A few months ago, I was walking along McCarren park in Brooklyn when I got a phone call from my mother that shook me. My uncle was diagnosed with ALS, she explained. It was Friday afternoon; she had waited to tell me until after work because she knew I’d be upset.

What started as a softball injury led my Aunt Patrice and Uncle Skip down a long and dark road of doctor visits, worry and ultimately a terrifying prognosis. My uncle, a cheerful and charismatic man in his 60s with an appreciation for red wine and a love of sports, had gone to the emergency room after being hit in the eye with a softball during one of his games. As it turned out, he was unable to avoid getting hit because, for some reason, his right arm didn’t respond in time to deflect the ball.

The weakness and lack of control in his right arm continued and eventually spread to the left. Several doctors told him it was ALS, and there was nothing to do but wait until he developed more symptoms. They gave him three years to live.

I had so many questions. I’d never heard of this disease before, either by the name ALS or “Lou Gehrig’s disease.” All I knew was that it would claim my uncle’s life and leave him paralyzed and helpless in as little as two years.

I did some tentative Google searches that left me horrified and upset— pictures showing completely immobilized and dependent beings who were playing sports and living normal lives just a few years earlier. I felt terrible for my uncle, who faced imprisonment in his own body, but I felt worse for my aunt, who would suddenly have to go from wife to caretaker.

Screen Shot 2014-10-24 at 4.38.51 PM

 

So little is known about ALS; my aunt struggled to find information. Securing funding for research into a cure has been difficult because the disease affects only 30,000 people in this country, according to The ALS Association. It’s rare, and it’s brutal. Only about 20 percent of people with ALS live five years or more past the time of diagnosis, and only ten percent will survive more than ten years.

As the weeks went by, I had sorrowful phone calls with my aunt, both of us skirting around Skip’s health in the beginning but ultimately ending the conversation with sobs and words of encouragement. I dissolved into tears at home, out with friends, at work — whenever I pictured my aunt and what lay ahead for her. Hours of care-taking, countless  trips to doctors, high medical bills, having to quit her job to watch the man she loves deteriorate before her eyes. I felt helpless.

Then a few months later, I began to see videos popping up on my Facebook newsfeed of people pouring water on themselves. I was surprised the first time I watched one all the way through and heard the drenched participant talking about ALS. Even more powerful was the growing trend of ALS patients participating. Soon, the Ice Bucket Challenge was everywhere, clogging Facebook, going viral on YouTube, filling Twitter with links about how to donate. Even those complaining about it made me happy because they were still talking about it, still bringing awareness to an unheard-of illness.

The timing seemed unbelievable to me — just as this insidious disease had descended upon me and my family, the world was doing something about it. I felt like I wasn’t alone.

It was right around this time, when the Ice Bucket Challenge was gaining steam and ALS was on the lips of so many, that it happened. We found out Skip was misdiagnosed.

A research doctor found nerve regrowth in my uncle’s arms. With ALS, nerves don’t regrow; they continue to relentlessly die off. A phone call from my aunt, giddy but “cautiously optimistic,” left me speechless.

Relief doesn’t come close to describing what we felt. My uncle most likely suffers from a nonfatal condition called brachial neuritis, an inflammation of the brachial plexus that causes shoulder and arm pain and weakness. But there’s still a small chance it could be a rare longterm form of ALS. If this is the case, my 67-year-old uncle could easily go another 20 years without showing any real symptoms.

223725_10150266356061186_2737998_n

I feel so lucky, but I also feel for those who weren’t as lucky. I have a unique window into the terror and despair of an ALS diagnosis. I know what it’s like to feel the shadow of this rapid and fatal condition cast upon your family. I know what it’s like to hug someone you love and wonder whether a year from now they will still be able to put their arms around you. I’m so fortunate because all I had to do was wonder, while so many others experienced these things firsthand.

For all those who didn’t get to feel the sweeping relief of the words “new nerve growth,” who do have to experience the swift and devastating effects of Lou Gehrig’s, I am so sorry. It’s in honor of all of you that I participate today in the Ice Bucket Challenge. For all of you, who I was so nearly one of.

 

If you’d like to make a donation to the ALS Association, head here.

Live Mighty. Like us on Facebook.

RELATED VIDEOS


When the parents of an 8-year-old boy with autism learned that he wanted to go see a Justin Timberlake concert for his birthday, they had no idea that JT would give their son the best surprise he could have imagined.

Earlier this week, during the show in San Jose, California, Timberlake asked the whole crowd to join him in singing “Happy Birthday” to Julian.

