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)
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!