I am never naked.

If you scroll down in this post, you’re going to see a topless/nearly naked picture of me, as well as a few others that show quite a bit of skin. They are meant to challenge you to think about what I’m about to write. Please read first, then scroll if you want (but do not scroll if you think mostly nude photos of me will offend you).

I was diagnosed with type 1 diabetes at age 10. It meant that, at the age of 10, my body was no longer my own. It became the property of diabetes, of medicine, of science, of the devices it takes to keep me alive.

When I was first diagnosed and still in the intensive care unit, every part of my body was poked and prodded. I ended up with an IV in one of my jugular veins because none of the rest of my veins were stable enough to support a line. My clothes had been ripped off my body to make it more accessible to save. My necklace had been cut from throat so it didn’t get in the way. My body was just that – a body to save. Not a person. Not my own.  Continue reading “I am never naked.”

That tricky little bastard, serotonin.

One of the most important tools in the understanding-my-brain arsenal is pure science. It makes it all more manageable for me if I know why something is happening on a basic bodily function level.

In a previous post, I talked about having a chronic mental illness called dysthymia – it’s a chronic form of depression that I’ve had since I was 12 in which my brain doesn’t produce enough serotonin. I used to manage my body’s ability to produce enough of it – since it affects feelings of well-being, mood stabilization, and digestion (your body produces serotonin in your brain and all throughout your digestive tract) – with medications called SSRIs (selective serotonin reuptake inhibitors).  Continue reading “That tricky little bastard, serotonin.”

I’ve been depressed since I was 12.

Lora Zombie
“Rainy” by Lora Zombie

 

The most common comment I get since moving to New York City a year ago is that I am too positive for this city and that it will change me. My response every time is that I have worked too hard for my joy, and it isn’t going anywhere.

But I realize that people probably don’t know what that really means. That, when people see me being positive, they assume it’s an inherent trait – one that exists just because it’s who I am.

They don’t realize that I actually have clinical depression – dysthymia, specifically. That the chemicals in my brain are not wired for me to feel okay and that when I say I’ve worked hard for my positivity, I mean it. Literally how I eat, my exercise, my daily habits, my alone time – not only are they built to support my physical health, but my mental health too.

My happiness, my positivity is a choice, but it’s one that I had to learn how to make over years upon years of work, not only personally but with the help of doctors, clinicians, counselors, nutritionists and, at times, medication. Because – just like how my body does not make insulin, it doesn’t create enough serotonin, the chemical that helps contribute to feelings of well-being and happiness. Everything can be going right but without serotonin, my brain does not have the ability to recognize it. Continue reading “I’ve been depressed since I was 12.”

What it’s like to watch people die from your disease.

My immune system attacked my body when I was 10, resulting in a loss of ability to make a crucial hormone called insulin, which turns the food you eat into fuel for your body. Without insulin, the sugar from your food compounds in your blood stream, quickly poisoning you from within.

Before 1921, this event was a death sentence. The only “treatment” was starvation. Even over the last few decades, being diagnosed with this autoimmune disease meant shorter lifespans and drastic changes in what life could look like. Outcomes weren’t great. Complications were inevitable.

Technological advancements have made it so that I, by being born at the right time and into privileged circumstances, can not only live, but can live the life healthy-me would’ve lived too.

But the reality is, people still die from complications of type 1 diabetes all the time. And whenever I hear stories of it, I break down. When people die from this disease, it’s rarely from their own negligence. It’s mostly from simple mistakes – not realizing that what felt like the flu was actually diabetic ketoacidosis. Not waking up from a low blood sugar and dying in your sleep. Miscalculating how much medicine or food you would need when you’re out and about. Or, also commonly, from not having the money or resources to afford what you need to survive. Continue reading “What it’s like to watch people die from your disease.”

Being chronically ill in the age of resistance.

I’m worn out. Mentally. Physically. Drained.

Not more than anyone else. I get the times we’re living through right now. None of this is normal. We’re all feeling depleted.

It’s in a different way. Beyond the emotional and mental burden of everything happening in the United States right now, my immune system has been firing at insane rates again, and my body is breaking down. Again.

This isn’t new. This happens in cycles, multiple times throughout the year. Continue reading “Being chronically ill in the age of resistance.”

Does my disease make me a burden?

I’m in Barbados with my best friend, riding shotgun in her mom’s Jeep, guiding my hand and arm to ride a wave of air out the window as we jet down the highway from the west coast back to her family’s house in the south. It’s the last day of my holiday stay and we’ve been chatting about life. I’ve known Marielle since 2004. We met right at the start of our freshman year at the University of Miami and there’s not a lot we haven’t covered, but getting older and starting to approach all of the big life things that come with it has turned our tone a bit from our normal jokes and singing.

“This is awful to ask,” I say, “but is Down Syndrome hereditary? I realize that I don’t actually know much about it.”

Marielle’s little sister Natalie was born with Down Syndrome and, for as long as I’ve known Nats and likely for the full 27 years of her life, she’s been the the most glitter-and-pink obsessed person I’ve ever met. Their uncle Eddie had Down Syndrome too, until he died in late 2016.

“It’s not, so it’s always been interesting to me that we’ve two people in our family with it, so close together.” Continue reading “Does my disease make me a burden?”

Have no idea what I’m talking about when I say ‘spoonie’?

As I develop content for my book, publishing in September 2016, you’re going to keep hearing me refer to this thing called a “spoonie.” Nope, not a trekkie. Not some weird reference to cuddling. It’s a way people with chronic disease describe ourselves, and here’s why. Continue reading “Have no idea what I’m talking about when I say ‘spoonie’?”