Why I Don’t Consider Myself Disabled


I have been in and out of hospitals since I was a very young girl. First, there was the bone cancer diagnosis. Then the chemotherapy. Then the radiation. Then the bladder damage. Then another bone cancer diagnosis, then more chemotherapy, then the amputation. Then the loss of my bladder. Then the kidney failure. And the kidney transplant. And the congestive heart failure.

The list goes on and on. Which is a good thing. It means I am still going on and on!

I just kept doing what I do. Granted, I had many many moments of feeling vulnerable, terrified, isolated, sad, but for some reason, I never ever thought of myself as disabled.

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That is, until I started to get some recognition for my work. I am the first amputee in the U.S. to practice and teach yoga. I have been doing it for a very long time. I didn’t “become” this in order to prove something.

I became a yoga teacher because it felt like a calling, down to the tips of right toes and even the combination of plastic, titanium, polyurethane left toes.

As the recognition grows, I must say, sometimes so do the sensationalist questions.

“What is like to have your disability? How did you handle having such a terrible disability at such a young age? How did you survive?”

And my personal favorite: “Are you afraid for your future?”

“Sometimes. Aren’t you? I mean, if you are asking that question, you must be afraid of something, right?”

Whatevs.

I am a big believer in the power of perception. If you believe something to be true, then so it is. I have never seen myself as disabled, so I have never labeled myself as such.

This has been a big revelation for me. In a world of “whole” people, I wasn’t aware how “disabled” I am until quite recently.

I think I’ll stick with what I always thought about myself. And roll out my yoga mat. It’s time to take a deep breath.

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When My Son Said, ‘You Don’t Know What It’s Like to Have a Body Like Mine’


Dear Trevor,

2014 was hard on you. It was another year without answers, but a whole year in which you’ve grown, and your peers have grown, and you’re realizing that your life is different than theirs. It’s been another year that you have to carry the burden of a body that fights against you, and it’s wearing on your little tender soul.

You have experienced more anger this year. More shame. More fear. More defeat.

When you try to ride your bike, and your sister zooms around the driveway while you watch, it hurts. When you try to ride your scooter, and your sister whizzes off on hers to go play with a friend while you’re still trying just to manage balance and steering at the same time, it sucks your spirit dry.

And when you fall, it hurts. (Not your body, you’re used to falling. )

It hurts your soul.

It’s OK, Bubba. I’m here to tell you that it’s OK.

All year I’ve been fighting your despair, and getting frustrated with you for your emotions. I’ve been impatient with your fear, and fighting your anger. I thought it was because I don’t want you to feel those things (and I don’t), but now I realize — it’s because I am afraid of those things.

Somehow I think that if I can just stop you from being angry, sad, hurt, afraid, embarrassed… that you will be fine. That you will move through life without trials or trouble, and that you will have the life that I envision for you.

I’m promising you now that I will let go of those fears, and just let you feel yours. You told Dad a few days ago:

“You don’t know! You don’t know what it’s like to have a body like mine!”

You’re right. We don’t know. I have been reacting in fear, and forgetting who you are.  You are bright and strong, you are joyful and social, you are fun and active. Somehow I am forgetting to trust those things, and I am panicking that you will become withdrawn, helpless, and bitter.

I will trust you.

We will still push you to be strong, and to be your best. We will still encourage you to try and try and try and try again. We will still expect you to give everything you’ve got, and to refuse to be defined by your disability.

But when you are feeling broken, you can break with us. When your tears come, you can cry in front of us, or you can walk away and cry with privacy. When you’re angry, we won’t tell you you’re wrong. When you’re afraid, we won’t dismiss your fears.

2015 will be a year where you have more room to be you, more space to feel how you feel, and more freedom to figure this out. We know who you are, and we will be here – not to micromanage your emotions and reactions, but to be your anchors, your support, and your sources of strength.

Be patient with us.  We are learning so much with you.

Love,
Your Mom and Dad

This post originally appeared on “Little Blue Engine in Braces.”

