Inside The Mighty: A New Year and New Challenges Ahead

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I was excited to get our team back in the office today and start the New Year together. We accomplished so much in our first full calendar year, but we have many challenges ahead in 2016. Over the holidays I took a step back to consider what we’re building, where we’re at in the process and the changes we have to make as we grow. 

More than anything, I was struck by a feeling of gratitude. We’re a work in progress for sure, but our team, our contributors, our partners and our investors have helped build a brand that is truly having a positive impact. As the parent of a child with Dup15q syndrome, I’ve learned so much this year from our community of readers and commenters, both those who have become big fans of us, as well as those questioning our work.

The ultimate goal of The Mighty is to empower people. We’re in the very early stages of building a platform that connects people with disabilities, diseases and mental illnesses and others in those communities – parents, doctors, therapists and more.

Here’s a brief example:

Google the word “fibromyalgia” and you’ll find a wealth of medical information from health sites, but for someone living with the condition, stories of personal experiences can often be far more helpful.

On The Mighty you’ll find dozens of stories like these:

The Impact of Chronic Illness on My Marriage

5 Ways ‘Fibro Fog’ Affects Me

Why I’m Showing These Private Photos of My Life With Chronic Illnesses

That last story begins with the words, “I want to invite you into my life. This will be extremely difficult for me. I’m a private and sometimes quiet person, but what I have to show you is important.” It kicked off a discussion with more than 20 others about their own experiences.

That discussion is what we’re really going after. In the end, the best communities help and support each other. We want to connect people. I don’t know of anything that connects people better than stories. So that is where The Mighty began.

We bootstrapped the operation in the spring of 2014, began 2015 with three full-time employees and we now have a team of 13. Seven of those team members have disabilities or diseases and the other six have at least one family member with a condition. Our purpose is what drew them to the company.

I’m proud to say that our stories have resonated with people. We’ve grown to 200,000 readers a day and national news organizations are covering our stories, giving them a much bigger spotlight. Several of our contributors have gone on Good Morning America, The Today Show and other programs to share their personal stories in their own words.

Our most powerful story in terms of sheer impact this year was that of Jean Sharon Abbot, who was misdiagnosed with cerebral palsy for 30 years. Since it appeared on The Mighty and gained international attention, more than 20 people have reached out to Jean to say they learned of the same misdiagnosis – and got life-changing treatments — because of her story. She’s since published a book.

Video will become a big part of The Mighty as we grow, but it was really just a place for us to experiment in 2015. Still, our very first video — on what it feels like to have obsessive compulsive disorder — won the audience award in a mental health film festival and has picked up more than 750,000 views on YouTube. To help kickstart our video efforts in 2016, a young man who has produced his own videos about living with Asperger’s syndrome is joining our team, working both in front of and behind the camera. He’s got some great ideas in store for our community.

We hope to strike many more partnerships with non-profit organizations this year, but also deepen existing ones. For instance, we’ll be working with NORD (National Organization for Rare Disorders) to offer our contributors opportunities to speak to medical schools about their patient experiences.

The Mighty was designed to help non-profits do the two things needed to accomplish their goals: drive awareness and drive fundraising. You’ll soon see non-profit badges with logos and resource links on our site. We also have plans to help non-profits with funding down the road, but that will come later. We currently have no sales team and no revenue. Our focus is on building the community.

On the tech side, we launched two key features last month. Our new site taxonomy now organizes thousands of stories, making it much easier for readers to find what they’re looking for. Like everything else, it’s not perfect, but it’s a big step in the right direction. And Mighty Voices Portal, our new publishing tool, will allow contributors to submit and track stories more easily. It will also allow our editorial team to get more stories onto the site each day.

Back when we launched, it took more than a week to get our first story submission. It received more than 5,000 visits in its first week and has since been read nearly 150,000 times. At the beginning of 2015, we had 5-10 submissions coming in each day. As we begin 2016, that number has grown to 75-100.

We’re thrilled that we’ve become a platform where people in the disability community want their voices heard, but it also presents many challenges.

