For the most part, I was a happy-go-lucky kid who didn’t let my Spastic Diplegia, Cerebral Palsy (CP), stop me from achieving my dreams. I knew that I could do anything as long as I believed in myself. I knew I could learn to drive, earn a college degree, and so much more. Most importantly, I knew that I could live a happy, fulfilled life, without the love and support of a husband. It’s true…I never thought I would marry.
Yes, I was happy and lived life with a lot of positivity, but I was also a realist. I believed that, without a doubt, there wasn’t a man out there who could possibly be attracted to a woman who was contorted from head to toe and couldn’t walk from the car to the store entrance without a sea of eyes glued to her every step. I was comfortable knowing what I had to deal with on a daily basis...but, honestly, who would sign up for such a life?
As my friends began to date and I developed my own crushes, I couldn’t help but let sadness get the best of me from time to time...the sadness that comes from thinking no one in the world could possibly have a crush on me. I wanted to experience LOVE! I wanted to walk down the beach holding a lover’s hand. I wanted to know what it felt like to have that first kiss or to wake up in a man’s arms. But the closest I would get to these feelings would come from the pages of a Harlequin romance novel. I would only share these thoughts with my mom, who would reassure me, “Jean, there is someone for everyone. And you will end up with the nicest one of all.” My mom always had great advice and a hug to go along with it, but I thought in my heart that this time she was wrong. As a teenager, who expects Mom to be right about your love life? Well, this time I was thrilled that she proved me wrong!
By the time I was 20, I met an amazing man, who attended the same college as me, but on a college basketball scholarship. I thought he was as nice as could be and far better looking than any of those men on the covers of those romance books I enjoyed reading in my teens. Immediately, he crossed my mind many times a day, but I knew that I didn’t stand a chance! How could someone so tall, dark, handsome and athletic be interested in someone like me? I was the girl in the mobility scooter! Instead of focusing on a romantic relationship, he slowly became my best friend. Two years later, he was the love of my life, and I was his.
July 29, 2000 was by far the happiest day of my life, because I said “I do” to a lifetime partnership of love and support. On our honeymoon I had to ask him why he loves me. Part of me still felt that sense of I’m not worthy of his love and he could have done so much better. Without hesitation, he looked me in the eyes and said, “because you are always so positive and don’t let your disability define you.” And I knew he was right and I did deserve his love.
I had always tried to live my life doing the best that I could, with a smile on my face. Yes, I had difficulties walking more than a few steps, jotting down notes, or even holding a book to read. Yet, my mobility and dexterity was just a small part of who I was. Who I am. Sure, my athletic husband would never run a marathon alongside his wife, but he knew that he could count on me to cheer him up after a stressful day of work, console him when dealing with the loss of a loved one, and help raise children with strong family values.
I write this blog entry not to brag about my amazing husband, but to tell everyone that there is someone out there for you. I ended up with a man who I thought was way out of my league... simply by being me.
Here we are 15 years later, and with so many changes in our relationship. We have three children, and I can now walk because I discovered that I had been misdiagnosed all those years of my youth (which is an entirely different blog entry). Yet one thing is still the same, and that is our love for one another.
Happy 15th Anniversary, Steve, the love of my life.
I’m physically exhausted. Beat. Spent. Done. Yet, I’m thrilled that I was able to help my husband and daughters with a huge chore up north this weekend.
After my husband (and neighbors) took down the largest tree on our property, I helped remove all the smaller branches and burned them in a nearby fire pit. I used shears to clip the branches into pieces small enough to place them safely on the fire. Back in the day, I wouldn’t have had the strength to do this hours on end. Yet, yesterday I did! And every time I placed another branch over the flames, I thought to myself I’m so lucky to have decent balance! Sure, my balance isn’t great and it’s something that I work on daily, but I could actually do this task without the concern of injuring myself. What a gift!!!!
