How Jolly Ranchers Help Me Live in a World Full of Food I Can’t Eat

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I peel away the wrapping paper to reveal the colorful cardboard box holding my birthday present, a mega box of green apple Jolly Ranchers. I unwrap the slippery plastic wrapper for the hundredth time this week and pop the sticky sweet goodness into my mouth. You’re probably wondering who thought giving a 14-year-old a box of candy as a present was a good idea, but it’s more than just candy to me — it’s my sanity. I know it sounds weird, but when it feels like your genetics betray you and don’t let your organs do their job, like digestion, hard candy becomes a pretty big part of your life.

Picture yourself sitting in a room full of tables and chairs with a hundred other people surrounding you. Everyone is told to sit, so you do. Waiters bring out silver platters covered in tall reflective covers, concealing the origin of an incredible smell. They put the plates down and an array of delicious-looking food is revealed. You look down the line and see everyone is excited about what was put in front of them, it is everyone’s favorite meal. This has to be some sort of heavenly dream for everyone else, but for you it’s some sort of nightmare. Imagine sitting in front of food you so desperately want each and every day, and you just can’t have it.

You are surrounded by a world advertising this “incredible experience.” Food is ingrained in our society, and for a good reason, too; if it weren’t, all you food-consuming mammals wouldn’t be here today. What people might not realize is that eating is a part of every aspect of our culture: you go to a party and there’s food, go out with friends and there’s food, you go to the movies and there’s food, go to a carnival and there’s food and you get together for Christmas and there’s food. And for Pete’s sake, there’s Thanksgiving, a holiday that’s supposed to make us think about what we are thankful for and appreciate all that we have, but instead most people just stuff their faces with food and stare aimlessly at the TV watching football.

Commercial after commercial is about food. “All you can eat” this and “finger-licking good” that. I’ve stopped watching regular TV for the most part for exactly this reason, but for the sake of research I watched primetime TV for an entire hour recently and about 60 percent of commercials that hour were for a restaurant or somehow related to food. Driving down the highway, BOOM, a million food billboards and signs for food at the next exit. There’s no escaping the vivid pictures of the juicy, greasy food I cannot eat. And the last thing I want to hear on my Pandora during the ride to the hospital is a commercial telling me to drop everything and drive to the nearest fast food place to try some burger or fries I can’t even smell without gagging, let alone eat.

My bag of candy is the only way I can survive sitting at meals. At parties, I have my pack of Ice Breakers; at Thanksgiving, I couldn’t get by without my pie-flavored gum and apple Dum Dums; and at birthdays I have my trusty birthday cake gum. Sounds great, right? Candy for breakfast, lunch and dinner — every kid’s dream. But what about when I start to get tired of the sweet flavors of Jolly Ranchers, and I can no longer ignore the more than slight chemically taste of the artificial gum? Most people can just put down the candy and go eat a cheeseburger. I can’t.

Sometimes my green apple Jolly Rancher can’t help. I don’t really sit down with my family for meals, and I don’t go out with friends if I know the night will revolve around food. I make it work for the important parties and events for holidays and birthdays, but the rest I have to learn to let go. I have better things I could be doing than eating; with my feeding tubes and central line I can eat, drink, talk and walk all at the same time. I could be learning Mandarin, or training to be an undercover CIA spy or heck, finding out the key to the universe.

My green apple Jolly Ranchers really do pull me through, most of the time. If it weren’t for them, I would’ve spent many birthdays and school events wishing I could taste something. Even though they can only help so much, my candy means I can be more comfortable around people that are eating. A green apple Jolly Rancher is so much more than another sugary snack; it truly is my sanity.

Follow this journey on Climbing Rivers.

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5 Things I Learned as a Physician and Mother of a Medically Fragile Child

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I’m a neurologist, and my daughter has severe neuromuscular disease. Here are the five things I’ve learned as a physician and mother of a medically fragile child:

1. You can feel really, really alone.

Having medical knowledge when your child has a serious illness is a double-edged sword. You’ll likely get a diagnosis faster, but you will also struggle with knowing too much. You know everything that can happen, and you’re able to recognize the signs — long before anyone else — of advancing disease. You keep it to yourself because you don’t want others to worry.

It helps to find people who understand, and for me, this has been a closed Facebook group for parents like me. They are the true experts of the things I care about, and I can be “just” a mom there.

2. Being “just” a mom means you don’t always have all the answers, and that’s OK.

My first experience as a patient in my field was when my medically durable 3-year-old son got viral meningitis. I felt like a paranoid neurologist mom taking him to the hospital with headache. When the spinal tap showed 800 white cells (normal is under 6), my medical knowledge went out the window. This is viral, but this is a lot of cells! Viral meningitis can be managed at home — are they going to send us home?

