Michelle smiling outside

To the Bathroom Attendant Who Accused Me of Not Having a Disability

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Dear Theater Bathroom Attendant,

With all of the changes that have taken place in your life the past week, I’m positive you remember me. If not, let me refresh your memory.

Last weekend, I made the decision to drive to downtown Minneapolis with the hope of buying a rush ticket to see the Broadway musical “Kinky Boots.” I’d been longing to see it. If this had been six years ago, before I was diagnosed with a neurological movement disorder, taking myself out for a day on the town wouldn’t have been a big deal. But last Saturday, the decision to go was huge. Let me tell you why.

I have cervical dystonia. Due to the pulling of my neck, chronic headaches, spasms and the pain associated with these symptoms, it takes a lot out of me to be away from home for a couple of hours. But due to the theater’s requirement of needing to be in line for rush tickets two to three hours before the show starts, it required me to think about the physical consequences of a seven-hour day away from my comfort zone. Driving 15 minutes in my car is painful, but I did it, and I miraculously found a parking spot right across the street from the theater. Everything seemed to be going my way in spite of my pain. And then I met you.

Getting to the theater at 1:45 p.m., I made my way through the crowded lobby to the bathroom for people with disabilities.

“Is there anyone using the bathroom?” I asked, having to interrupt your conversation with the woman standing beside you.

You looked at me before you answered, “Someone’s in there. You can stand there and wait.”

So I did. But why did you keep gazing at me? The woman next to you repeatedly tried to regain your attention, but you kept gawking at me — suspiciously. And I was about to find out why. After I took my turn in the bathroom, I walked out the door to find you blocking my exit. You threaded your fingers through mine, making me think, “Maybe she’s going to say something compassionate.” I’m guessing it isn’t every day you see a 44-year-old woman use the bathroom for people with disabilities. However, you stared at me with my hands locked in yours and exclaimed, “Don’t you ever try that crap on anyone else, sweetheart!”

I was stunned. What in the world were you talking about? Soon enough, I realized you could only mean one thing.

“Are you accusing me of not having a disability?” Still in shock, yet fully aware of this unexpected injustice, my eyes met yours. “I have cervical dystonia, and there is no physical way I can stand in the regular bathroom line. In fact, I can’t even hold my head up when I go to the bathroom. Do you need me to bring a doctor’s note? Or maybe my long-term disability pay stubs I get once a month because I haven’t been able to work in two and a half years?”

Letting go of my hands, you said, “No, no. That’s OK.”

But it wasn’t OK. You’d just ruined my entire day out. No matter what happened next, I knew there was no way I was going to be able to enjoy the musical.

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During intermission, I took the time to write a note to you because I really wanted you to learn a lesson from our encounter. I even wrote my name and phone number on it so you could call me if you had any questions about my disability. Just because you can’t see someone’s disability doesn’t mean it doesn’t exist. That was the most important lesson I wanted you to learn. And I was willing to have a conversation with you about it.

At the end of the show, which I never really did get to enjoy, I gave my note to your supervisor who said, “I spoke with her,” as she shoved my note in her pocket. I didn’t receive an apology from her or from you even though I went the extra mile to communicate with you.

By now, you probably know what happened once I left the theater. After writing a letter to the theater’s administrative staff, I also posted it on Facebook in a dystonia support group page. I asked both of my parents and the people from our dystonia community to write to the administration regarding your behavior. And guess what? They did!

By Monday afternoon, I’d already gotten a phone call from a person in charge. He apologized over and over again, explained you were a volunteer and said they planned to fire you. He also mentioned it was an eye-opening experience for their organization, and they definitely needed to do an even better job with their sensitivity training. At that point, I suggested he ask one of the women in the dystonia support group to speak to the volunteers and employees. He loved the idea and asked her to share her story.

What you most likely don’t know is this. I wrote a letter on your behalf to make sure you had a chance to learn how to treat others with empathy and compassion. I hoped you would get to hear my friend speak about her disability at the upcoming training session. I also hoped you could talk with her and your supervisor and engage in a meaningful dialogue afterwards. If you still didn’t “get it” based on her presentation and this discussion, then they could fire you. It was important to me that you had a chance to learn from this. But perhaps you’ve caused similar problems in the past and this was the final straw.

