We are all gathered around the table for dinner. Forks scrape across plates, mouths chew, drinks are sipped and runny noses sniff. Just one of these noises alone is enough to drive me into a frustrated breakdown. When I tense up “randomly” during dinner or have to get up to refill my water more times than necessary, it’s not because I don’t appreciate the beautiful gift of gathering around the table. It’s simply because I need just one minute of silence.

daughter and mom

I have a condition not many people seem to know about called misophonia. Misophonia has become a part of my day-to-day life since I was 13 and has seemed to progressively expand its library of trigger sounds along the way.

When I hear a trigger noise, my body engages in a knee-jerk reaction, such as flinching or tensing up. Depending on the loudness, severity and duration of the noise, I have fight-or-flight reactions, ranging from rushing out of a room to remaining there as tears stream down my face.

Misophonia makes it hard for me to sit through meals with my family no matter how much I love them. While we eat, my mom always makes sure there is music playing so I have a distraction, and my family tries to be extremely patient with me even though they don’t understand why I am getting worked up over something as simple as a noise.

I can’t sit through a movie in a theater because people around me are eating their popcorn, and it’s all I can focus on. I’ve had to switch classes from lecture halls to online courses simply because someone sniffed, and I knew I couldn’t sit for an hour a day, three days a week in a room of more than 100 people and remain calm. I take my tests in a special testing center so I might actually have a better chance of concentrating on my test with a lower number of possible trigger sources surrounding me.

Misophonia is not something I can just “get over” or “take some deep breaths” to deal with. Instead of telling me to relax or grow up, take the time to ask me what I need. Take a minute to ground me or let me take a minute for myself. I have to try a lot harder than most teens my age to be able to tolerate being around people, but I am trying.

Claudia LaGarde.2-001

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.


We met when I was healthy. You snuck me away from a party to light tennis balls on fire in the middle of some field we traipsed through. I still have the scars from the thorn bushes that caught my ankle as you carried me on your back toward the house. You never meant to leave scars, only memories, you said. I am not sure whether I met you by chance or if it was meant to be, but the instant you walked into my life, I felt my body exhale in relief. “Here is someone genuine. Here is someone who is good,” it breathed.

A few weeks later, we got into a car wreck. “You should have died,” said the officer as he looked at the car, slammed backwards against the guardrail. You were afraid, but you stood there like a lighthouse, holding me until I could breathe again and making jokes when the waves let up. You taught me how to be strong in the face of tragedy and fear.

Summer came and I helped you move to the city. You didn’t fit in there and neither did I. But you stuck it out, studying day in and day out for the MCAT. Your determination and dedication inspired me more than you know. I can’t tell you how happy it made me to sit in the library with you while you studied away. I learned more from you than just medical terminology and physics. You taught me to make sacrifices. You reminded me that I don’t have to do what everyone else is doing.

As summer came to a close, we went to the fair. The pain came out of nowhere, and at the time I could have sworn I was dying. I passed out in your car as you drove me to the emergency room. I remember hearing the concern in your voice as the world faded to black. You waited there all night and helped me home. In the morning you made me call my mom even though I didn’t want to. You taught me to stand by the people I love no matter what, to help others and to help myself.

When Christmas came you took me to Leavenworth to see the Christmas lights. I was very ill and tired then, but for a few hours I didn’t feel like a sick person. You gave me a memory I will cherish forever. I never knew how to thank you. You built me shelves and bought me plants when I couldn’t see through the devastation and loss my illness had left me to face. And when the treatment went wrong and I became someone I could no longer recognize, you were there when you could be and encouraged me to keep going when you couldn’t. You got me through it.

Summer came again and I got better for a while, but I was not the same. I was bitter and I was unkind to you. I wanted you to understand something you couldn’t. I wanted you to be there when you couldn’t. I resented you for it. I want you to know how sorry I am, that I missed you on my birthday, and that even though I did everything I wanted to, it wasn’t the same without you. In your absence, you taught me how to love you unconditionally.

When the leaves began to fall, I began to fade out of the life I had created in the summer heat. I was sick and this time it had a much quicker agenda. I lost my mobility, my job, my independence, my purpose and myself. I went from coaching gymnastics and hiking everywhere to being unable to function. Just getting out of bed became a huge feat and I relied on a cane. Doctors were unable to help. I felt lost. So I sent you a text.

You met me for coffee. To be honest, I was nervous. I felt guilty. You were there, though, and that was all I really needed. I was reminded of everything you had taught me the minute I saw your face. I started writing, reaching out, helping myself. I learned how to live with my illness instead of in spite of it. You don’t know this, but you make me want to be more, do more, live more. Keep fighting.

Yesterday I sat beside you on the couch. You handed me a gift and after you made sure I knew you had wrapped it yourself, I unveiled a lightbulb that I could control with my phone. “The gift of light,” you said. You then spoke about how it could offer light in the darkness, how shedding a new light on a situation can uncover new paths, and of course that it matched (and one-upped) the color-changing candles my parents had gotten me one year before. By the end of your speech, your voice caught in your throat and tears were streaming down my face. As you hugged me, I felt my body exhale in relief. “Here is someone genuine. Here is someone who is good.”

