The Little Things That Aren’t So Little Because of Dystonia

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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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5 People You Meet Along Your Epilepsy Journey

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You’ve been diagnosed with epilepsy. A diagnosis is a life-changing event. Epilepsy doesn’t always present itself to the world and it can go unnoticed by family, friends and the public. With epilepsy being a part of your everyday life, you’re bound to meet a variety of different people along your journey.

Based on my own experiences, here are five people you’re likely to meet along your epilepsy journey:

1. Those who claim you’re faking.

Having epilepsy is a serious medical condition. As the person living with epilepsy, you know exactly how difficult and challenging living with this condition is. Sometimes, family, friends and the public may not. When a person claims you’re faking epilepsy, it can be hurtful and frustrating. Don’t let inappropriate and disrespectful comments discourage you. Rather, be motivated to overcome your challenges and be the better person.

2. Those who are unfamiliar with epilepsy, yet have a long list of ways they’ve heard puts an end to seizures.

The grapevine. The mighty grapevine of information. We often hear so much information through the grapevine, yet cannot always be certain what is fact or fiction. It’s important to take information through the grapevine with a grain of salt. Not everything you hear or read is accurate. It’s always important to speak with your doctor before trying anything.

3. Those who act interested to learn about epilepsy yet in fact have little interest.

We want to educate family, friends and the public about the condition we live with to eliminate the stigma and the fear associated with it. So what do we do? We talk about epilepsy. We talk about living with epilepsy, how epilepsy personally affects our lives. Some people are engaged and eager to learn all they can so they can help make life easier. For others, since the condition doesn’t personally affect them, it quickly becomes a topic of little interest, which is rather unfortunate to witness for those affected by epilepsy.

4. Those who completely understand your journey.

It’s easy to feel alone within your journey — especially if you’ve never met another person living with epilepsy. It’s important to remember that there are people all around the world who feel the exact same way you do, who completely understand your journey. There are a multitude of communities, groups, etc. Your doctor can even help connect you with a local group to meet people who understand what you’re going through. Within these communities, there are people who’ve been diagnosed, families and even friends of who are broken and have been made whole again. Whatever point you’re at right now, you might find someone or multiple people at the very same point. It’s within these communities that you become motivated, inspired, uplifted, renewed and even strengthened. You have the opportunity to provide the same to others too.

5. Those who are filled with wisdom and inspiration through and through.

It’s always good to have wise and inspirational friends by your side who encourage and fill you with great wisdom. The wisdom of someone who’s walked through life for a longer period of life is invaluable. Having diverse people in your life can be a completely positive experience. To hear the journeys of another opens the door for avenues you may have never expected to find. It could very well be the beginning of a lasting friendship and support.

Experiences with one another help us realize that we are indeed not alone in this fight.

No matter who it is we meet along the way, whether good or bad, allow it to be a positive, learning situation. You’re your greatest encourager. Always be the best you can be. You never know. You might just encourage someone else along the way.

Have you met these people? Who are people you’ve met along your epilepsy journey? Share in the comment section below.

Follow this journey on The Epilepsy Journey.

Do you have a story about your experience with epilepsy? Please send it to epilepsy@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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To the Nurses Who Accused Me of Faking My Seizures

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I know you’re tired of seeing me. I’m tired of being here. As I was transferred from the paramedic’s cot to my room’s bed, I heard the words the two of you exchanged: “You’re faking. You shouldn’t be here this much.”

I wish I was faking. If only I could have explained how my body felt, how tired I was, that I couldn’t see, couldn’t walk, couldn’t follow the doctor’s finger… worst of all, couldn’t respond to your nasty remarks. If I was your sister would you have said those things? Did you know that seizures and the side effects of multiple other chronic illnesses have wiped me out and nearly killed me other times? Did you know my condition has put me in the ICU on that exact same floor? What if I was your friend? Would you have said those things then?

Be brave, brain, we’re stronger than yesterday.

What if you were the one who’d caught me when I ran to the door that day because I knew the seizures were coming? What if you’d heard me ring the doorbell like crazy because I was scared? What if you’d caught me before my head slammed on the cement when I didn’t get inside on time? What if that was you? Would you have said those things?

I just want you to understand that I don’t like making you work.

I’d much rather befriend you in another way. You kind of ruined that chance. Nurses are suppose to have heart, to be nice, kind, caring. I’m sure you had a long shift the day we met, but you two were anything but those things. I laid there, barely able to move, unable to talk and forced to listen to the garbage you said.

Just because I battle something you may not see or understand doesn’t mean I’m faking. Every day I wish I would wake up and realize this was a dream or bad joke. It’s not. I have to eat, sleep and breathe in fear of when the next seizure is going to strike or when my meds will once again throw my blood levels off.

I don’t like seeing you. But when I do, I sure wish you understood.

I know you have a job to do, but next time think before you say something.

Do you have a story about your experience with epilepsy? Please send it to epilepsy@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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What I Will Tell My Daughter When She Asks Me, ‘Am I Different?’

