To the Student Who Said It’s Unfair I Have a Locker When Others Don't

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Today you saw me using my locker in the lab buildings at the university — the ones we aren’t meant to have on long-term loan and are emptied out after each session. You saw me putting the key back on my lanyard, putting my lab coat, folder and some other bits into the locker, shutting the door and walking out. I heard you mention to your friends how unfair it is that I get to have that locker and nobody else can. Well, let me explain why I have that locker.

I have a couple of health problems: brittle asthma, adrenal insufficiency, diabetes, supraventricular tachycardia (in other words, my heart goes super fast sometimes), I’ve had both hips replaced and am waiting on shoulder surgery. I also have a couple of life-threatening reactions. (I’m not actually in university right now, because I’m in the hospital following a life-threatening exacerbation of my asthma.)

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Vicky’s medical supplies.

So, needless to say, I have to carry a fair amount of extra medications around with me. It’s what I like to call my “get out of jail free” kit. It’s basically the stuff that, if it really came down to it, would keep me alive. It sounds dramatic, but it’s kind of true. What you see in the photo is my EpiPen — for when I react to the balloons that are currently all over the student union, or have a massive asthma attack that goes from zero to 100 in five seconds — my steroid injection kit, some nebulisers to stop my airways from closing up when I have a reaction to someone’s deodorant, and some cereal bars for when my blood sugar goes dangerously low and I start getting grumpy and confused. That little orange tin has a lot of tablets in it, too. It really does start to add up. And that’s not including the device I have to carry around for my nebules or my blood sugar testing kit.

So I have to carry a lot around in my backpack. Also, don’t forget that I’m waiting for surgery on my shoulder, so carrying a heavy bag can add to the pain I get there and in my hips, which have both been replaced.

Add into that normal university stuff, like books, notepads, a pencil case, a drink and then whatever else I have in my bag. It gets heavy. I also like to keep spare supplies in there in case I manage to forget something important, so I’m not stuck at school without a rather important medication or piece of equipment. I think that’s fair.

But I know “it’s really unfair that there’s one rule for one person, and another for everyone else,” and I would totally agree with you that they should provide us all with lockers. But there are about 3,000 people at our university.

I know you didn’t mean it in a nasty way, or at least I hope you didn’t. But I hope now you can see why I don’t like having to carry a heavy lab coat, my folders and lab stuff around with me all day after a lab, and why I do need to have a locker. It’s important.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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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When a Stranger Suggested My Asthma Was All in My Head

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I was at a friend’s graduation party when a family friend of hers who I had never met before asked me if I had been a “sheltered child.” I assumed he meant had I grown up with parents with conservative ideals so I said yes. “Ha!” he yelled, “That’s why you have asthma. Amish kids don’t get asthma because they’re outside all the time.” But before I could tell him I misunderstood his question and I had, in fact, been an outdoorsy kid, he said asthma was a mental problem and he had read about a mysterious “study” that supposedly stated Amish kids have lower rates of asthma than the general population.

This attitude has followed me my whole life, from the teachers who had no interest in helping me catch up when I missed school because I was sick to gym teachers who made me run until I blacked out to prove a point.

I’ve tried every medication there is. I’m on the most expensive and, apparently, most generally effective medication there is for adults with asthma like mine. And my asthma is still not what most people would probably deem “well controlled.”

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A lot of people do grow out of asthma, yes, but some people don’t. Your cousin’s asthma may not be the same as the kid next door’s asthma. It can affect people in different ways. And no, it’s not in my head. I didn’t make part of my left lung collapse when I was a 7-year-old kid mentally. My parents didn’t cause me to have it by sheltering me. And no stranger ever has the right to approach anyone with any illness and try to dictate their own story back to them, invalidate them or give them crackpot “advice” about a “magical cure” as if we don’t know anything about our illnesses.

After 27 years of living with a chronic illness that interferes with my daily life, I know the most valuable thing you can do for any sick person, regardless of what kind of illness or disability they have, is to listen and validate. To really hear what they’re saying and not to try to interject because some things you hear might scare you or make you uncomfortable. It’s the complete opposite of what most of us, at least me, have experienced our whole lives, but it’s a crucial step in tearing down this strange victim-blaming culture I’ve seen in the chronic illness world.

