I Lived With a Misdiagnosis for 33 Years. Here’s Why I Wouldn’t Trade My Experience.

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jean
Before my dystonia diagnosis.

Dear Dopa Responsive Dystonia:

Why are you so difficult to diagnose? Why do all of your symptoms mimic cerebral palsy? Why do few doctors know what you are even though you’re so easy to treat? Why did you challenge my everyday living for 33 years, when a little pill could have eased all my pain? Why did you think you could take over my life? You must not have known how strong of a person I am because I rarely let you get the best of me.

I hate to tell you this, DRD, but I won! Even though I went untreated for three decades, I was able to make friends, go away to college, marry and have children despite the fact that I could barely move my arms or legs, despite the countless hours of spasms, stiffness and cramping throughout my body. You didn’t stop me, and I maintained a positive attitude and remained a joyful person.

I’m glad you chose me to live so many years with a cerebral palsy diagnosis because now I can share my story with the world. Because of you, I’m helping people, both young and old. My past and current experiences create awareness for parents who are now able to appreciate all the mundane tasks simply because they know I’m grateful for all I can do independently. I love that I can now put clean sheets on a bed, decorate my kids’ birthday cakes, cook meals every night and drive my children to all their activities. Yes, I’m busy and life can be stressful at times, but because of you and my “miracle drug,” I can do it all with a smile plastered across my face.

Dopa Responsive Dystonia, you may have tried to steal happiness from my life, but what you’ve really done is help me realize how wonderful the gift of mobility is. And for that, I thank you!

jeanafter
After diagnosis.

Follow this journey on JeanAbbott.com.

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Autism, This Is Why I’m Glad You Found Us

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Dear Autism,

You may not know me, but I know you. My family and I know you well. You see, we became a member of the developmental disabilities club when I was just 4 years old. We didn’t know Autism. How could the little girl who talked a mile a minute possibly have Autism? How come the little girl who loved to talk with adults just couldn’t seem to understand how to ask other kids to play? Well, I’m here to tell you it’s possible. I’m living it.

Autism, I’m glad you found us. After years of looking for an answer — one we knew existed — you found us. And you began to change our lives.

You make me who I am, along with all the other characteristics that help make me, well, me! But you don’t by any means define me. I’m smart, kind, creative, helpful, loving, caring, honest and so much more. I also have autism.

I’m not going to lie to you, Autism, you make life interesting some days (both good and bad). No day is ever boring. There have been days I’ve wondered, Why? There have been days I’ve wished you away, just because I was so frustrated and confused. I’m sorry for getting frustrated with you. I don’t think I ever really want to wish you away because you help make me who I am, but sometimes I do wish the struggles were easier.

Autism, you’ve opened my eyes and my world to a whole new community of people over the last few years, and I thank you for this. I can’t thank you enough. Autism, you’ve led me to find some wonderful teachers, therapists and professionals, and I can’t imagine not knowing these people. You’ve taught me a whole new vocabulary complete with lots of letters such as, APE, IEP, ISP, PT, OT, SLP, FBA, ABA, BCBA, etc. You’ve taught me to think outside the box, and most of all, you’ve taught me to never, ever give up!

Yours Truly,

Chloe Rothschild

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This Is Why Down Syndrome Awareness Really Matters

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You hear the word “awareness” a lot (I say it all the time). Raising awareness for this, spread awareness about that — and in the past I would participate in campaigns and show my support, but never really consider what it truly meant. I never really asked, “Why does awareness matter?”

Then I became a mom to a child with Down syndrome.

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All parents worry about their children. They worry about big things and little things — their safety, their health, who they are friends with, who they will grow up to be. I have those worries too, about both of my kids, but in Connor’s case I think I worry most about the world around him.

For Connor, if the community isn’t willing to expect great things from him then his opportunities in life are directly impacted.

I know Connor will be a self-advocate as he grows. He already makes a point of proving me wrong daily. But the reality is he will have to fight harder than most to break down barriers put in front of him by others, even well-meaning people.

There are some common stereotypes and misconceptions out there about Down syndrome, particularly because it is arguably one of the more recognizable disabilities. The problem with these stereotypes is they are often based on outdated information and experiences, and can result in assumptions about what Connor can do, and what he understands. My amazing little boy loves to show off what he can do, but he will perform to your expectations.

Give him a three-piece puzzle and he’ll complete the three-piece puzzle and celebrate with you, because it made you happy. He won’t tell you he can complete a 26-piece alphabet puzzle, understands the letter names and can recite many of the letter sounds. But if he keeps doing three-piece puzzles every day and everyone keeps being thrilled for him, that becomes his limit and he stops growing.

Being a parent of a child with a disability comes down to community. The community of people you love, the network of support around you and your child and the broader “global” community your child will enter, bit by bit, as they establish their independence. We are lucky to have an incredible, supportive network around us right now. One that has grown even more powerful as Connor is able to draw people in on his own (sometimes it only takes one of his infectious, genuine smiles and you’re hooked).

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Fairly or unfairly, Connor’s success is tied more directly to his community and the “global” community than it will be for his typically developing peers. Not because he is a drain on resources, but because others have more control over his access to opportunities.

It is important that those communities are supportive, celebrate his successes and encourage him to do more.

Awareness is about having an open mind and being willing to have what you think you know be challenged. It can be as simple as having a conversation, asking questions, or even just spending a few seconds watching. It can happen in-person, online, in media and by reading something new. Knowledge leads to understanding, which leads to an inclusive world. Not just for individuals with Down syndrome, or any disability, but for everyone. Keep an open mind in all of your interactions and it will not only change your world, but change the world for others too.

So, give Connor the chance to shine, and I promise you he will. See his abilities first and you will be amazed at how far he will go.

