I feel more alive and free at the age of 41 than I ever was in my early 20’s. These days, I can walk my son to the bus stop, prepare and cook complicated meals for my family, and drive our kids to all of their activities. All of this is possible because I unexpectedly discovered a miracle drug called Levodopa.
I have a rare medical condition called Dopa Responsive Dystonia (DRD), which is often misdiagnosed as Cerebral Palsy (CP). I grew up with all the classic symptoms of CP; tight/rigid muscles, poor balance, toe walking, inadequate dexterity, just to name a few. The crazy thing about my physical limitations was that all of my symptoms would get worse as the afternoon turned to night. I would sleep eight hours and awake as though someone had pressed a reset button, and walk with ease again, or at least until the next afternoon.
Growing up was not always easy, which often had nothing to do with my physicality. From the corner of my eye, I would observe classmates imitate my tip-toe, knee-knock walk. I could hear the whispers as I walked down the hallway, “she’s such a spaz” or even, “she’s retarded.” These experiences were extremely hurtful. Thankfully, however, I had true friends that I could always count on to love, support and especially accept me just the way I was. Those friends would laugh with me, rather than at me. In fact, they would often times forget that I had limited mobility and would ask, “Do you want to go on a walk?” when trying to decide on afterschool plans.
Despite the unwelcome reactions of my peers I was grateful to have my close friends and my family always by my side. It was this support that motivated me to work very hard to be independent. I was always ready to prove to others that I could succeed despite my symptoms. In fact, I even decided to go away to college, against my guidance counselors advice. I not only earned my Bachelor’s Degree in Organizational Communications, but there I met the love of my life, Steve. I have to be honest, I never thought anyone would want to date or marry a “disabled” girl and saw myself destined to be single forever. My mom would always say, “Jean, there’s someone for everyone and you will end up with the nicest one of all.” Steve was able to accept me for all that I was and like my friends, there were times that he too forgot that I was disabled. I never dreamed that I would marry and become a mother. However eventually, by my late twenties, all the physical complications manifested and took over my life. I could no longer cook for my family, step in and out of the shower independently, or even roll myself over in bed. I came to the realization that the only way I was going to survive was going to be from the help of my close family and friends. What little independence I had was seemingly gone. I had succumbed to being the young mom who needed a walker to get around her own house. I was the daughter who needed her mom to take her to the grocery store, and even then I still had to use a mobility scooter. I was the parent at school functions that received the constant swarm of pity smiles from all the able bodied parents as they weaved through the crowded hallways. I was the parent who began to wonder if my daughters were better off with me in a nursing home.
I struggled to accept what felt like a life sentence– that I was losing what little independence I had fought fiercely to retain. And then the depression and anxiety began to kick in. I became paralyzed by my own negative thoughts, which was far more debilitating than anything physical. Instead of feeling excited about the life ahead of me with my husband and children by my side, I instead felt trapped in a worn out body that had gone to battle one too many times. It was time to seek help! Fortunately, a mental health counselor was able to help me navigate out of my deep dark hole. But one important question kept lurking– Why am I getting worse? The experience with the counselor led me to become mentally strong enough to face the truth. And so I made an appointment with the doctor who would forever change my life.
After the examination, the doctor listened to me, my husband and my brother explain my downward spiral. Steve mentioned that it was like someone would press a reset button after I slept. With much excitement the neurologist said, “I think you have Dopa Responsive Dystonia. With the correct medication, you will be able to walk from point A to point B without thinking about it.”
Ironically, everyone was so excited about this amazing opportunity except for me. I was certain that nothing would come from this “miracle drug.” After enduring decades of physical therapy, medications, and surgeries, to me the chance of something astounding was simply a fantastical pipe dream. Nothing miraculous had ever resulted from any past effort to help my condition. I thought silently to myself, Why does everyone think that this little pill is going to change everything?
“Nothing, I guess.”
Only a couple hours later, my body already felt relaxed. For the first time in years, I felt comfortable lying in bed. In denial of such a quick and yet life changing thing, I chalked it up to a good glass of wine at dinner. The next day, I was able to walk pushing the grocery cart at the store, but knew it was because I slept so well the night before. It was not until I was standing in the church parking lot, two days later on Easter Sunday, that I allowed myself to accept my new reality. My life had suddenly taken an unanticipated turn. To my own disbelief, I stood independently for the first time in nearly a decade! A miracle had happened, and although it was real, it was still hard to accept why it had happened to me.
For the first time in my life, I felt free! It was as if I had arrived again with a new body–one that would allow me to be the daughter, wife, and mother that I always dreamed of being. As exciting as this new adventure was, I was scared to death because I simultaneously feared my new abilities. Could I walk to the mailbox? Could I drive my daughters to Girl Scouts? In time, I learned that there was a whole world out there waiting for me and happily I’ve come to realize that my body can now meet every opportunity. I may be nearing my 42nd birthday, but when I look into a full-length mirror, I smile and feel grateful. The woman staring back is strong, courageous and positive.
And unlike Benjamin Button, I don’t have to fear my future. I get to live every day to its fullest.
If you would like to continue to follow Jean Abbott on her life’s journey, check out her book, Misdiagnosed: My Thirty-Year Struggle with a Debilitating Disorder I Never Had, her website or Facebook page!