(of a species, family, or other larger group) having no living members.
“trilobites and dinosaurs are extinct”
synonyms: vanished, lost, died out, no longer existing, no longer extant, wiped out, destroyed, gone, “an extinct species”

So I started “talk” therapy in the fall of 2016 because I had finally reached a point where I needed to stop fighting and being angry with dystonia. I needed to learn to live with it instead of spending every day trying to get rid of it. I needed to learn coping skills and how to get through the really bad days without dark thoughts clouding my mind. I needed a professional so that I could unburden my friends and family who so desperately want to help me but don’t know how or what to do.

I was talking with my therapist today and she asked me if I could describe dystonia as if it were an animal. I told her that I have described how dystonia feels in my blog and to friends as my muscles have turned into serpents coiling under my skin. That was not the answer she was looking for. She did not want how it physically feels, but mentally. I asked her to elaborate. She explained that she sees dystonia as a giant grizzly bear in the room snarling and growling at me and being constantly on the attack.

That made me think for a minute…

Then I had a clear picture of how it felt. To me, my dystonia is a giant woolly mammoth that will not budge. It just stands there not noticing me trying with all my might to push it away. No matter how hard I try to punch, kick, scream and violently get rid of the mammoth it ignores me and could care less. It is silent and so huge, so big, that it takes up every ounce of space in my life and never leaves me alone. It is overwhelming. It is extinct and and that is exactly how I feel. Extinct.

Recently in therapy I said that I felt like a volcano about to erupt. I had so many emotions bottled up and needed to find an outlet. The therapist suggested that I try to imagine that dystonia was a person sitting in the chair across from me. She said to close my eyes and say whatever I felt to dystonia. At first I was silent. I had to think carefully and thoughtfully. I tried not to start screaming like a caged animal. I started to speak slowly and quietly.

“I hate that you have been stealing away my joy for over 20 years.”

“I hate that you made me think I was crazy and made other people think I was a hypochondriac, that the pain was something I needed to push through and walk off.”

“You sent me to a mental hospital for eight days. You sent me to therapy for months. You wasted so much of my time and energy that could have been spent with my family. You tricked me and all of the doctors and psychiatrists into believing this was not a physical issue. I was put on so many medications that never helped me and made me feel worse. And nobody believed me.”

“ You have stolen my independence and my freedom. You took away my ability to drive a car and walk without pain. At times I have not been able to feed myself or wash my own hair. You have taken away feeling in parts of my body and frightened me to my core.”

“I am so incredibly sad for my children, especially my younger son who will never know the mother I could have been to him. His childhood is passing by so quickly and you have consumed every spare minute of my time. You have invaded my home and you never leave me alone in peace. I wanted to teach my son to ski, to swim, to dance, to walk in nature and explore. You have made me a prisoner in my own home.”

“I used to be so much fun and completely fearless.”

“I used to smile and was not afraid of anything. Now I am afraid to walk down the street or make plans to go to lunch.”

“You have taken the best years of my life away.”

“I worked so hard for everything that I have and you stole it away from me. I loved my job, my education, my life. Every dream I had has been shattered and broken. I have had to lower my expectations. Downsize my dreams because of you.”

“I hate that you have stolen my desire for creativity and my passion for music and art. I hate that I feel dead inside.”

“I want to thank you, dystonia, for showing me what truly matters in life. All the things that were so important to me no longer matter. The bigger house, the nicer car, the dream job. My family and my friends are all that I need. My dream is to walk in the woods holding my son’s hand and be free of pain. I want to thank you for giving me the gift of incredible doctors who are so passionate about their work and truly care about my well-being. I want to thank you for giving me the opportunity to help others in a way that may help change their lives.”

When I was finished speaking I was drenched in tears. I had to change my shirt after the therapist left. It took me many days to get over the sadness that I felt after that eruption.

I still have a long way to go. The emotional trauma caused by my dystonia has been more disabling on some days than the physical aspects of this disease. The mammoth is still in the room but he does not look so big anymore.

Follow this journey on My Journey With Cervical Dystonia.

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Thinkstock photo via KatarzynaBialasiewicz.


Dear younger me,

I was once where you are at. Feeling so alone. Like your world has just crashed. No one “understanding” you. I know how hard daily life can be living with dystonia.

And I know how hard putting on the “I’m OK” face can be, when in fact you’re not OK. You’re drowning in this life, looking for a way out. Feeling so worthless.