The doctors wanted to leave it up to me, but I felt paralyzed. I called my friend (another neurologist mom) who cleared my head: I was a mother who didn’t feel comfortable taking her son home, so we belonged in the hospital.

3. Desperation is powerful.

We are trained to practice evidence-based medicine, but when you’re facing a devastating disease without a cure, you want to believe in something (or someone) that can offer hope. Science is important, but when there is no cure, you still have to offer hope (see #4).

Michelle Moon the mighty.2-001
Photo credit: Aubrie LeGault, Capturing Grace Photography

4. Kindness goes a long way.

Having a child in the pediatric intensive care unit (PICU) can be hell on earth. I think I put up a good front most of the time, but the wounded animal was not far from the surface. When things were not going well, I clung to the little acts of kindness from our caregivers: sympathetic looks, pats on the shoulder, acknowledgement of my daughter’s beauty and strength. I believe the simple act of caring can give hope and get families through the worst of times.

5. Serious illness can be financially devastating. Families with medically fragile children need support and the system for determining disability and eligibility for services is broken.

I think we all know this, but you don’t understand how bad it is until happens to you.

When my daughter turned 4, she could no longer sit without support. Her disability was apparent with a fleeting glance, but she didn’t meet our state’s definition of disabled. I was sure that I, a motivated neurologist mom, could change this with a few phone calls. I was wrong. It eventually worked out, but it took eight months and it was ridiculously complicated. When we finally got the letter from the state that acknowledged that my now BiPAP-dependent daughter was disabled, it felt like a victory. It meant that we finally had a chance to get much needed help.

I have almost 20 years of medical experience and treat people with developmental disabilities that most have never heard of. If I had this much difficulty getting my state to simply acknowledge the obvious about my own daughter’s disability, what is it like for everyone else?

I believe that our world would be better if everyone had a personal connection with a loved one living with disease and disability. This is why we share our stories.

Follow this journey on Julianna Yuri.

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Facebook Banned Her Photo. So She Started This Selfie Challenge.

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When Mighty contributor Lisa Goodman-Helfand tried to promote her personal blog, “Comfortable in My Thick Skin,” on Facebook, her ad was banned because of the photos she’d chosen, one of them being a closeup of her face. Goodman-Helfand has scleroderma, a chronic disease that causes hardening and tightening of the skin and connective tissues, according to the Mayo Clinic. There’s no known cause or cure, and even though the disease affects about 300,000 Americans, not many people are familiar with it.

According to Goodman-Helfand, Facebook said the photo, which also featured a friend with scleroderma, focused on a specific body part and that images like this “typically receive high negative feedback.” Only after the story gained traction on Yahoo Canada did Facebook reverse its decision, saying the ad was “mistakenly disapproved.”

Goodman-Helfand wanted their faces to illustrate how scleroderma affects people differently. And after this incident, she realized more people needed to see the faces of this disease, so she started the Face Off For Scleroderma campaign Sunday.

Goodman-Helfand is calling on anyone, not just those with scleroderma, to post a selfie on social media, makeup-free with the hashtag #sclerodermaselfies. While she wants to raise awareness for the disease, she also hopes to promote positive body image for everyone.

“This is about showing the world that beauty comes in all forms and we should not allow society to define beauty for us,” Goodman-Hellfand wrote on her blog.

While many users have taken to Twitter and Instagram with their scleroderma selfies, former “Full House” and “America’s Funniest Home Video” star Bob Saget promoted the campaign on Facebook.

 

 

 

Every #scleroderma patient endures unwelcome change and challenges. The SRF supports Lisa Goodman-Helfand...

Posted by Bob Saget on Saturday, August 8, 2015

 

Families from all over have also shown their support.

#sclerodermaselfies The Sharons are going bare for scleroderma in honor of the more than 400,000 patients who suffer...

Posted by Kimberly Johnson Sharon on Sunday, August 9, 2015

#sclerodermaselfies I’m going bare for scleroderma in honor of the more than 400,000 patients who suffer from this rare...

Posted by Michelle Blatt Moody on Sunday, August 9, 2015

I was nominated by Julie Cohen Benensohn for #sclerodermaselfies I'm going bare for scleroderma in honor of the more...

Posted by Rachel Field on Sunday, August 9, 2015

#sclerodermaselfies I’m going bare for scleroderma in honor of the more than 400,000 patients who suffer from this rare...