In a blog post describing the moment, Julian’s mom, Marika Rosenthal Delan, wrote that she was concerned about bringing a young boy — especially one with autism — to an adult concert. She said she was worried about her son’s “obsessions, his volume, his repetitiveness, his clumsiness, if he would spill someone’s drink and if they would be unkind to him.”

Her fears were put to rest when the girls sitting in front of them, whom she thought Julian had been annoying the most by constantly kicking their chairs and yelling loudly, got the singer’s attention and kindly urged him to give the boy the birthday gift of his life.

The touching moment can be seen in the video below, which the family posted to Facebook.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Liv_Dad

A long time ago, I made a promise to Livy that I would always be there for her. I have kept that promise. Now it is time to take it one step further. It is not enough to just be there for her, something must be done. Lemonade for Livy was inspired by Livy and her amazing spirit. Its foundation is built on a sister’s love and a mother’s devotion. It is also based on my promise. Lemonade for Livy is fulfilling that promise by bringing people together from across the country to be a part of something meaningful, to create epilepsy awareness and to raise funding for research so that a cure can be discovered. If you have not yet registered your stand or party, I encourage you to do so. And please share with others so that we can spread epilepsy awareness.

This is the first time I have written about the promise I made to Livy years ago and what it means to me. Livy’s epilepsy has changed me. And now it is time to fight back.

A Father’s Promise

Livy, from birth I have watched you.
Stiffening, shaking.

Everything new.
I am scared.
What do I do?
I am not ready.
I look in the mirror, eyes glossed.
Tears, I wish they were happy.
Why, why is this happening?
Spirit crushed.
I am lost.
Doctors, EEGs, surgeries, shunts, oxygen machines, hospitals, medicine pumps.
Beeping, would someone please stop the beeping?
I hold my breath when you do.
When will it stop, when will the seizure stop?
Ashen, you are ashen.
Finally, it breaks.
You are back.
Where did you go?
Do you know?
Do you know what happened?

Time is stolen.
Tick-tock, lives torn apart
10 seconds, 10 minutes, 10 hours, 10 days, 10 weeks.
Stolen.

But look at you, Livy.
You amaze me.
Your smile. Your gorgeous, beautiful smile.
You light the room, you light my life.
I know you are back when you smile.
It is your signal that all is clear.
The monster is gone.
For now.
Back to the closet, under the bed.
Hiding, lurking in the shadows.

Epilepsy, you are the nightmare.
You terrorize our children.
Waiting, always waiting.
Constant vigilance.
I know every move you make.
I thought…
Did you see her flinch? Is that a new twitch?
Changing, morphing.
Always one step ahead.
But someday, somewhere, I will catch you.
You think you are free.
Turning lives upside down.
Striking whenever you please.
No more. No longer.

I was afraid.
I saw eyes that were not Livy’s, quivering, bouncing.
That look. It was not her. It was you.
Now I see through the fog.
I am emboldened.
The fear I once felt, tucked down deep
Now burning, boiling, a yearning to do more.

Epilepsy, you picked the wrong dad.

I did not ask for this.
But I accept it.
I accept your challenge.
You give me purpose.
Was that your intent?
I do not think so.
You may have her now, but I am coming for you.
You have stolen from me.
My daughter’s innocence.
A life of peace.

I will not give up.
I will not relent,
I will never give in.
You have awoken me, a passion I never knew.
As long as I am here, I will fight you.

Yet you are a coward, you attack our youngest and most at risk.
No matter sick, hurt, asleep in their beds.

At night I check, chest rising, skin warm,
What would I do if she took her last breath?
It happens, the ultimate price.
I have read stories, so many stories.
The pain, the anguish.
I hurt for them.
I am angry.

You made me.
I am your enemy.

I am not alone anymore.
I will gather determined mothers, fathers, sisters and brothers.
Warriors in your throws aching to break free.
You have no idea what you started.

Think Livy is your victim?
You are wrong, very wrong.
She is a Hero, my Hero, with the power to inspire and give hope.
She is stronger than you could ever dream.

You used to make me cower, retreat.
But now I am emboldened.
The scars burn and I remember.
Oh do I remember.
Livy bears her scars, physical, emotional.
What you have done to her.
Her little body.
You broke her so many times.
My God, what I have witnessed.
My heart and soul are changed.

But you will not beat me.
I will chase you and never stop.
Wherever you are, I will be there.
You have found refuge in the shadows.
But no longer.
I will bring you to the light and show your true colors.
My color is purple through and through.

