I’ll Never Feel Guilty About Giving My Son With Autism This Treatment

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When my son was born, there were two very different nurses who worked at the hospital. The day nurse was harsh and not at all maternal. The night nurse was super sweet and much more merciful.

I was a brand new mom who had no idea what I was doing. I was panicked they’d even leave me alone with my child. Didn’t they know I wasn’t prepared for this? What if I needed help? What if something went wrong?

What if I wasn’t able to pull off this momma thing?

When the first nurse came in for the third time that day and saw my son was again in my arms, she scolded me. She said that if I didn’t put him down, I’d spoil him.

Her comment terrified me. Was I already spoiling him? Was I already failing as a mother? 

When the shifts changed, I confided my fears to the night nurse, not sure who else to turn to.

She came over, sat down on the bed next to me, stroked my son’s precious little head and said, “You can never, ever spoil them with love. There’s no such thing as too much love.”

These words changed my life.

When my son was 2 years old, screaming every single time I dressed him in socks or put him in the car seat, I was sure I was failing as a parent. I read every toddler training book on the planet. I asked other mommas, hoping they might have an answer. They didn’t. And worse, they also didn’t understand: “Oh, our little Clay sleeps all night long in his own bed.” I’ve never had that problem with Avery.”

Of course I got tons of advice, but most of it implied I was somehow spoiling him. That I was the one encouraging him to continue the difficult behaviors.

I felt terrible. Ashamed. Worthless as a mom.

And then, every once in a while, I remembered the nurse’s words:

“You can never, ever spoil them with love. There’s no such thing as too much love.”

Her words never failed to comfort me, reminding me I wasn’t totally ruining my child. They made me realize part of loving him was helping him through whatever was going on, no matter what other people said.

My son was diagnosed with autism in the midst of the worst meltdowns of his life. Every single day, sometimes three or four times a day, waves of total frustration and pain washed over my son. Rooms were demolished, walls full of holes, windows broken, electronics bashed in. He was bruised. I was bleeding. We both were crying. There was nothing I could do to stop it.

And it wouldn’t stop.

I was beside myself with worry, shame and fear, sure somehow I had caused this. Terrified that he would go to jail one day for vandalism, or worse, hurting someone in a moment of lost control.

It took months to find someone who understood. It took months to find someone that said, “This happens. He is overloaded and his brain is just shutting down. We can figure this out.”

When our occupational therapist said it, I was so relieved I sobbed.

Later she sent me an email. She said she’d been thinking about my son and me all day and wanted me to know I was doing a good job. She said she couldn’t imagine how difficult it must be. She ended her sweet, gracious note with this:

“You are loving him well. I cannot tell you how much I think that matters.”

All too often, I think we’re encouraged to focus on all the things we should be doing to help our children: the therapies, the diets, the doctors visits, the medicines, the schooling options, the life skills they need to master, the social skills they lack.

And we do. We need those things.

But it has been my experience that those things never, ever come first.

That what matters most, even in all those appointments and next steps and milestones, is the love you already feel for your child.

Please never feel bad about that. You’re a mother. You’re designed to love your children in a way that defies all logic. You can second-guess yourself when you give in and take him to the pet store. You can second-guess your decision when you discontinue one therapy to pursue another. You can second-guess whether leaving him at school today was the best decision.

But please, never second-guess love. Never question the love you have for your child.

Because there’s no such thing as spoiling a child with too much love.

Because love is always the best treatment plan.

Because love looks past duty and bears all things, believes all things, hopes all things and endures all things.

We are mommas.

We love.

And it matters.

A version of this post originally appeared on Not the Former Things

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3 Ways My Nonverbal Big Brother Teaches Me to Communicate Better

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Big brothers have a lot to teach their little sisters. For me, my older sibling is constantly teaching me how to communicate better. Without the ability to speak a single word, he’s able to communicate with 100 percent more proficiency than the general population.

