My name is Whitney Jory. I’m 26, and I happen to have a total of 11 disabilities, all of them chronic (meaning I will likely always have them). When I hear someone say to “feel better,” I want to remind them that this is how it is. Cervical dystonia is a neurological movement disorder that causes constant spasms in my neck, shoulders, back, throat, face and chest and a tremor throughout my body, and I have severe chronic pain syndrome. You better believe I’ve been doing everything in my power to get better since I was first diagnosed at age 18.

There are so many things even my closest loved ones don’t know about what it’s like for me to have cervical dystonia, chronic pain and all my other disabilities. I wish they knew how hard I have to fight every single day for my life. My chronic pain went severely under treated for six years. Because of those experiences and the culmination of both physical and emotional pain, there have been so many instances where I just wanted to disappear. I’m not ashamed to admit that I’ve called my fair share of suicide hotlines. I’m extremely thankful I’m an optimist and have so much strength because it helped me get through the darkest moments. When I start to think like this, I’m blessed enough to be able to call my extremely supportive boyfriend, John, at all hours of the night and talk it through. I’ve also made myself list 10 reasons why I love life in my journal. It makes me remember that my life is worth fighting for, even though I have to push against all odds.

I’m in severe and constant pain if I’m awake, even with medications. I’ve been through many sleepless nights where my pain prevented me from falling asleep or woke me up at all hours.

Social functions have become rather difficult. I’ve cried my way through many dinners in public simply because I didn’t feel good. I’ve been told by a friend that others get uncomfortable when I discuss my medical conditions. I wish I could talk about my health without making others feel uncomfortable.

I wish I had more support from my family, friends, my community, the public and the world. Most don’t even know what cervical dystonia is. My ultimate goal in life is to make “dystonia” a commonly understood word. I would love to see a cure for both dystonia and chronic pain.

Some things I wished my loved ones would do are surprise me with flowers or a card when I’m having a pain spike or recovering from a procedure. Chocolate is also a big comfort food; I’ve been known to polish off a bar or two on epic pain days. Friends could also show their support by coming over when I’m recovering, bringing Thai (pumpkin curry and brown rice, please) and watching TV shows with me. Even little things like loved ones sending texts of support, sharing my posts about dystonia on Facebook or even giving me a big hug (nope, I’m not breakable) when they see me could help. One huge thing loved ones could do is to help me organize a fundraiser to benefit the Dystonia Medical Research Foundation.

I wish my friends would make more time to understand what I’m going through. I’d like them to learn about cervical dystonia and other conditions, and ask me questions to try to understand how my conditions affect me. I want them to accommodate me into their busy schedules. So many of my loved ones make insensitive comments or are too busy to stop and listen.

Flowers, curry, cards, chocolate and texts are all nice, but having a person in my life to listen to me and understand even 1 percent of what I go through is invaluable.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

Follow this journey on Chronically Whitney.

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.


ThinkstockPhotos-181596130 Receiving an autism diagnosis for your child can be a difficult time. You have so many fights ahead with services, schooling etc., but having a positive attitude can make such a difference.

Coping mechanism seem to vary quite a lot from what I have witnessed on social media. In my experience, parents often go down two different avenues. Do you take the red pill or the blue pill?

Blue pill

You will meet a lot of other parents of autistic kids. You will share tales of hardship. You will make lots of friends. You will learn a few things about how to help your kid, but mostly your bonds will grow with all the problems autism can bring. There will be glimpses of happiness when your child or your friend’s child reaches a developmental stage. You will learn that autistic adults sometimes get defensive if you vent about your child’s problems. In fact, you may even believe they shouldn’t really be in autism support groups, as they are nothing like your child. Meltdowns, sensory issues, problems your child may present may be hard to understand. You may compare your child to other children, which may always be  upsetting. You may spend a lot of time desperately wishing for a cure. The problem with taking the blue pill is you may mistakenly get drawn into a cycle of depression, and relating to other parents in the same predicament can make things even tougher. Often in these groups the more depressing your posts, the more likes and comments you will get.