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Today I had a blast watching my 22-month-old daughter during her weekly swimming lessons. She loves the water and enjoys her time in the pool. For one exercise, the instructors had the kids crawl/walk across a floaty and dive into their parents’ arms. The only problem with this is my daughter can’t really crawl or walk yet. She has special needs and has low muscle tone and is developmentally delayed. She had to sit on the edge of the floaty and then fall in my wife’s arms. This made me think about “the talk” I will eventually have to have with her as well as others.

Every parent to some extent dreads certain conversations with their child. There are the ones that start with questions that make you cringe like, “Where do babies come from?” I admit I am dreading those types of chats as well. However, I am more fearful of the other “talk” after my daughter asks me, “Am I different?” It’s a fair and valid question and one that deserves a fair and valid response. Here is what I would tell my daughter and every child or person who asks about her.

Yes, you are different…but everybody is different. Every single one of us is different from the other, and it’s a wonderful thing. If we were all the same, the world would be a boring place. You should never be ashamed of these differences. They don’t make you less of a person and they don’t make you better than someone else. All of these differences make you who you are, and you are an amazing person.

While you can’t do certain things like other kids your age, it doesn’t mean anything. Not every person can do the same thing as the other. This is why you have certain people who are doctors and others who are athletes and others who are painters and on and on. I am very different from your mother, your uncles, your aunts or your grandparents. In fact, I have been called weird before and I take it as a compliment. I think my differences make me creative and personable. We all have our abilities and gifts and you do, too.

When people ask why you are different, I want you to tell them the truth. You tell them it’s due to the way you are and you may not be able to walk the way others do. Or you may not be able to talk the way they talk or process things as quickly. You tell them there is nothing wrong with you, you just do things differently, and that’s OK. It’s important you tell them this because you should never be ashamed of who you are and what you can accomplish.

And finally, the people who really listen to you and understand you won’t care about your differences. They will accept you for who you are because, again, everyone is different. The ones who don’t and choose to focus on people’s differences in a negative way, you let them go on thinking whatever they want to think. Their opinion doesn’t matter and won’t change anything about you or others.

This is how “the talk” will go with my daughter. Of course, it will be followed by a big hug.

During the floaty exercise, my daughter laughed and was excited for the other kids and my wife cheered them on. Then when my daughter sat on the floaty for her turn, the other kids were excited as well and their parents cheered, too. This reminded me that while my daughter is different (just like everyone in this world), she can still be happy and enjoy these types of activities with her peers. And isn’t that what every parent wants for their child — to be happy? I guess we’re all the same when it comes to that.

Chris Rios the mighty.2-001

Follow this journey on Team Bex.

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5 Things I Want You to Know About Sensory Shutdowns

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As a sensory processing disorder (SPD) advocate, people frequently ask me about sensory shutdowns, those neurological episodes in which sensory information becomes too overwhelming to tolerate and the system goes haywire. Let me start by saying that within my role in the SPD community, my mission is to share every single experience of my sensory life with anyone who will listen. I’m totally not shy. I use my training as a mental health counselor and my writing skills to evaluate and capture even the grimiest, buggiest twists and turns of a delayed-diagnosis sensory adulthood to explain every inch of SPD. And nothing is quite as grimy and buggy as sensory shutdowns.

Here’s what I want you to know about these challenging, temporary events:

1. A shutdown is like having a frozen computer that needs a reboot.

Imagine you’re multitasking online. You’re watching “Unbreakable Kimmy Schmidt” on Netflix on mute, playing Yo La Tengo’s latest album on Spotify, browsing BuzzFeed and posting a Facebook update about the hilarious cat video you have open on YouTube all at the same time. Suddenly, everything on your screen freezes because, well, it was all probably too much for your 5-year-old MacBook Pro to handle successfully. Interrupted and frustrated, you’re forced to restart.

A sensory shutdown is when your brain stops being able to take in and make sense of sensory information. Much like your overworked laptop, there’s only so much a brain, especially a differently wired brain, can process all at once before freezing. Become oversaturated with too much input, and you may need a reboot as well.

2. Shutdowns can be both peaceful and terrifying.

I’ve been told by some that their shutdowns are always peaceful, distancing, welcoming experiences that allow them to escape the ceaseless barrage of sounds, sights and movements, almost like donning an insular layer and feeling protected from a sharp winter wind. I’ve experienced a few of these shutdowns; it almost feels as if I am sleepy and just less present in the moment. My eyes become glassy and I stare into space until someone notices (usually my husband, who I call my “Handler”) and points out that I have floated away somewhere into the great unknown. Like a drifting balloon, he always manages to tug my string and pull me back into reality.

Others experience shutdowns that teeter on the edge of panic attacks. They’re vicious, jarring shutdowns that pulse with detachment and anxiety. These are the kind I have most frequently. In my experience, one moment I am handling my sensory environment with at least a small degree of grace, and the next I watch as my functional visual field collapses. I go from seeing full objects to just their parts. I hear every excruciating nuance of sound from all directions, and I cannot find my body in space. I feel lost, confused and no longer present in my skin or in the world. Whereas the first type of shutdown is like a protective distancing of the sensory self from the environment, this second type is a sharp dissection of the self from the environment.

