I'm excited to announce my guest blogger...Tom Seaman! I can't think of a better way to kick of Make September Dystonia Awareness Month. I hope you enjoy his post as much as I did.
How do we find ourselves? Get lost!
By Tom Seaman
In the summer of 2001, I developed a neurological movement disorder called Cervical Dystonia (CD). In the very beginning, I saw chiropractors, medical doctors, massage therapists, physical therapists, psychologists, and orthopedists, none of whom helped or even knew what was wrong. Within 8 months and with no diagnosis, I was disabled to the point of barely being able to function.
Utterly frustrated, I stopped all care and began researching the internet like crazy where I discovered cervical dystonia. I then sought out a movement disorder neurologist who made the official diagnosis. Whew! What a relief…sort of. Now what? What do I do with my life now? I had a diagnosis but I was in too much pain to continue pursuing my masters degree and I certainly couldn’t work. Social events were also out of the question. It was just me and the TV all day long. Even worse, no treatments at the time were helping.
So I did the only things I knew how to at the time. I grieved. I cried. I yelled. I retreated from the world. I drank alcohol to medicate the mental and physical pain. I ate a horrible diet and gained 150 pounds. I wanted and waited to die. Melodramatic? Perhaps, but that literally was my reality for 5 years.
Something miraculous then happened in 2006. I got sick! Yes, believe it or not, getting a major stomach flu saved my life. My dystonic body was forced to relax in bed and do nothing. Interestingly, my symptoms receded a bit which helped me think more clearly. Did I want to live or did I want to die? Was there a purpose to all of this? A resounding yes to both was screaming in my head. I realized that I had lived what I now view as the greatest gift ever. For 5 years, I had my life as I knew it taken from me so I could build a better one!
When the stomach bug flew away after 2 weeks, I changed my lifestyle back to what it was before dystonia set in. I ate well, I exercised, I practiced stress management, I saw good doctors, and I forgave myself for the guilt I put myself through for developing a life altering health condition. Within a year, my dystonia symptoms improved significantly and I lost the 150 pounds I gained. Life was fun again! Even though I still had challenges, and still do to this day that I have to carefully manage, I found my purpose...to help others.
I enrolled in a school to become certified as a health and wellness life coach. It took me two years to complete the program and when I did, I had a sense of accomplishment unlike anything in years. I knew exactly who I wanted to work with; that of course being others like me who were living with chronic health conditions.
But it didn’t stop there. I had to do more. Two years later, I published a book! Me…the guy that once rolled around on the floor in writhing pain all day long wanting to die. A miracle? I don’t think so. Just an awakening to a life that went off course for a little while.
You see, I had to get lost before I could find myself. I had to lose all purpose in life to find my purpose, which I now know is to teach and help others. I believe that is the purpose for all of us and we all do it in our own special ways. I just needed the gift of dystonia to show me my way.
As Charles Lindbergh said, “Success is not measured by what a man accomplishes, but by the opposition he has encountered and the courage with which he has maintained the struggle against overwhelming odds.” For me, dystonia was my opposition. Now it is my partner in helping others improve their quality of life and find meaning and purpose.
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
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.
For three decades I had limited use of my arms and legs due to Spastic Diplegia, Cerebral Palsy. The idea of completing simple tasks baffled me. As I’d swing at recess in elementary school, I’d watch my classmates chase one another, kick a football without falling on their face or jump rope and I’d wonder How do they do that? Then as a mom, I would hear parents complain about their long list of chores and I’d think to myself I would give anything to be a more involved parent. As many of you are aware, five years ago I got a new diagnosis (Dopa Responsive Dystonia), new medication and a new lease on life. These days, I still hear parents complain about their long list of chores, but now I think I’m so glad I CAN do those things and be grateful for each and everyone of them. That’s why I decided to make a list of what many people think of as nuisances, but I consider a wonderful gift.
Put clean sheets on a bed ….this once incredibly frustrating job took me so long that I rarely did it myself. Instead, mom would do it for me, something that a 30 year old should be able to do for herself.
Bake cupcakes, cookies, homemade bread and bars (yes, I’ve gained a few pounds since my correct diagnosis). My cakes always looked pathetic and would never be served to company. Now, I bake and decorate cakes from scratch and get asked, “What bakery did you get this from?”
Drive my daughters to basketball practice, Girl Scouts, school, orthodontist appointments, doctor appointments, church classes, friends houses, etc. I can walk them into each one of these places. Yes, it’s more time consuming, but I’m able to build friendships with other mom’s now. Days of feeling alone are no longer.
Exercise….I had been going to the gym since I was 14. It was something that I HAD to do to maintain muscle and I was fortunate that my mom was always willing to help me with, even as an adult. Now, I can go on walks with freinds or even attend Yoga classes at the gym! Yoga is one of my favorites because I love to challenge myself and see how I continue to improve. Every class puts a smile on my face as I think to myself this would have been IMPOSSIBLE before.
Ride Roller Coasters…back in the day, my body would have been in knots after something so fast and scary, but these days I CAN do it! Granted, I don’t like them and don’t quite understand why my girls love them so much, but at least I was able to try it and can cross it off my list!
I can tuck my son into bed at night…Because I couldn’t do this with my daughters, I felt like a failure as a mother. Now, when I kiss by toddlers' forehead before leaving his room, I tear up thinking How did I get so lucky do be able to do this every single night?
Household chores…Before my new life I could only do one chore a day and felt like my house was never clean unless my mom came to help or my husband did it. Being able to clean a toilet without fearing of falling face first into the bowl is a relief! Being able to load the dishwasher without pain surging through my toes is a gift! And being able to wash the close that my kids are physically capable of getting so dirty while playing outside is a blessing.
Grocery Shopping and other errands…I always had to be driven to the store and then helped onto my mobility scooter to complete the chore that most dread to do. Being a young women riding up and down the isles caused plenty of stares and sympathy smiles that I never got used to . Now, as I shop, I blend in with all the other customers and think they have no idea what my life used to be like.
My list could go on and on. I am beyond grateful for my new found mobility and it doesn’t bother me that I still have days where my balance is an issue or the knots in my back seem unbearable. But, I still love each and every day and am thrilled that I don’t have to deal with all those issues of the past ,because I have my independence, something that many people don’t have! So, please, take a look at my list and ask yourself do I ever complain about cooking for my family, running errands on a daily basis or cleaning the house? If the answer is Yes, remind yourself that those annoyances are something that others pray for. I know this, because I used to be one of them.
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.
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!