We’ve taken criticism from some within the disability community recently over who should be permitted to write and how they should be permitted to write about their experiences. Those are valid concerns. The passions of this community run deep and they are multi-layered. Our team lives with disabilities and diseases so we understand this.

Our goal is to provide this platform for people to share their life experiences in a respectful and responsible manner. We’re discussing editorial guidelines not just internally, but with many others in the community, which will result in updated guidelines for contributors. We listen, we learn and we move forward.

That path forward for us is best embodied by Sarah Schuster. Sarah joined us first as a contributor in 2014, writing about both her personal and family experiences with mental illness. She was steeped in the community, helped others as a volunteer, and had lots of good ideas on how to expand our mental health coverage. We eventually offered her an opportunity to join us as a freelance editor. She did a fantastic job so we brought her out to Los Angeles and made her our full-time mental health editor. Her job is three-fold: she writes stories, edits stories by contributors, and develops partnerships within the mental health community. In her first six months, Sarah has grown our mental health community into more than 2 million readers a month. I’m incredibly proud of her and what she’s done.

I hope one day we have hundreds of people like Sarah on the team, qualified editors who live in the community they help lead. But we are still at the very early stages of this process, and we have to hit many, many milestones to get there. 

Today, our team is excited to get started on year two. Thanks to everyone for being a part of this and to those helping us make this better.

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To the Misophonia That Has Controlled My Life for the Past 6 Years

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Dear misophonia,

Hello, old friend. It’s me, the one who doesn’t like noises. The one who gets upset with people for chewing or sniffing or slurping or tapping their fingers on things or basically doing things that are typical bodily functions.

You have controlled my life for the past six years. You have dictated what I do, where I go and what times I do things. You forced me to arrange my life into an exhausting array of avoidance. I miss out on going to the movies with friends and will never have those dreaded college lecture hall stories to tell my children. I wish I could get through a meal with my family or sit in a waiting room without being driven into an anxious meltdown.

Misophonia, I can’t show people how I am feeling when you cause me to become enraged. The only physical thing I could ever show people to represent the way you make me feel is the imprints on my palms from digging my nails into them. People see me react to a sound or movement that triggers you and become irritated with me for having a reaction. How dare they get irritated with me? It isn’t me, it’s you!

No matter how exhausting you are, thank you. Thank you for stepping back into the shadows of my mind when I am out at a restaurant and many other things are going on. Thank you for teaching me that everyone needs their own adaptations in life and that we are not cookie cutter people. But most of all, thank you for helping me appreciate the tranquility of being alone, the beauty of silence and the times I get to freely enjoy with my family with minimal triggers.

Claudia standing in a park with her hands covering her face
Claudia standing in a park with her hands covering her face
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What Happens Behind the Doors of My Hospital Room

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door in hospital room
Door in a hospital room

Hospital doors hold back the stories and secrets of many unique patients. They block the noises from the outside world, but the outside world is always curious about what is happening behind these doors.

At Children’s Hospital of Pittsburgh of UPMC, they do everything in their power to make their patients comfortable and try to make their stay as enjoyable as possible. There are colorful rooms, healing gardens, the sixth floor atrium and the artwork all over the walls.

Behind the doors of my hospital room, there are beeps coming from my pump on my IV pole and monitors that I continue to hear for days after my discharge. There is a technician that comes in to take vitals every three hours morning, noon and night. There are nurses constantly coming in and out to give me the necessary medications and make sure I am doing OK. There are doctors coming in at all times of the day; some at 6 a.m. and some at 6 p.m.

A wheelchair sits beside my bed so I can get from my bed to the bathroom and anywhere I need to go. Transport comes in to take me to get the required tests done and then bring me back. The IV team is called to come in and switch my IV because my first one went bad. Phlebotomists come in to get my blood work done to try and get a diagnosis.

Not everything that happens behind these doors is bad. The therapy dogs came in and consistently put a smile on my face even when I was at my worst.