If our Warriors falter, I will be there to lift them up.
To tell their stories.

This is your last warning, Epilepsy.
I am here to make my stand against you.
I made a promise to my daughter.

This post originally appeared on Livy’s Hope.

Meet more Mighty dads. Like us on Facebook.


In the last two years, Debbie Rasiel has traveled through six countries to photograph families affected by autism. She’s met children across the spectrum — some don’t talk; some have physical, maybe even violent, outbursts. She’s met their parents and siblings, too — with a translator, she’s spoken to many of them. She’s watched and learned about different types of therapies available in countries like Mexico, Iceland and Indonesia. She’s experienced differences in culture and language, in weather and in class.

“The thing is, it’s always so similar,” Rasiel, 53, told The Mighty. “At the end of the day, even with the cultural differences, it’s the same. It’s a mother who is worried about her child’s future. It’s a special needs family. It’s autism.”

The New York City-based photographer calls her two-year endeavor, “Picturing Autism.” This past May, it debuted at SOHO20 Chelsea Gallery, but the project is ongoing — Rasiel is currently planning a trip to Vietnam. With the help of autism Facebook groups and the Global Autism Project, she’s found ways to connect with families from all over the world.

She’s comfortable photographing autism because she’s familiar with the disorder; her 23-year-old son, Lee, is on the spectrum. So when she talks to families, she’s talking as an artist and photographer, of course, but she’s also speaking as a mother.

“I’m not rattled,” Rasiel told The Mighty. “I’ve seen it all.”

When someone affected by autism, either directly or through a loved one, sees her photos, she hopes, above all, they feel less alone.

“[Autism] is in every country. It’s a global village we’re in. It’s everywhere. No one is alone,” Raisel said. “You’re a part of something larger.”

Take a look at “Picturing Autism” below and view the full series here.

Queens, New York

QueensBlog12

Cuzco, Peru

L1002279ab1

Oaxaca, Mexico

DSC67311

Lima, Peru

DSC87811

East Harlem, New York

DSC1906a1

Reykjavick, Iceland

DSC677021

Hveragerði, Arnessysla, Iceland

DSC6413bw11

Jakarta, Indonesia

JakartaBlog21

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Jillian Mercado doesn’t mind when she gets attention. Especially when it’s for her style.

“I’m here, I’m present,” the model and editor says in the video below. “This is me, deal with it.”

Mercado, who was born with muscular dystrophy, shakes her head at the notion that someone with a disability cannot be fashionable. She thrives in her clothes — and she doesn’t use them to hide her insecurities anymore. That’s why she became a model — most recently for Nordstrom. And that’s why she participated in the video below — an interview for the “What’s Underneath Project,” where she sheds an article of clothing after answering each question.

“I think I woke up and was like, ‘I’m so over this. I’m not going to sit in a corner all my life just crying about something that I really can’t change,” Mercado recalls when asked about turning her struggles into strengths. By the video’s end, she sits, smiling and confident, in her underwear.

Then she says this:

“If you’re different, that’s sunlight in somebody’s world.”

Watch her full interview here:

h/t Upworthy

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 


There has been a few videos in the past few months about my daughter, Pip, Happy Soul Project and my little family that I honestly can’t watch without shedding a few. Awhile back this tear-jerker from Station 14 Kingston came out, and then, well, there possibly will never be anything in my life again like the Indie88 Billboard reveal video:

I adore that my family gets to have these keepsakes, if you will… these moments in our lives captured so beautifully to remember, be proud of and have a good cry at.

But I wanted to address one small thing in all of this…

Since all this media attention, be it videos or articles, I’m constantly getting messages about what an amazing momma I am. And while it’s always nice to hear and really lifts me up, I want it noted that I am indeed just a ordinary, everyday momma. It’s just, in my case, I am in extraordinary circumstances in which the very best of me is being being showcased.

These videos, news articles, even my own pictures or blog posts, show me kissing my babies, laughing and dancing, fighting for advocacy and awareness. It doesn’t show me yelling, “Dammit!” after my toddler son refuses to eat the eggs he just demanded I make or my eyes having their own pulse because I am so bloody tired. It doesn’t show me crying in my minivan when Pip has a discouraging appointment or sobbing in my pillow when I find out another babe with Down syndrome didn’t make it. It doesn’t show me texting my girlfriends when I’ve spent hours trying to get Noal or as I refer to him “my demon” to bed, frustrated as all hell. It doesn’t show me in my pajamas having a day filled with Dora and Franklin because just the thought of lugging all of us out is beyond exhausting. And it certainly doesn’t show me making beans and toast again for dinner or stepping on yet another dinky car while swearing & throwing it, marking up the wall.

