Chiari Malformation


Angry Brain. Creates nasty Headache. Herniating cerebellar tonsils.

Chiari Malformation September 1st

Very rarely do I lose my cool in public, but the day I was told that I had Chiari Malformation I and I would need brain surgery I flipped out.  I called my mom, barely able to compose words through gushing, hopeless sobs.  I drove to my sister’s house and cried for three days.  I have been known to be reactive at times, but this was a complete shock to me and I have never felt so scared of a word I could barely spell.

Basically, my cerebellar tonsils herniated through my foramen magnum into my neck and was compressing my brain stem.  Or, my brain fell out and made a big owie where my head and neck meet.  I only found out I had it because after a car accident I was having problems.  A year later these headaches started popping up and from there steadily became worse.  As they worsened, my memory left, my bladder lost its mind, and I lost my emotional filter that allowed me to bottle up my emotions.

My job and just about everything about my life would either disappear or change after the surgery.  I assumed I would get better.  I thought I was getting better.  Then, I began losing strength, words, balance.  Over the past five years I have been living a reality that I didn’t even know was possible.  It has changed the very fiber of who I am and while I long for the Before Time, I can only move forward.

Welcome to Chiari Conversations, and if it is your first time joining me, check out some of the older stuff.  September is recognized as Chiari Awareness month and every year I try to do something everyday to spread awareness.  Last year I think it was make a video everyday, but this year I will be focusing on my comic content.  While I have better artistic skills, I chose a stick figure to represent myself because my world seemed so limited after my surgery and people would say crazy things to me and I often envisioned myself as a stick figure in a ridiculous comic.  As if this situation in no way reflects reality, but the absurd part is that it does.  People have rudimentary ideas about illness, pain, mental illness, and they are certainly not afraid to share them!

In all of this time (ok, only like two years) I have learned that this is just a good way for me to express my conversations, frustrations, dreams, hopes, and I hope it shows.  I hope you join me for the month as I will release a post everyday detailing my problems with Chiari and its related issues.  I hope you get a laugh and learn a thing.

If you want to learn more about Chiari Malformation and Syringomyelia (its evil cousin) please visit Bobby Jones CSF and look around their site for very useful information.  Every year I help by volunteering to do their unite@night walk to help raise awareness and funds for research.

If you want to read my journey with Chiari, read The Life Of A Music Monkey although it can get pretty real over there, it is usually funny or at the least informative (usually).

If you want a comfy pillow check out Chimera Pillow and see the wonderful, omnipositional pillow that has an ice/heat gel pack and makes planes bearable (for me, at least).  I am the SpokesMichelle and a blogger on their site, both are volunteer.  The company is small, but it isn’t just about the pillows, it’s about spreading awareness and educating people.

Lies I tell Myself: VIII



Lies I tell myself “I can climb three flights of stairs…”

I have spent a lifetime being active and while I have never done a proper pushup, I have always loved climbing.  Stairs, furniture, mountains, vehicles were all game.  There is a part of me inside that I call “Michelle Unlimited” or MU and she is unaware that I have lost the physical ability to do a lot of things.  She also forgets that things are hot or weigh too much.

MU still likes to do all of the things and I suffer for it.  In the MU mindset, I began shoveling out front and pulling up sprinkler lines.  I think spent two days recovering because I am not supposed to be shoveling dirt in the sun OR doing any type of landscape work.  As soon as I felt better, I tried to dig up a bush for transplant but was caught before I could really get anything done.  Of course I know better, but somehow in the heat of the moment I am able to convince myself that I will be fine if I just use proper form or drink water or whatever lie I am willing to believe so I can feel like my old self again.

One area that I seem to struggle with is stairs.  I grew up in a house with stairs and lived in one for a good portion of my life.  My apartments were upstairs, office is upstairs, everything I like is upstairs.  However, stairs are not the friends they used to be.

MU does not care.