We’re all making the best out of what we’ve been given. It’s not all in our heads. It’s real and it can be scary. Trust me, I know. But acting like our symptoms and illnesses don’t exist isn’t helping anyone.

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These Free Comic Books Explain Asthma in a Way Kids Can Understand

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In the United States, about 7 million children have asthma, a lung disease that inflames and narrows the airways, according to the National Heart, Lung and Blood Institute. Even though so many kids are affected, not all children understand why some of their classmates may have a hard time during recess or gym class. That’s where Medikidz steps in. This organization created a series of doctor-written comic books to explain medical conditions to children.

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Their latest series follows a 10-year-old boy named Savion as he learns the science behind asthma and the importance of proper treatment for the disease. The most recent book in the series focuses on the right way to use an inhaler.

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Medikidz and its partner Meda, a pharmaceutical company, believe education is the key to helping people living with asthma. In the United States, there are more than 3,600 deaths due to asthma each year, many of which are avoidable with proper treatment and care, according to the Asthma and Allergy Foundation of America.

“One of the best ways to help prevent these unnecessary deaths is to ensure that patients and caregivers have a better understanding what causes asthma, how to recognize worsening symptoms and the importance of listening to your doctor and taking your medication on a regular basis,” Stuart Loesch, Vice President of Marketing for Meda, told The Mighty in an email.

The books are available for free, and anyone can get them online.

 Related: Explaining Epilepsy to Your Kids Just Got Easier

 

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When Non-Doctors Give You Medical Advice About Your Child

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I’m not a doctor. I haven’t even made it to Season 4 of “Grey’s Anatomy” — yet. However, my son, Branko, attracts a lot of attention from amateur doctors, people who think they know a thing or two about medical science. Here are a handful of medical clichés people have shared with me over the years:

1. I would never get the flu shot; it doesn’t work, and I would never give it to my kid.

Personally, I think that’s a really bad idea, but beyond that, I’m pretty sure I wouldn’t let my son out of the house if the flu shot were unavailable. For him, influenza means a hospital visit with the possibility of a surprise intubation. (And FYI, a surprise intubation isn’t any more exciting and fun than a planned intubation.)

If you don’t want to get the flu shot, that’s fine. But please don’t tell me about it, because I will literally obsess over whether you have sniffles or not until flu season is over. And please, never mention that the flu vaccine “doesn’t work.” For my own sanity, I need to believe that it works.

2. My best friend’s cousin’s daughter’s aunt had the same thing as him and she’s fine now.

Part of the reason why I started writing about my son’s medical condition was to make the complexities of his condition more clear, for both myself and the people in our lives. He has a one-of-a-kind genetic condition; there isn’t even a name for what he has. No one else’s symptoms are quite like Branko’s. Nobody. No one. Zilch.

By casually mentioning someone had something similar and is now “fine,” the severity of his condition is downplayed. It’s a bit insulting. Having bones like his — ones that randomly grow however and wherever they feel like — is serious business. It’s not a sunburn. It’s not a canker sore. It’s not even the same as when your friend, Sammy, had a cast for two weeks after falling off a Pogo Ball.

Also, what does exactly “fine” even mean? Is “fine” the same as being an average, healthy person who doesn’t need a mobility device? We aren’t really striving for a typical definition of “fine” over here; I suppose our definition is a bit more relaxed. “Fine” at our house means happy and stable, whether he’s in a wheelchair, a hospital bed or running around the backyard with no pants on.

3. All those chemicals and drugs can’t be good for him.

There seems to be a growing trend where completely sane and rational people, without a chemistry degree in sight, all of a sudden become experts on the chemicals in our daily lives. My son wouldn’t be alive today without plastics, drugs or vaccines. Please don’t be offended if you catch me rolling my eyes during most conversations about the avoidance of preservatives, food coloring, GMOs, sunscreen or Kraft dinners.

I once saw a person wrinkle her nose when I said we were giving Branko morphine as part of his pain-management plan. He had just had major orthopedic surgery on both legs, in which the bones were literally ripped apart and put in again with metal rods.

“Should you be giving morphine to a child so young?” she asked.