The theater ended up firing you without involving you in the upcoming sensitivity training, so I sincerely hope you educate yourself about people who live with “hidden” disabilities like mine. While your actions and words immediately had a negative impact on me, I chose to advocate for myself and others. The remaining theater volunteers will have a meaningful learning experience that will hopefully have a positive impact on everyone they come into contact with, whether it’s at the theater or in their daily lives. My hope is they will choose to educate others so more people develop an understanding of what cervical dystonia is and how to act empathetically towards us.

I truly hope you think about what happened between us and make positive changes on the way you interact with others. Our encounter certainly had an impact on my life. I hope it’s had one on yours, too, and that our world is a better place because of it.

Sincerely,

Michelle Shaw

Follow this journey at Chronic Hope.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

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The 'Helpful' Comments About My Disorder That Feel Like Judgments

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While I truly believe that people have good intentions, their opinions and comments often miss the mark when it comes to what we experience living with dystonia. Some of the many things I’ve heard include:

“It’s all in your head.”

“You’re just having a bad day.”

“Everybody gets tired.”

“You’re just depressed.”

“You’ll just have to tough it out.”

“If you would just get out more…”

“There are people worse off than you.”

“It can’t be that bad.”

“If you would just exercise more…”

Most of these comments come across as judgmental, but I know people aren’t trying to hurt me. They just hurt sometimes because each statement feels like a harsh opinion not based in reality.

When my dystonia was severe, I mentioned to someone that I felt lost without my watch. She responded by saying, “What do you need a watch for? You don’t do anything or have any responsibilities.” Unbeknownst to this person, who only saw me about an hour every few weeks and therefore had a small window into my world, I did have responsibilities of which she was unaware. Many were related to managing my symptoms so I could have some level of function during the day, which was the hardest job I ever had in my life. At the time I was crushed, but I rose above it because I knew she wasn’t aware of my challenges so she didn’t know any better.

While I value the opinions of people in my life, I had to learn to be independent of the opinion of others. For my own sanity, I must live my life the best way I know how so I’m most comfortable, regardless of what others think. Someone’s opinion of me does not have to become my reality.

Whether we like it or not, people will judge and have their opinions about us and how we live our lives no matter what we do or don’t do. We are the same way. We all have judgments and opinions about everything. It’s the nature of being human. It just tends to hurt more when we are struggling each day with a nagging health condition.

When symptoms change and we look better or sound more upbeat because we’ve come to better accept our situation, there’s an assumption by some that we are “healed.” We may in fact be better, but maybe not the same as we once were. Those who don’t understand this might think we are back to our old selves and can do everything we once did. I hear this all the time. Because I look much healthier than I feel, people think I’m healed and have expectations I’m not always able to fulfill.

When this happens, people can become frustrated and sometimes even belittle me. This is because they wrongfully assume that by now (whatever time frame it is) I should be better or gotten over it already. I do not dismiss what they say because they sometimes have a helpful perspective I may not have thought about, but it’s important to distinguish between helpful insights and judgmental opinions.

Finding relief should be our number one priority — not pleasing others. Family, friends, and co-workers should respect us for this. I doubt any of them would like to be in our shoes. We need to put ourselves in a position of power and not accept labels that may be put upon us such as lazy, mental, apathetic, sympathy-seeking, hypochondriac or any other thoughtless title sometimes associated with a chronic condition. We need to be careful not to label ourselves either. We should wear our challenges as armor — not as shackles.

Pace yourself and let others know you might need to take a break once in a while or that it might take a little longer for you to do something. Ask for their patience, but more importantly, be patient with yourself. Take responsibility for your condition in order to make the best decisions for yourself. This is your life. Own it and live it how you choose, independent of what others think.

Life is deep and simple.

What our society gives us is

shallow and complicated.

Be a first-rate version of yourself.

Not a second rate version of someone else.

Excerpt from “Diagnosis Dystonia: Navigating the Journey” (2015), by Tom Seaman

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

Lead photo source: Thinkstock Images

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17 Things People Who Live With Dystonia Wish Others Understood

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Dystonia is a condition characterized by persistent or intermittent muscle contractions causing abnormal movements or postures. Multiple forms of dystonia exist, and dozens of diseases and conditions may include dystonia as a symptom. It’s a complex condition with no cure or known cause, but it affects around 300,000 people in the United States and Canada.

