When I Realized Why Mealtime Noises Make Me Irritable

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I was a teenager when my grandmother moved in with us. My grandfather had passed away and my grandmother suffered from Alzheimer’s. My parents brought her back to Virginia so we could help care for her. Grandma was an “old school” kind of gal. She wore polyester dresses, stockings with heels, she had her hair done weekly and carried a pocketbook.

My mother and older sister were her primary caregivers. She enjoyed sitting with me to watch television in those days. She also had false teeth. I would cringe at the sound as she played with the teeth in her mouth while I was trying to watch a show. That was just the beginning.

Many years and four kids later, I started to notice how moody I became when my kids would chew with their mouthes open while eating or chewing gum. I was also easily annoyed at repetitive noises such as the tapping of a pencil or the sound of a dog licking. I felt like such a “mean mom.” I was constantly saying “chew with your mouth closed” and “stop making so much noise.” I convinced myself that this was normal because I was teaching my kids manners. I worried I was becoming less patient with age and chalked it up to being overwhelmed. During that time period, I had read somewhere that when you are stressed, your senses are heightened. I am not sure if that is true, but considering what I was going through, I embraced the theory.

Many times we would hang out with our family and friends on the weekends. We traveled frequently during the summer and spent most holidays together. They became our extended family. We have seven children between our two families. An average get-together included slamming doors, toys being thrown, movies playing, temper tantrums and kids screaming in laughter. The kids usually ate before the adults due to space and the urgency of playtime. As the kids grew older and actually sat with us for meals, I started noticing the sounds of mealtime became less and less tolerable. I remember specifically on one of our trips to the mountains, their daughter was sitting next to me during dinner and eating. I heard every scrape of the fork on her plate and every slurp of her drink. It sounded as if it were in stereo. The sound sent a “rage-like” feeling to my brain. I literally wanted to punch someone (of course I wouldn’t). From that moment on it became common knowledge that I was moody and irritable with noise. However, for me it was frustrating. It wasn’t all noises. It seemed to center on meals and repetitious noise.

Out of the blue one day I received a text from my friend with a link attached. When I clicked on the link, it was an article talking about Kelly Ripa and her struggles with misophonia, also sometimes called selective sound sensitivity syndrome. Miso-what? I thought. I read the article and other information that surfaced after the announcement. I was finally vindicated! There was finally an explanation for my peculiar mood swings!

Today my family and friends are more understanding about these aversions. They still tease me, but they understand it could be neurological. Understanding my reaction has been a lifesaver. Thank you, Kelly Ripa!

A version of this post originally appeared Her View From Home.

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When I Learned Misophonia Is Something I Can't Control

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Every day, I dread eating meals. I actively avoid places where I know there will be a large amount of people eating, which normally means restaurants and movie theaters. It’s even worse when I’m in a place with little to no background noise. In short, I’m driven absolutely bonkers when people chew food and gum. This isn’t painful or loud, like with hyperacusis — this is misophonia, something that, as I now know, so few people have and fewer people understand.

For years I thought that the people around me were just being rude, and that I was somehow the only one catching onto this. One of my best friends chews with his mouth open, and no one will say a word, while my wife seemingly chews very, very loudly, regardless of what she’s eating. I have never been able to understand how others around me can stand to listen to others eating or chewing, especially when some people do this so much louder than others.

I’ve often described this as being absolutely infuriating to me, causing me to say things like, “I’ll rip out your lower jaw if you don’t spit out that gum!” Normally, I need to excuse myself from an area so I don’t have to suffer listening to that sound. To me, it’s comparable to raking your nails across a chalk board, but the reaction is magnified a million times over.

I sat and attempted to deal with this nearly my entire life. I can remember asking my brother not to eat near me because he was “too loud” and trying to leave the dinner table quickly so I didn’t have to listen to my folks. All the way up until I was 29, I assumed that I was one of the few people that found this “impolite” and that a lot of people around me needed to obtain some basic table manners.

Thankfully, I know now this isn’t something I’ve been able to control this entire time, and that I have not been purposefully ignorant of how to tolerate people making noises while they eat. This is a condition that, from what I’ve been able to gather, is “hard-wired” at birth; it doesn’t just happen out of the blue. I also understand that this is something very few people have — which explains why I’ve been so isolated up until a friend recognized what I had and explained to me a bit more (a massive relief, I must say!).

Unfortunately, there isn’t any treatment that’s proven effective for coping with misophonia on a day-to-day basis. What I’ve found that works for me is to turn up the music/TV, wear headphones or earplugs, and, in extreme cases, leave a room entirely. It’s depressing at times, especially when I want to spend time watching a great show with my wife, but I can’t enjoy it because I’m focused on her chewing, the very thought of which has me worked up right now.

I’m sure I’m not the only one who had the belief that this was something they could control, and I hope that this reaches those people. It’s not something that I’m doing wrong, and it’s not something that the person making the noise/sound is doing wrong; it’s something that I’m just not able to process or handle. Knowing this has given me the courage to tell my friends, family and co-workers why I need to have the TV up way too loud or to politely spit out their gum while I’m in the room. I’m thankful that everyone around me has been accepting so far, and I hope that, if you’re suffering from misophonia, you have the courage to do the same.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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 Submit a Story page for more about our submission guidelines.

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What I Wish My Family Knew About My Misophonia

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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.

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To the Person Who Helped Me Withstand the Unimaginable

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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.

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The Gift That's (Still) Most Needed This Holiday Season

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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

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The Love a Special Needs Parent Has for Their Child

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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!

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