Tough Pills

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Chiari A tough pill to swallow.

So, one of the most interesting things I have learned is that while Chiari is not the cause of all of my issues, it makes all of them a little worse.  However, the interesting thing is that until the Chiari became symptomatic, I have very few serious health issues.  I had an injured knee that is still functioning on grace and prayer, I also had the issues with my deviated septum and the fallout of needing my tonsils removed.  Otherwise, I was active, healthy, and living my life.

After the initial diagnosis, I had a few restrictions.  Seventeen days later at the neurosurgeon when the diagnosis was confirmed and surgery was scheduled, we went through a long list of things I would probably never enjoy again.  Here are a few of those things:

  • horseback riding
  • weight lifting
  • climbing
  • kickboxing
  • sing opera

Abysmal!

However, once I began to heal, I began to hope.  I was getting stronger everyday, I got a gym membership.  My memory was failing but I had enough family and technology to keep things together.  Then I started getting weak on my left side and from there, much has gone wrong.

The seizures have the largest impact on my life right now as they are quite uncomfortable and they are the source of the memory outage.  at first the seizures were small enough to where I was beginning to doubt my doctor.  Then my stepdad saw me have one in my sleep, and I had one in the pool a few days later.  Now I was not allowed to swim, drive, shower in the house alone, and a few other things.

Ended up in the ER with pulled muscles from my ribs to my hip on the left side.  The night seizures are violent.  They always end in pain, confusion, and long periods of dead sleep.

How do we come back to Chiari?  The headaches.  When the headaches are worse the seizures are worse.  The motion of the seizures can make the headache worse.  It is a cycle I really don’t wish to see play out.  We cannot say what is causing the seizures until I get my study done and maybe at that time they will be able to figure out what started them.  However, if they can’t, I still have to move forward. So much of what has happened and what is happening aggravates symptoms that I live with almost every day.  My herniating tonsils lead the charge against my body and whatever is left up there is still angry about losing to the while-coats.  I did not realize that people lived in pain until I lived in pain.  It is quite different than any other pain.  I know other pains will go away, even if they are acute or last a few days or weeks.

The headache sits.  At times heavy and at times light.  It is difficult to accept that this might always be how it is.  I may be in that percentage of people who get worse after decompression surgery and it isn’t anyone’s fault, it is just how it turned out.  I have spent the past two years in therapy trying to figure how to accept is and it is truly a ginormous pill to swallow when I have to say that we really have a few words and no idea how they are connected.  I just know that in the end, whatever happen will probably disturb my headache and I won’t like it but I will likely survive (based on my survival of every previous incident).

I hope that if you are going through a process that seems impossible, try to make sure you have really accepted the range of possible outcomes.  It is almost impossible to move on in life when we fight the truth, even when it is painful and it hurts.  In the end, the truth is what it is whether it is accepted or not.  It is harder to deal with a lie and heal and come to a new normal.

Sometimes you will have to open wide, take the life medicine, and drink a LOT of water afterward!

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I Am No Hero!!

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I am no Hero!

Going through the medical dog and pony show has been quite the eyeopener for me.  I now understand things about people in pain that I never even considered.  I also now feel the inconsiderate thoughts and words of others and it can be very alienating.  Some people are mean because they think it is funny, some because they don’t know better.  Some treat me with kid gloves or like I have become a fragile relic, some artifact that reminds people of who I used to be.

Then there are the people who feel like I have overcome some supernatural enemy and I stand in bloody victory waving my banner.  They weave a narrative about how horrible everything became then how it was miraculously transformed and I have earned some type of sainthood for enduring life.  And while I imagine is is great to bask in that feeling, I do not wish to be stuck in my own puffed up head as if I had much to do with surviving my ordeal.

I am no hero.  When they told me that I had to have brain surgery, I sat in the parking lot and wailed as if someone had died.  I called my mom and was in such a worked up state that she had to calm me down before I shouted that I had to have brain surgery.  I hear my daughter gasp.  Mom’s phone was on speaker because she was driving.  My daughter, who was on her way to a performance, had heard me lose my marbles on the phone.  I went to my sister’s house and cried for three days.  Sometimes she sat and cried with me.  Other times, she let me cry in solitude.

