrassed and ashamed and he took the items, offering in broken english to go put them away for the cashier. She waved him off saying no, she would do it. She was shy and also clearly embarrassed for him. I quickly stepped up to her and asked her to add his bill to my waiting items before he could move away too far. While I had been mumbling about eating smashed bananas, this man couldn’t even BUY bananas. How selfish was I? Nothing like a reality check to humble you and bring a bit of perspective. I tried to make the man understand that I wanted him to have his food. He was sure he wasn’t understanding my english well enough. He waved me off. I assured him I meant it. His look of shock was enough to make a lump form in my throat. While I wasn’t sure how God planned to cover the extra $39.47 I had not planned to spend so far from payday, I was sure I knew he needed it far more than I did at that moment. But If God had his bill covered long before he walked into buy his groceries, I knew He also had my means covered to provide it. One thing you can always be sure of is that God ALWAYS has a plan, and it is ALWAYS PERFECT and on time. Rarely early, never late, but ALWAYS perfect for the moment.
In the midst of my long, slow, sulk God showed me that I had a lot to be grateful for.