Using a cane has made stairs even more of an issue because my natural inclination is to take the stairs and it’s just getting more difficult because I am tired.  It is a ‘tired’ that is becoming all consuming and I feel like I am drowning in reality.  The stairs seem to make things real, but I am more often floating up a building in the elevator now because I lack the strength to get up the stairs safely and I then have to take a few minutes and bring my heart rate down.

I keep telling myself that I can do it, but I just can’t right now.  Since I now travel with someone else, I am usually corralled to the elevator so that I won’t make the attempt at the stairs.  We know that my seizures seem to be aggravated by activity and the more strenuous the worse the seizures.   It is a little upsetting when something as simple as stairs is taken away and what used to just be useful architecture is now a barrier.  A thing that once held no meaning now represents a failure of my body.

Of course this is something that I am dealing with in therapy and I am trying to stop letting ability of my body and mind define who I am and dictate what I can accomplish.  Reading back over this I am telling myself that it is ok to be upset about losing some ability, but the focus should really be put back into how do I overcome or compensate for this?  I obviously can take elevators.  I realize that I am blessed to be in a city with the strictest building codes, so access for disability is almost everywhere.  I have the tools at home to maybe work a little harder to build up my strength to get up and down stairs, but until I go see the cardiologist, I will just take it easy.  If there is an issue, we have to figure it out first, and honestly, not having to walk up stairs is something that in time, I will get used to if it comes to that.

So much of this journey is having hope but being reasonable if everything goes wrong.  Having a belief system that I consistently study and read and having a support system that is large and loving is what keeps me going.  My family has known for months that I am getting slower and slower on the stairs, now I literally have to sneak up stairs if I want to walk up some.  The only stairs we have at home now lead into the pool or spa and I am not allowed to use either of those without someone there…and I need help getting up the stairs as there is no railing.  (Our pool was built for fun, not children or the disabilities that would later come.)

Maybe for a while I will just tell myself that I can take the stairs but I choose to take the elevator.  Then it feels like my choice, and sometimes the feeling is what gets me through the hard times.  MU just has to find a less energetic way of being awesome.

The Pain Is Everywhere

This is a point in my journey I could not have predicted. I have never considerd myself a “happy” person, but I have always felt that I had some direction and motivation.  

The loss of my job, my memory, and some of my higher functioning has left me feeling robbed.  Chiari has stolen the things about myself that made me feel like my life had value to me or made me feel valuable.  

The hard part is staying transparent.  I began this journey so that those who came behind me would have a record of the trials I faced in case theit situation was similar to my own.  

I have a complicated history that involves some childhood horrors and now I have lost my coping mechanisms (work, work, work, work, work).  So, at my neuropsych evaluation it was recommended that I go into long-term therapy with a PhD level psychologist because now I have to work through my current life change and wade through my past so it can be fixed.  

That sounds reasonable.  Still, on the inside it drives me into an anxiety attack just thinking about it.  I don’t want to re-live that part of my life, but in a way I already am.  I feel just as trapped and hopeless as I did when I was a child, but with the added bonus of having my own child and remembering independence. 

Slowly, the enjoynents of my life are fading.  I am checking in less often.  The neuropsych eval stated that my intelligence surpasses 99% of people in my age range.  At times, I have the clarity to see that I am severly depressed and I am getting worse quickly.  I recognize the trail of red flags that my mind is desperately flinging all over, anywhere someone will look.  

That is why I have chosen to keep my battle as public as possible (without incriminating anyone or tarnishing anyone’s reputation) because it is time to stop being ashamed.  We are not ashamed of diabetes, heart disease, stroke, broken bones, or any other health problem.  We should not be ashamed if our brains aren’t functioning well either.  

So, this is why there have not been any updates.  I haven’t cared enough to do any.  I have barely cared enough to get up every day and pretend like I want to be here.  I hope that as I go through treatment, this cartoon with flourish and once again be what I created it to be.  A mockery of the crazy things people aay to me.