Hard to imagine Batman ignoring everything (even my own child) because he was told his brain slipped out of his head and was drooping into his neck.  He has his own source of pain though.  I suppose this is where we differ.  He has turned his pain into a mission and proactively fights crime.  I am good to be making it to my doctor appointments.  While I do some volunteer and advocacy work, I am not fighting for anyone else right now, I am fighting for me.  So that I can have the ability to speak out for other people who don’t have a voice.

Just imagine how awkward it is for someone to tell you that you are brave for living or a hero for living or an amazing person for living.  I feel like that takes away from people who are actually heros.  A firefighter puts his or her life on the line daily to save others from dangerous situations.  THAT is a hero.  Police deal with all sorts of insanity, knowing every day that they leave their house might be their last.  THAT is a hero.  Our service men and women willingly go out onto battlefields and too often come home changed physically, mentally, or emotionally.  THAT IS A HERO.

My neurosurgeon spent 6-8 hours operating on my brain with the full understanding that my entire life was in the care of his highly skilled hands.  HE IS MY HERO!  He got me out of there alive.

Still, I am no hero.  I feel that we shouldn’t use that word so lightly.  If put in my situation, most people would do pretty close to what I have done.  Deal with it day by day.  Try to enjoy the good times. Complain about the bad times.  Really, it is a dull existence that pushes me to want to become a hero of sorts.  I spend a lot of time with doctors, on the phone with insurance and doctors, and scheduling future appointments with doctors.  Not nearly as heroic as it sounds.

Don’t let that fool you though.

I plan to be a hero one day and use my abilities to assist my community.  Then I can accept being called a hero.  Living in pain is a life that many people have and they make it through.  They go through the same things I do, at times more and they aren’t being called heros.  They are often forgotten about.  Some are considered a burden and are made to feel ashamed about their condition.  I just happen to look “normal” and seem “normal” to many people and so I must have overcome some giant hurdle and I am now an inspiration.  I wonder if I am as inspiring when I haven’t taken a shower for two days and my hair looks like a rat’s nest and all I want is coffee and cartoons because my head is killing me.  Am I an inspiration when my attitude is like a fiery cyclone leaving only destruction in my wake?

No.  No I am not.

I do not wish to be.  I want to be Michelle.  A mom.  A minister.  A witty woman.  All of this other stuff that is going on is just me doing the things that I have to do to keep going.  I am not sure how to just give up and that is NOT heroism, it is simple perseverance.  I have to keep going so my daughter has me here to help guide her through life as well as I can.  That is the SAME THING that every mother does no matter her situation.  Sometimes I don’t do as well or go as fast as other parents, but many parents are perfectly healthy and slow.

Life would be easier if we recognized that it is not brave or heroic for going through a medical procedure, it is simply a part of some of our lives.  I would like to feel welcome and loved instead of having to live up to the standard of a hero.  That is too much burden to bear.  I am human and I fail.  I have moments where my faith is wearing thin.  The best are the moments when I can’t control what is coming out of my mouth and I would be considered ANYTHING but a hero.

So, before we celebrate victories we can’t comprehend, let us just treat each other well and be there in the victories and the losses.  Be there when the test results come back and aren’t good or be there in the middle of the night when there a tears of pain overflowing.  You will find a fragile human with issues that is not wearing a cape, but is wrapped in a blanket to help feel comfy.  There will be no soaring through the air, only splayed out on the sofa or bad, trying to stay in a position that feels OK!

While the sentiment is lovely, save it for the people who deserve and earn that title.  I am a fighter who is training to be a hero someday.

My Little Pony

 

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The Post-Decompression Ponytail

Prior to my surgery I cut my hair shorter than normal.  This is a normal high-stress response for me.  The patch of hair they shaved out of the back of my head was huge and it took 8 weeks for the wound to close.  This meant no getting my hair wet for two months.  By the time I got the OK, my head was disgusting.  we tried to keep it combed out but it was just gross from not being properly cleaned.  I shaved off all of my remaining hair and my stepdad cleaned up the areas I had missed.  I had never felt so naked and exposed to the world and with a giant scar!  I often wore a headscarf (which drew a lot of looks from people, like, why is that a problem?!) and I bought a wig and got it cut and dyed to match my hair before the diagnosis.  Now, two years later, my hair is actually blue again (it wasn’t for maybe a year) and it is long enough to put into a reasonably-sized ponytail and that just brightens my day!  Even my friends have commented on my long-lost pony reemerging after spending so long on hiatus.  It’s just nice to feel like my old self in some way.

