Watch This Legally Blind Musician See the Notes He’s Playing for the First Time

116
116

Nicholas is a 17-year-old aspiring professional musician with visual impairment.

Despite being legally blind, he is quite an accomplished cellist for his age — he has been invited to play at Carnegie Hall and also plays for the Gwinnett County Youth Symphony in Georgia and the Chamber Orchestra at his high school, according to his GoFundMe Page. He often has to memorize entire songs in order to play them because he can’t see the notes.

However, despite his accomplishments, Nick’s vision still stands in the way of him becoming a professional musician — he has to be able to sight-read music to audition. In order to enable her brother to accomplish his dreams, Nick’s sister Lakisha started a GoFundMe page to help get Nick a pair of eSight digital glasses for the blind. Then, the people at Kleenex stepped in to help raise the rest of the money.

I don’t think there is a better feeling,” Nick says in the video below after wearing the glasses for the first time. “I know that cello is something I’m going to want to do for the rest of my life.”

Watch the touching video below to see Nick play for the first time with his eSight glasses:

116
116
TOPICS
JOIN THE CONVERSATION

RELATED VIDEOS

How I Turned a Clerk’s Insult About My Neck Into Dystonia Awareness

1k
1k

When my dystonia was severe, my neck was turned and locked towards my right shoulder. Most people would look and not say anything. Then there were some who looked and asked questions, and then there were a few who were downright rude. Those were the tough ones to handle early on because I was already angry for having dystonia and I didn’t need someone to put fuel on that fire. However, one incident made me realize I can turn an insult into awareness when I respond appropriately.

I walked into a convenience store when I was having a particularly tough day. As soon as I went in, the girl behind the counter turned her neck to mimic how mine looked. At first I was taken aback and wanted to lash out at her for being mean. Instead, I stopped myself and realized that although it was rude, she didn’t mean any harm. She thought I was doing it on purpose. Instead of getting upset, I smiled and told her what was wrong. She apologized profusely for mocking me, and we had a nice conversation about dystonia. Instead of creating a scene, I appealed to her sensitive side and it became an education…for both of us! She learned about dystonia, and I learned that every encounter is an opportunity to raise awareness.

Not only did this encounter help me realize every situation gives me the opportunity to teach others about dystonia, it also made me realize everyone responds to us differently and what matters most is how we respond to them. I could have gotten angry, but I looked at it as an opportunity to talk to her. It also made me more comfortable, gave me confidence and better prepared me for future interactions.

Taking advantage of these opportunities helps us educate others, and at the same time, reduce our anxiety about dystonia. Give people a chance to show their compassion by letting them in. Smile. Say hello. Engage them in some way. All of this is part of the process of accepting our condition. When we are comfortable looking or feeling different, our social phobias diminish.

Since it is difficult to understand dystonia, I talk about it with as many people as possible. The more people I tell, the more awareness there is and the greater chance I will be better understood. Talking about dystonia also helps eliminate the stigma associated with chronic conditions, and it makes me feel less anxious and self conscious, especially in public.

There are times I can sense that someone is uncomfortable and wants to say something, but doesn’t know what to say or how to say it. In these cases, I try to break the ice with a brief comment, which is typically a lighthearted joke about my particular symptoms at the moment. Whether or not this leads to talking more about dystonia, at the very least it helps reduce the discomfort that I or others might be feeling.

Talking about it also provides an opportunity to help someone else with dystonia who may not know they have it. This has happened to me several times. After bringing it up in conversations, some people have literally said, “That sounds like what my friend has! I need to tell him/her about this. Thank you so much for telling me.”

Considering how unaware the public is about dystonia, not to mention the many people who are undiagnosed and misdiagnosed, I see it as a responsibility to tell people about it. How is dystonia going to get more awareness if we who have it remain silent? We live with a condition that is not as well known as conditions that affect fewer people. We need to speak up and play a part in dystonia becoming a household name by telling people about it, both friends and strangers. It matters to those of us living with dystonia to keep talking and answering all the puzzled expressions.

Tom Seaman the mighty.2-001

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here

1k
1k
JOIN THE CONVERSATION

What Life Is Like When Your Brain Can’t Retain More Than 3 Sentences at a Time

1k
1k

I am that boorish person who thinks of a reply while you’re still talking. I’m the one who adds something not quite sensical to a conversation. I’m the quiet one in your moms group.

