My children have always come first in my life. I love everything about them and am so grateful that despite my physical limitations, I was able to become a mom.
As I was getting ready for bed last night, the photo on the wall caught my attention.
My husband gave me this picture over 10 years ago (before my Dopa Responsive Dystonia diagnosis). He knew how much I loved our daughters and saw me in this photo, which is so incredibly sweet.
Back in the day, I loved to look at this photograph and imagine being able to walk hand in hand with my girls, but knew deep down in my core that day would never come. Or, so I thought.
Life is full of surprises. These days I wake up feeling like the luckiest mom in the world. I can do things with my son, that I never dreamed possible with my daughters, which is why it's so important to stay positive and never give up hope.
Miracles do happen and they can happen to you! Never give up!
life with a disabled sister
Can you imagine living the majority of your life trapped in your own disabled body only to be freed because of a misdiagnosis? That was me. That was my life.
Quite often I’m asked questions like, “Aren’t you angry that you missed out on so much in life?” or “How do you stay so positive?” and “would you have needed all those surgeries if you had received a diagnosis of Dopa Responsive Dystonia (DRD) as a young child?” These are all great questions, but I can’t believe that no reporter, individual listening to me speak or friends have ever asked, “How did this affect your brothers?” Honestly, I don’t know for certain how they felt about all of this, but I do know that it affected them immensely growing up.
My limited mobility had a huge influence on what we did together as a family. When we visited National Parks, we never went on a hike, much less a long walk to get the perfect family photo. When we visited water parks, my teenage brothers would go off on their own so my parents could take me for a quick round of mini golf, ice cream and a few souvenir shops. And when we had no choice but to get to a destination by feet, my brothers would take turns giving me a piggy back ride. This was just a part of our normal lives. At the time, I never gave it a thought. But as an adult looking back, I realize all the sacrifices they made simply because their little sister had a knee-knock walk which made it impossible to participate in any activity that most kids loved and looked forward to.
Truth be told, they got the short end of the stick the day I was born. Yes, I may be the one who had to physically deal with spastic arms and legs day in and day out, but so did they! Why is it that no one ever thinks about that? Or is it just me? Why didn’t I ever think about how it affected my brothers? I guess I was just doing the best I could to get through life.
So to my brothers, I have to say Thank You! I thank you for your unconditional love. I thank you for never showing me how frustrated you must have been for all the times I held our family back. But most of all, I thank you for treating me like a normal sister! I am blessed to have you both in my life!
As many of you know, I live in the great state of Minnesota! Or as my mother-in-law says, "Minne-SNOW-ta."
The day began with rain and we all knew that it would be turning into snow by 2pm. As I ran my errands, I heard so much grumbling. Ugh...Snow or I'm not ready for this! And the most common, the traffic is going to be horrible!
I get it, snow can cause many inconveniences: delay in travel, more work (shovel/plowing the driveway), and slippery sidewalks, but you don't have to join in the negativity. You have a choice! You can look out the window and curse mother nature OR you can embrace it!
If you stop and look at the "white stuff" and I mean really STOP and look at it, I'm sure you will see so much beauty. As it slowly begins to stick to the trees, it changes everything. It's a new beginning. Are you willing to make this the year that you don't complain about the weather? Is this the year that you don't join in on the negativity? Or is this the year you finally book that trip to Mexico? Do whatever you've got to do to stay positive this winter! The choice is yours!!!
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)
Wow! How can it be six years already?
So much has changed these past few years. I love that I only need to take 3 pills a day, compared to the 15! I love that I've been able to share my story with the world and help others receive a correct diagnosis, like me. And I LOVE that Steve and I were able to have a third child, our beautiful John. So much has changed, yet, the love and support from my family continues to grow. I feel so much warmth in my heart as I reflect on this on such a holy weekend.
Good Friday and Easter Sunday will never be the same for me again. I never believed that a new medication would be the answer to my prayers. And I certainly never believed that I would be able to live a life of independence. How lucky am I?! I've had numerous people who have read my memoir reach out to me and say, "I will never look at Easter the same again."
On this six year anniversary or should I say birthday, I will continue to give thanks for all that God has given me as well as how much Jesus sacrificed for me...for us. May you feel a closeness to the Lord on this very special weekend. Happy Easter!
I haven't blogged in over two months, simply because I've been listening to my body, which was yelling at me to "SLOW DOWN!"
