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When I Lost 18 Years of Memories After a Surgery

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Memories can be a funny thing.

“How do you just completely forget everything?” is usually the first question asked when someone finds out I struggle with amnesia. Amnesia is one of those things where we always think, “Well, it’ll never happen to me.”

Well, it did happen to me. 

I was 18 when I was diagnosed with Arnold-Chiari malformation, which is where the cerebellum of the brain sits too low and herniates through the opening at the base of the skull. I had a 15 mm brain herniation that was almost killing me, and we had no idea. Three weeks later, I had decompression brain surgery.

I remember waking up and not knowing what happened, where I was or who anyone was for that matter, other than the last two people I spoke to before surgery. I was terrified, just had a hole drilled in my head, and remembered absolutely nothing from the previous 18 years. After a couple days in the ICU and still not remember anything, the surgeon told us I may have anesthesia-related amnesia. He reassured us that everything would be fine, and that only six percent of young people experience amnesia last more than three months.

I’m part of that six percent.

It’s now been six years since I had my surgery, and I’ve had to relearn who everyone is, even my own family and my closest friends. I couldn’t tell you what my pets’ names were growing up, what my childhood bedroom looked like, or any of my elementary or middle school teachers’ names. Looking at old photos, I still can’t name most of my friends or family in them. What “memories” I have from before that surgery are what people have told me.

But what I do know is, I’ve spent the last six years making new memories with my now wonderful husband, two children, and supportive friends and family. I cherish every memory I get to make with them, and we take a lot of photos and videos. We know someday I may need a decompression surgery again, and we know I run a risk of losing everything again. Amnesia is very real and very terrifying. But it’s not the end, it’s just a whole new beginning.

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What Every Teacher Needs to Hear on Valentine's Day

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I didn’t get diagnosed with autism until I was 50. I went all through my school years simply as “the weird kid” who never fit in, and no other children wanted anything to do with me.

Valentine’s Day was about three weeks away. My mom was very artistic, and my fifth grade teacher asked her to decorate a big box for the class to put their Valentine cards in it. On February 14, the box would be opened, and all the cards distributed to all the students. My mom got a huge box and covered it with red wrapping paper.  Then she cut out pink and white hearts and carefully placed them all over the box. The final touches were the beautiful delicate lace she’d trimmed and the cut-out slot on top when the cards would be inserted. She brought it to my teacher, who placed the beautiful box right on the corner of the desk. I was extremely proud my mom created it, and all my classmates were very excited to see it.

As the days went on and Valentine’s Day grew closer, the realization began to set in: I knew there would be no cards placed into that box for me. It made me feel sickened inside. A loneliness, a sadness of knowing none of my classmates would give me a card. Making matters worse, my mom had given me a package of Valentine’s cards to write out for my classmates. There were 30 cards in the package, more than enough for my class of 26.

I came up with a scheme to write out all the cards to myself, using different handwriting on each card to make it appear each one was from a different student.  Once I had all the cards written out, I put them in a bag and brought them to my classroom. I arrived extra early before anyone else was there. Cautiously looking around to be sure no one was looking, I took the cards out of the bag and quickly slid them into the opening on top of the box. I was very relieved to get them in there.

Finally, Valentine’s Day arrived. The teacher brought in pretty cupcakes for us all, pink icing with little red hearts sprinkled all over them to be exact! She then asked for two volunteers to help distribute the cards. She opened the box, and the two students began bringing around the cards to everyone. As I sat there and watched, the feeling of rejection grew larger and larger. Oh yes, the cards were piling up on my desk, but they were only the ones I had written out to myself. Once the last card was handed out, there was not one from anyone else. On one hand, I was relieved to have the big pile of cards on my desk so no one would see an empty desk, yet I knew inside what the reality was. I knew I was different and did not fit in, but I couldn’t understand why, nor could I understand why none of my classmates would accept me.

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I took all of my cards home to show my mom. She didn’t let on to me that she had figured out what I’d done. It wasn’t until years later when she told me how she’d cried herself to sleep.

My message to all teachers is to have each student write out a card for all students in the class, and check to be sure. No child should ever have to go through that feeling of ultimate rejection. It lasts a lifetime. Whether it’s Valentine’s Day or any other class activity, be sure each student will be involved and feel accepted.

