Can’t Take My Voice

On a bell curve my life would be about average. My math ability would be slightly below, verbal ability slightly above, but most everything else about me and all of my experiences would be considered right at average on a bell curve. That is until I faced my 49th year of life. Then the world I knew shifted on me, and I found myself having experiences that were considered statistically rare. Oh, how I longed for the top of that bell curve again.

In 2010 after an MRI that both my doctor and I thought was going to show a simple pinched nerve, I got a call from my doctor saying, “Well, this might not be life-threatening, but it will be life altering.” She was right. From February 2010, I have been on a medical roller coaster ride. Between 2010 – 2012, I have had one surgery to partially remove a benign tumor on my cervical spine. Thirty percent of it was too dangerous to remove. This left me with 14 titanium screws. I had a second surgery to implant a shunt in an arachnoid cyst that pushes on my cervical spine. I then had a third surgery to fix the tubing on that shunt when it kinked, like a hose kinks. Next, came the fourth surgery I had to put a magnetic valve on the shunt to stop it from over-draining spinal fluid into my pleural cavity, the lining of the lungs. Within two years time, we could say that I am titanium, I am kinky, I am magnetic. I am basically bionic! For the rest my life I will have a tumor on my spine that threatens to grow and a cyst that will always need to be controlled by a shunt. At that time, I kept looking for the light at the end of this medical nightmare. I wanted it to be over. I am so grateful for all of the people who stood beside me and helped me through those years. It was humbling to lose my independence.

With the next few years, my health continued on that roller coaster ride. It got little better at times it seemed, but mainly there was a series of bad news. Eight times I had to have my lung drained due to shunt malfunctioning. This caused my brain to sag. Yes, at an age when so many other things were sagging, my brain was sagging, too. Most troubling was that I was experiencing new symptoms that my doctors could not explain. I went to Dr. Google. I am notorious for getting myself in a frenzy and diagnosing myself with all kinds of conditions I don’t have going to Dr. Google. Unfortunately, this time Dr. Google was right on. The first time I verbalized my suspicion was to my mother, I expected her to say that is ridiculous. Instead, she held me and said, “If you have this, then it will be all right.” My symptoms fit Parkinson’s disease perfectly. Ok, Really — a tumor, a cyst, and now Parkinson’s disease! What about the lottery or Publishers Clearing House Sweepstakes, winning at slots in Vegas? I could have handled that. That is why I call my three diagnoses “the trifecta.” What are the odds?

After my third diagnosis, I found refuge in my closet. My favorite place to cry. Often I would hear the words, “Mom is crying in the closet again.” I watched my body succumb to to the attacks of Parkinson’s. I started to walk with a cane. I was losing my balance. I had constant fatigue. My gross motor movements were slow and difficult, and my lack of hand function made me believe that I would soon have to quit my profession of being a school guidance counselor. The medications prescribed to me were not working, and my doctors were unsure which of my three diagnoses were causing my symptoms. But with the encouragement of friends and family, I got out of that closet and fought physically with exercise and battled my way to Cleveland Clinic. On July 28th, 2015, I went to Cleveland clinic to see a movement disorder specialist.

In the beginning I did not respond to Levodopa, a common Parkinson’s medication, and so when I left my appointment that day at Cleveland Clinic with a Levodopa prescription, I was not too hopeful. In just five days from that appointment, summer vacation was over and I had to go back to work.

The next day, I filled that prescription and took the first pill, and in two hours after taking that pill, my body was back to almost full functioning. I was better than before my first surgery in 2010. With that appointment only being five days before my first day back to school as a counselor and thinking I was possibly going to have to quit my job, this was nothing short of a miracle to me. I can move, dance, swing my arms when I walk, gesture. All of those movements that at one time in my life I took for granted, I can do now. For an undetermined amount of time, I am better. I try to forget that it is a regressive disorder. There is not a cure, YET. One of my fears I had to overcome is this. some day, when I can no longer button my shirt, walk unassisted, speak up so people can hear me, when my body fails, what worth will I have to others except to be a burden?

I have changed that perspective after carefully watching the world around me through enlightened eyes. I feel reassured that each of us has a purpose in this life, and we each have a lasting legacy of just being who we are until our last breath. Yes, if you have a loved one lying in a nursing home with Alzheimer’s, Parkinson’s, ALS, Cancer, I could go on and on, they are teaching us something. Listen and learn – a big lesson: Slow down, take time, be still, reach out, don’t sweat small stuff, appreciate, and love. I have worth. I matter. I will not give up the fight.

Through my Parkinson’s diagnosis I have also discovered a whole new world of pain, struggle, fear, healing, acceptance, beauty, and joy. It is the world of the disabled or those with special needs. Before my trip to Cleveland Clinic, I lived in that world as I watched and experienced my body succumb to the attacks of Parkinson’s. After my Cleveland Clinic appointment, I came back from my journey and back to my more functional life. There is no cure for Parkinson’s. I will most likely regress someday. Right now I have the gift of my health back for an undetermined amount of time. I live one glorious day at a time! Parkinson’s Disease has given me more compassion for those with disabilities. I want to share what I have learned with as many people as possible. I hope to bridge that gap and help those without disabilities understand what the world is like through the eyes of those who have to struggle to fit in. In a way, isn’t that all of us at some point? For the disabled it is their lives at most points. Someday when my Parkinson’s progresses, I will go on that journey again. For now, I look through the window and clearly see people with differences who are exactly the way they are supposed to be.

I am a funny, fun, in love with life person. Parkinson’s tried to steal that from me. Parkinson’s lost. I will be determined to live each day of my life to the fullest and love, live, laugh, and dance every moment of my life. The fear is gone, I cry in my closet only on rare occasion now. I have a new passion for writing, songs, personal essays, children’s books, anything that will bring people hope and make them smile. Parkinson’s, “You can take away many things but through my songs and written words, you can’t take my voice.” Today, I will hug somebody, love, laugh, and fight this disease like a warrior!

Can’t Take My Voice

Hey dear friend of mine
I didn’t welcome you to stay.
But you ignored my subtle hints
and did not go away
At first I fought the thought of you
now you’re part of every day
I remember days without you.
Before you rudely looked my way
Hey dear friend
we’re in a race
the battle’s begun
As we run side-by-side.
You think that you have won
As you try to overcome
I call to hope and feel its force
my friends are in this race with me
They help me stay the course

At times you put me on the edge
you’re raw and maddening
At times you are a blessing
I look around and want to sing
You’ll be with me to the end
in that I have no choice
You can take away many things
But through these words
you can’t take my voice
Hey dear friend you’ve blessed me
with a window
Now I see
The pain and suffering of this world
you are my mystery
At times you put me on the edge
you’re raw and maddening
At times you are a blessing
I look around and want to sing
You’ll be with me to the end
in that I have no choice
You can take away many things
But through these words
you can’t take my voice!

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Author: parkinsons95

I used to be a stay in the lines, go with the flow, don't make waves kind of person. I have changed. Parkinson's is one of the many cards dealt to one in life that can shift the mind set. I am now a find the line and push beyond it, swim against the flow, and waves? I will splash and make as much joyful noise as I can, while I can, fearlessly. Brave.

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