Don’t give up! Don’t allow dystonia to define you. You are more then just a label. More then just a diagnosis. I’m sure by now you have heard things such as “It’s all in your head!” or “You outgrow it!” or “Try this or try that!” Listen to me closely: don’t you give up. Don’t let any doctor tell you, “It’s all in your head!” or “Try this or that!” You stick to who you know you are and fight the battle head on.

Know that as you get weary on this journey Jesus is always near. Take His hand and walk with Him! Don’t try and do it all alone because it will be nearly impossible. No one can do it alone. Find those friends who love you for you. Right where you’re at. Though they may not always understand, they love and care for you! Let them do those things.

In your journey you will meet some amazing people you never knew even existed. Hang in there! Jesus is using you to help others. You will find on your journey that darkness will arise but that you’re so much stronger than any dark clouds in your life. I promise! Jesus didn’t just stick others into your life for no good reason. He has plans. Good, good plans!

When you’re sitting in the doctor’s office alone feeling so defeated, know that across the miles are others who care for you. And when you grow weary of having no answers, no cure, know you have an army fighting behind you daily. Please know you are more than just dystonia.

As you grow you will experience heartbreaks. They hurt, I know. Take those heartbreaks and help someone else by sharing your story. We don’t always know who is reading or who is watching us on a daily basis. So use your beautiful journey to help others. Take a deep breath because it will all be OK. Sometimes you have to go through some heartbreaks to see the light at the end of the tunnel.

Keep going. Don’t you let others tell you what you can or cannot do. Dream big and keep your eyes on the prize. There are negative people all around you. Tune them out and stay positive. You’re stronger than you think. You are a child of the King and He loves you right where you are!

I know firsthand how hard living life with dystonia can be. At the age 25 it still seems impossible when someone wants to date me or loves me right where I am. Hold on, sweet one, because Jesus has plans! Though we can’t always see them, trust in Him and know that miles away there is someone praying for you.



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Thinkstock photo via pliona.

I live with a neurological condition called dystonia. It causes muscles to involuntarily contract which can cause a lot of pain. I have learned to better manage my symptoms, but when my pain was at its worst, it significantly limited what I could do.

For years I characterized dystonia as an evil intruder that ruined my life. What I could no longer do was my only focus, which caused great anger and depression. I was so bitter that I let myself become a victim. I was lost in a world of pain – a world I felt was out to get me.

Feeling like a victim is normal when diagnosed with any serious health condition, but it is not just people with a health condition that play the victim role. People who look negatively on life’s circumstances complain about everything from the weather to other people to their jobs…the list is endless. We have all done it, which is fine, but it can be self-destructive if we remain in this state of mind. We become isolated, depressed, bitter, angry and resentful. We mainly complain and rarely look for solutions to problems. To the victim, everything is always someone else’s fault.

For the first several years with dystonia, this is exactly how I felt. I was miserable. I felt a deep sense of loss and was extremely frustrated, so I engaged in a lot of negative self-talk. My anger and sadness made my dystonia worse because negative emotions cause increased muscle tension. I had to shift my thinking and focus on moving forward if I wanted to live a happier and healthier life.

I had to get out of the “why me, poor me?” frame of mind if I wanted freedom from my mental anguish. Instead of asking, “Why me?” I began asking, “Why not me?,” “How can I learn to live with dystonia?” and “How can dystonia help me learn and grow?” I am no better or worse than anyone else so if it happened to me, so be it. Maybe there was good reason for it. “Start viewing it this way,” I told myself.

Plus, there was nothing I could do to reverse things so I needed to learn to accept it and find the lessons in it, even when I was in ridiculous pain and could barely function. Easier said than done, but awareness of this attitude is a start!

I try very hard not to, but I still find myself being a victim at times, so I am not immune to any of this whatsoever. I just work much harder now to be mindful of these tendencies. When things get tough, I do my best to tell myself, “Although this is a difficult situation, I am going to make the very best of it.” This shifts my focus to one that is solution-oriented, which always puts me in a better frame of mind and helps me enjoy all of my abilities with passion and excitement.

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When your daughter has rare condition that causes her daily pain, your thoughts are consumed with that every day. When there’s no cure to take it all away, you just want to scream from the rooftop until someone hears you. You want people to understand how hard it is for her to go through this and for us, as parents, to watch her go through this. How incredibly helpless and lonely it feels.

I don’t want pity, that’s not at all what I’m looking for. I want you to understand that while you might get tired of all my medical facts I post on Facebook, I’m just trying to get the word out there. I want the name of her condition on the minds of scientists, doctors, and yes, I would like to educate my family and friends. I want you to advocate with me, not because we’re best friends or even family, but maybe because you’re a parent, maybe you’re a nurse or a teacher, maybe you know someone who knows someone fighting a battle, maybe you’re fighting your own.