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19 Secrets Families With FPIES Wish Others Knew

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Food protein-induced enterocolitis syndrome (FPIES) is a rare type of food allergy affecting the gastrointestinal (GI) tract. “The symptoms often include profound vomiting, diarrhea, and dehydration, which can lead to severe lethargy, change in body temperature and blood pressure,” according to The FPIES Foundation. It can be difficult to obtain a diagnosis for FPIES because unlike typical food allergies, standard allergy tests are often ineffective, and food-related symptoms are not immediate. About 60 to 90 percent of children with FPIES outgrow their allergies in the first three years of life. However, there are cases where FPIES will continue into adulthood.

The Mighty collaborated with The FPIES Foundation to ask our communities, “What’s one secret you wish others knew about caring for someone with FPIES?” Their responses reflect the social isolation and anxiety both parents and children face daily when going to school, the playground, or even friends’ homes for dinner. Families with this rare allergy hope for increased understanding, so here is a glimpse into their lives with FPIES:

1. “Even though it’s different than a traditional allergy, it’s still very serious. Some people tend to think it’s not serious or a real allergy. When your baby ends up in the ER, you know it’s serious and real!” – Casidy J.

2. “It’s not that we want to be alone and stay home. It’s the only place we feel somewhat safe and in control.” –Shannon B.

3. “The child is the true hero. My son is 8 and is FPIES to cereal grains. He is his own advocate and loves reading food labels to ensure he is going to stay healthy.” – Shavon F.

4. “My son is at the age where he’s noticing he can’t do all the same things at daycare. Sure, he only eats food from home, but he is also excluded from certain crafts, birthday celebrations, and a lot of holiday parties. He has to sit all alone if there is a messy treat or activity. When someone makes an effort to have something special for him (approved by me), it means so much.” – Diane K.

"When someone makes an effort to have something special for him, it means so much."

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5. “You wonder if you’re ever going to be able to fully trust someone else, besides your spouse, to watch your child so you can have a 10-minute breather. FPIES is exhausting. It’s expensive. It feels never-ending.” – Jacie D.

6. “I wish people would understand that just because his allergies don’t require an EpiPen, it doesn’t mean they aren’t life-threatening or dangerous. FPIES is rare but real.” – Tina Y.

7. “Just because you may not ‘understand’ what a family dealing with FPIES is going through, they still need your love and support. It’s a long and oftentimes lonely road. You don’t have to get it, you just have to show kindness and love.” – Katie K.

It’s a long and oftentimes lonely road. You don’t have to get it, you just have to show kindness and love.”

8. “It’s heartbreaking to see your kid get upset because you have to leave the playground as soon as you get there because other parents let their kids eat food while running around the equipment. As an FPIES parent, you have to consider all the unknown food as a potential trigger.” – Amanda D.

As an FPIES parent, you have to consider all the unknown food as a potential trigger.

9. “Not everyone outgrows it; there is no guarantee. My 6-and-a-half-year-old and best friend’s 7-year-old still avoid FPIES triggers daily. It can be a long road!” – David T.

10. “I spend each day terrified that the tiniest of crumbs, a sip of unclean water, or a lick of a surface that has not been sanitized properly could make my baby horrendously sick and land him in the hospital yet again.” – Brittany S.

11. “I am trying to raise a child whose illness doesn’t define her, and instead what matters are all the smart, funny, silly, sassy things she does and says does. It’s difficult to have everyone else understand this and not isolate her because of it, or place negative connotations on what she can’t do or can’t eat. I try to make sure she knows she can do things her way, even through all of the things she can’t.” – Tatiana Z.

12. “As the parent, you probably know more about FPIES than most doctors and pediatricians do.” – Nicole B.

13. “It’s extremely socially isolating for both little ones and parents.” – Janine M.

It’s extremely socially isolating for both little ones and parents.

14. “Always check with a parent before offering another child food of any kind. You just never know if that seemingly harmless treat or snack could make them really sick.” – Katrina R.

15. “It is heartbreaking when your toddler asks for foods they can’t have, and not being able to accommodate their desire for new experiences.” – Mary K.

“It is heartbreaking when your toddler asks for foods they can’t have, and not being able to accommodate their desire for new experiences.”

16. “My daughter is allergic to green vegetables. I worry she’s going to have a nutrient deficiency and it will affect her growth and health.” – Tiffney G.