Red pill

This is a harder pill to swallow; it may isolate you more from other autism parents. However, for the help and support you receive, it will be amazingly positive. You will develop valuable friendships with autistic adults and like-minded parents. They will teach you that those developmental charts don’t mean much, that you can see all the amazing differences your child brings without having to compare to other children. They will assist tremendously with meltdowns and sensory issues. Why? Because they have been there. Some autistic adults will be defensive if you’re negative about your child. You will learn that this is understandable. The negative focus on autism brings back difficult memories, and you will learn that they are only defensive because they worry for your child. You will learn that showing them respect back can produce great friendships, and the advice they can give you will be invaluable. Your child may still have a disability, but many traits, language differences and behaviors can be seen as a neurological difference, which needs to be respected rather than seen as a tragedy.

Do you take the red pill or the blue pill? To help you decide, I am going to put up two scenarios:

Drama at the play park:

Blue pill: My son cries and screams around other kids. He’s 6, and I still have to put him on the baby swing. He only tolerates for a few minutes and then screams wanting off. It’s so hard.

Red pill: We avoid play grounds at busy times. When we do go, he loves lying under the swing and seeing it swing from side to side. Yes, we get some funny looks, but he loves it. If other kids start coming along, he always decides to leave, and that’s understandable.

Blue pill: I’m so sad for my child. My other kids have been on play dates, even sleepovers. No one knocks at the door for him. After school he just goes in his room and plays with his toys; it breaks my heart. He’s not happy if I try and force him out. He must be miserable.

Red pill: Yes, sometimes it’s sad to see my son struggles with friendships. He needs his down time though after school and needs the space to just be by himself for a while. He feels safe and secure in his daily routine. Social interaction with him at school can be quite exhausting, so we’ve learned to give him the space he needs after.

Blue pill may equal grieving, comparing, fighting and possible depression.

Red pill may equal learning a new concept, opening your mind and discovering a new adventure.

Please, be brave. I’d suggest you make the decision to swallow the red pill.

The next time you’re on social media, connect with some autistic adults; you will get great help and develop brilliant friendships. Autism doesn’t need to be about grieving, sadness or depression.

No one ever says having an autistic child is an easy task, but with the right mindset, fighting for schooling, services and therapies can be easier with a positive attitude. The red pill, in my opinion, is the best way to achieve this.

This post originally appeared on helpfulhev.

If you’re reading this, you may be pregnant with a little one diagnosed with spina bifida, and you’re slightly freaking out right now. Also like me, you probably googled spina bifida — against everyone’s advice to stay off of the computer — and happened upon this story. And maybe, just perhaps, you are still on the fence about whether or not a child with special needs is something you are capable of handling. I am here to reassure you that every child and person with spina bifida has had parents who stand exactly where you are today. We all probably freaked out, cried and doubted our capabilities, but we got over our fears and became a stronger parent for it. You can do this, too.

The greatest advice I ever received when I was pregnant with my twins (Jake and Lucy) — and Lord knows I got a lot of advice — was that one day I would wake up and spina bifida wouldn’t be such a big deal. Back then, I remember thinking the Children’s Hospital of Philadelphia nurse who told me that was crazy. And then one day it happened: I ran out of diapers. Keep in mind I now had three babies under 3 years old and we go through a lot of diapers! I thought, Oh crap! We are out of diapers. I have to run to the store! I never thought, Oh crap! One of my children has spina bifida and now we are out of diapers! or Oh crap! Jake has spina bifida, how can I go to the store? It was just the simple realization that life was going on anyway, regardless of Jake’s spina bifida. I was still going to run out diapers, I was still going to have to make dinner, I was still going to sing silly songs to my kids and play dress up. Most importantly, I realized I was still a mom — and those babies needed me to be the best mother I could be.

I always said if I could have met my Jakers when I was pregnant with him, I would have never cried a single second over his diagnosis. So he has some issues — his temper tantrum-screaming all-the-time-hides-food-in-her-toy-box twin sister is on track to have plenty, too. To know him is to love him. His smile, his crystal-blue eyes, his belly laugh, his ridiculous Shaun Cassidy-esque hair — he is completely perfect in every way. Sure, his feet are a bit funky and he constantly has a stinky diaper, but I wouldn’t  change a thing about my lovable son… well, other than his ability to fight off a sleep like it’s his job.

So Mama or Daddy, if you’re reading this and wondering how in the world life is going to go on, or how can this happen to you, I am here to tell you this: you can do this. You can do this. We can do this. Our story was written with spina bifida. Your story may be something else — cerebral palsy, or autism or any of the thousands of diagnoses that make our babies wonderfully special. We are all looking for the same result: to exit that hospital with a happy, bundle of joy in our arms to call our own.