The Mighty recently teamed up with the Dystonia Medical Research Foundation and a blog called “Raising Dystonia” to ask people who live with this condition, or have loved ones who do, what they wish the world could understand about it.

This is what they had to say:

1. “I wish people wouldn’t mistake my dystonia for me.” — Whitney Jory

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2. “It’s OK if you don’t understand. Just please be understanding that I have challenges that may require your patience and empathy.” — Tom Seaman

3. “Living with dystonia is so much more than the physical pain — which is constant and excruciating. It’s knowing that an attack is on its way but you don’t know its arrival time, only that it will arrive pretty soon. It’s forgetting the names of inanimate objects, your favorite TV show and your friends’ names. It’s being unable to communicate because of word confusion, [and] the inability to articulate, which makes you feel stupid and [feel] that everyone is tired of listening to you struggle to elucidate your thoughts and opinions.” — Bob Cook

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4. “No one knows what causes it, and there is no cure for it.” — Rita Barberousse

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5. “Having dystonia, especially on a bad day, can make everything, every action, into something to overcome.” — Amy Patricia Smith

6. “I wish people would understand that it doesn’t get better. I get tired of hearing, ‘Oh, you’ll feel better soon.’” — Colleen Thomas

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7. “I wish people knew how hard I have to work at being nice. I’m in so much pain and it’s so easy to be b*tchy. I don’t want to be that person, so I work hard at staying in a good head space. I try to be friendly. Some days I stay at home because I know I can’t take interacting with others.” — Whitney Jory

8. “Because I can do something one day and not the next doesn’t mean I am not in daily pain. Many times I do things that are extremely painful but I smile while doing them because I have four young kids who are watching my every move and I don’t want them to remember me being in constant pain.” — Cindy Harris Bratkowski

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9. The memory loss and confusion are very real.” — Koko Hisamoto

10. “Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.” — Kylie McPherson

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11. “Every day is a challenge. We may look good on the outside but we endure a lot of pain and suffering to do any and all things people take for granted.” — Anastasia Hojo

12. “It isn’t that we don’t want to participate or commit, but we have to see how we feel that day. It takes a tremendous amount of effort, hard work and a great support system to live as close to normal life as possible.” — Adrianna Euliss Barlow

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13. “Just because you can’t always see it, doesn’t mean it isn’t there.” — Amber Fisher

14. “Just because I have to do things differently doesn’t mean I can’t do them. Having dystonia doesn’t rid you of the need for independence. It may be painful and frustrating, but I can run with a limp and pick up boxes with my fist with the best of them!” — Meghan Lynn B

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15. “I wish people would ask me about my dystonia.” — Mary Sue Dobbins

16. “I suffer on a daily basis. Just trying to hide it from people is exhausting… I do my best to live with this disease because I have no choice — it’s the cards I was dealt.” — Karan Thomas

17. “Although it is a daily challenge to live with a rare form (respiratory) of a rare disorder (adult onset generalized dystonia), it’s still possible to be a blessing and an encouragement to others. There is beauty everywhere around us, if we will take the time to look for it.” — Ramona Edwards

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 *Some answers have been edited and shortened

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Why I Don't Love You Like I Used To: A Letter to My Husband

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It used to drive me crazy. As newlyweds, unsolicited advice came from everywhere. People assumed that being married meant they were an expert on marriage, and they were more than happy to lend their expertise. Almost all of it was unhelpful. There was, however, one exception.

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We met them on our honeymoon, and looking back the interaction felt oracular — as though they saw us and knew our future. We met them randomly while having a sunset cocktail. At the time, I thought they were a sad little old married couple with terribly depressing advice. Actually, I’m not sure if it was advice or rather a statement. Smiling sweetly at his wife of over 50 years, he said to us, “I don’t care how much you think you love each other now, just wait. You will look back one day and realize you don’t love each other like you used to.” They then congratulated us and departed.