Posted by Emily Berman Crane on Sunday, August 9, 2015

 

Men posted makeup free photos, too.

#sclerodermaselfies I’m going bare for scleroderma in honor of the more than 400,000 patients who suffer from this rare...

Posted by Gregg Hollander on Sunday, August 9, 2015

#sclerodermaselfies I'm going bare (no makeup) scleroderma in honor of the more than 400,000 people who suffer from this...

Posted by Joseph Hailpern on Monday, August 10, 2015

 

Join in on the movement and post your selfie today. Here are Goodman-Helfand’s instructions:

  1. Take a selfie of yourself without any makeup on (girls, boys, and men — you are encouraged to participate).

  2. To learn more about how this campaign started, click here.

  3. Scroll down to find the details on how to donate and make a donation, if you have the means to do so.

  4. Copy and paste the message below (only the text that is underlined should be copied and pasted) with a picture of your bare face (no makeup) on Twitter, Facebook, Instagram or any other social media that I don’t even know exists.  If you do all three, that will give the campaign the most “points “ for the hashtag. Make sure to include your new bare-faced  selfie with the following message:

#sclerodermaselfies I’m going bare for scleroderma in honor of the more than 400,000  patients who suffer from this rare disease.  I nominate (tag a friend), (tag a friend) and (tag a friend) to take their face off for scleroderma and keep the chain going by nominating three more friends. Go to www.comfortableinmythickskin.com to make a donation, learn more about the campaign, and the bare face that started it all.

*We want everyone to participate; men and kids’ bare selfies send the same important message!  Anyone not comfortable posting a bare selfie is still encouraged to join in. We want to show that all faces have a place on Facebook.

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How I Found Help When My University Lacked Mental Health Services

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There are lots reasons to be anxious in college, including the excess tests, the pressures of achieving the right grades, varying teaching styles, big classes and being away from a comfortable environment. This doesn’t even include the financial strains during school and the debt when it’s over. The list goes on and on.

Unfortunately I’ve suffered not only with anxiety in college, but with a different demon — obsessive-compulsive disorder. When I went to study abroad two years ago to complete my degree, it almost finished me.

When I went to school at the University of San Francisco, one of my first things I did was visit one of the counselors to see if my mental health services were covered. The answer was yes! It was brilliant. Not only did I feel in charge of my health for the first time, I could afford it.

After a year I transferred to a school abroad in Dublin, Ireland where there were no counselors and no real resources. The school was small and it was hard to find someone I could really trust with my needs. I became stressed out and irritable as my final year began. It’s hard to talk about mental illness to someone who isn’t trained or doesn’t specialize in it. Feeling isolated and misunderstood, I just shut down. During my second to last semester I had a teacher that made my OCD spike so high, I fell into a major depression. Getting out of bed was a chore. I tried to be happy, but my head was making me feel anxious and my body wouldn’t function properly. I was seeing a counselor at the time, but I needed more support than what I could find. I wanted to have a Taylor Swift attitude of “Shake it Off,” but my life had slowly become like Taylor Swift’s “Blank Space” music video.  

I was one semester away from finishing my time abroad but was so depressed I didn’t want to go back. I felt disconnected from my body. I was far removed from everything and everyone. I was afraid of what I saw in the mirror. I was between apartments during this time and my friend, Rion (who I met at a job in Dublin the previous year), said I could stay with her when I got back.

I didn’t know Rion very well, but she was the kind of person I knew would make me feel at ease. When I walked into her beautiful haven of an apartment, I immediately fell into the depths of the sleep. But this time I was resting because of sheer exhaustion, not from my depressed state. Rion arrived home later that evening, gave me a long hug and said how much she missed me. She has a way of making me feel like I am the most prized human on the planet. I stayed with her for two blissful weeks. The depth of her patience and love made me feel like I was safe and could talk about the burdens in my life. I didn’t want to weep anymore. I knew when I climbed into bed next to her I would sleep soundly. Little did I know we were both being support systems for each other. The circumstances of our own anxieties and worries brought us closer together. I knew the special gift Rion had brought me, which was not only her friendship, but also the gift of consistency I needed to calm the storm that had festered in my mind.

While I couldn’t find the support I needed at the university, reaching out in a different way helped me to find it in myself to face this disorder. There are still times of anxiety, but I know I can talk to a friend and develop a healing pattern for myself.

But it shouldn’t need to get that severe before you take action and seek help. What I really needed was more support in the beginning and mental health resources that are lacking on many campuses. My advice for students going to school who have limited or no counseling centers, or for the students who are going abroad where there are none, is to check to see what resources are available. It may mean stepping outside of the university setting and seeking alternate resources. I also realized my peers who were going through similar experiences were valuable resources, and I was not alone.

