In which I shrink myself.

“We’re all like, ‘What’s wrong with the girls? Why aren’t they eating? Why are they worried about their bodies?’ Are you kidding me? Maybe because every message they’ve gotten since they’re born is that in order to be a successful woman, you have to get smaller and quieter until you disappear.” – Glennon Doyle Melton

I am not a physically small person. I’m 5’9″, towering six inches above the world’s average woman. My shoulders are broad and strong, my hips wide, my thighs solid and touching on the inside. I wear a size 10 shoe. They don’t even carry my size in English stores – it was a problem when my flats broke when I was on business in Manchester. I am muscular, dense. Unfeminine?

I am not a mentally small person. I speak with conviction. I am a voracious learner. I am passionate, obstinate, and just a tiny bit outspoken. My ego runs away with itself sometimes. Often. I am aggressive about my integrity and I cannot be convinced to do anything I don’t feel is right. Too much?

I am not a spiritually small person. The universe is my guide; I am its entertainment, but it’s still a fan. It knows I am strong-willed and it allows me to be so, and when it just can’t take my charging in the clearly wrong direction anymore it hits me over the head and brings me back. I am shown my way by energy. I call in my angels when I am in despair. I am protected and loved and sheltered by spirits. Unreachable?

My life is not small. It is tall and wide and broad and far reaching. Every synonym of large so that I can stretch my way into it, taking large steps toward my purpose. It’s what the uniform of yoga pants and flat-soled shoes accommodates – mobility. Agility. Quickness.

And yet, I’ve shrunk myself before – I’ve shrunk myself to better fit alongside men. Under their arms, where it felt nice to burrow. Like I was small. Like I could be hidden. Not because they’ve asked me to. Not because it’s been expected. But because it felt good – it felt feminine – to be small.

Feel physically smaller, next to tall, muscular men.

Feel mentally smaller, next to brusque, commanding men.

Feel spiritually smaller, muting my personal guidance to be guided, instead, by men.

It’s learned. Without even getting to the undertones of the expectation for women to be submissive, it is the expectation that we at least be accommodating. It makes us the cool, laid back girl. That we be attracted to possessiveness. That we wait for him to take a commanding lead. That we want to be shorter, smaller. That’s how men prove they can take care of us, yes? By being bigger in all ways.

Because somehow we all of a sudden can’t take care of ourselves.

I’ve had three involvements in my life that I call full-blown relationships. One with someone my height who I know weighed less. One with someone slightly taller, significantly muscular. One with someone who I could actually wear 4″ heels around and still be shorter (this is a thing. If you’re a tall woman and you’re reading this, you understand its significance). Each man possessing different, complex personalities and characters, with different jobs and motivations in life. Good men. Not one of them asked me to put myself aside.

Same order. One where I maintained my sense of self, my goals, my friendships, my passions. One where I put everything he wanted to do ahead of myself until I barely knew who I was and what I actually liked – I didn’t paint and barely wrote for years. One where I put all of his goals ahead of my own – mine could be done later, his needed to take priority. I enjoyed that work more.

I did that. I did. I take full responsibility for each of my actions. And why did I do it? To feel more feminine in my relationships. To feel more womanly. And the more womanly I felt – the smaller I felt – the more comfortable I was further shrinking myself. How, Sway?

I don’t have a large declaration to end this, but it felt like an important enough realization to share it, because I think so many of us women shrink ourselves, intending to somehow be in service of the men we love, when it does nothing of the sort.

How does it serve anyone at all – ourselves, our loved ones, the world – to prioritize the perceived (and completely fake) comfort of being small?


On being an empath.

I have a habit of jumping into a project so forcefully, and being so energetically open while I do so, that I throw myself completely off balance. For me, not only does that manifest mentally and spiritually – I get horribly drained – but physically. My health dive bombs.

Different schools of thought have defined it differently. Fair warning: I am a hippy, woo-woo, indigo child who also lives in the science-based, western medicine world. I see all of these things as essentially the same; just different definitions of the same things happening.

(no, this doesn’t mean I think that being energetically sensitive caused my type 1 diabetes. That was my immune system attacking my pancreas. But I do believe each of these things deserves equal attention.)