In order to keep my symptoms at bay, I have to get plenty of rest, stay free of illness and keep my stress to a minimum. Well, I was doing fine with staying healthy and getting plenty of rest, but the stress factor was another story. I was stressed about the release of my memoir, my mom was diagnosed with breast cancer (she's going to be fine) and my husband was part of a big lay off at work.
I had far too much on my mind causing severe pain in my muscles (particularly my left shoulder). Having Steve and the girls rub my back, along with using my Thera Cane and stretching was not helping. I've got a really high pain tolerance, but eventually I couldn't take it any longer and had to go to Urgent Care. Ugh, I was NOT happy about that, especially when they decided to run an EKG! Of course all was well, because it was indeed my DRD symptoms telling me to slow down!! So, I temporarily stopped blogging, took more time out of the day to rest, as well as stretch those cranky muscles.
Often times, things happen that we cannot control, but how we choose to deal with them is entirely our own decision. And we have to listen to our bodies!! I'm pleased to say that the knots in my back are gone, Steve is expected to receive a job offer in the near future and my mom is nearly done with Chemo!
As always, thank you for all your support and love!
guest blogger Tom Seaman
A special than you to Tom Seaman for going guest blogging again! I have been so busy trying to get my memoir out there, that I haven't blogged in two months!!! That is going to change. I promise that I will have one of my own entries up by the end of the week! I have lots to share with you all!! In the meantime, please read Tom's blog entry below.
From severe chronic pain and morbid obesity to a joyful bike rider!
When you look at this picture, you see a regular guy riding a bicycle; and that would be correct. I am just a regular guy doing a regular, everyday activity. However, this wasn’t always the case. What you don’t see in this picture is a former morbidly obese, depressed, angry guy in severe, chronic pain.
When dystonia entered my life, everything stopped, or seemed to stop, as everything I did was no longer possible for me to continue. Work couldn’t be done. My masters degree that I was pursuing at the time quickly became a lost dream, I couldn’t travel…heck, I could barely sit or stand without crying pain.
Because of my sedentary lifestyle with disabling pain, a terrible diet, and medicating myself with alcohol, I gained a lot of weight. I was well over 300 pounds, a long way from the 190 pounds I weighed when dystonia began. I was a recluse, holing myself up in my house for years, embarrassed and ashamed at what my life had become.
Five years after my diagnosis, I reached a point where I was afraid I might die from the punitive lifestyle I chose for myself; all done for the purpose of avoiding my physical and emotional pain, but my escape actually made me worse so it was a fruitless endeavor. A decision had to be made; continue this destructive lifestyle and suffer the consequences, or make a change a get busy living. I chose to live. I wanted a different life and would do anything to make it happen. Each day I took baby steps by exercising and changing my diet. Each day I added more things to lose weight and also gain greater control of my dystonia symptoms.
Unfortunately, I developed some problems in my back that made walking uncomfortable (my main form of exercise), so I took to riding a bike to get around the neighborhood. I felt like a kid again so I began to ride further. Wow it felt good! While I don’t go very far, maybe a few miles, I do enough to get my heart rate up and break a sweat. Some days I will really push it and get in a good workout, while other days I will roll around and just enjoy the scenery, something I missed out on for way too many years.
To everyone who sees me riding a bike that doesn’t know my story of pain, obesity, and on the verge of suicide, I am just another person out getting some exercise. This is true, but what they don’t know is that this is a guy who almost wasn’t even here at all. Most importantly, they don’t see the immense internal joy I now feel just to be able to sit on the bike again, let alone ride it!
So grateful to be alive, I love riding around and seeing a fox run by or a rabbit staring at me from the bushes thinking it is camouflaged and I can’t see it. I love seeing the colors of the sky change in the evening as I ride. I love feeling the wind on my face, the way the bike banks on turns, and how my heart feels beating through my chest; things I never thought I would experience again after my diagnosis…ever!!
To anyone looking at this picture it appears that I am just a guy out enjoying a bike ride…and you are absolutely correct. For the first time in years, without worry or fear, I am finally just a guy out enjoying the ride…the ride of his life!
Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1.
the moment I realized how scared
Sometimes life can trigger unexpected emotions that one can not control. For me, that was watching one lonely tear roll down my daughter’s cheek as she waited for three of her teeth to be extracted. More than anything, I wanted it to be me laying back in that chair. I wanted it to be me, scared for the pinch of the needles. I wanted it to be me anxiously waiting for the unknown to be in the past. And then it hit me…This is how my parents must have felt at each and everyone one of my painful appointments I had as child. And before I knew it, the memory of the most painful day of my life ran through my mind as though it was yesterday.