The challenges we face are not isolated experiences. Help is available, even when it’s not in the traditional ways we’ve come to expect. In an ideal world, mental health resources would always be available, and people would understand mental illnesses are just as real as physical ones. But we’re not in that ideal world yet. 

So if you find yourself in an overwhelming situation and it seems like all hope is lost, remember no education is worth your life. I’ve learned and continue to learn that seeking help is a strength, not a weakness. Reach out to someone you trust. Take a break. Regroup and then regain the life you deserve.

The Mighty is asking for mental health related back-to-school pieces. Parents: do you have advice or a story about navigating the school system with a son or daughter with a mental illness? Students: Do you have a back-to-school story or tips for maintaining your mental health while in school? 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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4 Things I’d Like My Future Step-Siblings to Know About My Autism

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In less than a week, you will become my step-sister and step-brothers. Over the last year, we’ve had many adventures together: the amusement park, the science museum, the water park, the movies, restaurants and so many others. It’s been fabulous, but I’d be lying if I said it was always easy. You see, I have autism, a developmental disability, which sometimes makes things harder for me. Here are four things I’d like you to understand about me before I become your step-sister:

Chloe Rothschild the mighty.2-001

1. Why I get to use my gadgets at restaurants.

You probably don’t think it’s fair that I get to use my iPad, phone and or headphones at restaurants. If you tried using them, you’d more than likely be told no. Why am I allowed to have fidget toys at the dinner table or you’re not? Let’s think about it like this: When I play my iPad, it allows me to cope better. My iPad serves as a tool. This tool allows me to focus and participate to the best of my ability. It keeps me calm.

Sometimes, the world of autism can just be too much and this helps. I don’t expect you to fully understand this yet, since you’re young. It will come with time. In the meantime, know that I love you, and I’m sorry if you feel like things aren’t always fair.

2. Why I get frustrated sometimes.

You’ve seen me get frustrated and upset occasionally. I’m sure you sometimes wonder why. I’m sure you probably have questions. Please know that you can always ask questions. You see, autism affects my ability to communicate and to get the right words out when I want to say them. Sometimes, this results in frustration. Please know that I’m trying hard each and every single day.

3. Why I’m by myself.

I’m sure you wonder why I spend so much time in my room. My sensory system and the way I take in and process things going on in the environment around is different than how you process things. Coping requires extra effort, extra tools and extra breaks.

4. Why I love you.

Above all else, please know this: I love you. I’m so grateful that you accept me, support me and love me. Please know I’m excited for the many more adventures that lie ahead in the future.

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To the Educators Who Don’t ‘Get’ My Child’s Epilepsy

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Dear Teacher/Principal/Counselor,

I’m writing to you today to express my thoughts about my child with uncontrolled epilepsy and hopefully give you some insight into her.

First, I would like to say a large majority of you do an amazing job. I don’t think I would cope with looking after 30 minions every day and taking work home like I know you all do. Having to deal with 30 parents makes me quake in my boots. It’s not just a job; it’s a way of life.

To the amazing teachers, you take on board my child’s needs and recognize the impact my daughter’s epilepsy has on her and us as a family, even when it may not be in your face on a daily basis. You go above and beyond in putting my child’s needs at the forefront. Thank you. Thank you. Thank you.

In regards to the small percentage of teachers/principals/counselors who just don’t get it, I would like to share with you the following:

Our child’s life is not a walk in the park, and I hope you never have to experience what she and thousands of other children go through. I thought it best to try and place you in her shoes for just a little while.

Imagine having two Valiums and then teaching a class. Just close your eyes and imagine. You feel slightly numb and slightly dazed. Would you find it easy to teach concepts, remember each child’s needs and process information coming at you thick and fast?

Our kids have this experience constantly from the epilepsy medications they take and from the seizures that can make them feel like they’ve taken a Valium… or five.

Also — it’s not just epilepsy!

Well, for some kids it is because they have no medication side effects and they’ve found a way to control their seizures. However, for my child and many others, it’s a whole lot more than seizures. The byproduct of uncontrolled epilepsy brings physical, psychological, sensory, learning and developmental issues we never knew could happen.

So, again, let’s put yourself in my child’s shoes.

You get up in the morning and as soon as you wake you’re inundated with the rush and noise of the house coming alive getting ready for school. All you want to do is sleep because after a seizure last night your brain and body are exhausted, but you’re tough so you get up and start your day.

