10 Lessons I’ve Learned From Having Multiple Sclerosis


Dear Multiple Sclerosis,

You, my frenemy, suck. You’re a selfish, sneaky, hag that seemed to creep in in the middle of the night and steal so many things I hadn’t even realized yet were dear to me. You’re like the Grinch pilfering children’s Christmas gifts. You plucked my dreams and goals, tossing them away while you made your escape. For a period of time, this crushed me. My soul, my confidence and my drive had all been shattered. I was lost, scared and completely unsure of what to do to get myself back to “good.”

You had an arch enemy though, and he had within himself your kryptonite. My beautiful little boy, his unshakeable spirit, the hope that shone through his innocence began to combat your negativity. When I would wake to his smile and hugs, I knew without question, I was stronger than you. And he, well, without even knowing it, he was stronger than me. As my gait got better, my fine and gross motor skills came back more easily, and my word recall did too. You no longer had a firm grip on me.

I call you my frenemy because, in hindsight, there are lessons I wouldn’t have learned without you entering my life. I mean, shit, I’d like to think there were better ways to learn these things, but if you were the only teaching candidate, then thanks for taking the job.

Some people age without ever learning what’s truly important in life. Some die before they have the chance to be truly happy. You prevented me from meeting that fate. You opened my eyes to certain truth:.

1. Being efficient and particular are great qualities at work. But don’t bring those things home with you; your children and your family deserve the ability to not fit a mold, to not have their own creative breath stifled.

2. Structure is good; it has so many positive effects on us. But winging it and breaking the barriers is where the best memories are formed. Having breakfast for dinner, running outside in your pajamas to dance in the rain with your kids, sleeping in a living room fort for three consecutive nights — these are the things you and they will remember when they reflect on your time together.

3. Talking is amazing; communication is key in the health of any relationship. Listening is the cement that seals the cracks of your foundation when it begins to break. Open your ears and close your mouth.

4. Ask questions, use your imagination. Let your children lead you. Play! Too often we “need to” do dishes, laundry, sweeping first. Unless it’s putting out a fire, it doesn’t need to be done first. Your kids need you first. Always.

5. Tell your kids how much you love them. Stop moving, sit down with them, read, cuddle, kiss their forehead. And then tell them what they mean to you. Take no moment for granted; it truly may not come again.

6. Pray. Pray to whoever. If it makes you feel better, pray and give thanks. It forces you to find the beauty, to acknowledge the good and set aside the bad, even momentarily.

7. Count your blessings, not because you’re luckier than myself or that guy in a wheelchair, that woman missing her arms, those people with cognitive impairments (you’re not) but because all of those blessings are privileges not rights. They’re not guaranteed; they could be taken at any moment.

8. Spend a little time acting like a hippie on acid having a really great trip (just don’t actually do the acid). Meaning, enjoy your senses, the feelings you have when you touch someone’s cheek, kiss your partner, hug a family member, hold your child close and smell their sweet little head. Commit these things to memory. When you need them, they will carry you so much further than you ever could imagine.

9. Smile. Be accepting. Don’t judge. Don’t put up with anything that makes you uncomfortable or causes negative feelings. Recognize those who are meant to be permanent in your life and those who aren’t; be grateful for them regardless. Express your feelings. Let no one walk away not knowing you love them. Advocate. Hug people even when it makes you uncomfortable… especially when it makes you uncomfortable. Stop being greedy, realize how good you have it. Find ways to bring yourself peace; you’re the only one who can do this, no one else can, and no one can fault you for living peacefully.

10. Love. Love with your whole heart.

MS, you’ve taken, but in the absence of the things you stole, more important and even better things were able to shine through. New dreams and goals, a happier existence were all born. So my frenemy, I might hate your guts for showing your rather ugly head, but thank you. For everything.

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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 to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How Standing On a Stage With a Shoebox Helped Me Become a Self-Advocate


Bill and I were the best of friends throughout college. We met at a time in my life where I was trying to find out who I was and how I was going to survive in a world where I would face extreme prejudice, given my visual disability.

October of my freshman year, I joined a community service project, where I met Bill — a slightly older gentleman who used a set of purple crutches as a second set of feet. I was to be his mentor, so the program said, but the roles were actually reversed.

“Hi, my name is Billy, and I am a self advocate,” he said with great pride. “I have my own apartment and work at a movie theater.”

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He went on and on about his accomplishments in detail — stuff the typical world would take for granted. He also mentioned these advocacy conferences he goes to and wanted me to join him for one. Although the deadline for me to join that year was past, I told him I’d give it a shot the next time one came around.

The year passed, and we became close friends, hitting up Starbucks every now and again for a latte before going to the movies where he worked. We spoke about many things, from my life at the college and his life trying to make friends and be successful. I told him how ashamed I was of being disabled and his reassuring tone told me, “Everything will fall into place if you reach for the stars.”

It kept me from giving up on myself in my times of doubt.

When October came, Bill passed me an empty shoebox from the closet and told me to fill it up with things that meant something to me so I had it for the conference. I thought it was a display piece and managed to dig up some objects for the box. These included my college hoodie, my hospital ID from my work study, my sketch book, some Disney stickers my parents sent in a care package and some other things.