No, it’s not out of rudeness or self-involvement. I have a working memory problem: my brain can’t process what you’re saying fast enough. It can’t get the words from my brain to my mouth quickly, either.

Do you know someone like me?

My inner computer works just fine; it’s just slower than most. It’s a manifestation of a learning disability related to executive functioning. What’s formed in the brain may not result in the right actions at the right time. People with working memory issues often have problems with reading, or, in my case, with math. Some also have ADHD, autism, dyslexia or dyspraxia. I have great difficulty with the kind of short-term memory that allows recall of recent events, remembering what I want to say or anything more than the gist of a conversation.

Ordinary small talk with people I don’t know is as panic-inducing as giving a speech to 10,000 people. As a child, I was painfully shy. As a student, I took copious notes because I didn’t trust my memory. I have always written out word-for-word what to say in phone conversations, down to my name and number.

In short, I like to say I exist on paper. I have been a writer since I was able to pick up a pen. Maybe my difficulty expressing myself out loud led me to write in the first place, or maybe I’m just wired for it. Verbal communication is another story. Tell me an amazing story and my default answer might be an insipid “Wow!” or “Really?” and that’s it. In my perfect world, I would magically stop time, get a transcript of what you said, highlight it and then respond.

Not knowing I had a disability, I chose the most unlikely career possible: TV news reporter. On one level, it made sense. I wasn’t really the one talking; I was gathering and spouting facts in a pre-ordered way. I was talking to a lens, not a crowd.

Live shots, on the other hand, made me begin to see my disability for what it was. At my first on-air job at a small station, I wrote a word-for-word script for my live reports and tried to memorize it. My brain could only retain two, maybe three sentences at a time. I’d glance down at my notes frequently while on camera because I forgot what to say next.

I got hired by a big market station on the merits of my packaged stories. My new boss took me to dinner a few weeks in and firmly said I had duped them; I was terrible live. I was given a week to stop reading my notes into the camera or I’d be fired.

Still not having a diagnosis or understanding why I was the way I was, I tried hypnosis. I prayed, begging for the words to flow smoothly from my brain to my mouth that day. I practiced speaking in front of mirrors. I wrote out live scripts over and over to burn the words into my brain before I went on-air.

Somehow I connected the synapses enough to get better and keep my job for years. I still use these coping skills, as there is no cure for working memory problems. And I find that if I use my finger (discreetly) to air-write the words as I speak, I am much more fluid. I have come to accept who I am while remaining open to therapeutic options. Because learning disabilities don’t look the same in everyone, it may be tough to know whether someone in your life is affected.

  • If it’s clear someone needs time to gather their thoughts, be patient.
  • Don’t be afraid to help them search for a word. Do it gently, not patronizingly.
  • If someone seems unusually quiet, don’t put them on the spot.
  • If you think your point is getting lost, summarize the most important details.
  • At work, the parent teacher association or any group setting, give all members the option of presenting feedback later.

Put the situation in parallel. You don’t expect a person in a wheelchair to keep up with a runner, although both can get from point A to point B. You don’t equate the grammatical errors of a non-native English speaker to a lack of intelligence. Use the same consideration with someone whose mind may work at its own pace. Understand that they may process and express information differently, and leave it at that.

1k
1k
JOIN THE CONVERSATION

When a Southwest Airlines Pilot Saw Me Struggling as My Baby Spasmed

895
895

My daughter has tuberous sclerosis complex, neurobehavioral differences, sensory integration dysfunction and epilepsy, among other things. Life is hard for her and for myself and her older brother who love her. This disease is ruthless.

And while life is hard, good people exist. I rarely ask for help from strangers, but sometimes, people see the need and give it anyway. These people are angels. One of them worked for Southwest Airlines.

I was traveling across the country with my two children, who were then 2 years and 3 months. Any parent who’s traveled in an airport with babies knows this in itself is a challenge. Little did I know what lay ahead. My daughter had begun to have infantile spasms just days before our trip, though at the time I didn’t know what they were. But I knew something wasn’t right with my baby.

The first time she did it, I thought it looked like newborn startle reflex. But I knew she was too old for that. They came in a rhythm, and my first thought was, “She’s seizing.” But I quickly wrote off that thought as new mother paranoia. After all, these looked nothing like any seizures I’d heard of. “Stop worrying,” I told myself. But as I tried to hold down her arms that insisted on jerking out every few seconds, I knew something wasn’t right.