All of a sudden, I was frightened of “Big Bad Morphine.” I second-guessed myself at first, but my gut said stick to the plan. Turns out, doctors usually know what they’re doing. Morphine worked wonders for Branko, getting him through the initial, more painful period, and allowing his bones to heal.

4. It sounds like he’s been misdiagnosed. He should try going to (fill in the blank) hospital.

Uh-oh. Wait. Not only is this very confusing information, coming from someone who isn’t a doctor, but it also makes me nervous. Have I been doing everything wrong? Should I drive six hours to that other children’s hospital? Are there other surgeons with more experience who I should be seeking out? Why do I suck at being a hospital mom?

This advice came to me from another mom of a boy with a genetic disease. She felt strongly that Branko was misdiagnosed and had the same thing as her son.

Perhaps she felt we might have a stronger connection if our kids had the same thing. She had a negative experience at our hospital and felt a need to sway people from it. Some would definitely find her advice helpful; I found it a bit sad. We had a chance to bond over our shared experiences, to be special-needs-mom allies, partners in crime. But it didn’t turn out that way.

Over the years, I’ve become more savvy at deflecting medical advice from non-doctors. My secret: I kindly say “no thank you” followed by “I get all my medical advice from Dr. House and Dr. Grey.” That usually does the trick.

Jennifer Philp Zakic the mighty.1-001

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This Woman Is Empowering Kids With Special Needs With Superhero Capes

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In August 2012, Robyn Rosenberger thought it would be fun to sew a superhero cape for her nephew for his birthday. She’d never made a cape before and it was her first sewing project, but she enjoyed it and continued to make capes for her son, her dog and her friends’ children that same year.

During this time, she was following the site Blessed by Brenna, a blog about a young girl around her son’s age who was born with a severe skin disorder called harlequin ichthyosis. Rosenberger was reading Brenna’s story on her phone while rocking her son to sleep one night when she had an “aha” moment.

“Brenna needed a cape,” Rosenberger told The Mighty in an email. “My son looked super cute in one, but Brenna needed one.”

Rosenberger sent Super Brenna a custom-made cape in January 2013. With that, TinySuperheroes, a small business that sends homemade capes to children living with illnesses or disabilities, was born.

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Rosenberger runs TinySuperheroes out of her home in Saint Louis, Missouri. The capes are custom-made, come in a variety of sizes and colors and each feature the child recipient’s first initial. Families can purchase a cape for their child or nominate a loved one to be placed on the TinySuperheroes waiting list. With every cape purchased, an additional cape goes to a child on the waiting list.

As of summer 2015, Rosenberger has sent more than 6,000 capes to kids all over the world. But, she says, she’s just getting started.

Rosenberger can recall the exact moment she realized TinySuperheroes was her calling. She received an email from a father whose son had passed away days after receiving his cape. He wanted her to know the impact it had on his son and on their family was so great they decided to have him buried in his cape.

“This is the hardest part of this journey, to know that some of our TinySuperheroes will not make it to kindergarten, or to their 16th birthdays,” Rosenberger told The Mighty. “But to know that I have the opportunity to provide something tangible that could provide a single ounce of joy to a family during the most difficult moment of their lives meant that I was in this for the long haul.”

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Rosenberger hopes TinySuperheroes helps the children feel empowered and proud of who they are. She wants families to feel bolstered and encouraged when they see their children wearing the capes.

But more than anything, Rosenberger hopes TinySuperheroes can change the way the world thinks about illness and disability in children.

“I hope that through superhero capes, we can train people to see their TinySuperPowers instead of their differences,” she told The Mighty.

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Super Tayen Gilbert GOOD

Learn more about the TinySuperheroes mission in the video below.

To learn more about this project or to order a cape for the tiny superhero in your life, visit the TinySuperheroes website.

Photos courtesy of Robyn Rosenberger.

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17 Life Lessons Parents With Multiple Sclerosis Have Taught Their Children

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More than 2.3 million people live with multiple sclerosis (MS) worldwide, according to the National Multiple Sclerosis Society. A chronic, unpredictable disease of the central nervous system, MS has no known cause and no known cure. But we do know how drastically it affects people living with the illness.