I got to the conference center the next day. I asked random hotel staff where this box display thing was, and nobody would tell me. Nobody knew a thing.

That was when Bill came wheeling from behind and told me, “Not yet.” He had me place the box in his tote bag.

“But your bag is empty,” I said, thinking he was going to make a box with me.

“Oh, I did mine years ago. Let’s grab some coffee and head to the room. It’s about to start.”

So I entered the room full of about 100 or so people with varying disabilities. None of them, with the exception of a few from the group, had a shoebox.

Then it dawned on me.

“Oh, hell no! He seriously didn’t do this to me,” I thought. I would be one of the people presenting.

The shoebox, low and behold, was an “about me” box, a tool that made it easier to explain your story to others. Like a show and tell, but in this case, it emphasized more on the telling.

I gave Bill a look, and he mouthed at me, “Just trust me.”

I let some others ahead of me so I could get the feel of what needed to be done. One gentleman, who happened to have Down syndrome, showed off his McDonald’s employee hat with the reward pins on it. He also had some Special Olympics medals. Another girl had autism and showed off some things she loved, including her Hannah Montana CD. They showed off everything with pride, which was something I lacked.

When it was my turn, Billy gave me a nudge and sent me on my way with my box in hand.

“Hello,” I said, as my voice echoed back to me from the microphone. Just as I was about to step back and shake my head to say “No,” Bill chimed in with “You go, princess!”

And so I began.

“My name is Amanda. As you can hear, my best friend put me up to this. “

The crowd laughed.

“I am here to show you what’s in my box, the things I am proud of. I am a college student in my sophomore year studying advertising communications with a minor in psychology. I also work at the children’s hospital where I help kids keep their mind off their illnesses by playing with them and doing art projects. I love art, and I draw a lot when I’m not busy at work. I have a dream of working for Disney some day, and I plan to do this despite my disability. I’m legally blind, and it’s hard for me to see things. It’s hard for me to admit it. I play my disability off as if it’s nothing. I never felt comfortable telling my story… until now.”

I showed off the remainder of my box and wrapped up my speech. And as I did, I saw a few stand as they cheered, with Bill rolling up to me to give me a hug afterwards. “I knew you could do it, Mandy!” he said.

The year I was set to graduate was the year I nominated Bill for a leadership award, a high honor given every year at the conference to someone who helps others stand up for themselves. It was my way of saying “Thank you,” as I was set off to explore the world on my own. He got it.

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It’s been about seven years since he won the award, and throughout everything that’s played on in my life since then — from crappy relationships to the constant job hopping and finding my niche in this world — I look back at that day with the shoebox in hand, the day I learned everything was going to be all right, the day I became a self-advocate.

I want to give special thanks to Bill and the wonderful people at Advocates in Action Rhode Island for all you have done to help me become the person I am today. It’s a great organization with a lot of heart.

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Why I Don’t Regret Having PTSD, OCD and Depression in My Life


Dear PTSD, OCD and Depression:

I’ve known you all for a long time, even when I didn’t understand you.

I knew you were there for me, just not in the way a friend would have been.

I learned to ignore all three of you with the help of alcohol.

For many years I thought I was just drinking to have fun. In reality I was drinking to forget and cope with the evil roots you’d planted in me.

Post traumatic stress disorder (PTSD), you were a tough one to learn to face. Since I was a kid, I let you get into my head and dictate my life. I had many sleepless nights because of you, and I learned to surrender to your thoughts. In a way, you made me feel like I didn’t deserve to live.

Obsessive compulsive disorder (OCD), I know I used to make fun of the fact that I couldn’t function without you, and in a way, that’s how it was. But you also allowed me to have some control of the things PSTD wouldn’t allow me to control. So I don’t really dislike you all that much. I just wish you hadn’t been so persistent.

Depression, you were always there, almost dormant. You invited yourself to be a part of my life a few years after I’d stopped drinking. You brought so much pain; I almost let you take my life to void those feelings.

Despite the suffering and the pain you three imposed on me, I don’t regret having you in my life. I know I’m a better person because of what you put me through.

Because of you, I found myself, and with some good people’s help, I was shown how strong I am.

You’ve taught me to be compassionate and how to find a purpose and look at life with optimism.

I’m thankful I didn’t surrender to your perseverance and desire to fully control me.

You’ll always be a part of my past, present and future. But now you’re just a reminder of the struggles and triumphs. I’m happy to tell you that I feel victorious and ready to help others overcome you. This is all because of your lessons.

Thank you for giving me a reason to be happy and be grateful.

For all of March, 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 to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Just 10 Seconds of This Could Make This Autism Journey Way Easier


Some of the better moments of my parenting life have boiled down to this. Someone took ten seconds out of their lives to help us out. To accommodate us. To include my kiddo.

A simple gesture like the teenager who broke from her gaggle of friends to hold open the door for me when I was carrying/dragging my melting-down kiddo from the mall. She probably went right back to her friends and her life, but it made all the difference to me. Two years later, I’m still thinking about her.