Even while I worked, I knew that my body would feel the fatigue from the hard work for several days afterwards. But, I had to keep working. I can’t explain it. Deep within me, I desperately wanted to contribute. I wanted to help with something that once would have been impossible for me. I may feel like toast tonight (and the next few nights) but it feels wonderful to know that I was able to participate in an important family task.
To make things even better, this was my view after I placed the last branch on the fire. Life is good. No, I take that back…Life is GREAT!
Tomorrow, I will be 39 years old. I've had both family and friends ask me how does this make you feel? My answer is usually something like, "It's just a number?" The truth is, I feel better at 39, than I ever did at 29 or even 19!
Yes, I may be on the verge of the dreaded 40, but isn't it just a number? To me it is. I'm able to do more now at the ripe old age of 39 than I could even think to try at age 10. I love that I no longer worry about being put into a nursing home while raising my young kids. I LOVE that when I'm beyond exhausted, I still have the physical ability to put my three year old to bed, rather than he putting me to bed, like his sisters had to do when they were toddlers. I love that I can drive myself anywhere I want to go and walk nearly anywhere I want. Most of all, I love that my little boy will NEVER know a mother who can't take care of herself, much less her own little boy. And most of all, I love that I don't need or want anything for my birthday, because I truly feel like I have more in life than I deserve. And that includes all of your support! Thanks so much!!!
Recently I was asked to participate in the Jump For Dystonia campaign by sky diving! For those of you who know me well, you know that I wouldn't have to think long about that one...NO! I am about as chicken as they come (I was proud of myself for going on a roller coaster and screamed, "I'm going to die" three times in less than two minutes). Yes, I'm all about trying new things, but I also know my strengths, weaknesses, fears, hopes and dreams. And jumping out of a plane isn't something I see myself doing in the near future or ever, for that matter. However, I knew that there had to be something out of my comfort zone that I I could do to promote awareness for Dystonia. My decision was to jump into the lake (I can't swim) all while promoting awareness for the Dystonia Community and hopefully physicians who have never heard of Dopa Responsive Dystonia (DRD).
I share many links right here on my website under the "Resource" tab about Dopa Responsive Dystonia, but I think you should know that I never thought I'd become an advocate, simply because I had never heard of it!!! My entire childhood, I thought I had Spastic Diplegia, CP. After seeing dozens of doctors over the course of three decades, I still had never heard or read about Dystonia. It wasn't until that crazy "Good Friday" in April of 2010 that a neurologist told me, "I think you have Dopa Responsive Dystonia." In a matter of 48 hours, I went from being pushed in a wheelchair to standing independently!
To say I am grateful for my new diagnosis and treatment, would be an understatement and not a day goes by where I don't give thanks to God for all that He has given me. Many people ask me, "Aren't you angry that you went so long misdiagnosed?" Honestly, I don't hold any resentment or anger about my medical situation. I feel so blessed for my new found mobility and know that there are others out there misdiagnosed just like me! That is why I do everything I can to educate others about Dystonia, particularly DRD.
Click the image to watch my jump! And then take a photo of your jump (doesn't have to be into a lake) and share it with me here or on my Facebook page. Lets create awareness together! https://www.facebook.com/inspirationalrainydayfriend
This past week was spent with family doing what I love most: chatting, eating and laughing. I'm really not sure if there is anything more important in life than family and friends. If I had to choose between my new found mobility and my wonderful support system, I'd immediately say "It's time to go get another mobility scooter." I guess that's why I feel like it's SO important for me to give thanks to God every night for all the special gifts he has given me.
As I mentioned at the beginning of this post, we had a wonderful time with family. Yes, it's a lot of work for Steve and I, but I don't think we'd want it any other way. We love bringing a smile to kids faces by giving them a place to swim and fish as well as a tube to be pulled on behind the boat. Sure, I had to pack extra food and linens for the week, which is more work, but as my husband says, "It's a lot of work to have fun." And we plan on doing it again this weekend! In the meantime, I'll continue to give thanks and count my blessings each and every day.
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!