This is why awareness matters.

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How Being the Victim of a Crime Changed My Life for the Better

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I’m going to start this piece by saying I am South African and proud to be one, but crime is a daily reality in this country.

I work as the communications manager for a national emergency response coordinator comparable to 911 in the US, and because of this I thought I’d know how to handle myself if I were ever the victim of a crime.

I was wrong.

In November my cousin and I were ambushed by a robber as we prepared to leave the house for a business meeting. I was then trapped alone in the car for 45 minutes while the man pushed my cousin from room to room, deciding what he would steal.

Thankfully, when I didn’t arrive for the meeting, my colleague came to the house. This led to our attacker’s arrest, leaving us traumatized but physically unharmed. Aside from psychological counseling, what has helped me overcome the experience is becoming a student of a taekwondo blackbelt named Sean Cremer.

I met Sean several years ago while working as a journalist. Shortly after the robbery, I asked if he could train me because I was resolved never to be helpless again. When I asked, I truly expected Sean to turn me down, because after all, I am a quadriplegic.

To my deep gratitude and surprise, Sean took me on with no hesitation. This got me thinking about the unconscious limitations society places on the disabled, without us even realizing it. In fact, when I told an old friend (who also happens to be a paraplegic) about my training, his immediate reaction was, “But we’re in wheelchairs, we can’t do that stuff.”

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Several months on, I am now confident that in a life or death situation, I could put an attacker down. But training has become about much more than combat. The rigorous exercise has enabled me to get in and out of cars unaided, as well as on and off the toilet.

These were things I used to consider impossible.

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What’s more is I have found a level of camaraderie with Sean and his other students that those unfamiliar with martial arts probably wouldn’t understand. The tenets of taekwondo are courtesy, integrity, perseverance, self-control and indomitable spirit. This group exemplifies these values.

They have shown me that if I have the courage to try, I can go well beyond my own or anyone else’s preconceived limits.

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Autism Is a Funny Little Bird

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Autism is a funny little bird. He hopped in through a window I hadn’t meant to open. When I turned around, he was looking at me with unsmiling eyes.

I was so afraid.

I tried to shoo him away, asked him to leave 400 times. I was stern. I was pretty f*cking rude. But he wouldn’t leave. He didn’t know how to fly. I prayed to the sky, looming gray above the roof of my house, for that little bird to leave. I made deals with voices I shouldn’t have heard, voices that spoke in tongues I didn’t understand.

But the little bird still stayed. He flapped around the rooms of my house, made sounds like a screeching owl and fluttered around my head fast like hummingbird wings. He made his nest near my boy and settled in for a long stay.

The bird was horrible at first. He asked me to do things I didn’t think I could do, things I wouldn’t have ever wanted to do. He did not care if I was tired or hurting. You, the collective you, would laugh when I brought it with me to the supermarket. You weren’t being mean, but it was funny to see me chasing my bird around the store. Sometimes I admit, I laughed too. I sat right down on the dirty floor in the cereal aisle, and I laughed.  Like a mad woman laughs at the gnomes that dance on her back porch. I laughed because my bird was strange and devastatingly beautiful. I laughed because I was broken up on the inside, and you were staring at me, and the bird was chirping for cookies in his little autistic chirps. I laughed to suffocate the sobs climbing up my throat.

The bird stayed. He grew up in fits and spurts with my boy, and I tried to teach him to fly (and ride a bicycle and eat with chopsticks), but he didn’t seem to really want to learn. He didn’t ask for much. I fed him cookies, and he chirped happy chirps, and I figured out how to make him smile. I decided not to suffocate the sobs when they came, and when I did that, I found they came less and less.

The bird stays. He stays, and I still wish he would go. I wish I could see a boy without a bird nearby. I wish it like you, the collective you, wishes for a million dollars to fall from the sky. I wish it less and less though.

The bird stays. He stays because he can’t fly, and even though he never may, it’s up to me to help him try.

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This post originally appeared on Don’t Hate the Player, Hate the Game.

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C’mon Autism, Give Me Your Best Shot

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Dear Autism,

You entered our lives about 5 years ago, and, like a thief in the night, you robbed us of everything.

You stole all of our plans for our precious baby boy. The school he would attend, the vacations, friends, the possibility of a girlfriend, prom, college… everything all in one diagnosis– gone.

You’ve wreaked havoc on us with the endless screaming, the pulling of hair, the biting, the sleepless nights and the constant worry. All of the “if,” “when,” “buts,” and “whys.”

What if he never talks?

When will he show signs of progress?

But what if I’m not strong enough for this?

Why him?

There is no doubt in my mind that I would lay my life down tomorrow, just for my son to have an equal shot at life. Not even a head start, but just an equal shot at the everyday things most people take for granted. I would make that deal in a second, and never think twice. But that would be for his sake, not for mine.

My heart breaks every time I see him struggle. Why him? It’s just so damn unfair.

Autism, you have been the worst and best thing to have ever happened to me. While what you stole can never be adequately put into words, what you weren’t counting on is that through the struggle I gained strength.

You taught me you’re not a life sentence, but you are life-changing. I’m a kinder person because of you. I’m a more patient person because of you. I’m a more compassionate person because of you. I don’t get caught up in “What will people think,” because of you. I take absolutely nothing for granted because of you. I celebrate each little victory because of you. I laugh more because of you. I’m more thankful because of you.

I’m stronger, autism, and it’s all because of you.

Autism, 5 years ago you may have crushed me, but you did not destroy me. You put up a fight each and every damn day, and some days you come out the victor.

But the fact of the matter is this — A man’s strength isn’t proven by how many punches he can throw. It’s proven by how many punches he can take.

While I may not know when or where your next punch is coming from, I do know this…

I’m still here.

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