Waiting for a cure feels like waiting in line with a million people, and I’m just a mom who can’t be patient. Our lives have been jolted into a different type of reality. That saying — “I would do anything for my kid” — that moment is happening right now for me. So please bear with me.

I know I have probably blown off half of you a time or two. I couldn’t meet for a play date or coffee. I haven’t returned your phone call from six months ago, and now here I am clogging up your Facebook page full of information that will probably never pertain to you. I talk all about her visits to the hospital for her brain MRIs, I share pictures of her in therapy, I announce how much blood she just had taken and mention the fact she didn’t cry. I brag about how wonderful her preschool is and show off her newest feet braces she has to wear.

I do this kind of stuff as much as you talk about your job, or show pictures of your child in their sport uniform or of you lounging on the beach on your exotic family vacation. I hit the “like” button. I’m very aware that the only topic I seem to know about theses days pertains to a rare condition, but that’s simple to explain. This our life.

I’m exited to share these things with you. I love her little feet braces. She personalized them with a Care Bear pattern. The fact that she didn’t cry when having her blood drawn — I’m proud of how strong and brave she is. All those pictures of her in therapy, that’s her sport. She works so hard in physical therapy, and when she learns a new word during a speech session, I’m over-the-moon excited about it.

I can’t promise my days of spreading awareness about my daughter’s journey with dystonia will ever stop. I can’t even promise that I’ll call you back in a significant amount of time, but I can promise that every time you hit that “like” button on my pictures or when you hit the “share” button to help spread awareness about this condition, I appreciate it more than words. It lets me know you get it — even though our lives are completely different right now we can still connect on some level. I don’t even blame you if every once in awhile you skim past my lengthy post and don’t always have the energy to read. But for all the days you do, I thank  you!

I can promise I will continue to hit the “like” button on all your amazing life accomplishments and adventures, big and small. I promise to always recognize how different we are, all while knowing we are all enduring some kind of struggle in life. I also promise to spread as much awareness about childhood dystonia as I can.

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Thinkstock photo by Rohappy

I haven’t really taken the time to explain how I cope with living with dystonia on a day-to-day basis. I am very much of the mindset that you are in the driver’s seat, and you manifest your life through your thoughts and actions. I guess the relevance to the point I am trying to make is that I decided a long time ago that I was going to be in the driver’s seat and not a passenger to my own life. I had been dealt this hand and I was going to play it to the best of my advantage.

In the early days of having dystonia I really struggled to cope. What I am  now going to tell you is something not many people know. Being 23 years of age, at my ultimate peak in life, to then so suddenly having to deal with the huge punch in the face that is dystonia was often very overwhelming. I struggled a great deal.

Unfortunately, some of my coping mechanisms weren’t the best. I took a dangerous path that could have easily become very destructive if I had not pulled myself together. I found myself in a very dark hole and I had nobody to turn to. I was very alone, having no real family network I could rely on. Unfortunately, my relationship with my father in recent years has been a difficult one, after losing my mother when I was just 15 years of age. I did not feel I could approach him for a shoulder to lean on. He supported me the best way he knew how, but not in the way I needed so much at the start.

Feeling so alone at this time, I turned to the things that, for a moment, numbed the emotional pain I was feeling but also gave me a boost of confidence. I don’t think I really need to spell out what I am relating to. I spent a good year being quite destructive to my emotional and physical well-being and it took a lot of strength and a good, hard talking to myself to realize that this was not the path I wanted to take nor the one I had imagined for myself. It was time to make a change and face some demons head on.

It was at this time I accepted my dystonia. This was the moment I changed for the better. Immersing myself into my new lifestyle, keeping in shape has been a great beacon for me. Not only has it kept me in physical shape, but most importantly it has kept those dreaded demons at bay. I must admit I am slightly obsessive about it at times, but I would also say – and you will hopefully agree – it’s not a bad obsession to have. On a very serious note, the way I have designed my lifestyle is my lifeline.

muscular man in tank top working out at the gym

Don’t get me wrong: not every day is plain sailing and I still have many days of doubt. But what I will say is that having the opportunity to express myself to you guys is absolutely amazing. I no longer feel alone in my journey with dystonia. These are some of the things that give me strength and keep me moving forward. I am so very lucky to be surrounded by the overwhelming love and support of the ones who care for me the most; without them I would be lost. Sometimes its the simplest things in life that make things clear to me and make me realize how lucky I am to be alive. Yes, I have dystonia, but so what? Dystonia does not control me, it does not define me and, most importantly, it does not dictate to me.