As they walked away, you chuckled, and I asked, “What the hell kind of advice is that?” We both agreed it topped the list for odd and unhelpful marriage advice. At least that’s what we thought it was at the time. In retrospect, I know it was more than advice. It was a beautifully true statement regarding the process of marriage. But we were young, wildly in love and still newly married. We didn’t know they were right. As time passed and life happened, I’ve come to realize this was the most prophetic relationship statement anyone has ever given us.

Sitting here across the emergency room looking at you hold our little boy, this conversation erupts into memory. This week is the anniversary of our engagement, and I can’t help but reflect on the past decade. Watching you hold our sick boy, I finally get it now. His bowel is folded, and he’s in pain. He has his head on your chest, and your arms are wrapped tightly around him. Listening to you quietly sing all the words to “Micky Mouse Clubhouse” to him provides some brevity to the situation. If not for the IV and the hospital bed, one would never know we were in the ER. Cuddled up together waiting for the doctor, you both are so calm, so steady, so normal; it’s hard to believe our son is having a medical crisis. In this moment I understood what the sweet old married couple was trying to tell us… I don’t love you like I used to.

But here’s the thing — I misunderstood. They never said love each other “less” or “not as much” — they said “like.” This little word is the important part. Because two things can be nothing like each other and still be amazing. I get that now. Love changes overtime because life changes and circumstances change. When you love someone for your whole life, your love inevitably adapts and changes or risks fading. This is exemplified by our last 16 years together. We’ve changed. Our love has changed. Our life circumstances have forced this change.

You should know that I love you just as much today as I did when we said our vows. But I do love you now for different reasons than I did then. Reasons I would never have predicted a decade ago, long before we had grownup problems, sick babies and stressful careers. Things that used to bother are some of my favorite parts of you today, and things I used to find quirky and adorable are now… well… not.

As I watch you hug our child, both of you squished into a stretcher, no change in how I love you is more obvious than your cool, calm, logical demeanor. Oh my God, did it bother me in our early years! I could have told you our house was on fire and you would have quickly and calmly made a regression model in your head to determine the best exit strategy and what items to take with us. No emotion would be visible other than maybe a clenched jaw and a stiffness in your neck. If I came home and said, “We won the lottery!” you would smile and nod and say, “Hey, that’s great.” No jumping up and down, no screaming and shouting. No, those things would be left up to me. I’m the excitable one. The loud one. The giggly one. The emotional one. Actually I’m the anything-I’m-feeling one. You never need to ask what I feel. It’s clear by looking at me.

I always wished you would be more expressive. I’d always try to get you to be excited and let loose. My efforts were futile. It’s not who you are. You are and always will be irritatingly cool, calm and collected. Now, I can’t even believe I ever found it frustrating. I’m not sure at what point in our 16 years together my feelings regarding this changed. But they did, and now this is one of my favorite things about you.

To be fair, it probably started some time around the birth of our first child. I knew our child was sick and suffering, and I was terrified. While I was emotional, scared and going in circles, you were steady and compartmentalized. You took to medical journals and researched specialists. While I was busy trying not to freak out at abnormal test results, you were prepared, stoic and asking questions. You were not afraid to challenge the system and made sure the doctors left no stone unturned. When our little boys were screaming in pain and everyone around was frozen and unsure what to do, you quietly and calmly assessed the situation and knew what needed to be done. When I feel overwhelmed and on the verge of breaking down, you always seem to know how to calm me down and bring me back to centre.

Now, as I try to collect myself from my walk around the ER, just how much I’ve come to rely on this quality in you could not be more apparent to me. I had to excuse myself so our little man wouldn’t see me cry. His physical pain and fear overwhelmed me. He could sense my emotion, and it was not helping him. But your calming presence pushed through your own fear and emotion. He could feel your energy, and it calmed him down, took away his fear and provided him peace.

While I used to wish you were more excitable, I’m now beyond thankful that you are not. You’re the rock of our family. Our stability. Our calm center in the midst of a storm. I can’t believe I ever wished you were more like me. You provide balance to our hectic, crazy and stressful life.

