Tuesday, January 14, 2014

Thoughts on my 1 Year Zipperversary: Chiari Vs. Karma

Jan 23, 2014 will mark my One Year Zipperversary!
Can you believe it?
One year since the brain surgery that altered my anatomy and changed my world drastically.
On the same day, my husband's mother was laid to rest, however, my husband (in agreement-and even the urging of his sisters-) was steadfastly at my side throughout surgery, making certain I heard his voice as soon as he was allowed near me in ICU. 
Since then, we have endured a lengthy recovery..which spanned six long months..a beautiful wedding at the ten week post-op mark and a lovely trip to Paris. 
I've run the gamut of emotions in the past year, or really, I guess since my diagnosis about a year and a half ago. I've delved into research, embedded myself in Chiari, Chiari nutrition, treatments, neurologists, neurosurgeons, meds, you name it..I've read about it, tried it, written about it..chewed it up and spit it out. I've gain friends through this disorder, I've lost friends by the same token. 
I've learned that Chiari takes lives and that I need to live mine to the fullest today and everyday. 
Recently, someone told me, "it's not Chiari, it's Karma"...obviously this person doesn't like me very 
much-and she is ignorant about the disorder. 
Chiari doesn't just show up like a bad omen. We are born with it. It lurks around within us waiting to reveal itself at the most inopportune times. 
For myself, it tends to show up when I'm busiest, under the most stress or desperately NEED to be well. Dizziness, fatigue, Chiari-headaches, Ice pick headaches, tinnitus, vision loss..they NEVER show up when I'm just hanging out writing or taking a nap. 
One misconception that bothers me at times is that some people think that once you have the surgery, you are magically CURED. 
I guess what has disappointed me the most is that initially, I felt cured. I had pain, but it was surgical pain, not Chiari pain. I could hear clearly, my brain fog had lifted, blurred vision gone, tinnitus gone, trouble with word-finding greatly reduced. 
To have these symptoms recur has been disheartening and honestly at times has brought me to tears. 
I have had enough of this ride and am ready to get off. 
But I can't. SO I stay on an make the best of it..like when I was a kid on this ride at the county fair.."The Spider", it looked like a giant spider with little cars on each "leg" that spun around in circles individually as the legs rotated and rose and fell. Every time I rode it I was glad when it stopped..one year I got on and it was just about over. I had kept my eyes tightly closed the entire ride, as it slowed, I warily opened my eyes and peeked out just to hear someone in my car shout, "One More Time!!!" 
Much to my dismay, the ride operator gave a thumbs up and started us up again, by the end this time, tears where just streaming down my face. I was hot, nauseated and my long hair stuck to my cheeks. 
I remember the relief as my shaky legs hit the solid ground and a walked to a bench where I sat until once again all was right with the world. 
Sometimes I long for that, for all to be right with the world. 
To not fear a headache, to be able to run without head pain, for my glands that are still squished and in shock to kick back into action and my metabolism to get going, to not mangle about every other sentence I say by finding the wrong word, to not say, "What? I didn't hear you" constantly  and to have just one person whom I can explain it all to that totally gets it (one that is NOT a Chiarian). 
So, I guess being here at the one year mark, I look back at the year to see what the take away is. 
What do I take away from the experience? What did I learn? What can I share? 
A friend told me just prior to surgery to, "Give in to the process.." 
To just accept all that went with surgery, not be anxious and just flow through the steps as a process. 
That is my take away. 
Still, a year later, I'm merely giving in to the process. 
This doesn't mean that I don't cry or get angry or feel self-loathing. 
I feel all of those things and then some. I feel them fully. I don't hide them or stuff them down inside.. 
THEY are part of the process. I give into them. When I try to wrestle them away..it's more difficult. 
When I try to work through a headache or read with blurred vision-things just get worse. 
I give in to the process. 
No, I don't let Chiari win..I just decided to quit hating it and to welcome it like a friend. It is part of me...and I am "fearfully and wonderfully made".  
With the support of my loving husband, precious family and truly incredible friends...the past year was really a cake walk.  Just a process to go through. 
I'm thankful for that. I'm thankful that I don't hide behind false bravado or give in to self pity. 
I take every day for what it is..a priceless gift. 
So to my reader that spat at me: "It's not CHIARI..IT"S KARMA"...
My answer is..IT"S BOTH!

