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Dear world: This is what autism really feels like to me.

These are the things people don't tell you about living with autism.

Dear world: This is what autism really feels like to me.

The author, Jack’s mother, wrote this from Jack’s perspective based on conversations and observations of him at the Disney parks and in life.

Dear world,

Last week, my family went to Disney.


My mom and dad picked us all up from school at 12:14 on a Tuesday afternoon. I was in science and I was very surprised when I heard my name on the loudspeaker.

When I got in the car, they told my three brothers and my sister and me that we were going for a flu shot. We were all very mad about that.

Then my parents pulled the car over and said, "Why don’t we go to Disney instead?"

I didn’t know what to think about it. I was happy, but I also like to know about things a long time before they happen so I can think and talk and plan for them.

But this time my mom was all sneaky about it because she hates when I know about trips. I always want to pack my own suitcase full of the things that make me feel calm inside, like my special bunny and my Chapsticks.

Jack and his mom. Photo provided by Carrie Cariello, used with permission.

One time, we argued for two hours because I tried to pack my humidifier for our skiing trip. I kept showing her how it would fit into the suitcase fine as long as it didn’t have any water in it but after a while she shouted, "We are not taking that humidifier, Jack! Stop driving me so crazy!"

We got to Disney around 6:00 at night, and the first thing I did as soon as we got to our hotel was unwrap the soap in the bathroom.

I do this every time we go to a hotel. While everyone else is bouncing on the beds and wheeling the suitcases around, I go quietly into each bathroom and find the soap.

We had dinner in a crowded restaurant. I could tell everyone around me was happy-happy-happy, but I could not stop worrying about school. I was worried about missing something fun like a movie during class, and I kept asking my mother over and over to e-mail my teacher.

There was a man sitting right behind me and he was laughing so hard and weird it sounded like a donkey who had just heard the funniest joke ever.

Then my father ordered something pink and spiny called crab legs, and I could smell their fishy smell and it bothered me.

And there was a woman at the table next to us who was wearing a string of Christmas lights around her neck, and they were blinking on and off and on and off over and over again.

All of a sudden my brain could barely breathe.

It was already 9:23 p.m., and I really like to be in bed by 8:30 p.m., and because of this laughing and the blinking and the smelling I felt like my skin was trying to come off of my face.

I tried doing my newest trick, which is making my fingers dance and twitch in front of me. It makes me feel good, but I can tell it does not make my mom feel good because she leaned over and asked me to stop. She said we should have brought my stress ball, and if I had known about the trip, I would have reminded her a lot of times to pack it.

So I tried to keep my hands very still but I felt like a balloon that was going to pop. I had to do something, so I shouted, "What the f*&%!"

I know these words are bad, but sometimes they feel so good to say. They feel hot and salty on my tongue, and when I shout them, it’s like letting a little bit of air out of the balloon.

Words are very weird for me. If they sound even a little bit different, I have to double-check in my brain before I recognize them.

Like the way my bus driver likes to say, "This is the route home," and she says it like the root on a tree. When I hear her say this, I think of tall, straight trees with soft leaves.

Then one day we had a substitute bus driver and he said, "We’re going to take the same route home," except he didn’t say it like the tree root, he said it like "rowt," so then I had to do my double-checking and figure out what he meant.

In Disney, we went to visit places called parks every day, except they look nothing like regular parks that have slides and stuff.

These places are huge and crowded, and they have music and food and people called characters wandering around in their big silly costumes.

Jack and his family at Disney. Photo provided by Carrie Cariello, used with permission.

The minute we stepped into the park, everyone — especially my brothers and sister — started to be so bossy about me. It was making me really mad.

"Jack! Over here!"

"Where’s Jack?"

"Jack, stay with us!"

Finally I screamed, "Everyone stop BOSSING me!"

Mom took me aside and told me our family just wants to make sure I am safe and that I don’t wander off, but it still didn’t feel very good. I am 11, not a baby.

The ride called Space Mountain was so fun.

My dad took me and my brother Charlie back to the park until late one night, and we rode it all together, and it made me so happy. I could not stop talking about it.

Sometimes I can’t stop thinking or talking about things.

Like that night at dinner, I kept asking and talking about the death penalty because I saw something about it on the television at the airport. Whatever I am thinking about gets big and huge in my mind, and it pushes everything else to the side, like an elephant in a crowded elevator.

My mom got a little mad and said, "Jack! We are in Disney! Please stop talking about the death penalty."

The next day, we went to a place called Epcot, which was totally boring and not as fun as the park called the Magic Kingdom because it was all about learning.

We were in line to go on a ride inside of this big ball that looks just like one of the golf balls my dad keeps in the garage but tells us not to fool with, and I turned to my mom and asked when it was going to snow at home.