You gave me the gift of light, but what you don’t know is that you are the light. Written above are only a few examples of just how incredible of a person you really are. I don’t know how to thank you in a way that encompasses just how much I appreciate the fact that you even exist, let alone that I got to meet you and that you are a part of my life. There are no words. So thank you for all that you have done and will do, but mostly thank you for being you.

Thank you for helping me withstand the unimaginable.

A snowy outdoor landscape with Christmas lights decorating the trees

Follow this journey on The Cane Effect.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. 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.

For many, the holidays include giving to others, reflecting on your own blessings and making choices or even resolutions to reorient your life back to the priorities where you place value. It is the time of the year when altruism is at an all-time high. We increase our level of giving and gifting on all fronts. We will unabashedly spend hours hunting down the perfect gifts, more freely drop change in donation jars and write checks to charities.

For some, though, the holidays are another reminder of how different their lives are from others. For caregivers or those who are seriously and/or chronically ill, the holidays can be a hard time when the vast amount of one’s resources are directed towards merely surviving. Many holidays I spent doing just that.

I prayed that I would be healthy enough to be with my family and not in a hospital ICU or recovering in a nursing home. I hoped that I would be able to enjoy a couple bites during the family dinner and I wanted desperately to have the gift of health. I also was so grateful that strangers, at least 30 of them over a period of about two years, had taken time out of their busy lives to donate blood. Without their selfless act, I would not be alive.

Before I had become so seriously ill, I was a regular blood donor. Every time I donated blood or platelets, I made sure to schedule an appointment for when I would be able to donate again. Donating blood was a priority because I was giving something money could not buy, but that I knew was such an essential need. At the time, I wasn’t aware of all the people who may need a transfusion. I largely believed donors were needed for those who had been in traumatic accidents, those battling cancer and perhaps those with rare blood disorders.

However, it was not until I ended up becoming the recipient of someone else’s blood donation that I realized anyone at any time may be in my same position. While I was the giver, I felt like I was doing something for people who were in situations I never imagined I’d one day find myself in. It is easy for us to find comfort in a mindset that separates us from those in need. When we give to others, we sometimes do so with the belief that we will “never be like them;” we will never end up in the position of having our name added to the list of individuals in need. We don’t often like to acknowledge that the distinction designating those in need of food, clothing, protecting, or even life-saving blood is, at best, precarious in a world full of unexpected situations and events. It is these distinctions that placate our conscious with the facade that by giving to cause XYZ, we have somehow buffered and differentiated ourselves from those that need such supports.

Unfortunately, this mindset, combined with schedules that are even more packed than usual and a seasonal affect of blissful glee that is resistant to directing attention towards hard realities makes the holiday season the time of the year when blood donations can decline and are most needed.

This holiday season, I implore those of you who are eligible to donate blood, to please do so. You can expect to be welcomed by staff and volunteers at the donation site, have an hour or more of peace and quiet to watch a movie on a tablet, check your email, read a book or even just breathe and rejoice that you are healthy enough to give of yourself in such a meaningful way. This is one gift that comes with the assurance that you are filling a sincere need. This is your chance to give something that will truly save a life.

It also has the power to change a life, including your own. If you are not sure if you are able to donate, please check with your physician to clear up any concerns and then check with your local blood center, hospital or American Red Cross. Thank you, also, to the anonymous donors who gave of themselves so I could live.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness during the holiday season, and what would you say to teach them? 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.

Lead photo source: Thinkstock Images

A mother carries her baby from the time he or she is as small as a pea until the baby is ready to take his or her first breath. This is a big responsibility, one that should not be taken lightly. A mother’s love for her child starts before they are even born.

When a mother or father holds their baby in their arms for the first time, it is like nothing else. I believe it is bigger and better than any feeling, emotion or thought. It is a blessing, a miracle — it’s magic!

As a parent you hold that baby in your arms and you make a vow. I believe you promise and swear to God to protect this child from hurt and pain, because this child came from you — your very own creation, the greatest thing you’ve ever made. There is no other love like this.

You love your parents, and you love your spouse or significant other, but I don’t think it will compare to the love you have for your beautiful creation. This child you carried, this beautiful being you would lay down your life for in an instant — that kind of love, that is a parent’s love.

What if your creation came into this world even more special than you could have ever imagined? What if your child was as fragile as an egg? What if you were not just a mother or a father, but you are now a mother or father as well as the caretaker?

That vow, that promise that you made, intensifies to a whole new level.

Imagine you have something and it is the most precious thing to you, and you keep it safe and secure so that no one hurts or breaks it on you. You hide it away, you don’t share it with others, and you protect it.

Think about it. Do you have something like that?

You do — great!