It shows the best of me — or so I like to think.

Take yesterday… Pip and I were on Cityline (Hello amazing!!!), and what you saw was a momma who loved her daughter and was fighting the fight to spread #differentisbeautiful a little further.

jul2-pip

jul2showguide

And while that is the case, what you didn’t see was:

  • I got lost and missed my exit coming into Toronto — I drove around downtown in traffic for two extra hours with Pip losing it, me needing to pee like it was my job and swerving my big momma van to avoid you fearless Toronto bikers.
  • I stayed up too late with my cousin drinking too much wine and scarfing down the most garlic of all garlic-tzatziki sauces as if I didn’t have an uber important TV interview in the morning.
  • I was up four times with Pip from 1 to 6 a.m. and was at my wit’s end about to lose it from lack of sleep, a teething baby and nervousness at the day ahead when she woke me up with this:


  • My hair started out curly — then Toronto humidity beat it down, and I was worried it was going to get all big and bad for the interview. Instead of thinking about what I was going to say or what questions I might be asked, I was wondering how I was going to manage the frizz.
  • I waited in a parking lot outside Cityline for almost 45 minutes begging Pip to sleep because it was gonna be prime nap time when we were supposed to be filming. No such luck, which in turn caused hair pulling and glasses rip-offs live on air.

cl5

cl6

cl11

  • I chatted with my husband numerous times before I walked in because he somehow in his straight-forward-way calms me the heck down.
  • When we had the Today’s Parent shoot, I desperately wanted them to do my makeup but they said I looked fine. This time I was making sure it happened, and I looked a bit “rougher” coming in, blame the wine or the baby up all night. Either way I wanted to see what I could/would look like done up by a professional.
  • Not only did the makeup artist have to work around and with Pip in my lap reaching for her brushes, but she had to endure my still rancid tzatziki breath — so sorry about that.

10350417_830002367010651_8562513178346088259_n

  • They had trouble getting the microphone in my dress because it was so bloody tight – that’s a whole other blog in itself… I mean what does one wear on TV? We all know I struck out big time live with the Huffington Post. So you’d think I’d learn to step it up a notch, but no — went big with an Old Navy Dress and Ardene’s belt.
  • One of the first things I did when I sat in the chair to be interviewed was nervously ask if the mug full of water was “for real” and could I have it so that I felt like I was on a “real talk show” — I’m seriously such a twonk. The audience laughed and they played along with me but who knows what they thought when I announced and then stole the mug as a souvenir.

wfw

  • Everything happens so fast — one minute you are watching the show in the greenroom, next you are watching a few steps away and then wham — you’re in the chair and the camera is on. And the whole time I was wondering, how the heck are my legs supposed to be in this scenario? I looked over and the lovely Sasha, Editor-in-Chief of Today’s Parent had her legs crossed all lady like, but I had Pip on my lap, so quickly made the decision to cross at the ankle. Bad call, but y’all gotta realize that was honestly what was going through my head.

cl3

  • But then the questions started and, not knowing it at the time, but reflecting back after watching it a mere 32 times, I talk too much with my heart and way too much with my hands.
  • Add the granola bar I gave Pip and called lunch on the way home and trying to change out of my too-tight dress in a busy parking lot and there you have it…

You see, I’m just an ordinary, everyday mom being showcased by all the best points…

Don’t get me wrong, I do really think I am an awesome momma to my two little hooligans… most days.

But I have to state — I think we all are — Being a momma is beyond anything I imagined. The happiest, the hardest and the most humbling experience by far in life.

But it’s us everyday mommas that are so awesome — It’s that momma I saw the other day who had a baby and was entertaining a busy toddler. It’s that momma who has twins and is determine to breastfeed them both. It’s that momma who just knows something is wrong and fights and pushes for her babe. It’s that momma who makes homemade muffins and baby food or who, like me, lives off those squeeze packs. It’s that momma who volunteers at school, takes on play dates or goes to a job and works her arse off. It’s that momma who, at the end of the day, kisses her sweet babes and thinks to herself, “I love you, I love us but tomorrow I am going to be an even better momma.”

Being a momma is what is amazing and inspiring. And I just happen to get this awesome opportunity to show others how I do it.

So, truly thank you for all the kind and uplifting comments, messages and words — Right back at ya though, mommas, right back at ya.

This post originally appeared on Happy Soul Project.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.