I was sitting in the airport with my toddler and baby girl, when the spasms started again. I felt sick, like a rock was in the pit of my stomach. I didn’t know what to do. These episodes were happening more often, my daughter would cry after they ended, and she was difficult to console. I found myself snapping at my son out of my own frustration and helplessness. I was about to board a plane with a curious toddler who wanted to run, a car seat, carry on bags and a baby making weird movements and screaming bloody murder.

I prayed for some saving grace — that my daughter and son would sleep or something. And then someone stopped me before we’d even passed the first few rows of seats. The pilot said not to worry about my son, for me to find a seat with my daughter and that he would bring him back to me. I was hesitant but desperate, so I agreed.

A few moments later after everyone was seated and I was rocking and nursing my daughter, I heard over the intercom, “Hi Mommy!”

Everyone began laughing. I cried.

The pilot had seen me struggling and let my 2-year-old (who’s obsessed with planes, by the way), sit in the cockpit, push all the buttons and speak to me over the loudspeaker.

17145_280699792764_2695327_n

Since that time, there’s been a diagnosis, more seizures, brain surgeries and lots of therapy. Our flight was five and a half years ago, but it still sticks in my mind as a moment of grace, offered by a loving stranger to a scared mother before the battle began. It was a reminder that life is hard, but there’s beauty. And there are people who want to help. And moments of joy to sustain us on our journey.

To that Southwest Airlines pilot, thank you.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

895
895
JOIN THE CONVERSATION

How Eminem Helped My Son With Autism Improve His Speech

276
276

Yes, you read that right. Eminem.

So, my son Liam is on the autism spectrum. He actually spoke early, but he was super hard to understand. We were translators for years, and sometimes we still are. When he was 5, I was told that even though he spoke, he was still considered to have a speech delay.

Let me take a minute and say thank you to the two women who’ve been my son’s speech-language pathologists. He’s been in speech therapy since he was 5. People can finally understand what he’s trying to say, and he’s doing much better with context. However, he sometimes stutters and still has issues with some words. This is where we feel Eminem has helped.

I love music. We have always exposed him to all forms. (Hearing your 2-year-old sing “Jailhouse Rock” is adorable, even when it’s hard to understand what he says.) When he turned 7, he decided his favorite musician was Eminem. He loved to listen to him rap. I downloaded all the clean versions of Eminem’s songs I could find and filled Liam’s tablet with them.

Liam would listen to the same song, repeatedly, all day. If it came on in the car, he would screech until everyone was quiet so he “could rap.” Little by little, he was getting it. If you’re a fan of Eminem, you know how fast that man can speak. He also speaks very clearly, and you can tell what he’s actually saying. This was great for my son.

While Liam can’t keep up with all his songs, there have been a select few he has nailed. Of course, they are his favorites, and I really couldn’t count how many times he’s listened to them, practiced them and rehearsed them.

We went out on an errand today, and Liam asked for “his” Eminem. I obliged. It wasn’t long before my partner Pita and I were tuning out Eminem so we could hear our son singing. He nailed it. Every word. (Except for the curse words — those are spun out.)

To hear a boy who was once so hard to understand speak so clearly, so fluently and with such confidence — well, it warmed my heart. It warmed Pita’s, too. I commented quietly on how much Eminem’s music has helped him, and he agreed.

When listening to “Slim Shady” 15 years ago, I never would have thought my future son would be such a huge fan. I also never thought that Eminem would be helping my son to speak better. Funny how life works.

Therapies come in many different forms. Something that may seem like a kid just listening to music could be a child learning to speak better.

Liam
Liam rapping along with Eminem in the backseat of the car.

(DISCLAIMER: This post is in no way endorsing that Eminem will help your child speak better. I am merely relating our experience.)

Follow this journey on A Legion for Liam.

Feature photo of Eminem from Eminem’s Facebook page.

276
276
TOPICS
JOIN THE CONVERSATION

An Open Letter to Parents With Children With Cerebral Palsy

343
343

I don’t know what it’s like to have a child with cerebral palsy (CP), and I don’t know what it feels like when you are told the diagnosis for the first time. However, I think we can all benefit from talking about the hard things — the things we would rather keep to ourselves in fear that the other person might not understand. Be that as a parent to their child or a person with CP to their parent.