The Mighty wanted to learn more about how MS affects families, too, so we teamed up with the National Multiple Sclerosis Society, an organization that supports people living with MS. As part of their #WhenYourParentHasMS campaign, the organization asked its readers what they’ve learned from having a parent with the disease.

Here are some of the responses:

1. “Always have patience. Always do research and always make the person living with this disease feel like they aren’t alone in this world. Make them feel loved, make them smile and make them laugh every day, even if you’re sad.” — Chirag Lalwani

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2. “Never to take anything for granted. Health isn’t guaranteed. Just because someone looks healthy doesn’t mean they are. Never park illegally in a handicapped parking space. Everyone should know CPR and first aid. There’s always something to be thankful for, no matter how bad it gets. When someone offers help, take it.” — Lexi Hafften

3. “Each person has his or her own journey in life. My mom taught me it’s OK to let go without sorrow. She taught me that death isn’t scary. It’s the process of life.” — Charlotta ‘Madsen’ Bernau 

4. “I grew up learning to appreciate the good days, the good times. And I learned how to laugh, even when it wasn’t one of the good days. Now I’m the parent, and I was diagnosed with MS two years ago. I’m grateful for perspective and patience.” — Sarah Sorensen 

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5. “I’ve learned to appreciate every moment I get to spend with my mom, especially on her better days. I’ve become more empathetic toward others when they’re having bad days. MS is so multifaceted. It’s a part of our life in every way, and I do all I can to help my mom stay as healthy as possible.” — Amber Lively 

6. “It’s heartbreaking to helplessly watch the decline, but it’s amazing to see his faith, spirit and positivity. It provides the rest of us with new perspectives. We celebrate the good days and push through the tough times. Memories can be made no matter what kind of day it is.” — Page Almond

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7. “Not every disability is visible. Life is beyond precious, and you need to live each and every day to the fullest. Though my mother has never had a relapse, it doesn’t mean it couldn’t happen. She’s taught me that not all heroes wear capes, and no matter how bad things are in life, like being diagnosed with an incurable disease, there are so many more positive things.” — Marian McWilliams 

8. “It’s a disease that is different for everyone, so learning to deal with it is different for everyone. I have come to learn to be at peace with MS, support my dad as much as I can and continue with making memories for him. It’s a disease that affects families, not just the person who has the disease — my mother is his carer, and I often forget that she too can struggle and need help.” — Debi Allen

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9. “Humor plays a large part in how one handles the challenges of MS. You can take a lot in stride with humor.” — Vicki Knudsen 

10. “No matter the struggles, life goes on… My mother has [MS], and it pushes me every day to be a better person.” — Ashton Hathaway

11. “Cherish every moment… I know tomorrow is not promised and, in the MS world, tomorrow could mean her not being able to walk or use her hands. But watching her play with [my children] on a good day is the best thing ever.” — Tiffany Richards Riesenberger

12. “Your mom or dad may change, but you have to learn to let go of who they used to be before MS and embrace who they are now. It hurts, but you have to come to grips with what’s going on and try to open your mind. Get to know your mom or dad again.” — Toca Bell 

13. “Be grateful for her good days, accept her bad days, and [be] grateful for [your] own health. Just because someone doesn’t ‘look sick’ doesn’t mean they aren’t. But mostly, I learned that my mama is just as good as anyone else’s. Her disease never stood in the way of her being a good mother.” — Maddy Harsh-Burgerpatty 

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14. “Family can be a backbone of support. We rally together and support one another through this.” — Alexandra Marie 

15. “Appreciate the important things in life. In school, having the newest [shoes] didn’t matter, but helping at home and trying to make my parents’ life a bit easier was so important.” — Natalie Reeve 

16. “[I’ve learned] how strong my mom actually is. She is constantly in some sort of pain or is utterly exhausted, but never, ever, does she let it show. She doesn’t let work, family or life get in the way… Never will I give up, because my mom never has.” — Sarah Morris

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*Some responses have been edited for brevity and clarity.

For more information about MS, visit the National Multiple Sclerosis Society website and Facebook page. For more information about what it’s like to have a parent with MS or to share your own story, search the hashtag #WhenYourParentHasMS.

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