The lady in line behind us heard me, and she said, "Oh, you said it! You said that nasty word, snow!"

Jack and his family. Photo provided by Carrie Cariello, used with permission.

I had to do my double-checking because I didn’t think "snow" was was a nasty word. Snow is nice. It is cold and pretty and sometimes we don’t have to go to school if we get a lot of it.

"Snow is not NASTY. You are freaking WRONG."

When I said this to her, the smile disappeared from her face like someone had wiped it away with a sponge. My mom put her arms around my shoulders and turned me away, and then she turned back to the lady and said a few things quietly. I think she was telling them about my autism.

I used to hate when she did this because it made me feel bad.

But my mom tells me a lot that autism is not a secret — it is not something to feel embarrassed or ashamed of because it is as much a part of me as the freckle on my left leg.

World, all day long you flash and dance around me being your funny, stinky, noisy, happy, scary self. You confuse me.

See, I am like a fish inside an aquarium. I want to watch you from behind the glass. I want to stay in my school and eat my regular food and listen to my favorite radio station and go to bed at my normal time. I do not like surprise trips.

I am safe here, in my bubble. Your sounds are muted and hushed, and I can tell the difference between a nasty word and a nice word. I don’t have to listen to your big loud donkey laughs or shut my eyes against your blinking lights.

At Disney, we took something called a shuttle a lot.

My dad was always shouting, "Come on! We’re going to miss the shuttle!" and then when we got to the pick-up place it would have just left like a second ago so we’d stand around and wait another 20 minutes.

One night we were riding the shuttle very late. It was very dark inside, and I was sitting next to my mom and thinking about snow and nice words and nasty words, and then I remembered another word I didn’t know.

"Mom. What does for loner mean?"

"Well, it means, like, to be alone. A person who is alone. Why are you asking? Do you think you’re a loner?"

"Without you. For yes."

"Oh, Jack."

I could not see her face, but I could feel her wearing her sadness on her body like an itchy sweater, the kind she makes us wear for our Christmas picture. I put my head on her shoulder, and then she put her head on my head, and we stayed that way until the shuttle stopped, even though I don’t usually like to touch people for that long.

On our second-to-last day, we had lunch in an African restaurant called Sanaa, where we could look out the window while we ate and watch giraffes and ostriches strolling around.

Our server was a nice smiley man named Boylson. His name tag said he came from Botswana, which is in Africa, and he didn’t get mad when I shouted, "This food makes no SENSE TO ME."

After we were done eating this funny bread called naan and my brothers and sister wandered away from the table to look at the animals, I heard my mother ask Boylson if they had autism in Botswana.

She is not shy, my mom.

Photo via iStock.

"Oh, yes," he smiled at her. It was not a real smile that made his face look happy, but more like he stretched the corners of his mouth. "It is everywhere."

Then she asked about services and evaluations and doctors, and he just looked at her and smiled once more, gentle-like this time.

"You know, there was a boy in our village who could not hear a single sound. Nothing at all. But still, we found a way to talk to him. We loved him."

I was thinking hard about a boy who could not hear a single sound because I think that would be weird and also maybe kind of nice not to have to hear loud donkey laughs, but when I looked at my mother I could tell she wasn’t thinking about that boy at all. I could tell she was thinking about me.

My mom was thinking about always trying to find new ways to talk to me and to hear me and to love me — to nudge me out of my fish tank and into the wide, open world.

She knows I don’t want to be a loner.

I think I know the answer, world.

You and I, we can’t be something or someone we’re not. We can’t change all the way for each other. But this does not mean we won’t be friends.

So I think you should keep being your stinky, funny, loud, busy self. Tell your jokes and laugh your laughs and smell your smells.

I will continue to be myself. I will do my double-checking and try to understand your words and shrink the elephant in my brain so he’s smaller, more like a turtle.

In the meantime, if you happen to notice a boy standing in the airport and his fingers are dancing in front of his eyes, be kind.

Be tender.

I am trying.

From,

Jack

Since his first hit single "Keep Your Head Up" in 2011, award-winning multi-platinum recording artist Andy Grammer has made a name for himself as the king of the feel-good anthem. From "Good to Be Alive (Hallelujah)" to "Honey, I'm Good" to "Back Home" and more, his positive, upbeat songs have blared on beaches and at backyard barbecues every summer.

So what does a singer who loves to perform in front of live audiences and is known for uplifting music do during an unexpectedly challenging year of global pandemic lockdown?

He goes inward.

Grammer told Upworthy that losing the ability to perform during the pandemic forced him to look at where his self-worth came from. "I thought I would have scored better, to be honest," he says. "Like, 'Oh, I get it from all the important, right places!' And then it's taken all away in one moment, and you're like, 'Oh, nope, I was getting a lot from that.'