17. “There was a point in my daughter’s life where the only thing she could eat was white potato and coconut. Everything else sent us to the hospital. Yet each time we would meet a new doctor, we would see a look of disbelief flash across their face. Just because FPIES is an invisible illness, doesn’t make it any less real.” – Laura B.

18. “We want others to know alienating it can be. We know it’s difficult to invite us to the dinner or event because that means you’ll get a thousand questions about food, and you’d rather not have to deal with it. But it doesn’t mean we’re ungrateful for the offer.” – Heather O.

19. “Most of the time the strength and bravery to get through a day comes from our daughter. Her smiles, laughs and kisses get us all through the tough stuff. Being the parent of a child with FPIES doesn’t make you a superhero, it gives you the opportunity to raise one.” – Alliyson F.

Being the parent of a child with FPIES doesn’t make you a superhero, it gives you the opportunity to raise one.

Do you have a child with FPIES? What’s one secret you’d like others to know? Leave your comment below.

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10 Ways to Support Your Chronically Ill Friend

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Chronic illness can be quite traumatizing, especially if it is an invisible and poorly understood illness. Fighting for a diagnosis. A parade of physicians who can’t help me. Friends and family who can’t possibly understand what my life feels like now. I am terrified, and don’t know where to turn. There are not many specialists who can help me, and the waiting lists to see them can be years long. I feel absolutely miserable both physically and emotionally.

I know that sometimes it can be confusing to love someone with a chronic illness. Here’s what I want my friends and family to know.

1. Believe me. The best thing you can do for me as a person with chronic illness is believe me when I talk about the way I am feeling. For people with invisible illness — like postural orthostatic tachycardia syndrome, Ehlers-Danlos syndrome, chronic fatigue syndrome or fibromyalgia — that means you can’t see my level of suffering. When most people get sick, they have a fever, swollen glands or a runny nose that allows others to see they are not feeling well. That is not the case for people like me who are living with invisible illnesses. What does it look like if I am dizzy? Can you assess my level of fatigue without feeling it yourself? What does neuropathic pain look like to the outside observer? Please believe me when I tell you that I don’t feel good!

2. Listen to me. I need to talk to process my feelings. Let me cry. Acknowledge and accept my struggles. I may need to tell the same story several times. Talking about my experiences with chronic illness actually makes me feel better, not worse. I don’t need you to fix me. Just listen to me and allow me to express my pain and frustration.

3. Be here for me. Call me, text me or reach out in some other way regularly to reassure me you are still there. Don’t be so afraid of saying the wrong thing you stay away. Chronic illness is isolating for me.

4. Be yourself when you are with me. I still have the same interests and sense of humor I had prior to my illness. Tell jokes. Share stories from your family or workplace. Reminisce with me about the good old times.

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5. Ask permission before you share my diagnosis with other people. I may not want to have conversations about my illness with casual acquaintances or in my workplace. Sometimes I want to be able to pass as healthy. My diagnosis being common knowledge at work may change the way I am able to do my job.

6. Help me to feel hopeful. If you know someone else with my illness, don’t give me the doom and gloom version of their story. Each of us is different, and just because they had a good (or bad) outcome doesn’t mean that I will, too. I need to hold onto my hope for a better future.

7. Understand that sickness does not equal sadness and healthiness does not equal happiness. People find illness depressing, so when I talk about it, they get uncomfortable. My illness doesn’t have to be sad, it’s just what’s going on in my life right now. Also, just because I’m feeling happy doesn’t mean I physically feel better. I have to make the best of my current health situation.

8. Tell me if you don’t know how to handle my illness. It’s OK to say, “I don’t know what to say.” Not everyone intuitively knows how to be there for a person with chronic illness. If you don’t know what to do, please ask! We’ll be better friends down the road if you can be honest with me now.

9. The Golden Rule doesn’t always apply. I may have very different needs than you would if you were in a similar situation. Please listen, ask me what I need and then follow my lead. Often I want and need quiet.

10. Don’t blame me for having chronic illness. Our society tends to blame people for becoming sick. Perhaps you think I didn’t exercise enough or eat well. Maybe I used to smoke or drink alcohol. Nothing that I did or didn’t do made me sick. Chronic illness can happen to anyone.  Nobody deserves to feel like this.

A version of this post originally appeared on Standing Up to POTS.

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People in the Autism Community Say Asda's 'I'm Having a Meltdown' Sweater Is Offensive

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People in the autism community are not happy with a new winter-themed sweater from U.K.-based retailer Asda. Many say the children’s sweater, which reads “I’m having A MELTDOWN” trivializes the meltdowns children on the autism spectrum face.