Two kids with a rare disorder has changed us. Or at the very least, has changed the way I see us. Changed how I see the world. Changed what I value and what I need. What has not changed is that I love you. I’m so glad you are who you are. I’m glad it’s me you get to calm down. I’m looking forward to discovering more wonderful things about you that I never appreciated or noticed. Things I was too busy being annoyed by to see the value in. Things that may take days, years or decades for me to see and grow to love. But by then, I know I probably won’t love you like I do now. Because then will be different. Our kids will be older. Our life will have evolved. By then I won’t love you like I used to… and I can’t wait.

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This post originally appeared on Raising Dystonia.

The Mighty is asking its readers the following: Can you share a moment on your special needs journey that strengthened your relationship or marriage? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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This Woman Spent Decades Unable to Control Her Limbs. Then One Day Everything Changed.

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Jean Sharon Abbott lived more than three decades trapped inside her own body. She could barely move her arms or legs, and she needed help with even the simplest of tasks. Then, one day, when she was 33 years old, everything changed.

When Abbott was around 4 years old, she was diagnosed with spastic diplegia, a form of cerebral palsy. Despite the fact that MRIs and CAT scans didn’t show symptoms of the disorder, she seemed like a textbook case. Her neurologist was considered one of the best in the field; whenever Abbott sought a second opinion, she was assured her physician was the most qualified pediatric neurologist around.

So Abbott did what anyone in her position would do — she learned to live with it. She went to school near her home in Andover, Minnesota, she hung out with friends and she pursued her interests.

“I was a positive, optimistic, happy-go-lucky girl who just happened to be trapped in her own body due to cerebral palsy,” Abbott wrote in a blog for The Mighty.

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When she was 12, Abbott underwent a muscle transfer. Doctors detached the muscles from her hips and then reattached them so her knees wouldn’t hit each other when she tried to walk. She was in a full-body cast for a month, but her stride was slightly improved afterward.

“Things were always more difficult,” Abbott told The Mighty. “I couldn’t keep up with my older brothers. I never played sports or anything like that. It was challenging.”

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When she was in her late 20s, Abbott had a pump for medicine implanted in her body, but something went wrong, and she ended up overmedicated. She visited a doctor specializing in these pumps. This new doctor wasn’t convinced Abbott had cerebral palsy and recommended she see another neurologist.

Abbott agreed, mostly just to be nice.

After asking Abbott some questions, the new neurologist donned a huge smile on her face when she announced, “I think you have dopa-responsive dystonia.”

She explained that dopa-responsive dystonia (DRD) is a disorder characterized by involuntary muscle contractions and tremors. Its symptoms are often misinterpreted as other disorders, including cerebral palsy. It’s called dopa-responsive dystonia because the symptoms typically improve with sustained use of a medication known as L-Dopa.

Basically, Abbott was told most of the symptoms she’d lived with her entire life — spastic, cramping muscles, weakness, etc. — would disappear with just a simple pill.

“I thought she was crazy, I really did,” Abbott told The Mighty. “I wasn’t even going to fill the prescription.”

After some persuasion from her husband, Abbott did fill the prescription and took her medication. Three hours later, she felt a little bit stronger. When her husband went to help her stand up from a chair that day, she surprisingly didn’t need his assistance. Still, she didn’t think much about it.

A day later, she was waiting for her children in their church parking lot. Her husband went to get the kids, and Abbott feared her legs wouldn’t support her on her own while she waited. She was fine.

“I hadn’t stood without help for a decade,” Abbott told The Mighty. “It was at that moment I realized the medication was working and my life had changed.”

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Abbott with her family after the DRD diagnosis

“It was surreal,” Abbott told The Mighty. “It didn’t feel like this was actually possible because stuff like this just doesn’t happen to people. More often than not, they have what they have forever.”

It wasn’t long before the misdiagnosis was confirmed. Abbott was told as long as she took the L-dopa, she’d continue to live with only minimal symptoms, including cramping and balance issues.

The misdiagnosis led to countless unnecessary procedures and three decades of near immobility, but Abbott harbors no anger toward her pediatric neurologist.

“I’m not angry. Not in the least,” she told The Mighty. “When you live your whole life not able to do things, the day you start being able to do them, you can’t be anything but grateful.”

Abbott has no regrets about getting her correct diagnosis so late in life. She believes that if not for her disability, she would’ve gone to a different college, which means she would never have met her husband or had her children.

