standingonmyowntwofeet

A Journey from Victim to Survivor…to Living Freely

One Year Reflection

on September 14, 2012

I can do all things in Christ who strengthens me. (Philippians 4:13)  This has become my silent prayer, mantra, positive affirmation and song I sing.  It runs through my heart and mind and allows me to find my center in an attempt (sometimes feeble) to balance my mind, body and spirit.

My heartfelt gratitude to all of you who have joined me on this incredible journey…to Dr. P for giving me my life back and to Rev. Gr and my amazing friends whose love, support, encouragement and prayers are helping me learn how to live this most beautiful life.

A quote says: I may not have known where I am heading and I have ended up right where I am supposed to be.  Indeed!

One year ago today, I was headed into brain surgery.  This would be my second brain surgery in nine months.  I had battled to get to that point, fighting for brain surgery(!) as I knew it was my only hope for possible relief from the debilitating symptoms from Chiari.  I had tried never to complain…to keep a smile on my face…to stand tall and try to comfort and care for others.  And, I was so weary.  So very weary.  I was in pain…from the base of my skull to my toes.  I was physically bruised from falls and emotionally bruised from trying so hard to hold it together…all while keeping a teeth-gritting smile on my face.  “I’m fine” was always on my lips.  I was numb from my fingertips to my nose, had lost most hearing in my right ear, had lost the sense of taste and my vision was compromised.  I joked at the time that the only sense I had left was smell…and, given a choice, smell might not have been the sense I would’ve picked to stick around.  My balance was horrendous and the dizziness and vertigo made even walking unsafe.  I’d long abandoned flip flops in favor of shoes I couldn’t stumble out of and then had given up tie shoes because I couldn’t feel my fingers enough to tie them.  I was nauseous all the time and had lost my gag reflex.  It was all I could do to keep myself together and parent the kids…determined not to let my pain and weariness interfere with their summer of fun.  I was so determined.  As the summer progressed into September, it was wearing on me.  I berated myself endlessly for not being ‘enough’.  I’d been on 22 different meds in varying dosages in 18 months and had no idea what symptoms were Chiari, side effects from medications or healing from the temporal lobe surgery.  I was a mess inside…and smiling through the pain on the outside.

As I prepared for surgery, I was so sick…and I really didn’t feel that I was going to make it through.  I am positive and the eternal optimist and I had never completely lost hope…and on that September 14th, I prayed that my family and friends have love and support through the outcome…I really didn’t think survival was in my future.  The posterior fossa decompression, duraplasty and c1 laminectomy had a 40-60% chance of improving any symptoms.  From there, in percentages of percentages, having improvement of all symptoms was around 1-2%.  I had initialed an additional comment on the surgical paperwork that specifically stated: I understand that this surgery may not improve any of my symptoms. The hope was the surgery would alleviate the current symptoms and keep new symptoms from appearing.  There is no cure for Chiari and I knew the odds I was facing.

I awoke in the SICU Recovery room and, as I looked around, I realized my vision had improved.  I was in a lot of neck pain (all those muscles HAD been resected!), but not nearly the posterior headache I’d had prior.  I had a little tingling in my hands…more feeling than I’d had when I’d been wheeled into the OR.  As the nurse did a neuro check, I said “Do you think the surgery worked?”  She told me it was too soon to tell and I told her “Well, if it didn’t and this is just the morphine, I may have to become the Morphine Mom!  This is the best I’ve felt in months!!!!”  To my total surprise and complete gratefulness, as the days turned into weeks, I began to regain more and more of me.  As my body and brain healed, so did my mind.

The journey has been challenging and has pushed me to reexamine each and every part of my innermost being.  My faith guides and calms me…and reminds me to find peace inside myself…even when the external world brings anxiety.  At so many times, I thought I could rush this process and, again and again, I am learning that the process is not linear, it will take time and it is about progress, not perfection.  As I healed from the brain surgery, I reclaimed more and more of myself.  This process took place as my external world seemed to be crumbling.

And so…in the last year of healing, all that I’d learned in battling Chiari and healing from brain surgeries and finding more of me and losing parts of me, has come together in centering myself.  My eternal gratitude to my team of doctors, psychologists, friends and strangers for their continued help, support and love with each of these painful steps…and for helping me to find the beauty in myself.  To be living this life as a genuine and authentic person…it brings tears to my eyes.  I have been a victim…and a survivor…and now I will freely live this beautiful life.

My love, hugs and prayers to all who are battling something…I used to say “It is what it is. We are all battling something…this happens to be mine.”  There is truth in those statements and I now see that I don’t have to ignore the fact that I am battling just because others are battling something worse.  Our love, support, encouragement and faith can combine together to create a stronger community.  Thank you for having faith in me when I no longer saw it, for seizing hope when I was unable to fully grasp it myself, for holding my hand and wiping my tears.  I am proud to travel alongside each of you on your journeys and feel blessed to offer my encouragement and support.  You deserve it.  You are loved. You are enough.

I can do all things in Christ who strengthens me.  Indeed, I can.

XOXO,

KJ

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