Photo of sweater that says "I'm having a meltdown" and features a snowman

On Monday, a Change.org petition was started asking Asda to remove the sweater from its store and website. “Anyone… with [autism spectrum disorder] and similar spectrum disorders or mental health conditions that involve having melt downs as a symptom deserve understanding and acceptance,” Jennifer Dunston, who started the petition, wrote on Change.org. “They/we do NOT deserve to be made fun of.”

So far the petition has been signed by over 60 people, many of whom echo Dunston’s sentiments. “This is not funny at all. I know how difficult meltdowns can be to deal with. Very disappointed with Asda over this,” one petition signer commented.

“Bad enough having people out there who makes it difficult for people with autism let alone a shopping brand,” another wrote.

Not everyone finds the sweater offensive. “I have a child with autism, [sensory processing disorder], anxiety and panic disorder,” Stacey Rushing, a contributor to The Mighty, said. “That said, nothing about this sweater is offensive. It’s a snowman melting, a play of words. The word ‘meltdown’ is no specific to one’s disability. It can be used in any context by any person.”

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“I have autism, I had many meltdowns as a child, however have less now,” Lottie Harland, a contributor, said. “I don’t find this offensive as many people have meltdowns, it’s a turn of phrase for I feel like things are out of control and this happens to us all. It’s a funny shirt making light of the feeling of being out of control. And honestly I think it’d get more people talking so they’re less afraid to say I’m having a meltdown I’m not in control, and isn’t that good?”

This isn’t the first time people have petitioned an item sold by Asda. In 2013, a “mental patient fancy dress costume” was removed from the store after people protested the Halloween costume as being offensive.

Despite controversies surrounding its clothing, the company has made strides in making its stores more disability-friendly. The retailer was praised earlier this year for creating disabled bathroom signs that point out “not every disability is visible.” The store also made headlines in April for offering a “quiet hour” so customers on the spectrum could shop without extra sensory stimuli.

Update: A spokesperson for Asda told The Mighty, “We take mental health issues extremely seriously and supported World Mental Health Awareness Day this month. Our snowman t-shirt is intended to be light-hearted and we’ve received great feedback from customers. We’re sorry if anyone is offended by it – that is never our intention.”

Do you think this shirt is insensitive? Let us know in the comments below. 

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It's Time to Bust the Myth That You Can't Be Young and Have Chronic Pain

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A common misconception is that you have to be a “certain age” to be in pain. Even trained medical
professionals are guilty of this ignorant mindset.

I had surgery on my right hip back in February. The surgery was a lot more “major” than expected, and trust me when I say we expected it to be a major surgery. I was in the hospital on the hip floor for three days where I was on severe fall precaution and severe hip precaution, meaning I could not do any motion by myself, especially move my right leg. I remember overhearing one of the nurses just starting the shift saying I don’t look like I needed all that precaution (a tone that quickly changed once I “politely” informed her I had 20 tumors taken out and my hip dislocated and removed from the socket to reconstruct the entire joint and tissue).

I can’t tell you how many dirty looks I get when I park in accessible spots or when I use motorized carts to shop. Or how many times I’ve been told I’m “too young” to have hip and back problems. The ironic part is, I’ve probably had more tumors removed by the time I was 16 than all those people who give the dirty looks will have removed in their entire lifetime. Chronic pain conditions affect more Americans than any other conditions, including diabetes and cancer. According to a 2006 report by the National Institutes of Health, 26 percent of Americans reported suffering from pain lasting over 24 hours, and of that 26 percent, 25 percent are young adults the age range 20 to 44. Globally, the American Academy of Pain Medicine estimates 1.5 billion have chronic pain, with 3 to 4.5 percent of the global population struggling with neuropathic pain.

I know I speak for many when I say I grew up in pain. I was born with multiple hereditary exostoses; a rare painful bone disease characterized by tumors. At the age of 22 I was also diagnosed with fibromyalgia, after years and years of symptoms. A “normal” person’s 10 is my four, and what used to be my 10 now a six. Living in constant pain, you grow accustomed to pain, hiding it so well people think it’s OK to give you dirty looks and stares while you’re struggling to make it another five steps to the car. It’s the sad reality of living with an invisible illness that can only be changed by vocalizing our pain.

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