There are several messages that I share in my presentations: the importance of support systems, using certain tools to maintain a positive attitude, keeping your faith and not giving up hope, no matter how challenging some days can seem! And over the past 2 years, I had many days where I really had to push myself to get out of bed.
Steve and I divorced this past year. It was the hardest year of my life and there were many days that I wondered, Will I be happy again? Will the tears ever stop? Should I keep speaking? How long will the bitterness in my heart last? And as someone who speaks on positivity, I thought Jean, you’re such a fraud! Well, I did get through it. I am happy again. Yes, the tears did stop when I let go of the bitterness. And I wouldn’t be where I am today if it wasn’t for my supportive family, friends and talking through all of my feelings with a mental health professional. I’m sure by now, you’re wondering. What happened? Since receiving my correct diagnosis, I became more independent and quickly grew and changed as a person, and he didn’t grow with me. This was something I feared when my life changed overnight. And it was something I thought about as we prepped for The Today Show interview. Yet, I hold no regrets! I have always believed that God has a plan for each and every one of us. And this was part of His plan. I still give thanks every time I receive an e-mail from someone across the globe stating they saw my story and are now able to walk. And I don’t regret marrying Steve, because without him, I wouldn’t have my children. But the past two years have changed me yet again. Isn’t that what life is all about? When I wake, I thank God for my life. And as I drift off to sleep, I thank Him for the blessings that He put before me during the day. Yes, going through the divorce was more painful than all the surgeries and medical procedures combined that I had as a child, but I made it. And I’m stronger and more confident because of it! I am so glad that I didn’t give up! And I thank my family and friends for standing beside me, every step of the way.
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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! At the age of 7, I attempted to ride a horse and failed. And when I say that I failed, what I really mean is I’m lucky I wasn’t seriously injured. In fact, I felt like a cowgirl doing tricks at the World’s Toughest Rodeo would be an understatement. The horse I was on took off running and I had lost complete control and I found myself holding on for dear life...on the underside of the horse! I swore that I’d never get on a horse again, until the following summer when a friend begged me to go horseback riding with her. I told her that it was something I couldn’t do, but she had so much faith in me and assured me that I would succeed the second time around. So, I faced my fear and got back on the animal only to find myself on the underside once again as it galloped down the dirt path. As terrifying as this was, I soon learned to tell the story with much laughter, but I knew that I would NEVER ride again. No matter what!!! Or so I thought. Last week, I had the privilege of speaking to the staff at True Friends, a camp whose mission is to “provide life-changing experiences that enhance independence and self-esteem for children and adults with disabilities.” While I was honored to share my message of trust, positivity and gaining a better appreciation for the little things in life, they were able to help me overcome my fear of horses! Prior to taking the stage, I met with their True Strides staff (Shari, Linda, Kim) who assisted me with a one hour horse therapy session. They were incredibly patient, friendly, supportive and just as excited to help me face my fear as I was to overcome it! I not only got on the horse, but I did so without hesitation simply because I knew that these wonderful woman would keep me safe. Thanks to the staff at True Friends, Riding Kal was an amazing experience that I soon won’t forget. It’s no surprise that adults and children come from all over the United States to experience the magic of True Friends! I encourage you to check it out; maybe it’s just what you need to put an extra smile on your face this summer. Isn’t it funny how life can turn out? And isn’t it amazing how a challenge can turn into an amazing gift?
As I approach my 7th anniversary of my correct diagnosis, I can’t help but think about how much I have changed these past few years. I have forced myself to try so many new things that seemed down right scary to me. Many of these fears have forced me to go out of my comfort zone. When I realized that my new medication of L-Dopa was working, I was more scared than excited. I had a hard time wrapping my head around the idea of what I was actually physically capable of doing independently. Walking to the mailbox that first time had my head spinning with doubt, yet I had to give it my best shot. I couldn’t fail myself. And the only way I would see it as failure was to not try and simply continue living my life as though I still had Spastic Diplegia, CP. If I didn’t make it, I could try again later. All I knew was that I had to keep trying. But not all of my new adventures were trying to tackle physical obstacles. About three years after receiving my Dopa Responsive Dystonia (DRD) diagnosis, I was asked to speak to a group of medical students. Because I was never one to say “no” and loved trying new things in my crazy new life, I eagerly said, “yes!” I actually surprised myself because I’ve always had a fear of public speaking! I was the girl in High School that would be physically ill with the thought of standing in front of the class talking to my peers. Here’s the thing, I LOVED it! For the first time since receiving my DRD diagnosis, I realized that I could share my medical journey and help others in the process. Initially, I saw it as a way to educate medical professionals about DRD, since few doctors have ever heard about it. But, I quickly realized that it was much more than that! I was able to give others hope, when they had given up. I was able to encourage others to appreciate the little things in life, when they were feeling overwhelmed with all the stresses of a busy life. And, I was also able to motivate others to face their fears and work hard to achieve their lifelong dreams and goals. I can’t help but thank God, for giving me the strength to really use my struggles to help others. I am grateful that I continue to face my fears because it helps me to see how strong of a person I really am. I may not be perfect and doubt myself at times, but I look to the heavens and realize that with God by my side anything is possible. I have another question of the Week for you: When did I realize that I was cured For those of you who suffer from Dystonia, I can only imagine what your thinking. Stay calm and take a look. I'm about to set the record straight. |
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