As a very young girl facing yet another test, my father stood up by my head and my mother stayed toward my feet. Looking at their brave little girl, a tech explained the test to all of us.
“They will be placing needles into the nerves of Jean’s foot which will send electric currents through her legs. If she feels pain, it means her nerve endings work.”
Without warning, the tech began with my right foot, which caused me to flinch with pain. “It hurts,” I cried. The currents immediately went through my right foot again.
“This time I need you to tip your toes towards your head, sweetie,” the tech informed me.
I obeyed the tech’s request, and cried out in more pain. The cry was bitter-sweet to my daddy’s ears.
“Okay,” the tech said, “We’re done with that foot. Now, we just have to do this on your left foot. Then we’ll be all done.”
“No,” I whimpered as a tear rolled down my right cheek.
My dad bent down and whispered in my ear, “You squeeze my hand as much as you think it hurts, and then I’ll feel the same amount of pain as you. If you do this today, I promise that you will never have to do this test again.” He gently removed the tear from my cheek with his thumb.
“Okay,” I looked at my dad with all the trust in the world.
The technician began again. I held my breath while squeezing my Dad’s rough hands as hard as I possibly could.
As I think back to the fire running through my legs during that horrible test, I can’t help but be grateful that I was the one on the table. Yes, I was a strong little girl who could get through the physical pain, but to be the parent and watch your child suffer through countless tests would be far more than I could ever handle. I not only feel blessed to have three healthy children, but I am also fortunate to have strong, loving parents who never once showed me how terrified they must have really been.
cooking for my daughter
One of my favorite things to do since my receiving my new diagnosis is to cook. It's something that I used to despise simply because it was so physically challenging. I could barely use a can opener much less chop and dice all those veggies that taste so good. All that has changed and now I cook a homemade meal nearly every night for dinner, so when my daughter passed her summer school class (testing out of 8th grade math so she can take 9th grade math as an 8th grader), I knew I had to do something special.
Winona spent hours studying for the first six weeks of summer, so the least I could do was spend a couple hours making some of her favorite foods. I made lasagna (with a sauce I made from scratch and froze a couple weeks ago), Olive Garden's Zuppa Tuscana and Peach Cobbler! I know that this may not seem like a big deal to some, but to me this was huge, because Winona used to have to make ME dinner!
When I was at my worst, I physically couldn't move around the house in the late afternoon/evening and making dinner just wasn't an option. My sweet giving daughter would make peanut butter and jelly sandwiches and we'd eat them picnic style in my bedroom as we watch Curious George and Dragon Tales. At the time, I felt terrible that I wasn't able to be the mom I so desperately wanted to be. These days, I'm able to be the mom I always desired to be and SO MUCH MORE!
Last nights dinner was a success! Yes, it took me a couple hours to prepare and I'll feel the knots in my back for a couple days, it was worth it! If I can make these dishes so can you!
Olive Garden's Zuppa Tuscana http://www.momontimeout.com/2011/11/olive-garden-zuppa-toscana-soup/
Peach Cobbler http://www.gonnawantseconds.com/2015/06/southern-peach-cobbler/
These are all easy to make, but are delicious as well. Happy Cooking!!!
I have always loved the idea of traveling. It didn’t matter to me that I couldn’t walk to all the important sites and that I could only see the beautiful views from the car window. I still wanted to see as much as I could. Luckily for me, my husband enjoys site seeing and back in the day he would carry me to any sites that I had to get a glimpse of.
This past week, I was fortunate to spend a week up in the Boundary Waters at the lovely Kawishiwi Lodge. It’s as close to the beauty as one could get while still staying in a cabin with running water and a nice cozy bed. Sure, I’d enjoy taking off for a week and roughing it in a tent, but at this point in time, I’m not quite sure how my Dopa Responsive Dystonia would handle it (the 5 hour drive was hard on my back and neck). But that doesn’t mean that I don’t want to get out there and see some of the Boundary Waters of Minnesota.
As many of you know, if I’m given an opportunity to try something new, I have to do it, even if that means pain afterwards. So, while in the Boundary Waters, Steve and I took a two hour paddle into God’s Lakeland via a canoe. The beauty is unexplainable and the sounds can be deafening. And I loved every second of it! Steve and I saw a little duckling chirping for its’ mother, turtles sitting on logs in the water and rocks bigger than many buildings downtowns Minneapolis. These are all things, that one can’t see from the comforts of their own car and I’m grateful that I have the physical capabilities to get out there and experience it first hand, even if that means extra knots in my back for the next couple days.