There is so much I want to tell you, yet I know that you won’t believe the half of it. I know that this has been a difficult year for you as you deal with your sick Grandma, the stress of college and trying to maintain your mobility. I just want you to know, that no matter how hard life gets, it WILL get better. You are going to be amazed by how wonderful your life turns out. Don’t ever lose your positive attitude and don’t ever give up HOPE!
The next time your mom tells you that you will get married and have a family of your own, don’t roll your eyes at her! She’s right when she says, “You’ll end up with the nicest one of all.” Despite all the physical challenges you deal with everyday due to your Spastic Diplegia, there is a wonderful man you will meet in college who will not only become your best friend, but he will choose you to spend the rest of his life with. He doesn’t care that he has to help you walk. He doesn’t care that he has to help you shower, brush your hair or even assist you to the bathroom. He loves you because you are positive, happy and don’t ever focus on your inabilities.
So, I know you always thought you’d never have children, but would just be the “fun” aunt. I gladly want to tell you that is wrong! In fact, you’re going to have three happy, healthy children. The first two pregnancies are going to be very challenging, both mentally and physically because of the spasticity you deal on a daily basis, but the third pregnancy will be a breeze, which brings me to the most exciting part of this letter. You’d better brace yourself. Are you sitting down? Of course you are.
Here’s the BIG news:
When you are 33 years old, you are going to be told that you have been misdiagnosed, be given new medication and will be on your way to living an independent life. I don’t expect you to believe this, because some days I still don’t believe it myself. So on those days where you feel like it’s just too hard and that family and friends may be better off to have you stay behind, remember this: Don’t ever give up, because miracles do happen. I know this because I’m 40 years old and I’m not in a wheelchair. I’m not in a nursing home, I’m not alone. Instead, I’ve got a family of my own and I can take care of them. I know that you’re having to deal with a lot to get to where you are today, but it’s so worth it!
You wanna know the best part? You’re going to start blogging, you’ll publish a memoir called Misdiagnosed, My Thirty-Year Struggle with a Debilitating Disorder I Never Had, and in doing so you will help 20+ people from around the world get a correct diagnosis, just like you.
So, Jean, I want to tell you to hang in there. Life will not only get better, it’s going to become amazing. Stay strong and NEVER give up!
Jean (the 40 year old you)
I spent my entire life trapped in my own disabled body (thinking I had Spastic Diplegia), unable to do simple everyday tasks that others took for granted, only to find out that I had been misdiagnosed. At the age of 33, I was given a whole new life! As a result of my new treatment for Dopa Responsive Dystonia (DRD), everyday I was doing something new and exciting. Not adventures thriliing to most, but certainly to me. I had never put a frozen pizza into the oven, driven my kids to their activities and hadn’t showered independently in years! Yet, these were my adventrues on my new medication of L-Dopa! And all I could think was, if I went misdiagnosed all these years, then surely there are others out there trapped in their spastic body just like I was. I knew that I had to put myself our there in hopes of “rescuing” others.
Yes, I blog about myself. Yes, I share the excitement about completing simple tasks, that most tweens have already mastered. Yes, I talk about my struggles and that this new diagnosis is “not a cure.” And Yes, there are people out there who think that I am only sharing my journey in hopes of being in the public eye. To get another story, simply for the attention or money. I must tell you, I’m not paid for the interviews I give, but yes I want my story picked up in the media. It’s not because I want the attention. It’s because every time my story makes it into a magazine, news paper or news show, I’ get an e-mail from one of their viewers…
“I am 42 years old and was just diagnosed with Dopa Responsive Dystonia due to your article in The Mighty.”
“At age 37 I have just been started on Sinemet. Your story got me looking into the possibility of no longer fighting to walk. I was first diagnosed with CP around age 12. I am happy to report it feels like a band that has been tied around my legs has been cut.”
“Jean! I am weeping tears of joy right now! My cousin was just here….in person….which is saying something as she was nearly completely immobile and left home only when necessary. Our family has had a MIRACLE! “
“We are grateful to you because without your story, my wife would never know the improvement she has so far achieved. “
“One of my doctors was watching cbs when your story aired. She immediately called me saying she thought I was misdiagnosed. I started the medication 3.5 weeks ago & it has helped me greatly.”
“I walked in front of my mom and older brother this weekend. My mom was so excited she videotaped it.”
“I read your article and I felt as it I was reading about my self…. I have been on it (Sinemet) almost six months now and it is amazing, confusing and emotional. I can walk almost without a limp, I am not tired all the time and my balance is improving. I am going to physical therapy monthly and can’t believe the change (either can my neurologist and P.T.)”
And sometimes, my blogging doesn’t assist in a correct diagnosis, but it offers HOPE to those who no longer have any…
“My daughter’s biggest fear when she was in that wheelchair was— how could she ever get married? She sobbed crying asking how will I get down the aisle? Will one of my bridesmaids have to push me? Who would want to marry me if I am in a wheelchair? These are such hard questions to have to answer to your own child. Your blog gives people hope when Doctors don’t! Thanks so much for spreading the word on Levodopa and reminding us all to count our blessings. Today you are one of mine.”
These are just a few of the reasons why I put myself out there. I find it stressful to be in the media at times, and that plays havoc on my DRD symptoms, but in doing so I have helped 20+ people receive in receiving a correct diagnosis of DRD. When I open up my e-mail and see that someone is walking for the first time, it makes all the added symptoms worth it and I can’t help cry tears of joy. Yes, I understand that some may see my blogging as selfish, but please understand I only do it to help give others the freedom that I now have. And to me that is an amazing gift!
To read more about my journey check out Misdiagnosed...My Thirty Year Struggle with a Debilitating Disorder I Never Had
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After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!