"It's kind of cool to break all the way down and then hopefully put myself back together in a way that's a little more solid," he says.

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Since his first hit single "Keep Your Head Up" in 2011, award-winning multi-platinum recording artist Andy Grammer has made a name for himself as the king of the feel-good anthem. From "Good to Be Alive (Hallelujah)" to "Honey, I'm Good" to "Back Home" and more, his positive, upbeat songs have blared on beaches and at backyard barbecues every summer.

So what does a singer who loves to perform in front of live audiences and is known for uplifting music do during an unexpectedly challenging year of global pandemic lockdown?

He goes inward.

Grammer told Upworthy that losing the ability to perform during the pandemic forced him to look at where his self-worth came from. "I thought I would have scored better, to be honest," he says. "Like, 'Oh, I get it from all the important, right places!' And then it's taken all away in one moment, and you're like, 'Oh, nope, I was getting a lot from that.'

"It's kind of cool to break all the way down and then hopefully put myself back together in a way that's a little more solid," he says.

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True

Each year, an estimated 1.8 million people in the United States are affected by cancer — most commonly cancers of the breast, lung, prostate, and blood cancers such as leukemia. While not everyone overcomes the disease, thanks to science, more people are surviving — and for longer — than ever before in history.

We asked three people whose lives have been impacted by cancer to share their stories – how their lives were changed by the disease, and how they're using that experience to change the future of cancer treatments with the hope that ultimately, in the fight against cancer, science will win. Here's what they had to say.

Celine Ryan, 55, engineer database programmer and mother of five from Detroit, MI

Photo courtesy of Celine Ryan

In September 2013, Celine Ryan woke up from a colonoscopy to some traumatic news. Her gastroenterologist showed her a picture of the cancerous mass they found during the procedure.

Ryan and her husband, Patrick, had scheduled a colonoscopy after discovering some unusual bleeding, so the suspicion she could have cancer was already there. Neither of them, however, were quite prepared for the results to be positive -- or for the treatment to begin so soon. Just two days after learning the news, Ryan had surgery to remove the tumor, part of her bladder, and 17 cancerous lymph nodes. Chemotherapy and radiation soon followed.

Ryan's treatment was rigorous – but in December 2014, she got the devastating news that the cancer, once confined to her colon, had spread to her lungs. Her prognosis, they said, was likely terminal.

But rather than give up hope, Ryan sought support from online research, fellow cancer patients and survivors, and her medical team. When she brought up immunotherapy to her oncologist, he quickly agreed it was the best course of action. Ryan's cancer, like a majority of colon and pancreatic cancers, had been caused by a defect on the gene KRAS, which can result in a very aggressive cancer that is virtually "undruggable." According to the medical literature, the relatively smooth protein structure of the KRAS gene meant that designing inhibitors to bind to surface grooves and treat the cancer has been historically difficult. Through her support systems, Ryan discovered an experimental immunotherapy trial at the National Institutes of Health (NIH) in Bethesda, MD., and called them immediately to see if she was eligible. After months of trying to determine whether she was a suitable candidate for the experimental treatment, Ryan was finally accepted.

The treatment, known as tumor-infiltrating lymphocyte therapy, or TIL, is a testament to how far modern science has evolved. With this therapy, doctors remove a tumor and harvest special immune cells that are found naturally in the tumor. Doctors then grow the cells in a lab over the next several weeks with a protein that promotes rapid TIL growth – and once the cells number into the billions, they are infused back into the patient's body to fight the cancer. On April 1, 2015, Ryan had her tumor removed at the NIH. Two months later, she went inpatient for four weeks to have the team "wash out" her immune system with chemotherapy and infuse the cells – all 148 billion of them – back into her body.

Six weeks after the infusion, Ryan and Patrick went back for a follow-up appointment – and the news they got was stunning: Not only had no new tumors developed, but the six existing tumors in her lungs had shrunk significantly. Less than a year after her cell infusion, in April 2016, the doctors told Ryan news that would have been impossible just a decade earlier: Thanks to the cell infusion, Ryan was now considered NED – no evaluable disease. Her body was cancer-free.

Ryan is still NED today and continuing annual follow-up appointments at the NIH, experiencing things she never dreamed she'd be able to live to see, such as her children's high school and college graduations. She's also donating her blood and cells to the NIH to help them research other potential cancer treatments. "It was an honor to do so," Ryan said of her experience. "I'm just thrilled, and I hope my experience can help a lot more people."

Patrice Lee, PhD, VP of Pharmacology, Toxicology and Exploratory Development at Pfizer

Photo courtesy of Patrice Lee

Patrice Lee got into scientific research in an unconventional way – through the late ocean explorer Jacques Cousteau.