Check out The Life Of A Music Monkey, a journey into behind the closed doors of Chiari Malformation and my life.

 

 

Smile: Adventure Ahead

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Autonomy, worth, friends, self-esteem, treatment plan, life, love

There are plenty of questions that linger after Chiari Decompression, especially if your life doesn’t return to normal.  My friends often can’t understand that my brain can no longer do the things that it used to be able to, and no amount of believing in myself changes that.  Then I question my autonomy.  Will I be able to be a productive adult for the rest of my life?  Will someone have to keep an eye on my finances and everything else to make sure I don’t become destitute because I can’t remember to pay bills?  What kind of life does that make for me?  Is that a life worth living? What if there is no treatment plan that will take away my symptoms?  Will my friends tire of having a “sick-friend” after a few years?  How will this all affect my self-esteem?  Will I be able to live with myself and not resent this brain of mine?  Will anyone ever be able to love someone like me? What If I deteriorate?  Would it be fair to the other person in 20 years?

Unfortunately, it is easier to ask the difficult questions and languish in self-pity than it is to be bold and confront the new normal with a big smile and only the expectation of adventure.  I am a Christian.  I regularly attend my church.  I am in ministry inside and outside of the church.  I love Jesus, and I believe that all of this is happening for a reason, but that doesn’t mean I don’t think and process life like a human.  I particularly deal in grief and the grieving in ministry and it has given me a much wider perspective about what I am going through.

I have lost a lot of my life and I am sad about it.  Of course I have days where I am overcome by the magnitude of how different I have become.  And -this- is what people don’t understand: I am fundamentally different than I was before my head was opened.  I don’t even think like I used to, but I have memories of thinking and being a certain way.  My emotions are foreign invaders which have occupied my mind and now everything is filtered through them.  My drive to accomplish and accumulate had turned into a drive to love people and give away what little I have.  And this is just the beginning of the changes brought about by Chiari and the surgery.

So, when I feel sad, I try to find someone that I can help, so that I am not focusing on my own problems.  When I can’t remember my worth, I study the Bible and I am reminded that Jesus died for my sins.  When I wonder if I will be able to take care of myself, I remember that I have a loving family that always keeps my best interests at heart.  I may have to deal with pain and uncertainty, but I will try to do it with a smile and the expectation of adventure a little more.

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“I can’t believe it’s been a whole year!  I just got a promotion, what have you been doing?”                                     “Surviving!”

The world at large does not have a thorough understanding of recovering from brain surgery.  While their lives breeze by marked by accomplishments and milestones, my days are monotonous and almost indistinguishable from one another.  My memory started fading over a year ago, and I only have vague recollections of what has been going on in my life.  I have not achieved anything, and it makes for very awkward conversations.

Dreaming…

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Dreaming the dream!

Life is full of dreams.  They change and mature as we grow and sometimes when we are on the cusp of achievement, the dream dies.  I felt this way last year when my doctor told me I would need brain surgery.  Everything that I had worked for was snatched from my hand and I was left with what felt like nothing.  I could no longer sing arias or even hold my guitar.  And when I could hold the guitar, my fingers wouldn’t always cooperate.  After surgery, I got a ukulele to help me with retraining my fingers to listen to my brain.  It has been the most comforting item during this period of my life.  When everyone is sleep and I am wide awake, I can sing and play and feel like my voice is still relevant.  I may never go back to school.  I may never perform a solo again.  I may never be what I thought I would be.  I will sing though, and I will imagine all the people whose hearts I could have touched.

Chiari Dating…

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    “Ooh, Monday afternoon?  Wonderful!!  See you soon!  Bye!”                                          “Sounds like someone has a hot lunch date!”

     
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    “I get to see a neurologist that specializes in memory AND he accepts my insurance!!”

    I have spent the past five years getting surgeries and seeing doctors, first for my sinuses and later for my brain.  I don’t get out much now and I am often just trying to get through the day.  So, when I am able to get a quick appointment with a specialist, it’s probably the highlight of my day.