Joe was born seven and a half weeks premature with Down syndrome. Early on, he was diagnosed with a motor speech disorder called apraxia of speech. While the cause is mainly unknown, it essentially inhibits the muscles of his mouth from forming the words he wants to say.

In addition to a symbol-supported communication application, Joe uses a combination of sign language, body language and guttural tones to convey his thoughts. Unable to speak, read or write, Joe has faced challenges every day for the past 28 years.

But through those challenges, Joe has taught me more about interpersonal communication than any celebrated professional consultant ever could. There are three key tenants Joe instilled in me:

1. Speak the truth. Joe demonstrates how he feels with no fear of repercussion. Without the use of words, Joe’s tone, facial expression and body language are all he has. There are no words or semantics that he can use to sugarcoat things. For this reason, resolution is achieved much faster for Joe. Collaboration becomes more fluid because there are no hidden messages to decipher. He lets you know what’s wrong, and together, you can fix it.

2. Don’t give up. Joe constantly encounters people who do not have the patience to understand him. As he speaks, they dismiss what he says with feigned comprehension. Through the years, Joe has become skilled in reading tone and body language. He can quickly identify when he is being disregarded and will select a new method of articulation. This perseverance has given him an arsenal of techniques to use with even the toughest of personality types. More importantly, by truly listening to others, Joe understands when he needs to shift from his preferred form of communication.

3. Radiate warmth. Joe has faced intolerance and prejudice more times than I would like to admit. Still, he has an innate ability to overcome it through projecting warmth and happiness. When he encounters someone who doesn’t understand, he smiles, laughs and says hi. He enters each interaction with the notion that he will be your friend at the end, regardless of how it starts. With that mentality, there is rarely an objection he can’t overcome.

Joe has watched me accomplish so many things in life: learn to drive, get a degree, date, move out and travel. Not once did he show a hint of jealousy or loss. In those moments, he celebrated my success and loved me unconditionally. Joe never blames others for what is wrong in his life or fixates on self-pity. Instead, he lifts people up and brings a smile to those around him. He doesn’t acknowledge his own disadvantages; instead, he lives every day as a new opportunity to relate more effectively to those around him.

When I think about how my brother moves through this world every day with tremendous grace and serenity, I can only hope to be half of the communicator that he is. While I often fail, I know he’ll always be there to help me try again in a way only a big brother can.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. 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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Wrestlers With and Without Disabilities Fight in ‘Rough, Rude, Rule-Breaking’ League

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If you hadn’t considered the words “disability” and “pro-wrestling” in the same sentence before, think again. Doglegs is a pro-wrestling group based in Tokyo where people with and without disabilities fight one another. Founded in 1991, the nonprofit league aims to challenge society’s preconceived notions about what people with disabilities can and cannot do.

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The term “disability” is a purposefully loose distinction in Doglegs — competitors live with conditions ranging from cerebral palsy to an intellectual disability to a mental illness, and they sometimes fight each other with little to no restrictions. The league holds matches that regularly draw between 200 and 300 spectators, about half of whom live with disabilities themselves.

Heath Cozens, a filmmaker from Wellington, New Zealand, recently created a captivating documentary (trailer below) about the unconventional wrestling league. “Doglegs” centers on five of the league’s most prominent members, interweaving their personal stories with their performances on the mat. As the league’s 20th anniversary approaches, Shintaro, Doglegs’ star fighter, prepares for the fight of a lifetime: a match against “Antithesis” Kitajima, Shintaro’s able-bodied mentor and nemesis of the past two decades.

The Mighty got in touch with Cozens to learn more about the inspiration behind the documentary, what it’s like to witness a match and what he hopes people will learn from the fascinating world of Doglegs wrestling.

Can you explain what Doglegs wrestling is?

