Here's what life is like with an 'invisible disease.' It's kind of intense.

We don't always think of it as life-threatening, but it is.

That's me with my little brother in 1990. I was 10 years old.

I know what you're thinking. I had style written all over me!


If you can tear your eyes away from the photo for a few minutes — which I understand is difficult because my bad perm and glasses that are half the size of my face are extremely engaging — I'll tell you why this picture is significant.

This was taken one year after I was diagnosed with type 1 diabetes.

We were on a camping trip in the middle of nowhere, a three-hour drive from the nearest town and emergency services, reachable only via a narrow dirt mountain road.

My parents debated whether it was safe for us to take such a trip so soon after learning that my life wouldn't be "normal" again. Because for type 1 diabetics, particularly children, not being able to call 911 can be deadly.

Type 1 diabetes is a disease in which the pancreas, which produces the hormone insulin that is necessary for converting the glucose in food into energy, quits working. It's an autoimmune disease, which means that a type 1 diabetic's body pretty much kills its own pancreas. The cause is unknown, and there's no cure.

The way a type 1 diabetic stays alive is through multiple daily insulin injections (or an insulin pump), blood glucose monitoring, and a lot of hoping for the best because often, no matter how "right" we do things, stuff still goes wrong.

I'd spent 10 days in the hospital after I was first diagnosed, learning how to stay alive. And then my family and I spent the next year learning how to live while I stayed alive.

Living and staying alive are two different things.

One year later, with the encouragement of my doctors, my parents planned carefully and we went on our trip. Very. Big. Deal.

So why am I sharing this embarrassing photo with you? Because there are a few things I'd like you to know.

Type 1 diabetes isn't all that common.

Because it has a nearly identical name to type 2 diabetes, it's easy to confuse the two and conclude that a lot of people have it. But in reality, about 1.25 million Americans live with type 1 diabetes (versus 29 million with type 2).

Type 1 diabetes never gets better, never goes away, and, so far, cannot be "cured."

It's a disease that requires managing 24 hours a day. While I know that I speak for every single type 1 diabetic when I say we're incredibly grateful for insulin — because we'd literally drop dead without it — it's not a cure.

It doesn't prevent the daily dangers of high and low blood sugars, and it doesn't prevent the long-term complications that so many type 1s face.

Being alive is awesome, though! Seriously. But it's not always easy.

I have always had access to the medications, supplies, and good doctors that are necessary to help keep me alive. That's what made my childhood trip possible, and it's a benefit I don't take for granted.

With new developments in technology like continuous glucose monitoring, children growing up today have even more options and medical support than I did. That's the good news. But it's still pretty hard. Don't just take my word for it.

This is the New York Times' day-in-the-life look at a type 1 diabetic teenager named Grace and her mom.

Grace's mom sums up the struggle, effort and energy of her daughter's daily life pretty simply:

"It's kind of overwhelming to say it, but that's the way she lives."

While some of the medical technology has gotten a little better since I was diagnosed 25 years ago, the truth is that not much has changed. Grace's life is almost exactly what my childhood and my parents' lives were like — minus the dog. (If you do nothing else, watch the video for her superhero dog. He's pretty amazing.)


Intense, right? People like Grace and I look pretty "regular" on the outside. But managing type 1 diabetes is a lot of work.

Know anyone who lives with an "invisible disease"? It's possible that you do and don't even know it! Share this video to let them and the world know that you realize how hard they are working — just to stay alive.

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I'm staring at my screen watching the President of the United States speak before a stadium full of people in North Carolina. He launches into a lie-laced attack on Congresswoman Ilhan Omar, and the crowd boos. Soon they start chanting, "Send her back! Send her back! Send her back!"

The President does nothing. Says nothing. He just stands there and waits for the crowd to finish their outburst.

WATCH: Trump rally crowd chants 'send her back' after he criticizes Rep. Ilhan Omar www.youtube.com

My mind flashes to another President of the United States speaking to a stadium full of people in North Carolina in 2016. A heckler in the crowd—an old man in uniform holding up a TRUMP sign—starts shouting, disrupting the speech. The crowd boos. Soon they start chanting, "Hillary! Hillary! Hillary!"

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via EarthFix / Flickr

What will future generations never believe that we tolerated in 2019?

Dolphin and orca captivity, for sure. They'll probably shake their heads at how people died because they couldn't afford healthcare. And, they'll be completely mystified at the amount of food some people waste while others go starving.

According to Biological Diversity, "An estimated 40 percent of the food produced in the United States is wasted every year, costing households, businesses and farms about $218 billion annually."

There are so many things wrong with this.

First of all it's a waste of money for the households who throw out good food. Second, it's a waste of all of the resources that went into growing the food, including the animals who gave their lives for the meal. Third, there's something very wrong with throwing out food when one in eight Americans struggle with hunger.

Supermarkets are just as guilty of this unnecessary waste as consumers. About 10% of all food waste are supermarket products thrown out before they've reached their expiration date.

Three years ago, France took big steps to combat food waste by making a law that bans grocery stores from throwing away edible food.According to the new ordinance, stores can be fined for up to $4,500 for each infraction.

Previously, the French threw out 7.1 million tons of food. Sixty-seven percent of which was tossed by consumers, 15% by restaurants, and 11% by grocery stores.

This has created a network of over 5,000 charities that accept the food from supermarkets and donate them to charity. The law also struck down agreements between supermarkets and manufacturers that prohibited the stores from donating food to charities.

"There was one food manufacturer that was not authorized to donate the sandwiches it made for a particular supermarket brand. But now, we get 30,000 sandwiches a month from them — sandwiches that used to be thrown away," Jacques Bailet, head of the French network of food banks known as Banques Alimentaires, told NPR.

It's expected that similar laws may spread through Europe, but people are a lot less confident at it happening in the United States. The USDA believes that the biggest barrier to such a program would be cost to the charities and or supermarkets.

"The logistics of getting safe, wholesome, edible food from anywhere to people that can use it is really difficult," the organization said according to Gizmodo. "If you're having to set up a really expensive system to recover marginal amounts of food, that's not good for anybody."

Plus, the idea may seem a little too "socialist" for the average American's appetite.

"The French version is quite socialist, but I would say in a great way because you're providing a way where they [supermarkets] have to do the beneficial things not only for the environment, but from an ethical standpoint of getting healthy food to those who need it and minimizing some of the harmful greenhouse gas emissions that come when food ends up in a landfill," Jonathan Bloom, the author of American Wasteland, told NPR.

However, just because something may be socialist doesn't mean it's wrong. The greater wrong is the insane waste of money, damage to the environment, and devastation caused by hunger that can easily be avoided.

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