I like to think that shutdowns happen in degrees like this, and some are just more intense than others.

3. Shutdowns are not meltdowns.

Hear me clearly on this one. So many people like to mix these two types of episodes up, and although both are triggered by our experiences with the sensory world, shutdowns and meltdowns are not the same thing. A meltdown is an intense, emotional reaction to sensory input and related, unplanned changes to preset expectations about the sensory environment. It comes on like a tornado of tears and anger and passes through just as quickly, not too dissimilar from a childhood tantrum, although the cause in this case is neurological.

I’ve melted down in the face of intense sound, but I’ve also melted down to unexpected changes relating to my sensory environment, like an unanticipated shift in the location or timing of an upcoming event. Our experiences with sensory input are such that the more information we have about an upcoming sensory challenge, the better we’re able to cope. Structure and familiarity are friends to people with sensory issues both on and off the autism spectrum. And for those of us with SPD, shifts in the structure related to sensory input — whether as part of our familiar routine or an unfamiliar event or excursion — are incredibly uncomfortable. Add sensory concerns to this shift, and it’s no surprise we crumble into a heap of tears.

4. Support during a shutdown can help or hinder.

When I am in the throes of a massive, soul-sucking, detaching shutdown, the most pivotal thing someone can do for me is help me find my way to a quiet, dark, safe place. In this moment, I can’t effectively make sense of what I’m seeing, hearing, touching or coming into contact with, and so a deep squeeze of my hand and a confident, trustworthy companion with a plan of action to take me out of the situation makes this temporary retreat feel less scary and more controlled. Some prefer kind, encouraging words, but some do not. Some want to be touched and some do not. Once again, our sensory experiences vary, and so the best way to help a loved one during a shutdown is to know what works best for them. Pick a time outside of a shutdown when they seem calm and regulated and ask them how you can help the next time a shutdown crops up.

5. Shutdowns are survivable.

Shutdowns have been the bane of my existence for years. Before I came to my senses, I spent all of my time fearing these episodes and making plans to avoid them, whatever the cost. Had I understood them, I would have known that they were ultimately transitory and actually benign. As uncomfortable and terrifying as they are in the moment, a shutdown can’t kill you. It can’t hurt your family and friends. It’s a signal from your brain to you that there’s just a bit too much going on sensory-wise at the moment and that you need to switch gears. You are actually safe in your body, regardless of how raw and exposed you feel. You will survive.

Follow this blog on Coming to My Senses.

Lead photo source: Thinkstock Images

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How I Stopped Blaming Myself for Experiencing Depression

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I’ve always been a self-blamer. I would blame myself for the rain, for my bad mood, for gaining weight. It was always my fault and I thought I deserved to be punished. So when I became ill with depression, it was no wonder I blamed myself for being sick. Unfortunately, this belief lasted throughout my illness and even lingered as I started to feel better. It didn’t matter that I became depressed following a fourth failed frozen embryo transfer, or that my body was reeling from many hormones. It simply had to be my fault.

But the reality was simple: I was sick. Depression severely impaired my thinking and judgment. It was not my fault.

But accepting this has been a continuous process.

For several months after my hospitalizations I was plagued with guilt. I thought I had ruined my then 4-year-old daughter’s summer as well as my husband’s and my therapist’s. I felt severe guilt — guilt about not spending more time with my family, guilt I needed my therapist so much. I had flashbacks to different situations related to being in the hospital and basically felt an ongoing feeling of embarrassment for having been so needy.

But the truth was my daughter had a great summer and her routine was not really interrupted. My husband had a stressful summer, but it was because of illness. My therapist tells me time and time again how there was no reason for her to be mad at me, that I was doing the best I could at the time. The times I can let go of it usually occur after a cognitive exercise of repeatedly telling myself, “I was sick. I was very sick. No one’s life was ruined and there is no reason to blame myself.”

It’s humbling to realize you are not powerful enough to cause depression. This is what I try to hold on to now. It was not my fault I needed the hospital for 12 days last July. It was not my fault my husband and daughter had to get by during those days without my presence. It was not my fault I needed ECT (electroconvulsive therapy) to pull me out of my depression. It was not my fault I was unable to be a good friend during those months. It was not my fault.

I was lucky to have my family and friends to help me as I regained my footing in my life. I worry for other patients with little support, this traumatic period after illness can be difficult. It can be overwhelming at times, but knowing and feeling the love and support of my family and friends made it manageable.

I continue to struggle with self-blame, but I have more skills to use to manage it. I use my “good cognition,” as my therapist taught me, and use the skills I’ve learned to accept my thoughts and feelings. This will always be a struggle for me, but I am proud of how far I’ve come. I feel hopeful in the future I’ll have the ability not to blame, but to accept.

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