“Hang on. Let me see what I can do.” I’ve heard this statement a lot when advocating for my kiddo. Sometimes they come back and they can do something. Sometimes not. Either way, they’re trying. I appreciate the effort regardless of the outcome. They’re taking ten seconds out of their day for me.

Imagine what you could do with ten seconds for someone else. It’s so easy in this autism life to dwell in all the times we’ve been shunned, scorned and screwed over. What would happen if we all shifted that attitude over to ten seconds of kindness? Not just helping each other out but everyone.

What if ten seconds of kindness meant accepting when something couldn’t be done for us the way we asked? What if we took that angry energy and channeled it into looking for a compromise?

What if we just accepted that people ask for help in different ways because their needs are different? What if we didn’t shun what they saw as solutions simply because it wouldn’t work for us?

What if we all just took ten seconds to take some deep breaths and chill the hell out a bit?

This post originally appeared on Autism With a Side of Fries.

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This Young Man Just Found Out His Life Expectancy May Have Doubled


Gabe+Film+Poster When Gabe Weil was diagnosed with Duchenne muscular dystrophy, doctors said he most likely wouldn’t live past 25. The genetic disorder led to progressive muscle deterioration and weakness; Weil began using a wheelchair at age 10 and required a full-time caretaker.

“I can’t stand up. I can’t move my arms. Just to breathe requires effort,” Weil says in video below. “When I was 15, my heart stopped and I nearly died.”

Despite a bleak prognosis, he set out to graduate college — in December 2013, he earned a degree from Washington University in St. Louis.

Right around that time, doctors told Weil he’d been misdiagnosed — they now estimated he’d live into his 50s. For the first time, Weil had to think about his longterm future. What would he do with his prolonged life? 

Weil’s journey is now subject to an upcoming documentary — “GABE.” You can watch the exclusive trailer above.

“GABE” is directed by Luke Terrell, a 23-year-old from Chicago, who first met Weil when he volunteered to be his notetaker and tutor in their junior year of college. Terrell knew immediately their relationship would extend past class — the two became quick best friends. The young director set out to help tell Weil’s story.

“Every interaction with Gabe, especially early on, left a deep imprint on me. The way in which Gabe navigates the world, both physically and emotionally, is so different from what I knew,” Terrell told The Mighty in an email. “It forced me to reevaluate my life philosophy and develop an intense appreciation for time.”

Terrell hopes sharing his friend’s story will help people unfamiliar with the disability community realize that we are all humans.

“Stereotypes exist for one reason only: a lack of exposure,” Terrell told The Mighty. “Gabe is not someone who wants pity. He has passions and interests. He has dreams.”

Weil doesn’t consider himself a hero, but Terrell disagrees. He says the reaction to the film so far, particularly from people living with muscular dystrophy, has been inspiring. Make sure you check out the first “GABE” trailer above.

“I’m just a guy trying to figure out my purpose in life,” he says in the clip. We’re certainly excited to see where he ends up.

The film is almost complete and filmmakers have recently launched a Kickstarter campaign for finishing costs.  You can learn more about the film on its website and also on Facebook.

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When I Thought My Daughter’s Muscular Dystrophy Crushed All Our Dreams


Dear Congenital Muscular Dystrophy,

You came into our world and crushed all our dreams. You changed the way we perceive a lot of things, the way we think about a lot of things. You forced us to alter our definition of “normal.” You made me cry rivers and gave me heartache I didn’t know was possible. Then you broadened my mind, my way of thinking.

Between January and September 2013, I would draw pictures in my mind of my daughter and her soon-to-come sibling holding hands and walking side-by-side, chasing each other around the house, laughing and playing. Then you stormed into our lives unannounced and walked all over my dreams, ripped my heart out and told us you were here to stay. Forever. I didn’t quite grasp that initially and did everything in my power to ignore you, pretend like you were not there staring me in the face all day, every day.

Eventually I guess you grew on me. I learned to accept your presence in our lives and started to see that maybe you weren’t entirely to blame for my misery and distress. Once that happened, you started to gradually alter my perception of my dreams. My daughters still laughed and played and held hands. You showed me it wasn’t you who crushed my dreams — I, in fact, crushed my own dreams when I was ignorant enough to believe that Celine’s entire life depended on bipedal locomotion.

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You shed light on Celine’s incredible mind, her bubbly personality and her sense of humor, which was apparent before she even turned 1. You reminded me that it was the brain that achieved miracles, not the legs. Walking is merely a form of transport, and if her legs can’t transport her, a wheelchair will do the job.

I feel bad for despising you so much initially, CMD. I can’t say I love you or that I don’t wish you would miraculously disappear, but I don’t think your so bad anymore. You’ve only been with us for 18 months, so maybe it takes more time; maybe I need to put in more effort to accept you, but I’m doing everything I can. Maybe over time as Celine achieves more, I’ll build more strength and be able to put in more effort. Maybe. I don’t know…

Sincerely,
Celine’s Mama

For all of March, 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 to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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