Chronic Chiari, Why Me?

After having decompression surgery, I was released from my neurosurgeon who informed me that I was basically “cured” of all my symptoms.  It didn’t take me long to realize that he was quite wrong.  Without a clear cut path of treatment, I requested referrals to several different specialists.  I was determined to to become as healthy as I possibly could in spite of this crazy condition.  I was blessed to discover my new doctors believed that my symptoms existed and they were determined to help me live as symptom free as possible.  Most of them, also, embraced non-traditional, non-western therapies in addition to medications.

In order to determine the best treatments available for my symptoms we needed to discover the origin of my symptoms.  I went through more tests than I knew existed EMG, NCV, EEG, EKG, MRI, Cat Scan, VOR, ENG, VEMP, CDP, Audiometry, Tympanometry, Polysomnogram,
MSLT, MWT and many others that I probably can’t remember.  Within a year after my decompression surgery I had been through balance and vestibular rehab at the geriatric center, physical therapy, non-laparoscopic gallbladder surgery, acupuncture, biofeedback, psychoanalysis, cardiologic testing, group and individual therapy.  I had a general practitioner, a neurologist, a pain management physician, a therapist, a psychiatrist, a cardiologist, a physical therapist, a vestibular therapist, and an acupuncturist.  I had been diagnosed with more conditions than I can remember, needed a personal secretary for medical appointments, had a pirate’s chest full of medication and a CPAP machine.   At which point I sat down and asked myself, “Why me?”  I felt like I had become a pawn in life’s cruel game. I even questioned if God were throwing medical darts at me just to get my attention.

How could life be worth living when it was nothing more than a series of appointments, medications, therapies and treatments?  I had lost my self confidence, my sense of self, my friends, my career, my humor, my faith and my hope while I gained nothing more than weight, a rolodex full of specialists, a stack of medical reports, panic attacks, and sheer misery.  Luckily, I found myself in a group of women all suffering from long term medical conditions and chronic pain.  I found acceptance.  I discovered that even a life full of pain can still be worth living.  I learned to wean myself off of most of my pain medication in spite of serious withdrawals.  I eventually weaned myself off of anti-depressants. I practiced yoga, meditation, prayer, journaling, writing, poetry, and photography. I learned that feeling emotions is easier than hiding them, the best treatment for pain is relaxation, exercise is a great antidepressant, being alone with myself is a gift not a curse and that peace is highly underrated in America.  I stopped asked, “Why me?” and began asking “Why not me?” which is a question I can find great answers to.

So let me share my answers “Why not me?”  I am not so special that I am immune from having a body that fails me.  After all, eventually, all of our bodies will fail us.  We are all destined to teach others, just as we learn things from everyone around us.  Some of us have to teach medical professionals more about the human body and I am one of the lucky ones chosen for that task.  I am convinced that I would have learned very little or even nothing from a common medical condition.  I am stubborn, self centered, overly opinionated and highly outspoken. It was going to take something extraordinary to stop me cold, leave me speechless and lost without a clear path back to normal.  Then and only then did I learn that normal doesn’t exist.  It’s just a string of ideals placed into our heads by the things we think we value.  Only when all of those ideals had been stripped from my head did I learn that I have a gift for sparking positivity in others.  My words can help others find a reason to seek the truth in the face of adversity.  I have learned so many lessons since being diagnosed that I am certain I would not have learned otherwise.  I have been to the depths of my soul seeking answers.  Luckily, I learned that there are no answers.  The real truth is that the journey set forth by merely asking the question is the only answer.  Learning to search for beauty and love is the purpose of life.   The only value to living is found in the relationships we form with God, others and most importantly with ourselves. 

I have been called a hero for remaining strong through my continued battle with Chiari and other conditions.  I am not a hero.  I am not an inspiration.  I am not a miracle.  I am just a simple girl living in a complicated body who is looking for love and happiness.  Before my diagnosis, I believed that love and happiness came from having a certain lifestyle.  There was this predetermined set of quota for achieving happiness.  Since my diagnosis, I learned to see the beauty of life everywhere.  It’s in my husband’s eyes when he looks at me, it’s in my son’s wicked sense of humor, it’s in my stepdaughters’ proud smiles as they receive their school achievements, it’s in my parents familiar fussing over the little things, it’s in my sister’s support during those middle of the night panic attacks, it’s in my friends’ understanding when I cancel at the last minute. This list could go on for days and it will go on until my dying day.  No matter when that day comes, I will not have any regrets because I spend every day speaking my love for others, seeing the beauty in life, feeling the sun on my face, making others smile and knowing that I have made a difference in someone else’s life. .