Lee never met Cousteau but her dreams of working with him one day led her to pursue a career in science. Initially, Lee completed an undergraduate degree in marine biology; eventually, her interests changed and she decided to get a dual doctoral degree in physiology and toxicology at Duke University. She now works at Pfizer's R&D site in Boulder, CO (formerly Array BioPharma), leading a group of scientists who determine the safety and efficacy of new oncology drugs.

"Scientists focused on drug discovery and development in the pharmaceutical industry are deeply committed to inventing new therapies to meet unmet needs," Lee says, describing her field of work. "We're driven to achieve new medicines and vaccines as quickly as possible without sacrificing safety."

Among the drugs Lee has helped develop during her career, including cancer therapies, she says around a dozen are currently in development, while nine have received FDA approval — an incredible accomplishment as many scientists spend their careers without seeing their drug make it to market. Lee's team is particularly interested in therapies for brain metastases — something that Lee says is a largely unmet need in cancer research, and something her team is working on from a variety of angles. "Now that we've had rapid success with mRNA vaccine technology, we hope to explore what the future holds when applying this technology to cancers," Lee says.

But while evaluating potential cancer therapies is a professional passion of Lee's, it's also a mission that's deeply personal. "I'm also a breast cancer survivor," she says. "So I've been on the other side of things and have participated in a clinical trial."

However, seeing how melanoma therapies that she helped develop have affected other real-life cancer patients, she says, has been a highlight of her career. "We had one therapy that was approved for patients with BRAF-mutant metastatic melanoma," Lee recalls. "Our team in Boulder was graced by a visit from a patient that had benefited from these drugs that we developed. It was a very special moment for the entire team."

None of these therapies would be available, Lee says without rigorous science behind it: "Facts come from good science. Facts will drive the development of new drugs, and that's what will help patients."

Chiuying "Cynthia" Kuk (they/them) MS, 34, third-year medical student at Michigan State University College of Human Medicine

Photo courtesy of Cynthia Kuk

Cynthia Kuk was just 10 years old when they had a conversation that would change their life forever.

"My mother, who worked as a translator for the government at the time, had been diagnosed with breast cancer, and after her chemotherapy treatments she would get really sick," Kuk, who uses they/them pronouns, recalls. "When I asked my dad why mom was puking so much, he said it was because of the medicine she was taking that would help her get better."

Kuk's response was immediate: "That's so stupid! Why would a medicine make you feel worse instead of better? When I'm older, I want to create medicine that won't make people sick like that."

Nine years later, Kuk traveled from their native Hong Kong to the United States to do exactly that. Kuk enrolled in a small, liberal arts college for their Bachelor's degree, and then four years later started a PhD program in cancer research. Although Kuk's mother was in remission from her cancer at the time, Kuk's goal was the same as it had been as a 10-year-old watching her suffer through chemotherapy: to design a better cancer treatment, and change the landscape of cancer research forever.

Since then, Kuk's mission has changed slightly.

"My mom's cancer relapsed in 2008, and she ended up passing away about five years after that," Kuk says. "After my mom died, I started having this sense of urgency. Cancer research is such that you work for twenty years, and at the end of it you might have a fancy medication that could help people, but I wanted to help people now." With their mother still at the forefront of their mind, Kuk decided to quit their PhD program and enter medical school.

Now, Kuk plans to pursue a career in emergency medicine – not only because they are drawn to the excitement of the emergency room, but because the ER is a place where the most marginalized people tend to seek care.

"I have a special interest in the LGBTQ+ population, as I identify as queer and nonbinary," says Kuk. "A lot of people in this community and other marginalized communities access care through the ER and also tend to avoid medical care since there is a history of mistreatment and judgement from healthcare workers. How you carry yourself as a doctor, your compassion, that can make a huge difference in someone's care."

In addition to making a difference in the lives of LGBTQ+ patients, Kuk wants to make a difference in the lives of patients with cancer as well, like their mother had.

"We've diagnosed patients in the Emergency Department with cancer before," Kuk says. "I can't make cancer good news but how you deliver bad news and the compassion you show could make a world of difference to that patient and their family."

During their training, Kuk advocates for patients by delivering compassionate and inclusive care, whether they happen to have cancer or not. In addition to emphasizing their patient's pronouns and chosen names, they ask for inclusive social and sexual histories as well as using gender neutral language. In doing this, they hope to make medicine as a whole more accessible for people who have been historically pushed aside.

"I'm just one person, and I can't force everyone to respect you, if you're marginalized," Kuk says. "But I do want to push for a culture where people appreciate others who are different from them."