According to Dictionary.com the definitions of karma are:


1.Hinduism, Buddhism. action, seen as bringing upon oneself inevitable results, good or bad, either in this life or in a reincarnation: in Hinduism one of the means of reaching Brahman.
2.fate; destiny. predestination, predetermination, lot, kismet.
3. the good or bad emanations felt to be generated by someone or something

So, I'll take all three definitions: 

Chiari yields inevitable results, good and bad.  Since I was born with it..it is my fate, my destiny and it does emit good and bad feelings. 

So, could one say that perhaps 'karma" is a PROCESS? 

Thank you to the reader that put me on this path of discovery. I love being  challenged to learn and explore my own knowledge, thoughts and feelings.
So with this new knowledge I forge ahead into my second year of recovery. My surgical scar long since healed and my hair grown back in, and I smile. 
Wherever you are in your Chiari journey, I urge you to give in to the process..but never give up the fight. This is your body--the one God gave you by His choice..His design.  This is your fate, your destiny...your KARMA...
Embrace it. 


  1. Thank you so much for writing an sharing this! My one year zipperversary is on January 25th and as it approaches, I find that I am full of so many mixed emotions. I just cried to my husband yesterday that I just wanted so wake up and feel normal. I wanted this nightmare to be over. My surgery went well, no complications and, like you, I experienced immediate relief from my symptoms of severe headaches, head pressure, vision issues and right side weakness and tingling. These symptoms have stayed away for the most part. But, cognitively, I was different. Initially I had horrible short term memory loss, that I thought mostly was from all the medication, anesthesia and the surgery itself. I waited for it to go away and for the fogginess in my head to lift. While it has improved a little, it has not returned to normal. Where I once was a very clear headed, quick thinking person, I am now forgetful, mixing up words and very slow in my thinking. My neurosurgeon thought perhaps I would improve more after I went back to working as an RN. He thought the intentional focus of my thinking would help my brain overall. At 4 months post op, I returned to my job and found that the physical and mental stress was just too much for me to handle. I also began developing other symptoms and later found out that I have developed fibromyalgia due to dysautonomia. So, I've since resigned from my job so that I could focus the energy I do have on raising my three young children.
    I've struggled to give in to this process because I expected a different one after surgery. Despite my surgeon telling my that this wasn't a cure, I expected and hoped to wake up and return eventually to normal. When this didn't happen as I hoped, I became depressed. I have recently realized that I do have to accept this condition and I have to make my recovery a priority again. I can't let myself wallow in despair or I will never enjoy the wonderful life I do have. I need to eat right, exercise as I can tolerate and just take care of the "new" me! I have to accept the person I am now and accept that God allowed this in my life. I know that I am a different person since Chiari arrive in my life and in many ways, I am a better person, kinder, more patient, more compassionate and much stronger than I ever imagined I could be.
    You have encouraged me further to not give in to self pity, but to be thankful and look at each day as a gift. I have been reading your blog for a few months now and I have found inspiration through it! Thank you again!

    Sonya Berkebile

  2. Happy Zipperversary!!! Great post as usual, you have a true gift that makes the reader feel as though they are experiencing this with you. I'm glad you gave us an update. I also wish I could find someone other than a Chiarian that gets it, but I'm afraid it's a wish that will never come true. I hope 2014 treats you better than 2013! - Dave

  3. Hi Michelle,

    Thank you for sharing your experience with decompression. I got your blog from Lee. Lee and my husband went to A-School together. My daughter is a Zipperhead. She was diagnosed at 4 years old with Chiari and was decompressed just a few months later. It is so nice to read about what some go through in the healing process in the months that follow surgery and what life is like with Chiari. Our daughter cannot fully explain to us what she is feeling, so it is helpful when we hear others describe it. I know not all two people will have the same feelings, but it is a better glimpse than what we previously had.

    Best wishes,
    Miranda Fort

  4. Hi Miranda,
    Thank you for your message, I'm so sorry I just got notified that it was on here. I am so sorry your daughter has to deal with all that Chiari brings along,.however, I'm very glad she was diagnosed at such a young age, as I waited 44 yrs to find out that my issues were valid. Please contact me with any questions. My personal email is mmrobinson68@gmail.com