Doglegs is a nonprofit league of able-bodied and disabled wrestlers in Tokyo who fight each other in the name of smashing stereotypes. It started almost 25 years ago as a kind of break away group — there was a feeling amongst the founding members at the time that the disabled community was condescended toward and was kind of suffocating. They felt they weren’t really able to express themselves the way they wanted to, so they formed this league as an act of defiance, really. They wanted to get out there and be rough, rude and break the rules. It was sort of an outlet for frustration.

When it started, people really felt like they were starting some kind of revolution. A lot of it was based in shock value; they wanted to shock people out of their sort of calcified thinking. The wrestlers want people who see their matches to leave entertained, but they also want to leave people with a lot to think about at the end of each match. Since it was originally founded, it has become less of a political force and more a way for individuals to explore.

Wow. So the able-bodied wrestlers and wrestlers with disabilities fight each other?

They certainly do, yes. There are four different classes: people who cannot sit up and fight lying on their backs, people who can kneel, people who can stand and then an open class, which is a mix up of everything. If an able-bodied wrestler is going up against a wrestler with a disability, though, that wrestler might be restrained somehow. For example, if they have a person who is able-bodied going against a person with cerebral palsy, the able-bodied person might have his limbs tied up. But not always. It’s up to the wrestlers.

What was it like to witness your first Doglegs wrestling match?

It was a roller coaster. I was pretty shocked. It starts out with the heaviest class, people on their backs. Sometimes those people can do little more than just lie there. But then you start to focus in and see the moves they’re pulling. You pick your favorite, you start rooting for them. It casts a spell on you. Then the next match will come on, which is meant to be more humorous. You feel weird, you think, ‘Wait, should I be laughing?’ Then you realize — they want you to laugh. It’s part of it.

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Did you at any point feel like it was exploitative?

That’s an important question to consider. Is it exploitation or empowerment? The reason something like Doglegs wrestling is relevant and useful is it forces you to ask where those concerns come from. Why are you so concerned about these people? Are they not agents of their own free will? Why would you assume they’re being exploited? You’re sort of discrediting them by assuming they aren’t agents of their own free will. Everyone is doing it for their own reasons. They’re confronting their disabilities and their demons. Maybe they’re doing it to laugh at themselves, maybe they’re not. Nobody is being forced to do anything — nobody gets paid, and Doglegs doesn’t turn a profit. It’s entirely volunteer-run.

When I first heard about the group, I thought I might have to make some kind of expose. I was coming into that from that same concerned, inclusive, liberal way of thinking. I didn’t realize that I had some condescending prejudices to begin with.

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Can you describe the moment you knew you wanted to make this documentary?

As soon as I heard the words, ‘handicapped pro wrestling.’ Those are loaded words. Even the word ‘handicapped,’ is loaded, right? I thought, is this exploitative or is this empowerment? I played out some scenarios in my head, and I knew that no matter what I found, the answer wasn’t going to be black and white.

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What kind of feedback have you received so far?

Well, the film has only been seen a few times, but I’ve gotten some great feedback. I was kind of surprised that so many people got it and that there weren’t any angry reactions. People really understood it — they laughed in the right places, and they all seemed to have the emotional roller coaster reaction that I’d intended. 

Is there a moment you realized this film had made a positive difference in someone’s life?

There was a guy at one screening who was still talking with me half an hour after the question and answer session had ended. He was fighting back tears, and he said, ‘I just want to say thank you. Thank you.’ He had spina bifida, and he’d trained as a mixed martial arts fighter. He was deeply, deeply moved. I felt so happy then.

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What do you hope people, with disabilities and without, will take away from this film?

I hope that people who watch the film, especially abled-bodied people, will feel less afraid of disabled people. I really want to leave people with a bunch of questions churning around inside. I just hope they feel the same way I did, which is that they don’t know how they should feel about it. That they have lots of questions and strong emotional reactions. I hope it’s a process of self discovery.

On the other hand, I really do want people to have an entertaining time. A good story. So many films about people with disabilities are these generic stories about someone overcoming some big obstacle. Your eyes glaze over  and you think, ‘OK, someone’s going to tell me some inspiring story, blah blah blah.’ This is not your typical film about disabled people. This is a film about interesting people with interesting desires.