So get up, strap on your big-girl (or big-boy) pants and get ready! Because this baby — your baby — isn’t going to take any mercy on you. He or she will be here in no time, and your heart will be stolen the second you meet. And shortly after, you might be wondering what the heck you were so worried about. Just don’t forget to buy plenty of diapers!

A version of this post originally appeared on The Journey: Redefining Spina Bifida.

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Sometimes we know a crisis is coming like knowing a summer thunderstorm is headed our way. The light dims, the leaves turn up their silvery edges and the wind becomes eerily calm, yet more intense, all at once. At these times, my son’s moods shift and dance, and I can see the storm approaching; we have time to brace ourselves, make a plan, take cover and ride it out. We can rely on ourselves and the community we know.

But sometimes crisis just sneaks up, the way it did a few days before we hospitalized our 7-year-old son for the second time this year. As frightening as these unexpected storms can be, we’ve learned someone always appears to provide a bit of shelter.

One afternoon on an otherwise lovely day, without provocation, my sweet boy began to attack his younger sister and myself in our town’s center. He laughed maniacally and looked for things to throw at us – sticks, stones, his shoes and grass all came our way. We were several blocks from our car and about a mile from home. We’d gone out for ice cream. Nothing had happened. No warning, just a sudden, raging storm.

I pulled out my phone to make a call…to one of his therapists, our local crisis team, possibly 9-1-1. Before I could decide, I realized I couldn’t dial my phone, keep my daughter safe and prevent my son from running away, which he was starting to do, all at once. I needed six more hands. So I dropped my phone in the grass in order to use the two I did have.

Miraculously, I convinced my boy to come close enough so I could reach him. I held his hands, and he screamed and screeched and shouted obscenities and nonsense while stomping on my feet as we walked the two long blocks back to the car. My 5-year-old daughter walked ahead at a safe distance.

I forgot to be mortified or embarrassed. My focus stayed sharp – get to the car, call for help, keep both kids safe. Worry and fear overrode my urge to feel humiliated by the spectacle, even as I vaguely registered the very large number of people gaping at us from both sides of the busy street.

When we got to the car, the impulse to rage and storm still held my son’s hands, feet and even his head, which tried to slam against my body. I could not let go to find my keys or my phone.

My eyes found a woman nearby, a few years older than myself. She regarded us directly but didn’t gape. Her soft body was dressed in earthy tones and the lines on her face conveyed a warmth and fatigue that bespoke years spent mothering. I knew she would say yes before I asked.

“Can you find my keys and my phone in my bag? I need to call his therapist!” I shouted so she would hear me over his rage, but my tone was familiar, as though she were an old friend. She managed to extricate my bag from my shoulder, and for the first time embarrassment crept in – my bag is usually a jumbled mess and now a stranger was going to dig through it.

“Of course.” An eternity of rummaging passed. She could only find my keys. No phone.  The memory landed with a thud – I had thrown it down two blocks away, shielding my daughter from a stick

I imagined trying to make the round trip to retrieve it. Two blocks seemed like a marathon.

“It’s in the grass. In the park by the old railroad tracks. I completely forgot to pick it up. I just forgot to get it.” I think my voice cracked and I’m sure I looked like I was about to cry.

Now her voice had the tone of an old friend. “I’ll be right back.” And just like that, this stranger went to find my phone.

While our stranger was gone, I convinced my son to listen to an audiobook in the car. He zoned out and calmed down, and I knew we would get home. I held my daughter, letting her know the storm would pass and she was safe.

Our stranger returned the phone. She placed it in my hands and I hugged her, shaking with relief I didn’t need make the trip myself.

Three months and multiple hospital stays later, our son and our family are still riding out this particular storm. But almost daily, we encounter a new stranger who shelters us in some way. The advocacy, service, experience and kindness of these former strangers reminds us our community is much larger than we know.


It’s been a pretty rough year.

My son who has autism wasn’t coping with mainstream school and started going part-time. I left my job to become his full-time carer, and there’s been no respite from the stress for months now.

One day I looked at myself in the mirror and almost didn’t recognize the person looking back at me. Gray hair, bags under my eyes, no makeup and a constant feeling in my tummy. I’ve been jittery when I drive. I’m pessimistic and snappy with my hubby over silly things like towels on the floor. I feel dog-tired. I recognize it all too well. It’s my arch nemesis who’s visited me many times before. The dreaded D-word: depression. 

