I’m constantly asked, “Aren’t you angry that you missed out on so much in life? That things could have been different?” My answer is always the same. “No. Had I received a correct diagnosis at a young age, my life would have been very different.”
I have no doubt that had I been diagnosed with Dopa Responsive Dystonia (DRD) right from the start, I would have gone to a different college, never met my amazing husband, Steve, and wouldn’t have my three children. This weekend I realized it’s much more than that. I am changing lives. I, Jean Abbott, am changing lives by sharing my medical journey.
It all began when I received my correct diagnosis. I began writing my memoir, Misidagnosed: My Thirty-Year Struggle with a Debilitating Disorder I Never Had. A friend suggested that I begin blogging. I had no idea what a blog was, but Google steered me in the right direction. I soon became a contributor to The Mighty, was asked to give an interview to the UK Daily Mailand the next thing I knew the Today Show was knocking on my door asking me to share my story with the world. It was whirlwind; I was excited, yet I was petrified. I’m not a public person. And I’m not one to share my innermost thoughts with just anyone. In fact, I wasn’t sure if I could do it. Could I share my life’s struggles with millions of viewers? Though prayer, I quickly realized that I had to. I knew that if I shared my story, it would help at least one person. Surprisingly, it has helped many, including Sue Pascale.
Sue’s sister-in-law watched my Today Show interview and thought my medical journey seemed very similar to Sue’s. Sue, who was diagnosed with CP as a young child, was in her 50’s. She needed 24 hour care and was looking at nursing homes because she was having trouble eating and breathing. Her husband, Tom, watched the segment, and thought my gait was similar to the teenage Sue he remembered. Tom and Sue reached out to her doctor and she began a trial of L-dopa. Within an hour of taking the miracle drug, Sue began noticing that the tremor in her face had ceased. Within two hours she was able to change the channel with the remote, which that she hadn’t been able to do in a very long time. In time she was even able to walk.
My husband, Steve, and I were able to meet Sue and her husband, Tom, this weekend. Meeting Sue was life changing for me. I knew that I was changing lives. I was giving others hope. But, when Sue’s husband Tom asked me, “how does it feel to know that you saved someone’s life?” I knew that I had to keep sharing my story, that it was for something. Just that morning, I had told Steve that I wasn’t sure I should keep speaking, blogging, Facebooking, etc. because what’s the point? How is it really helping others? And is it worth taking time away from my kids, my husband.
Every day I talked with God. I’d give him thanks for His blessings and often times ask for patience (yes, I can be impatient). When I was talking with Steve, I secretly prayed to God to tell me if I should continue sharing my story with others. I told Him that “I need a sign.” Boy, through Sue, He really showed me the way.
I share this with all of you, because I want you to know that at times I too second guess my purpose in life. I question what God has in store for me. I wonder, am I doing the right thing? Am I making a difference in the world? And of course the answer is, Yes! Not just for me, but for you as well. God has a plan for each and everyone one of us. At times, we may question it, but if we keep the conversation with God going, we can feel His love and understand His plan. I now truly believe that this is exactly what I am supposed to be doing. And I will do everything in my power to never second guess God's plan. Thank you, Sue and Tom for this gift!