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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Why I’m Not Celebrating Autism This Month


For me, Autism Awareness Month is a time of celebration. But I’m not celebrating that fact that my son was diagnosed with autism. That day was not one full of joy and happiness. Today I’m not celebrating autism. Today I celebrate my son, Brandon, and all his accomplishments. He works so hard every day to be self-sufficient, independent and to communicate.

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Imagine the frustration this little boy has when he can’t tell me when he wants something, that he needs something, that he’s not feeling well or that he’s simply excited. For example, when Brandon wants me to push him on the swing, he has to walk all the way across the backyard to come grab my hand, walk me back over and put my hand on the swing. Imagine if every time you needed something, you had to walk all the way over to someone, take their hand, lead them to what you want to tell them and hope they get what you’re asking for.

If Brandon wants something to eat, the only way he can tell me what he’s craving is if he can see it in the pantry and put my hand on it. He’s melted down so many times because I can’t for the life of me figure out what he’s looking for.  He can’t say “gummies,” so, if he really wants a packet of gummies and they’re hiding somewhere in the pantry, he just won’t get them.

March was an awful month for Brandon. He was despicable. Unbeknownst to me, he had an ear infection and ruptured ear drum. He was in pain and uncomfortable for weeks, and I hadn’t the faintest clue there was anything wrong with him. No wonder he would break into full meltdown mode without warning.

I celebrate this boy and all others who are affected by autism who have to work so much harder to do things we take for granted. You’re determined. You’re courageous. You’re strong.

This post originally appeared on Ramblings of a Special Mom.

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The Lifeline That Helped Me Find My Way Out Of an Eating Disorder


A year ago today, I graduated from treatment.

Treatment. It’s a funny word, isn’t it? Treat. Although in my case it’s appropriate. Nearly every day for over two months I was prescribed ice cream for my recovery.

The journey began when I was 14. I was at summer camp in Colorado getting ready for the camp dance. All the girls in my cabin were trading outfits and I realized, disappointingly, that I couldn’t fit into anyone else’s clothes. I spent the evening shyly resting against the wall while the other girls flirted and danced and disappeared in the dark with boys from the neighboring camp. I couldn’t wait to get home to hear all about their night.

The next day at lunch I was halfway through my meal when I looked around the table and noticed that I was the only one eating a burger; every other girl had ordered a salad. Clothes, boys, burgers… and the lightbulb was on. I don’t know where I got the idea, but when I finished my food I went straight to the bathroom to throw it up.

Quickly, this became the way I funneled all my feelings, managed all my stress. Too much homework? Eat, throw up. SATs? Eat, throw up. Feeling left out? Eat, throw up. Too excited? Eat, throw up. I always thought each time would be my last. Throughout high school, my friends and I would make fun of image-conscious girls with obnoxious eating patterns. “Small salad, please, dressing on the side?” Blech. What a bunch of superficial losers. So I’d eat my Chipotle burrito like all the cool kids, and then…

When college began I promised myself a clean start. I don’t know how long that lasted, a month, maybe two? I got assigned a roommate with another eating disorder: anorexia. She’d pick on one bowl of cereal all day long. While I was doing my best not to over eat, I found myself feeling envious of her self-control. Eventually, the embarrassment of being so much bigger (in retrospect, a perfectly healthy size) than my tiny beautiful roommate got to be too much. I devoured her box of cereal and then some, and threw it all up.

And on it went. School. Sports. Jobs. Relationships. Family. Everything that could possibly trigger my insecurities did, and I managed them all the same way: day after day, alone in a locked room, binging on foods I wasn’t allowed to eat and then hunched over and clutching a porcelain bowl, begging for help from a God I didn’t even believe in.

I didn’t tell my parents until I was 25. My boyfriend at the time had been amazing at helping me keep it together, but when we broke up, I had a full relapse. I was so scared I finally called my mom and dad to ask for help. They did their best for me, but I quickly retracted from them, too, promising I’d gotten a therapist and everything was under control. The therapist only lasted about 10 sessions before I was back at it.