Nora with a therapy dog on a hospital bed
Nora with a therapy dog on a hospital bed

During the Christmas season, the Pittsburgh Penguins came to my room to visit and deliver presents. It allowed not only me but all the patients a few minutes to forget they are even in the hospital.

Nora with the Pittsburgh Penguins
Nora with the Pittsburgh Penguins

There are volunteers and workers who try and provide some entertainment with movies or board games. It gives us someone to talk to and have some much-needed fun. They bring in cards that have been sent from family and friends, and sometimes visitors come in. They give you a bit of a social life when you have to have a limited one in the hospital. There are doctors and nurses coming in who really care about you and finally have a diagnosis.

Most importantly, behind these doors lies hope — hope that a new treatment will work, hope for a better tomorrow and hope that there will be a cure in the future. This hope fills every hospital room along with everyone who walks through the hospital’s main doors.

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These Airline Pilots Didn’t Follow Protocol for a Grieving Family

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Two airline pilots saved the day for one grieving family.

Nicole Short-Wibel, from Phoenix, posted on Facebook the story of her family’s recent trip to the airport on their way to the funeral of her father. In her post, which she shared on behalf of her mother who doesn’t have Facebook, Short-Wibel describes her family’s difficulties in getting to her father’s funeral in Tennessee, including delays that resulted in them arriving too late to board the plane. However, after seeing their distraught pleas, two Delta Airlines pilots pulled the plane back up to the gate to allow them to board.

*** PLEASE SHARE THIS SO WE CAN GET SOME RECOGNITION FOR SOME AMAZING PILOTS ***I am posting this on behalf of my…

Posted by Nicole Short-Wibel on Tuesday, December 29, 2015

Read the full post below: 

Please share this so we can get some recognition for some amazing pilots.

I am posting this on behalf of my mother as she does not have Facebook.

My husband of 32 years passed at age 56 of lung cancer on December 16. His last wish was to be buried with his family in Tennessee. After a long ordeal to get everything taken care of, he was finally on a flight Saturday morning and the funeral was scheduled Sunday December 20th at 2:00 p.m. We booked our flight on Delta also to leave Saturday afternoon. Our 3 children and I sat on the tarmac at Sky Harbor in Phoenix, Arizona, for an hour waiting for the OK to fly due to some damage to the cargo doors. We had a connecting flight to catch in Minneapolis and the delay gave us seven minutes to get to the gate.

With only two minutes to spare we got to the gate and the attendant was not at the podium. The sky way was pulling away from the plane. My son and I were waving our arms at the pilots and the ground crew as my two daughters were crying their eyes out. We were pleading for them to not take off. The attendant came out of the sky way and said there was nothing she could do as the door was already closed. We continued to plead, if we did not get on that flight we would miss the funeral. We had to get to Memphis. She contacted her superior who stated there was nothing they could do but put us on a flight to Atlanta and then we could drive. This was not going to work and the plane was still outside the window. My son was still waving his arms and pleading with the pilot through the floor-to-ceiling windows. I was crying and attempting to console my girls when the phone rang — the pilot was pulling back to the gate to let us board the plane.

Pilots Adams and Anderson of flight DL3955 on December 19th, 2015, from MPLS-St Paul to Memphis. Delta Airlines has blessed my family and gave us a gift that no one else could. Thank you from the bottom of our hearts and may you both be blessed ten fold.

Sincerely,
Marcia Short
Nicole Wibel
Rick Short
Michelle Beckman

The Mighty reached out to Delta Airlines for comment but has yet to hear back. 

h/t Metro UK

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To Brock Osweiler, Who Gave a Tiny Fan a Wonderful Christmas Surprise

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Let me introduce myself — my name is Melanie and I’m a coach. Not the kind of coach you’re used to — I’m one you’ll never need. I’m a “food coach” for little kids, otherwise known as a pediatric feeding therapist. Not a lot of people realize that for some kids, eating and growing is hard work.  Seems like growing is something you did pretty easily — all 6 feet 7 inches of you. That’s cool — you’re a good guy and should stand out in a crowd.