Now multiply that by whatever the highest number is on the planet, and it is still not enough! The love a parent has for their child is indescribable.

As a parent, when you have a medically fragile child or a child with disabilities, you might need not only to be their mommy and daddy but also their caretaker. You still have and will always have that indescribable love.

It’s scary, it’s emotional, and all you think about day and night is your promise to this beautiful creation.

You fight for your child to get the treatment or therapy they deserve. You use your voice to fight for your child if they can’t. Until they can and do speak for themselves, you are not going to stand quietly by while your child needs you to advocate for him or her.

As you do this, you are teaching this child that he or she is loved. You are teaching him or her how to advocate so they know how to do it themselves. By not giving up, you are showing them how to be strong.

As a parent, you are raising your child to be independent for that day when you are no longer here. You prepare them for the world, and you give them every single tool you have, because if you don’t, you might set them up to fail.

A parent’s love won’t let that happen.

Melissa’s child

Follow this journey on Melissa’s blog.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

How can doing something as mundane as taking out the trash change a life? If I were you, I would be skeptical as well. However, this wake-up-call story shows that life can change in a blink of an eye, causing a ripple effect and transformation from tragedy into triumph.

On a normal fall day in Hudson River Valley, New York, I was tackled while taking out the trash. No, I wasn’t mugged, but I was clobbered. In a split second, a 1,000-pound tree limb struck me, breaking my neck and leaving me unconscious.

I didn’t hear, see or feel a thing. 

The next memory I have is five days later in the ICU of St. Francis Hospital where my mother, husband and doctor put the pieces of the puzzle together for me. I awoke limited to a brace, as I had fractured my C7 vertebra.

I was in denial of my circumstances. I almost immediately asked for my iPhone to check in with my “real” life. Yes, before the tree, I was a self-proclaimed “Superwoman,” juggling a successful travel industry career, marriage, homeownership in south Florida and an active lifestyle. Even from the ICU, I wasn’t going to let a broken neck get in the way of my plans.

After nearly a week in the hospital I underwent neurosurgery, where the surgeon encapsulated my C7 with steel to naturally fuse it instead of inserting a rod. Although my doctor was a gifted surgeon, he certainly was not forthcoming with me or my family about the recovery process. In fact, after my mandatory eat, pee and poop, I was given an overly general, one-page instruction sheet from the nurse and rolled out to the car.

Needless to say, my recovery wasn’t so quick, nor painless. In my post-op appointment, I learned I would be out of commission: no work, no showers, no travel, no return to my home in Florida, and limited to my full back, neck, torso brace for the next four to six months.

My life was forced to pause.

With that news, my career and professional identity vanished. I was forced to resign from my position to obtain long-term disability coverage. As I simultaneously dealt with my health in peril and my career in the toilet, I discovered a destructive trail of lies. My husband had been living a double life. All that I held dear that fall was lost.

Was there an upside to losing everything? 

Over a lengthy, nine-month period, I regained my health with the help of a team of doctors, therapists, and my clan (friends, family and virtual supporters from around the globe), after which I revisited that very tree in Poughkeepsie, New York. By standing in that same place, I saw the tree and my life with new eyes. I accepted the opportunity I had to architect a new life and share my story to inspire others to not only survive life’s obstacles, but to thrive in spite of them.

I’m a living example of post-traumatic growth.

In 2009, I didn’t know the term post-traumatic growth (PTG), but I was familiar with its opposite, post-traumatic stress disorder (PTSD). Although I’m not discrediting PSTD, I believe as a society we tend to downplay the positive after-effects and growth potential that come from life’s challenges.  I’m a living example of PTG. However, I’m not alone. You, too, have the tools to tap into PTG.

With the power of perspective, you can use life’s curveballs as a springboard for life change and triumph. It has to do with your outlook. When life hands you lemons, make the best lemonade or limoncello. And if you mess up the first batch, try, try and try again, learning along the way and tweaking your path to success.

Heidi with the tree that changed her life

Follow this journey on Heidi Siefkas.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

The high school graduation rate for students with disabilities is on the rise across the U.S.

This is the third year in row that these numbers have continued to rise, according to figures released by the U.S. Department of Education’s National Center for Education Statistics.

The graduation rate for students with disabilities hit 63.1 percent for the 2013–2014 school year, which is an increase over the 61.9 percent figure for the 2012-2013 school year. Since 2010-11, the graduation rate has increased by 4.1 percent.

This is also the fourth year in a row that graduation rates have increased for the overall population, according to the Department of Education. The nation’s high school graduation rate hit 82 percent in 2013-14 — the highest level since states adopted a new, uniform way of calculating graduation rates five years ago.

“The hard work of teachers, administrators, students and their families has made these gains possible and as a result many more students will have a better chance of going to college, getting a good job, owning their own home, and supporting a family,” U.S. Secretary of Education Arne Duncan said in a press release. “We can take pride as a nation in knowing that we’re seeing promising gains, including for students of color.”

h/t Disability Scoop

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