About Us Stories
Dawn Brinkley's Story
Dear ST'rs,
My story with dystonia is one that I know is shared by many of you.
At the age of 31, in 2003, I was in a car accident where my head hit
the window. A simple diagnosis of mild concussion & whiplash
followed- standard car accident diagnosis right? Immediately following the accident I found myself with a new companion- pain. Neck spasms/pulling/mind-bending migraines, the works. I kept being bounced from one doctor to another, important to note none of which ever physically examined me, only to be told "xrays look normal", that perhaps I had a lower pain threshold than most. I thought I was losing my mind- maybe it was in my head!? But that nagging voice in the back of my mind told me that I knew better. I was the woman who gave birth to two boys, each weighing in at 9 lbs and 10 lbs- both by natural childbirth. I could handle pain. Finally 18 months after the accident, my physical therapist (who completely believed something was wrong) encouraged me to ask for a referral to a neurologist to at least get the migraines under control. This was to be the single most important doctor visit of my life. As I sat there resting my head, that I swore weighed 50 lbs, in my hand- the doctor asked about the accident and of the pain since. He studied me intently and after a manual examination of my neck, base of skull and shoulder he said you are not crazy. You have cervical dystonia. I was thrilled. I left that day crying but this time because I had received validation. I wasn't imagining the pain; it was real- very real. At my next appointment we began Botox injections. After a few months of taking my medications and receiving a few rounds of injections, I complained to my neurologist that the pain wasn't gone; as a matter of fact it was sometimes worse. Why wasn't I "cured" or "better". He looked at me and simply said you will have this for the rest of your life. There is no cure nor is there a magic wand. How silly I had been to think that because I had a diagnosis the doctor could just fix what was wrong. The honeymoon period was over. I promptly went home and began my internet search on everything I could find via the University of Google. It was a double edged sword, on one hand I found chat rooms where I knew I wasn't alone. I knew that the pain I claimed wasn't unheard of; as a matter of fact, it was the norm. But with knowledge comes understanding. Once I read all that I could, I realized that life as I knew it would cease to exist. I felt despair, anger, shame and feelings of helplessness, all helped along by the pain I felt day in/day out. Sleep eluded me which only compounded the physical pain. I could barely manage my workday, raise my kids, be a good wife to my husband and support him in his career as a Marine, how would I do it now that I knew what I was up against? I wallowed in self-pity for about a year. I would want to scream. I mourned for my old life and how freely I lived it. Every time I had a flare up from an activity I had enjoyed "pre-dystonia" such as bowling and tennis, I could almost watch myself sinking further into the black hole as I lost parts of me.
My neurologist placed me on temporary disability and while this helped ease the spasms I felt what was left of my self-esteem go into the garbage can. I had always been a working mom and proud to be such a hard worker. I thought I was superwoman. I could do it all. Losing my place in the workplace meant I lost my identity. I wasn't just a mother, wife, daughter, sister. I had a title and losing that, well that was the final twig that snapped. I began to be distant to family and friends, nasty to my husband for no good reason. I just wanted to lash out. I was in pain, both physically and emotionally. I began to have suicidal thoughts, not from the emotional pain but from the physical pain that was sometimes almost too much for any one person to bear and I found myself desperate to make that pain go away. I felt as though I lived a miserable existence.
One day while sitting outside watching the world go by I thought what
are you doing!? I had become so disengaged from my life and myself. When did I become the half glass empty girl and how in the world would I ever find my way back to "me"? That was my a-ha moment. There would never be another day in my life where I was the old me. I had to learn to accept the diagnosis and learn how to co-exist with it. The saying "you can't control what happens to you, only how you react" became like a mantra to me. I could not control the dystonia but I could adjust my attitude and learn to see the world through half glass-full eyes again.
My CD ,by now 2008, has progressed to hemi-dystonia. It effects the
entire right side of my body. Since my diagnosis I've learned that I do carry the genetic marker. I have a maternal uncle who has it and my maternal grandmother had Parkinson's. I no longer sustain gainful employment but that doesn't mean that I can't make a contribution to society and my family. I now volunteer 2-3 days a week at the Wounded Warrior-East Barracks at Camp Lejeune, NC as a Morale Support volunteer. I am honored to be in the company of these men who returned home seriously injured from combat they saw in Iraq and Afghanistan. Just the few hours a day I spend with these gentleman fills my soul with so much peace. I walk out of there head held high, smile on my face and heart full of blessings. They have served as my reminder that while I may think I've got it bad, I'M ALIVE and life is for the living. I'm reminded to count the blessing God has given me because I have the love of an amazing husband who has been nothing short of a miracle to me through all of this and two wonderful kids that I'm terribly proud to have call me mom.
I've learned everything with dystonia is a compromise. I'm learning as I go what my limits are. Ok, so bowling and tennis are out, but not virtually. My husband got me a Wii so I wouldn't miss out on sports that I love. Instead of holding a 12 lb ball, I use a 12 oz joystick but guess what? I've gained back a part of me that I thought I'd never see again.
I've learned to structure my day wisely and be very selective about
what events I go to. I may not be able to see my son's away football games, but I don't miss a single home game. I thank God that my children are so wise and understanding. And more than anything, I've really had to learn to trust myself more than I ever knew that I needed to. I have dystonia but DYSTONIA DOESN'T HAVE ME. My life is still mine! I've learned to find the blessing in the diagnosis. Pre-dystonia I was always a career mom. Now it's a joy to be home when my kids arrive. I see the blessing in being able to welcome them home with a hug. They won't be with me forever and I know I will look back on this time in my life and thank God that he gave me the gift of time with them even if I didn't know it was a gift in the beginning. Before my diagnosis I took alot for granted. Now I embrace every day with renewed enthusiasm and look for the adventures as they come. If I'm having a tough day my husband goes for sushi and we get into our pj's to eat sushi in bed. I've learned it's ok to take it easy on myself. And on my good days, I LOVE playing Rock Band with my husband and kids.
If you asked me five years ago, do you think you'll come out of this
diagnosis a better, stronger and more confident woman? I would've
told you not a chance. But I am all of those things and more. Once I
accepted the diagnosis and learned to make peace with it, my quality
of life improved 1000%. My diagnosis was not life ending, it was an
awakening. I'm not ashamed of having a disability anymore. If
anything- I'm proud. I found the silver lining, I found me and I like
her a lot. She's a tough cookie.
In June 2009 I'll be competing in the Mrs. North Carolina America pageant. I'm eager to share my experience living with dystonia, the impact it's had on my life and of those who love me. I hope to bring awareness to those afflicted with dystonia while showing my fellow delegates, judges and my community that having a disability does not define who you are. I've become a better mother, wife and have been inspired to volunteer in my community in spite of my diagnosis.
Wish me the best of luck as I will be taking the "fighter" spirit of
all of you with me on the stage that evening. I am so proud to be publicly putting a face to dystonia and showing everyone that dystonia knocked me down but I got back up.
Thank you for letting me share my story with you. I've found such
inspiration from fellow ST'rs, I hope that if even one person reading this who feels knocked down and beaten up by CD finds inspiration to get back on their feet and get back in the saddle, well I really couldn't ask for anything more from sharing my story.
Wishing you all the very best,
Dawn Brinkley
Sneads Ferry, NC
dkuehne05@yahoo.com
(Ed. Note: I’m sure a lot of you out there would like to both wish and help Dawn in this daring venture. I know she would appreciate your “votes” of confidence as well as a donation of any amount, $5 or $10 or whatever, to help defray her costs. Wouldn’t it be great to have someone with dystonia win an award like this?)