Turns out, we’ve got a mutual friend and she’s a very tiny 6-year-old. She’s been stuck at Rocky Mountain Hospital for Children for weeks, having surgery after surgery, test after test. Santa’s elves had to decorate her hospital room for December 25 because she wasn’t going to be able to go home that day.  Her family was going to have to try their best to celebrate Christmas at the hospital — Mom, Dad, sisters and my little friend.

But that morning, you weren’t celebrating Christmas at home either. You and your gracious wife showed up early on the morning of December 25 to surprise the kids at Rocky Mountain Hospital for Children. With your “Bronco orange and blue” beanie perched on top of your head, you made the rounds from room to room, spending time with each and every family on Christmas.

That morning, I saw the photos on Facebook of this tiny tot, who effortlessly grinned from ear to ear, despite the feeding tube and medicines surrounding her. Her dad beamed proudly as you took pictures with all of the family. Clearly, from the look on her big sister’s faces, they were feeling pretty cool to be hanging out with you that morning! Her mom immediately posted joyful messages to update friends and family, quite different from the concerned messages we had been reading for days.

And me, I breathed. I felt such a sense of relief. Our little friend was having one of the best Christmases ever, thanks to you. Full disclaimer: I noticed Santa surprised her with a real-live puppy that morning. But what little girl doesn’t want her own Bronco, too? Lucky kid got both.

With gratitude,

Your friend of a tiny friend

Brock Osweiler of the Denver Broncos with his wife (left) and a young patient and her family on Christmas morning

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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. Check out our Share Your Story page for more about our submission guidelines.

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Why Social Media Is Important to This Special Needs Mom

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I’ve been a mom for more than 12 years now. Having three uniquely diagnosed children means my brain is a jumble of all things related to special needs parenting: Haberman bottles, IEPs, FAPE, LRE, PT (physical therapy), OT (occupational therapy), EI (early intervention), developmental delays, cognitive delays, birth defects, rare disorders, chromosome disorders, autism umbrella diagnoses, speech therapy and almost every specialist doctor out there. I really wish I’d kept a list of every doctor I’ve visited; I think I would surprise even myself.

My children have certainly kept me busy, and now that things are slowing down a bit I find all I want to do is share my story in the hope that others will somehow benefit from it. To me it’s about support — something I think special needs parents need more of, and one big, important word: connection.

Being a special needs parent means you often feel alone. Alone because no one really “gets it” and alone because at some point you realize just how different your life is compared to others’. You think, “Who can I really talk to about my life? Who would even begin to understand? Who would know what all those special needs terms mean without me having to explain them?”

I have a handful of people like this in my real life, but I think this is why many parents like me blog — because we seek parents like us. We seek connection. And with the magic of social media we can reach others in a big way and feel connection like never before.

Honestly, though, I was never more scared than when I created my Facebook page. I’d already been blogging, but mostly just my family reads my blog. Did I really want to share my life with, potentially, the world? Am I OK with many people reading my story? It took a giant leap of faith for me to begin my page, and there are still some days when I would rather hide from the world. But I have to keep telling myself that publicly sharing is how moms like me make changes for the special needs community.

We are making a better future for our children by sharing the information we have, by sharing stories about our children. We are helping to end the stigma related to disabilities because of our openness. And being open leads to connections with parents I never would have met otherwise.

My little network of “online friends” from my page and from other pages continues to grow, and I love it. I love that I can talk to people who “get it.” I don’t feel alone anymore. I feel confident in my story because I know people who “get it” too. These connections are what keep me going day after day in sharing my life as a special needs mom. And this is why I will continue to write about my children — because I am adding to a large volume of parent voices that will propel children into greater futures.

I am not doing it to become famous. I am doing it to help someone else not feel alone in their journey. Connection is what it’s all about. Thank goodness for social media because my support group has never been larger.

woman holding sign that reads 'welcome to my blog, The Special Reds!'

And by the way, if you know what all those terms are in the first paragraph, you are already my friend.

Follow this journey on The Special Reds.

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