My son lets everyone know when he’s anxious or stressed. He gets it all out there, we deal with it and then he moves on. When he’s anxious he lets me know with every fibre of his being. When he’s sad or angry, he’s unable to disguise it and out it comes like a flowing volcano of emotions. And when he’s overwhelmed with the world and wants to recharge his batteries, I embrace his feelings and give him the time and space he needs.  

I could learn a lot from him.

I tend to try and hide my emotions from the world, even from my husband. I suppose it’s my survival instinct as I try to be the glue that holds the family together. I can’t fall apart. I can’t explode or show how anxious I am on the inside, or tell anyone how I’m struggling just to get through the day. Instead of being open and transparent like my son, I look in the mirror and do the exact opposite. I think, mask it, woman! You’re OK, you have to be. Sort yourself out, pull yourself together!

So I put on my makeup, dye my hair and face the day when all I really wanted to do is stay in my pajamas.

9u8U2wwtxt_t7IB25mpFJBgGgyCfwbiCtgQx8HLPajvR_TCKV0qHfwIpjnIGEYRd6DixDF2W_rf1VrQQhpIBjvm_ZwexDKpZ_04IEdzWjCqIfmjCzPIO3uHxpNp5Na66U7un65Nr2Iobieq-efHuATOrusPO91xN0fRjNLe7aJRr9F_DRmNE6ZvKrEcXg3kzAQPftze8bLGjksKIDUA9knHVrYyOS7E_m Later that day, my teenage daughter was messing with a silly app on her phone that airbrushes out your imperfections and makes you look “perfect.” She took a photo of me and airbrushed it. She got rid of my bags, my wrinkles, my chubby cheeks and my tired looking eyes. I looked “perfect,” but it made me realize the one thing the app couldn’t airbrush out— how I was feeling. 

So instead of trying to airbrush my depression out, I’m trying to learn from my son and do something about it.

And if anyone reading this has been trying to airbrush out their feelings too, please remember there’s no such thing as perfect. We’re all human, and we all need a PJ day every once in a while.

In fact, when my kids are all back at school later this week, that’s exactly what I’m gonna do. I’m going to have a makeup, carton of ice cream, watching back-to-back Netflix kind of day. Like my son sometimes does, I’m going to recharge my batteries and process what’s really happening to me.

I have to accept there will be good and bad days, and that’s OK. My depression is part of me, but my son doesn’t need an airbrushed mom. He just needs me as his mom, plain and simple.

Follow this journey on A Slice of Autism

Living with a rare neurological disorder, there’s so much I wish people knew, starting with the word “dystonia,” a term that poses a mystery to the majority of the population. How wonderful it would be — not to mention a weight off my shoulders — if dystonia elicited immediate recognition rather than a blank stare.

Required to serve as my own spokesperson, I’m forever educating people about my movement disorder. A few years ago, I began to share the twists and turns my life navigates by launching a blog. But I’ll confess, when I leave the online space, I don’t always have the energy or the inclination to deliver a full-fledged dystonia lesson. Occasionally, I take the “easy way out” and succinctly explain dystonia as a disease akin to Parkinson’s. This hardly does dystonia justice.

Then there was the time I found myself knee-deep in “damage control” after someone (namely a member of the opposite sex I met on an online dating site) fast-tracked to Google to gain an understanding of my condition. Dystonia’s medical technicalities stand stark and foreboding in blatant disregard of my desire to resolve as a human being. Fortunately, I pack the tenacity to make my own, more palatable explanation.

Dystonia is not who I am, but at the same, time it insidiously inserts itself into my daily life. If people only knew the victories — large and small — I score every day: the not-so-simple accomplishment of walking my puppy, tackling a flight of stairs in the subway, pronouncing certain words, hanging onto a positive attitude, unearthing the humor in my struggles.

Take something basic like shopping for shoes, which becomes not so basic when your feet are neurologically programmed to behave like temperamental children resisting restriction. Finding footwear that doesn’t further impede my laborious gait presents quite the challenge. Caprice determines which shoes work for me, and I’m inclined to stick with tried and true favorites in defiance of the latest fashions. Out of necessity, I’m practical…I can only dream about wearing heels.

With a myriad of extra efforts and complications dotting my landscape, how I wish the world could see all the moments I master. So often, life is about the little things and dystonia is no exception.

Pamela Sloate the mighty.3-001

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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