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!
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.
It's summer vacation. So for me, that means busy, busy, busy! In fact, I'm exhausted! I've put nearly 200 miles on my car in three days and I haven't even left the county! At one point yesterday, I was feeling...crabby. I was frustrated that my house was a mess and I was too busy running kids from one end of town to the other and then it hit me...Jean, appreciate the "little things in life."
I had to share this because even I find myself taking things for granted. Five years ago, I couldn't leave my house without the help of an adult. Now, here I am taking Winona to math class, basketball camp and friend's houses. Plus, Sharon, John and I have run so many errands (groceries, Target, Costco, oil change, etc).
I am so tired, yet I'm so happy that I can still function! Life is a gift and it is so important to take time to appreciate ALL OF IT!!!
Family and friends have always been an important part of my life. This weekend, I was able to literally stand up by my cousins side as she said her vows. This was the first wedding that I had been in since my correct diagnosis. And it was wonderful!!!
Back in the day, when I would be asked to be a bridesmaid, I would happily say yes, but as the day came closer my nerves would begin to build. I wasn't nervous about the typical things will my dress fit? or what if I trip on my dress walking up the stairs? Instead, the thoughts that ran through my head were more like How am I going to keep from tripping as I walk down the isle? or Where will I go when I can no longer stand up front? and of course how bad will my tremors be? These internal thoughts kept me from being there for the bride and simply enjoying the day.
This Saturday, I was able to walk down the isle with confidence and stand through the entire ceremony without worrying about anything!! I was able to focus my attention on the sermon and listen to the bride and groom share their special vows without wondering am I gong to fall? For me, this was an amazing gift!!
I wish Jessie and Randy a lifetime of happiness and thank them from the bottom of my heart for including me in their very special day!
My life turned upside down about a month ago when my journey went viral. I never expected to receive multiple phone calls (and a couple knocks on my door) from the big name news shows that millions of people watch/read on a daily basis. To say it was overwhelming for my husband and I would be an understatement. And we got through it, because of the wonderful team (especially Christina) at Media Minefield.
The day we met with them, it was like a load had been lifted from our shoulders. Christina called all the reporters back, scheduled some interviews and guided me through it all with a wonderful message map (I'm sure she did more than I ever knew about!). The map helped Steve and I to stay on track with what our exact message was. All of the interviews went well and nine people have gotten a correct diagnosis because of them!! Can there be anything better than that?!
Today I dropped off homemade cupcakes and flowers as a way to tell Christina and the rest of the team thank you, but it just didn't seem like enough. I want them to know that Steve and I got through this process in one piece because of them. And I have no doubt that we will look back on this in years to come with a smile on our face and gratitude in our heart.
Thank you Media Minefield!!!!! https://www.facebook.com/MediaMinefield?fref=ts
Do you ever think about who you may have been in a past life? This is a question that I ponder every night before I fall asleep. And unlike many people, I know the answer to this question.
In my previous life I was a positive, optimistic, happy-go-lucky girl who just happened to be trapped in her own body due to cerebral palsy. That child wasn’t able to dribble a ball down the basketball court, run around the school play ground, hold a pencil with ease to complete daily homework or even use the restroom without the challenge of pulling her pants up and down.
When that girl grew into adulthood, the idea of marrying and having a family of her own didn’t seem possible, because she wondered who could possibly love someone who has so many physical challenges? Luckily, that girl was wrong and she married a wonderful man who was able to look past all of that and fall in love with the women she was on the inside. She would later be blessed with three children and their family would be complete.
It’s very hard for me to believe that the woman I just explained to you was indeed me. That girl had struggles and challenges every singe day of her life, yet here I am now capable of so much more. Every day I do so many things that weren’t possible such as: walking my daughter to the bus stop, cooking dinner, vacuuming, driving the kids to all their after school activities and so much more!
It amazes me that I’ve had this new life for five years now!!! I work so hard to remember the person I was before that doctors appointment on Good Friday 2010. I make sure to give thanks to the Lord for my new diagnosis of Dopa Responsive Dystonia (DRD) every single day. I also make a conscious effort to appreciate everything that I’m able to do and promise God that I will NEVER take any of it for granted, even on those ever so busy days where the stress begins to rise in my chest.
When I go to bed at night and think about who I was in my past life, I smile because I’m proud of who she was and pleased that she is making the most out of her current life…never taking anything for granted.
A Special thank you to The Mighty for publishing this post (and other inspiring stories) on their website: http://themighty.com/2015/04/why-i-work-hard-to-remember-the-struggles-of-my-misdiagnosis/
After driving 650+ miles in 11 hours with three kids (13,11 and 2) alone, I am beyond exhausted. And if I wasn’t so tired, I’d be grinning from ear to ear because I was actually able to do this today.
I’ll be honest…I wasn’t sure if I could do it. I doubted my new ability and thought I would have to get a hotel room about 6 hours into the drive to rest my body. But I did it! I was able to take my kids into the rest stop for bathroom breaks, walk into fast food restaurants to grab a quick meal and pump gas. Each one of those tasks was something that I couldn’t do before. At least not without the help of someone else. But today I did all of it! And without the help of another adult. And for that, I am unbelievably grateful.