By the time I was 30, I had enlisted many more people to help me. My best friends knew, and were doing everything they could, I finally found a therapist I loved, and even though my outward behavior hadn’t changed much, my internal commitment was growing. When my dad’s illness had taken its toll and he was in his final days, I made the decision to make his death mean something. If he wasn’t going to be here to look after me anymore, the least I could do was to look after myself. I made a vow never to make myself throw up again. Ever.

And I kept it, mostly. One and a half times over the next two years I slipped up and I immediately told my support people. Though the purging had finally stopped, my recovery was tenuous at best because I was still restricting my food regularly, making excuses for skipping breakfast and lunch because “I ate too much yesterday.” Or “I’m going out to eat tonight.” I over-exercised and dieted. Except for throwing up, I did whatever I could to keep myself from gaining weight.

But it didn’t work. The internal struggle for permission, for myself, from myself, eventually got to be too strong, and I found myself acting out everywhere, sneaking food when people weren’t looking, binging late at night, and absolutely totally unable to stop myself. And hating myself for it.

One day, in October, 2013 I was with a group of friends who support one another to live a conscious life. It was my turn to receive feedback and one of the members, Jim, said the words I had apparently needed to hear: “You are a beautiful woman. You are a powerful manifestation of feminine essence, but you are f*cking it all up somehow. Maybe it’s your food thing, I don’t know, but I want you to find the best place in the world that deals with this stuff and get it taken care of.”

By December, I found myself standing on the doorstep of Monte Nido Eating Disorder Treatment Center, about to turn over every ounce of control in my life to receive the help I needed.

A year ago today, I graduated from my residential treatment, stepping down to receive three more months of out-patient care before moving back to the Bay Area in May.

When I woke up today, I had no intention to share this story publicly. I wasn’t sure if I ever would. “You’re not really one to hide things,” a friend said to me recently (about something else). I laughed. So much of my life has been lived in hiding.

But I don’t want to hide anymore.

I believe I was literally loved back to life by the people close to me. No matter how much I pushed them away, my mom and Sue never stopped asking how I was doing. I’ve lost count of the number of times I fell completely to pieces in Scott and Joanna’s arms. And so many others who have tried to love me over the years helped get me to the place where I could finally receive that support.

If someone you love has an eating disorder, don’t try to fix them; they already feel broken. And if you have the courage, don’t ignore it either; silence is shame’s best friend. Ask. Listen. Tell them you see them and you love them as often and in as many ways as you can. Even if it feels like the message isn’t getting through, the person you care about is trapped in there somewhere, starving for love.

It may take years, it probably will, but that love is the lifeline they will use to find the way out.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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The Heartwarming Way This Veteran Explains His PTSD to His Daughters


When Retired Army 1st Sgt. Seth Kastle returned home to his family in Wakeeney, Kansas, after his latest deployment, he wasn’t his old self — he often felt angry and sad for no clear reason. After 16 years in the army, Kastle was living with post traumatic stress disorder (PTSD). He knew his condition was impacting his children but didn’t know how to explain it to them.

Unable to find the resources for what he needed, Kastle decided to write a book to help him explain PTSD to his kids. “Why Is Dad So Mad?” is a picture book that tells the story of a family of lions who work together to help Papa Lion cope with his PTSD, NBC News reported. Papa Lion is illustrated with a burning flame in his chest.

“In my book, I talk about the fire inside Dad’s chest. To me, that’s what it feels like,” Kastle told NBC News.

Kastle added that he hopes other family members returning home will be able to use this book as a resource. He is already working on his next book, which is about military mothers with PTSD, NBC News reported.

The book is already resonating with Kastle’s daughter, Raegan. “No matter what, I know there’s love,” she says in the video below.

Hear more about Kastle’s heartwarming project in the video below.

“Why Is Dad So Mad” is available now at Kastle Books.

