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 WANTED OFF!!!
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. Synonyms: 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...