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Check out the film’s incredibly compelling trailer below:

“Doglegs” premiered at the Hot Docs International Film Festival in Canada, but has not yet set a general release date. To follow the film’s updates including release dates and screenings, visit the film’s website or sign up for the Doglegs newsletter.

All photos courtesy of Heath Cozens and Doglegs.

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We Took Many Walks During His Sister’s Short Life. This One Stood Out.

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Three years ago on March 21, our baby daughter, Hannah, passed away. Not a day goes by that she isn’t with me. She’s always on my mind and forever in my heart. She was beautiful with chubby cheeks, sky blue eyes and raven hair. Hannah had debilitating seizures and a degenerative disease that took her from us at 16 months old.

But the story I want to share isn’t about Hannah dying. There are a lot of stories written by moms who’ve had children die. As we were grieving Hannah, those stories gave me hope that I would survive this heartache. This story is about our child left behind.

While we were living through Hannah’s journey, my husband, Greg, and I were consumed with seizures, airlifts and ambulances. For our then 5-year-old son, Wes, gone were the days of lingering at preschool and playdates in our backyard.

And yet without being conscious of it, we were also caring for Wes. The things in life that didn’t seem to really matter before all of a sudden became the glue holding us together.

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One thing in particular kept life sane for Wes and me: strolling. Wes has always been the kind of a kid who loves to be outside. Me too. When Wes was baby and he started crying, we’d go outside and sit in the grass and wait to see what might happen. An ant crawling up his leg, a breeze rustling the leaves in a nearby tree — all of it would calm him and me, the very frazzled mom, and we could continue with our day.

When we moved from our cozy home on Bainbridge Island, Washington, to a little rental in Seattle so that we could be closer to Seattle Children’s Hospital, nature again became our salvation through our strolls.

Our walks could be short or last for hours. It gave us time to connect, unwind, be silly and focus on each other. Wes would grab his cute yellow Crocs, stand at the door and say, “Mama, can we go for our stroll now?”

Wes and I took hundreds of strolls during Hannah’s short life, but I have a favorite. It had been a really rough morning. Hannah woke up with a seizure that racked her small body. Her heart was racing, her eyes were rolled back and her breathing was erratic.

Greg and I jumped into our routine. He called 911 as I put the hospital bag pulled together. He went down the long staircase to wait for the fire truck and then the ambulance to arrive. He walked the crew through Hannah’s issues, while I called Seattle Children’s and spoke with the on-call neurologist to let them know we were on our way again. I’d take over duty at Seattle Children’s once Hannah was out of the ER and in her room. Greg left with Hannah in the ambulance, while sirens blared through a quiet Saturday morning.

While we were on the porch listening for the last of the siren’s song, Wes and I heard a faint “thump thump thump” of music. Wes got a little gleam in his eye.

“What is it, Mama?” he asked, shaking his little rump to the beat.

“I don’t know,” I said, unaware of any reason for the music.

“Let’s go see!” Wes shouted, already throwing on his Crocs.

“Right behind you,” I said, grabbing my shoes and jacket.

Wes practically pulled me down the stairs and up the block to the main road. As we moved closer, the music got louder and louder. Wes ran and laughed with a huge smile on his face. The fear and despair of Hannah’s seizure lost to the beat of the bass.

We approached the big ball fields near Green Lake. Hundreds of women and men in purple t-shirts were walking around the track, while the DJ played music to keep the crowd going. Wes joined in the parade. He couldn’t believe his good fortune to be with this crowd. The DJ put on Salt-n-Pepa’s “Push It.” He laughed and danced like there were no worries in the world. Me too. What joy — so needed and so loved. Out of the hundreds of strolls Wes and I took, that one was tucked into our hearts like a precious treasure.