So with that said, I look forward to sharing my journey with you all. I hope to give a positive insight into my lifestyle and my coping mechanisms. You can look forward to snippets of my training routines, diet and also what I do with my downtime. To finish, I would like to leave you with this quote:

“Surrender to what is, let get of what was, and have faith in what will be.” –Sonia Ricotti

Any comments or questions are very welcome!

This post originally appeared on In the Life of James Sutliff.

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I felt as if you were jeering at me. I was within earshot when you commented on how “snooty” I looked.

I was wearing my favorite coat. I know it’s flattering and it makes me feel good.

You see, I don’t go out often. A trip to the hospital is a day out for me. In fact, those trips are frequent and my health limits many aspects of my life. I can genuinely say I spend more time at the hospital than I do socializing.

So yes, I made an effort. I wore my lovely vintage leather gloves too; an unexpected gift from a friend. These gloves remind me that kindness exists and I’m not alone.

And I wore my boots — the ones with heels. Not going-out heels, but heels enough to give me just a tad more confidence.

I also spent a lot of time looking at my phone. I wasn’t really doing anything, but I couldn’t bear the thought of eye contact or interaction with strangers.

I needed those things, that confidence, the distraction and reminder that I’m not alone because on previous visits to that hospital I have felt the opposite.

On one occasion I was hiding in a corner, shaking and hyperventilating. I was unable to communicate or make eye contact with anyone. I was genuinely terrified to step foot outside my house that day. But I made it. I made it to the hospital. I made it through the appointment and I made it home again. That was an achievement.

I spend many days in my onesie, unable to raise my arms or hold them up long enough to brush my hair. I wish you knew how much effort it took to brush my hair and put on my boots today. You don’t know because you can’t see what it took to make my way to the hospital, the place that previously terrified me.

I heard you comment on the fact that when I moved to let someone sit next to their partner, I didn’t even smile at them. You’re right, I didn’t. I didn’t even try. I have (among other things) dystonia. It’s a condition affecting my muscles. Essentially, my brain can’t control my muscles properly. Although dystonia can affect people in many different ways, for me it affects my neck, shoulders and primarily my face. I think I’m sending one signal (e.g. “smile”) but my brain goes, “Nah, let’s do this instead.” The facial spasms that result are painful and exhausting. Whenever the affected muscles are untreated, that’s what happens to my face.

That’s why I was at the hospital today. Without treatment — and whenever it wears off — one side of my face pulls with such force that on the opposite side I now have a jaw disorder which is commonly caused by car crashes or other high impact accidents. My face has done that all by itself. The other side of my face is pulled so tight it doesn’t move, so essentially I look like I’ve had a stroke. So yes, I often decide not to smile. You don’t know because you can’t see.

I’m also painfully aware that until I smile or talk I look “fine.” Such can be the case with an invisible illness. It is a significant mismatch between what’s going on inside my body and what others perceive. And while I may flush in embarrassment at the sly glances I spot in my peripheral vision while I’m busy “looking snooty,” it’s preferable to the  pity I feel when others suddenly become aware of  the dystonia on my face. I can often tell the precise moment when the switch happens. I’m in my 30s, and I suspect I’ll be seeing it for the rest of my life. Even worse, people occasionally feel uncomfortable and redirect their conversation to the person I might be with. I am still me, in this misbehaving body. I’m still intelligent. I’m still an extrovert at heart, a warm and friendly person. But my body lets me down. You don’t know because you can’t see.

For me, it’s painful to smile. Talking is agony. Before saying a word or attempting a facial expression I have to consider whether or not it will be worth the pain and fatigue it will cause. Imagine that smiling hurts; that talking hurts. What if you were to spend just an hour in someone’s company with those things in mind? This is me. This is the rest of my life. I have to make decisions about the comments I make or the people I greet. I even have to consider talking to my son, is it “worth” instant pain and hours of fatigue? Thankfully, he’s understanding because of what he’s seen me go through. It’s usually him who makes those decisions for me, because he knows I’ll naturally always put him first. He’ll say, “It’s okay mum, we don’t have to talk,” when he sees me struggling. I’m so proud of him. He’s caring and compassionate. He understands. Unfortunately not everyone does.

So, to you two ladies, there’s just one thing I want you to take from this: please don’t judge; you don’t know what you can’t see.

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