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At her 10-year wedding anniversary, Abbott and her husband decided to retrace the steps of their first honeymoon — a 1,200 mile road trip around Lake Superior. The first time around, Abbott had to be carried to many of the lookout points and touristy spots. This time, two months after getting her correct diagnosis, she completed a 10-mile hike.

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Abbott and her husband, Steve, on a 10-mile hike after her correct diagnosis.

About eight months ago, Abbott decided that she wanted to record video of herself walking, both on and off her medication. She wanted to do it to help other people who are misdiagnosed to recognize the signs of DRD. Because she never liked how she looked on camera when she had difficulties with mobility, Abbott had no home video of herself before the DRD diagnosis. Weaning herself off the medicine would be the only way to demonstrate the difference.

The video below shows the drastic difference in Abbott’s mobility and body shape on and off the medication. Within just a few days, her legs became stiff and her back bowed. She was unable to continue the experiment as long as she wanted to because of the pain, but the transformation in just three days is still starkly evident.

Since publishing the video online in September 2014, Abbott has received several emails from people who told her they recognized the symptoms in themselves or a loved one after seeing it and were later correctly diagnosed with DRD.

“It is so rewarding,” Abbott told The Mighty. “If I can just help one person, it’ll be worth it.”

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In the last five years, Abbott says her family has pushed her to experience things she never dreamed she’d be able to do — things as simple as getting dressed on her own, doing the family grocery shopping and riding a roller coaster. She remains grateful for every newfound ability and experience.

“I’ve always been a believer in everything happens for a reason,” she told The Mighty. “I think it helped me get through what I needed to get through, thinking that this is my journey. I think all of our challenges that we face in life, everything that we go though, leads us to who we are today. And I like who I am today.”

For more information on Jean Abbott, and her incredible story, visit her website and Facebook page

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You’re Tough Sometimes, Dystonia, But Here’s Why You Won’t Win

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Dear Dystonia,

You have challenged me so much throughout my life. Honestly, you still do today. I am so angry with you because I don’t understand why I have you and why you won’t leave my body alone. You make me feel so alone. You turn my world upside down sometimes. It’s hard going day to day not knowing how I will feel or what will happen with you.

I didn’t officially learn I had you until I was a junior in high school, but thanks to you, I endured endless tests and doctors appointments. I’ve also missed out on school events throughout my entire life.

All my life, people have said to me, “Chelsi, God has plans for you!” I believe this is the true, but there are days when I question, “What plans? Tell me what those plans are!” Because sometimes, it feels frustrating, confusing, and downright hard.

Dating seems impossible with you. At 23, I’m seeing all my friends dating, having boyfriends and getting married. Why can’t I date or have a boyfriend who truly sees past you? I can’t help but wonder if I ever will. Will someone truly love me despite you and all the frustrating days ahead you may bring? Will they love you, Dystonia, or hate you? Will they see strong when they see you in me, or will they see broken, lost and confused?

There are so many questions I have for you. Why do you have to make my job so hard? Why do you not only frustrate me but others around me who love me? People haven’t always been nice to you, you know. “Do you have Parkinson’s?” “What’s wrong with you?” “Look at her! She is shaking!” “Why does she do that?” You have hurt my feelings to the moon and back, but still I go on.

As many times as I have cried over you, gotten mad, got frustrated, spilled my drinks or food all over myself, one thing I haven’t done is let you take control of my life. Let’s be honest with each other — there have been times I have wanted to just let you have the win. But every single time there is someone pushing me. “No! You keep on going.” I once had a math teacher in high school who would tell me every single day, “You know, Chels, one day you will see that dystonia is only going to make you stronger in life.” How true that has proven to be.

Screen Shot 2015-03-27 at 5.29.35 PM As much as I hate you, Dystonia, without you I wouldn’t have been in a career I love, Early Childcare. You have brought so many wonderful children into my life who truly see past you. They are my inspiration each and every day. They see past you and love past you. They fight with me every single day. You have also brought me some amazing, long-lasting friendships I may never have experienced without you.

So bring it on, Dystonia. You can take me to the lowest of times, but I won’t let you win. I just won’t! It’s not in my blood. I have come too far and fought with you too hard to give up the hard fight now.

One day, we will find a cure. But until we do, we must keep on keeping on!

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The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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