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The 6 Stages of Receiving a Down Syndrome Diagnosis


The moment your baby is diagnosed with Down syndrome, the universe injects you straight into your heart with the most powerful drug known to man; let’s call it “Enhancenon.”

In small quantities, this drug causes happiness, joy, euphoria, but an overdose of Enhancenon of this magnitude has some profound side effects on 98 percent of the population. Side effects that might be experienced vary vastly in each individual but can include any or all of the following:

Stage 1: Rage, fear and sadness – in any quantity

These emotions are so enhanced, you might feel like you want the world to swallow you up. You might feel you want the world to swallow your baby up, just to make these feelings go away. You might cry uncontrollably or be furious beyond anything you have ever felt before. You might feel grief – this baby is not what you had planned.

Don’t fight these feelings – they are all side effects of the overdose. They are not your fault and they certainly are not something that you can be expected to control at this time.

Stage 2: Heightened awareness

Suddenly everything you hear is “Down syndrome.” Friends especially will relay stories of knowing or having come across a person with Down syndrome. The diagnosis becomes a hot topic. Your eyes and ears pick up and seek out anything linked to the diagnosis and hawk-like you will see and hear more than you have ever done before.

Our advice at this time – FORGET everything you have ever heard before or any assumptions you are making now. Your perception will be skewed because the overdose is still coursing through your veins.

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Stage 3: Thinking you are a fortune teller

You will look to an unknown future and think you know what is coming. You will see and plan a future that you think is waiting for you.

Try and ground yourself at this point. Without this diagnosis, you would be marveling at your baby’s tiny fingers and tiny toes. You would be happily examining nappy contents and laughing at baby farts. Try and pull yourself back into the here-and-now and do these things.

The hallucinogenic qualities of the drug is strong, but resist the temptation to to map a future for yourselves and your baby, which is no more possible now than it might have been without the diagnosis.

Stage 4: The “fix” stage

You might become obsessed with Googling, obsessed with finding ways to help your baby. Drugs, physio, speech and language, portage, tests, vitamins… STOP! Enjoy your baby. You cannot cure Down syndrome and right now, your baby is a baby and needs you.

Deal with the here-and-now. Deal with any proven medical problems, but the rest should be as it would have been without the diagnosis. Cuddles, cuddles and more cuddles. Let your baby lead the way and it will all fall in to place.

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Stage 5: Opening doors

As your confidence grows, the drug allows you to step outside your comfort zone and make some connections. Slowly, there might be a little prick of realization coming through the fog: this baby is opening your eyes to something new. It might be frightening, it might be uncomfortable at first, but out there is a whole multinational, multicultural family waiting to embrace you.

Stage 6: Delirious pride

When you have reached this stage, your body has almost metabolised the drug enough to function normally again. You will see your baby smile or sit up or roll or put food in his or her mouth and your heart will burst with pride. The pride will come from so deep inside that it might make you weep.

The pride will be so much more enhanced than if your child hadn’t had the diagnosis. Now the fun bits begin and your eyes will sharpen and you will see your baby! Days will come and go and the diagnosis will not be at the forefront of your mind; your baby will be!

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The End

But really, the beginning…

This is the start, the start of your very amazing, wonderful journey together. The day that life overtakes fear, the day that love overtakes presumption. Enjoy it.

Once your body adjusts to the huge levels of Enhancenon, you will look into the eyes of your child and realize that this is the child you always wanted. You will feel much more at peace, much calmer.

The fact of the matter is that, occasionally, Enhancenon will still cause flare-ups of any or all of the original side effects, but for different or altered reasons. As for what Enhancenon is… it is pure, undiluted love.

When you finally adjust to this new life, you will realise how much better it has become – all because of this little, tiny, unexpected diagnosis that means so little in the grand scheme of things. You will end up feeling grateful and realizing that you have so much more love in your life now than you ever did before. Thank the Universe.

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This post originally appeared on Future of Down’s.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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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