My birthday request: 30 on April 3rd.

birthday

As you probably know because I talk about it all the damn time, my 30th birthday is coming up on Monday, April 3. And in honor of all these threes, I’d like to ask for three things.

Choose one. Choose all. COMBINE all three to truly make my day. Or don’t participate at all – I’ll love you anyway. But these are what I would really love on my birthday (*nudge* Monday, April 3 *nudge*):

For each, feel free to send, post to my wall, tag on social media, whichever. Thank you in advance!

  1. What’s your favorite, most valuable (or most ridiculous) piece of advice? I’ve been here for three decades now but I’m still learning (and will always be). What’s a piece of advice you really love?
  2. What’s your superpower? In my book Beyond Powerful (coming out in print in September – yup, that was a completely shameless plug), I talk about the superpowers gained from a life with chronic illness. My particular superpower is transparency. It allows me to connect with other people and work through whatever it is I’m carrying. What’s YOUR superpower?
  3. Art. You know I love my art. A sketch, a doodle, a painting, a stick figure. Something I can just giggle endlessly at on my phone or something I can hang on my wall. I’ll love it just the same.

Remember – Monday, April 3: 30. 

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.”

Only love is real.

elephantsMy entire life and being could be summed up by this – I do absolutely nothing halfway.

If I’m going to get sick, I’m going to get SUPER sick. If I’m going to break my ankle, I’m going to break it the most it can possibly be broken. If I’m going to be an awkward idiot, I’m going to be the MOST awkward idiot.

But if I’m going to go for a goal, I’m going to sprint. If I decide I like something, I’m going to be the most enthusiastic supporter of it you’ve ever seen, be it Christmas or a world-changing organization. I go at my own pace – it is fast and intense and full of eagerness and gusto. And this way of being means that when I love, I love with my whole heart, my whole being, with every ounce of my intention centered on pouring belief and passion into that love.

And you, my friends, make it really damn easy to love that hard. I am so consistently lucky to have you all in my life. You make love easy. You make caring easy.

I’ve said it a million times before and I’ll say it a million times again – I don’t know how I deserve such amazing people in my life, but know that I’m appreciative and I love you with everything I have to the point that I’m consistently struck by and in awe of it.

Happy Valentine’s Day, friends. Love you deeply.

On heartbreak.

heartbreakA few caveats before we go into this:
1) I’m fine. I’m not writing this from a place of current pain. It’s just something I’ve wanted to put on ‘paper’ for a while.
2) To the person who was involved, we are absolutely good. Life is an amazing teacher and I’m grateful for all of it.

My mom says there have been two times in my life when she wasn’t sure I was going to make it.

The first was my type 1 diabetes diagnosis at 10. After being inexplicably ill for months, I almost slipped into a coma and spent several days in the intensive care unit being stabilized, an IV inserted into my jugular because the rest of my veins would collapse with any attempt to place a needle.

The second was the summer of 2015 when my entire being broke in a way I didn’t know was possible.

Every morning, for six and a half weeks, I opened my eyes feeling like I never slept. Without respite, the memory of why crashed over me. Unwillingly, tears started sliding down the side of my face as I pushed myself out of bed. Waves of grief hit me in the shower; in their most overwhelming I curled up in the bottom of the tub, water washing over my body. Continue reading “On heartbreak.”

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.”

It’s just sex.

There tend to be two ways that young women are taught to think about sex. I’d argue that neither is correct. They are:

  1. Don’t. Protect your virtue. I mean… it’s your decision. Obviously. But *shrug* do you REALLY want to be known as *that* girl? Do you want people to talk? I mean, I’m just saying, but it’s not very lady-like. You can have your fun but, you know, be careful. Men only want one thing anyway.
  2. Free love! You live in the age of women’s empowerment, honey! Don’t let anyone try to slut shame you! Do you! Need some condoms?

I wish someone had told me about the middle ground. I wish someone had ever had a sex-positive conversation with me that leaned less on the act or the societal expectations and more on the energy sex requires.

Stop, get your mind out of the gutter.

I don’t mean physical energy. Step your workout game up. I mean your spirit. Continue reading “It’s just sex.”

13 months without health insurance: a pre-existing condition nightmare

By now, you’ve heard that two nights ago, while the country slept, the Senate voted against measures that would keep key provisions of the Affordable Care Act in place. I believe this is short-sighted and dangerous, potentially leading to millions of Americans losing their healthcare coverage. I chose to write to my local congressional representative, and I encourage you to do the same.

Dear Congressman Donovan,

I’m sure you and your staff are being flooded with opinions on the Senates recent vote regarding the Affordable Care Act, so let me go ahead and add to the pile. I have lived in your district since February of last year, moving from Atlanta, GA to take a job. I’m lucky to be in a place now where I have wonderful healthcare provided by my employer and I am tremendously grateful for it. But for 13 months, before the Affordable Care Act and its provisions about coverage for people with pre-existing conditions was in place, I didn’t have health insurance. No amount of money could have gotten me coverage, because I have type 1 diabetes. Continue reading “13 months without health insurance: a pre-existing condition nightmare”

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?”

Listen to your gut.

I have a few friends coming up against big life decisions soon and while I can’t offer specific advice, I can offer this –

Don’t listen to your head. Don’t listen to your heart. Listen to your gut.

Your head is going to try to steer you toward what looks best on paper, or looks best to your ego, but isn’t necessarily the best for you.

Your heart is going to operate from whatever prevailing emotion has taken root at the time. No matter how resilient and brave your heart is, it has a tendency to make judgments based on whatever it’s feeling in the moment.

Your gut has been observing everything that you stopped consciously paying attention to eons ago. It knows how your heart tends to sway you, how far you need to be pushed, and how much you need to be protected. It knows the facts and weighs them, but doesn’t let you put more stock in them than necessary. It’s wise and old, neither brash nor unfeeling.

So go sit with it and listen. Get really quiet, wherever you can best do it. For me, it’s next to the ocean. For you, it might be in the mountains, or walking your dog. Watching your kids play or sitting next to your grandmother as she reads. Painting or practicing yoga. But give yourself that space to really listen, and when you get your answer, don’t second guess.

When fear kicks in, that’s your brain and neural pathways trying to protect you from what you’ve never experienced. A new path is an unknown, so your brain thinks you’re going to get hurt and uses fear as a way to protect you.

Keep listening to your gut, it won’t lead you wrong.