I think of Hannah’s pure love for Wes and how she would watch him with her eyes shining. Her focus on him was a bit deeper than with any other person in the world. During her life, Wes would ask questions about Hannah’s future and assumed she, too, would grow up, become a mom and her disabilities would disappear. His thoughts sustained us throughout Hannah’s journey. His love for her and hers back to him didn’t break our hearts; it made them grow immeasurably. He got to know his sister, living together with her through the last months of her life.

And now, three years later, Hannah continues to teach us. We had another daughter, Mimi, a few years ago. Wes tells Mini stories about how much fun Hannah was and that she was a great sister. We are grateful for all that we have in our lives. We still sit in wonder of our amazing baby. And I count my blessings for my sweet Wes. My child left behind.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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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5 Ways I’ve Learned to Embrace My Mental Illness Diagnosis

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I’ve wrestled with being open, honest and vulnerable about my recent diagnosis of bipolar II disorder. From battling the stigma, guilt and denial that comes with a mental illness diagnosis, to practicing self-care, recovery is not simple or quick. While it’s easier with family and close friends standing in my corner, most days I’m trying to be better for them. Only recently have I tried to be better for myself.

Here are five ways I’ve been able to embrace my mental illness:

1. Acknowledging its presence in my life.

I think bipolar II was a secret I kept from myself for years. It seemed to sit there quietly in my unsettled mind, occasionally making an appearance just to remind me it was still there. I always willed it to go away, but denying its existence only brought more pain. In the depths of my most recent major depressive episode, I resorted to self-harm and began cutting my wrists. I wanted my outside to match how I felt on the inside. This left me with four scars on my left wrist, and I ultimately reached a point where I could no longer hide my struggle from family and friends. As a result, I spent a week in the psychiatric unit at a local hospital.

Sharing this struggle and my subsequent diagnosis with close friends and family was the best thing I ever did for myself. People came out of the woodwork to support me. I didn’t realize how much I needed all of them until they appeared. By finally admitting I needed help, I was no longer alone in my journey. I realize now how crucial family and friends are in my recovery, and I’ve found that by acknowledging my mental illness, I’ve laid the groundwork for a dependable support network.

2. Making friends with fear.

I was plagued with fear when I was first diagnosed with bipolar II. Fear that people might judge me or think I was different and weird. Fear that the free-spirited, adventurous qualities my friends and family loved about me were just the byproduct of being hypomanic. Fear of the realization I would live with bipolar for the rest of my life, leaving me wondering what “the rest of my life” would even look like. However, admitting I was afraid and voicing my fears brought an enormous amount of relief. I started to view my diagnosis as a blessing — it meant I knew what I was dealing with. Armed with that knowledge, I can use fear to understand what I need to do to manage my illness and continue living a healthy, stable life.

3. Acknowledging my current state of health.

In my most severe depressive episode, I stopped taking care of myself. I didn’t shower. I didn’t cook. I didn’t clean. The thought of doing any of these things nearly debilitated me, and as a result, I stunk, didn’t eat and slept in dirty sheets for months at a time. It wasn’t until I went to the hospital that I became mindful of how poorly I was functioning in the everyday world. I needed medication to stabilize my mood, and help doing even simple things that seemed so overwhelming. The only thing I seemed able to manage in the initial weeks after my hospital stay was taking a shower. I was too exhausted to do anything else. But even though it was a small task, it was something.

Understanding my abilities and limitations is important to my recovery process. I can’t think about where I want to be or how I ultimately want to function. Instead, I continuously have to ask myself where I’m at and cut myself some slack. I know now I might need help getting through rough patches, but I’ve found there are people in my support network who are willing to help, even if in small, but significant, ways.