You like things to be routine. You have so many things in your life you can’t control that what you can control something, you will. So you go and organize breakfast and break down because Mom has run out of your favorite breakfast food. You let everybody know how angry you are. You’re soothed, and a new breakfast is organized.

Now it’s time to pack your bag and get dressed, but these aren’t simple things because you find it hard to plan. You ask your mom to say one thing at a time so you can get each thing done.

 It’s time to put your clothes on. Remember, shoes have to be comfortable. No tongues, nothing moving and tight but not to tight. You’re lucky today that your mom found a pair of boots you like that don’t cause your feet to be on sensory high-alert. Now for undies — but only a certain type of undies because some cause you sensory overload and you’ll get upset again. Clothes have to be comfortable and not have any tags in them.

Now you’re in the car on the way to school. You make sure Mom doesn’t have the music up to loud; it beats through your head if it’s to loud. You have a set volume and your mom knows it. But you can’t always control the volume of your sister.

Let’s step back a minute. All this before getting to school. You’re exhausted because of a seizure the night before, but you know you have to push through.

You get to school just as the bell rings and all you can hear is children’s chatter. The same noise you can’t go near when at a supermarket or shopping center, but you have to deal with every day, so in to class you go.

Your planning and processing are slower, so thinking about organizing yourself can be tiring. Getting your bag packed away and ready for schoolwork is enough to put you over the top, but you just have to keep going.

Sitting at your desk, you’re still exhausted and in sensory overload. Now you have to read and write and listen. This seems easy enough, but learning is hard, reading is exhausting and difficult, listening takes up space in your head as you try to block out the noise around you and writing uses muscles you didn’t know you needed. You have low muscle tone so your core muscles don’t work as well. You fight to hold your posture while you write but usually end up huddled over the desk.

Sometimes the kids are quiet, other times they are loud. You have to let it wash over you and let the sensory input nestle in the back of your head because you’re a good kid who doesn’t want to lose it.

Now it’s recess. Yay, a break from work, but work doesn’t stop. Your body has to work hard to catch up to your friends. You can’t run as fast and play as much; you get tired quickly. You’re lucky you have a few friends who understand. Most of the children don’t though, so sometimes you get left out. You hate feeling left out and you sit there quietly on a bench saying, “Why me? It’s not fair”.

Recess ends and you go back to class. You have to remember what’s coming next and hope that your routine is the same, and if it isn’t, you hold it in a bit more because you’re a good kid who doesn’t want to get into trouble. Lunch is the same again, but this times it’s longer and more exhausting. Socially you’re struggling in keeping up with conversations between friends because you’re tired and about to lose it.

The day continues and you become a kettle slowly simmering away. You want to let steam off, but you hold it together.

The day is over and you get in the car. You scream at your mom and your sister and become whiny, yelling and yelling. Your mom gets you and so does your sister, but that doesn’t make it any easier for them. Your mom asks how your day was and like the steam exploding from the kettle, you let it all out.

Today, as with most days, you’ve had sensory overload, trouble processing and exhaustion. Now let’s add homework. Homework you hate. This is not because you don’t want to learn, but because you are just so very exhausted. What should take 20 minutes takes two hours. You melt down throughout it and keep on giving up. Schoolwork is always hard. You learn to count your wins and start to understand that you just have to try your best, but it’s so tiring. You have dinner and start to chill back with your family. Then a seizure starts and consumes your night and your family’s night. You fall asleep after the seizure finishes. It’s not just epilepsy; it’s your whole life consumed. Your body and mind are just getting by each day. The next morning you rise and you do it all over again.

To those who don’t get it, would you like to trade shoes with my child? I know I wouldn’t! I would if it would take it away from her, but I can’t. Therefore as a mother I’m fighting not just for you to try and understand, but I’m also fighting for her every day of her life – day in day out, and I’ve been doing it for years and years.

So please, be gentle with my girl and with me. My momma bear with big gnarly claws will come out when you don’t get it, and I can be relentless. This is because I live it each day with her and I must fight for people to understand her so she can get the best out of her education.

My beautiful girl, who from the outside looks like any other child, needs you to know that epilepsy is not all she fights against. If she has to fight against teachers or principals or counselors who don’t understand her, you’re adding to a little girl’s baggage that’s already weighed down by what most of us will never experience in a lifetime.

Thank you for reading my words about my girl, and I hope we never have to raise this issue again.

Yours sincerely,

A frustrated mom

P.S. It’s not just seizures.

Follow this journey on Ragdoll Mummas.

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.

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