Throughout the years I’ve battled with my own emotions and thoughts about having CP. I somehow managed to get through it all and end up as a relatively happy person on the other end, even though some parts of the struggle never end. When talking to my own parents and other parents, I gained a deeper appreciation of all the challenges they faced. Out of these conversations, there seems to be three different categories to group these difficult feelings and thoughts into: guilt, loss and regret.

Guilt

Guilt relating to CP can mean a few different things. It could be that you as a parent feel you’re to blame for your child ending up with CP and that it’s somehow your fault. Maybe you didn’t do enough? What if you only had eaten healthier? Maybe you were too stressed during pregnancy? Well, let you tell you right now, it’s not your fault. Cerebral palsy isn’t “a hereditary condition,” according to CerebralPalsy.org, and its causes are difficult to ascertain exactly. Your child loves you as the ones who care for them deeper than anyone else. They don’t blame you for CP and neither should you.

Guilt can come creeping in other forms as well. Maybe you feel bad for not being there as much as you could for your child, or maybe you feel you are overprotecting them or sheltering them too much? As someone with CP, I can say I have felt overprotected or sheltered at times. And sure, it may have led to some outbursts of anger or frustration, especially in my teens. Do I hold any sort of grudge or feeling of resentment toward my parents today for this? Not at all.

I’m not a parent myself so I can’t speak from experience, but it seems from my viewpoint that parents of kids with CP balance on a constant tightrope. On one side, they want to grant their child freedom and independence, so that they won’t feel so isolated or dependent on you as a parent. On the other side, you know the reality of the world out there: the bullies, the judgment of others and the mental hardships they may have to endure when they realize their dream may be stopped because of CP.

I think what you have to consider when facing all these difficult situations is this: Your child loves you, admires you and looks to you for guidance, even if they don’t tell you straight up. They know you’re there for them if things get really tough. Life didn’t prepare you for the challenge of having a child with cerebral palsy. And considering that both the parent and child are thrown into it head first with no instruction manual, you’re doing pretty awesome just getting through the day.

Loss and Regret

I decided to group these two together because they’re pretty closely related. If you feel loss as a parent because of CP, chances are regret follows closely behind. I believe it’s completely normal for you to feel loss as a parent and to feel loss that your son or daughter won’t have the life of an able-bodied child. I believe it’s also normal for you to feel regret about all the things in daily life your child may miss out on as a result of CP. This doesn’t make you a bad parent. Nor does it make you selfish.

As someone with CP, I’ve felt loss and regret, too, because of CP. I felt loss when I realized I had to give up my dream as a kid to become a professional soccer player, and I’ve felt both feelings when I couldn’t participate in something with my friends or felt like an outsider. But as I’ve gotten older, I’ve grown to appreciate something that has always been there as a part of CP, and that is my initial perspective on life.

Life with CP is all I know and all I will know. This has some really good benefits. It means I won’t always feel the need or desire to be closer to “normal,” simply because I have no idea what it means not to have CP. I can’t really imagine it. This can create some conflicts between the person with CP and their loved ones, too. Whereas the parents may want to push their child to exercise more, stretch more or try harder to walk or walk better, the person with CP may be content with their functional level as it is and may not see the point.

We both have a responsibility here. The parent should try to understand we don’t necessarily want to be just like an able-bodied person. Some may, but that may lead to more harm than good. You can’t change CP; you can’t cure it, at least not right now. And because of that, if you constantly want something you can’t have, and you’re constantly hating what you have and what you are, you’re going to be pretty miserable. Therefore, I would advise you to help your child accept their CP rather than fight it. It’s not your enemy, nor is it theirs — it’s a part of them.

As people with CP, we also have to understand that even if we don’t always see the point in stretching or exercises, or even surgeries, we should try to think of the fact that we want to stay happy in the future. The work you do now can be really important later down the road. I used to hate this kind of reasoning, and I’m not expecting you to like it either, so if that doesn’t motivate you, try to find smaller, more achievable goals of improvement you can accomplish in a shorter time period.

Also, remember that because your parents want you to exercise more, or walk better or what have you, it doesn’t mean they think you aren’t good enough; you are, and it’s not about that. They view life from their perspective, and what they have been able to do and enjoy in life. They just want you to feel many of the joys in life that they have, because they love you, not because they don’t think you’re good enough.

It is my hope that we can continue to learn from each other and grow together. That way, we can heal each other, so I hope you will accept and embrace this open letter as my contribution toward that.

A version of this post originally appeared on CPExperience.

Lead photo source: Thinkstock Images

343
343
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.