4. Participating in the recovery process in a meaningful way.

When I decided to take an active role in my recovery, I began educating myself about my mental illness and joined several support groups. The support I give and receive in these groups has been the biggest blessing in my recovery. They are my brothers and sisters: my comrades. They are the few people I know truly understand what it’s like inside the mind of someone living with bipolar. Writing has also been helpful. It’s given voice to my worries and fears and helped me process and grieve my diagnosis. Taking an active role in my recovery process has empowered me to seek help and find purpose and meaning in a post-diagnosis world.

5. Not letting it define me.

As soon as the psychiatrist diagnosed me with bipolar II, I thought others would stop seeing me as the free-spirited, adventurous, sometimes sad and lonely writer and instead start seeing me as that crazy girl. The pervasive stigma that exists regarding mental illness is an issue I’ll constantly fight. Some people will embrace me while others will shy away, but I can’t let how others perceive me define my existence. Yes, I am different, unpredictable, impulsive, at times reckless and at other times seriously depressing, but I am also so much more. I am a strong person with a giant heart. I am a loving daughter and caring friend. My mental illness is a part of who I am, but it is not me. For that reason, I decided to use my mental illness as a vehicle for change.

If you live with a mental illness, know you are not alone in your journey.

A version of this post originally appeared on The Scenic Way Home.

The Mighty is asking the following: What was the moment that made you realize it was time to face your mental illness? What was your next step? 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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6 Ways to Make Big Transitions in Life When You’re in a Dark Place

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I have a rare neurological condition called Moebius syndrome, and for me, the biggest transition in my life was going to college. I never saw myself going to college, honestly. I was in a dark place for a long time and thought I’d never have any success in life. I’m sure a lot of people with different conditions can relate. It’s hard to be “different” in the society we live in.

In March 2013, I received an acceptance letter to a journalism program at a local college. That letter changed my life forever and for the better. There are so many new avenues open for me right now, so I want to help others find their way out of a dark place like I was in.

Here are my tips on making and dealing with life changes, such as going to college, for anyone who feels “different” or experiences self-doubt:

1. Put your fears behind you. You have to do this. As I learned, you won’t grow as a person until you step outside of your comfort zone. Going to college was the hardest thing I’ve ever done, but it also had the greatest payoff and impact on me.

2. Don’t worry about what others might think of you. We can spend a lot of time dwelling on how others perceive us, especially if we have physical differences. The truth is you have no control over what other people think, so why let them steer your life? Make decisions for yourself, not for others.

Because of my speech issues, I thought my teachers would ask themselves, “Why is this girl in journalism?” I could not have been more wrong. All they did was support me and tell me I’m going to do great things. People aren’t always thinking what you think they are.

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3. Find a support system. When I went to college, I didn’t know a single person there. Not one. As the days and months went on, I bonded with my classmates and teachers. I became really close to my teachers and friends who were there for me. They supported me through it all. My classmates even helped me run a Moebius syndrome event on campus, and the event was incredibly successful because of them. No matter where you go or what you do, it’s absolutely imperative to have a support system. That support system can be comprised of teachers, coaches, friends, family, counsellors, coworkers, etc.

4. Explore new horizons. Dabble in something you’ve always wanted to try. I always wanted to write and get my story out there, but I never had the avenues to do so. College opened up so many doors for me. Now I have more ways to get my story out there.

Always keep your life moving forward with momentum. There are so many things to do and see in this world, and we have such a short time on this earth. Make every single day count. Do things that scare you. For example, being interviewed on the news was terrifying for me, but I really wanted to get my story out there. It was amazing to see the result.

5. Always be true to yourself and know who you are. Know your values and morals and, most importantly, know what you want out of life. Never, ever stop chasing your dreams. I never thought going to college would be possible, but I found people who believed in me, and they’ve helped me believe in myself.

6. Remember that your biggest obstacle in life is yourself and the limitations you put on yourself. Find ways to overcome those obstacles. There is always a way. Like the old adage goes: Where there’s a will, there’s most certainly a way. Please don’t waste years doubting yourself or your abilities like I did. Create the beautiful life you’ve been dreaming of and never stop chasing those dreams.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. 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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