Western medicine
My immune system stresses to the point that it starts attacking me. It’s what caused my type 1 diabetes to develop at age 10. It’s what has caused all of my recent food allergies and intolerances. It’s what’s caused the fibromyalgia – with all of its chronic pain and exhaustion – and most likely, has caused Celiac disease. Yes, my endocrinologist asks me every three months if I’ve made a gastroenterologist appointment. I’ll get to it.

Eastern medicine
I swing yang. My system runs too hot, too anxious, too sensitive to outside factors like heat and crowds. It creates an anxious environment that requires me to focus on things that cool and calm my system to help it function. Acupuncture helps me re-route that a bit, while also addressing a lot of my physical pain and the ways my immune health manifests (like frozen shoulders and insomnia).

Native medicine
I am a massive empath. For me, there is no barrier between myself and others. Other people’s energy severely affects me. While others have barriers between themselves and others, I have barely a membrane – other people’s energy, other people’s experiences affect me deeply to the point that my body and mind feels as though they are its own. While others often work on being MORE open, being more able to read others, I’m actually working on the opposite – how to shut that down a bit. It’s not something that I want to lose – but I’m working on understanding that losing it wouldn’t even be possible. I require closing myself off a bit to maintain my own well-being.

Through each of these explanations, when I am too open, too anxious, too stressed, not protecting myself to the extent I require, not resting and shutting down outside influences to the extent I require, I get mentally, spiritually, energetically, and physically ill.

I did it to myself this past summer. While being new to a job I pour myself into, I was also writing a book that I was pouring myself into, while also being in a new city that I couldn’t figure out how to manage the energy of – the energy of New York City is unlike anywhere else I’ve been (save certain cities in Asia) and was overwhelming for me.

While I’m proud that I was able to jump into a job I care about so much, and that I was able to get my book done and out in the world to help whomever needs it, I find myself truly scared to jump into anything else again, for fear that I’m going to make myself that sick.

So it’s made me pause. I have a lot of personal work to do before I can jump back into the book and personal business push. I’ve luckily been able to work from home for my job, but it’s still not been quite enough. I want to reach people, to help people. But I require learning how to protect myself during this process first, or I will keep making myself sick, and this cycle will not end.

The print version of my book will come out in late Spring 2017 (but you can absolutely grab the ebook here). I have my eyes set on that milestone. Between now and then, I will be working on myself to get to the point that I can properly balance my self care with my drive.

And that’s a difficult thing for anyone who likes to sprint toward goals, who knows that they want to reach out and help as many people as they can. I must figure out how to help myself first.

I hide my sickness from myself.

Disclaimer: There’s a picture further down in this post that isn’t quite NSFW, but it might make you blush. It is of me. I don’t share it to be sexual, but so that you can have a better understanding of these things I wear on my body every day. After so long in the medical system I see my body as just that – a body. It’s been poked and prodded and treated like a medical experiment by me and by medical professionals. After a while of being sick, you start to see your body as separate from yourself. That said, if you don’t want to see a picture of my backside, don’t scroll all the way down. The non-backside including pic is directly below.

dexcom-sitesInvisible illness is a phrase thrown around in the chronic illness community a lot – it is a simple representation of a reality we live with every day.

These diseases we manage, no matter their weight, are hidden from most. On one hand it’s really great – I am privileged to not get pittying looks from strangers, I enjoy full mobility, and for the most part – unless I’m having a particularly rough day or purposely showing or talking about what I’m going through, no one will ever know that my body has been waging war on itself since I was 10.

On the other hand, people doubt your sickness all the time. If you’ve made arrangements, as I have, to adjust your work to your health or have had to be your own vocal advocate in any kind of situation, people analyze and doubt your every move. “But you’re laughing and socializing – you don’t LOOK sick!”

Let me be really clear here – I am far too consumed with trying to assure myself that I am well to waste time proving to you that I am sick.

For anyone who lives with chronic illness, it’s something we have to brush off. Because at the end of the day, none of these things we deal with are actually invisible. They’re just very well hidden.

At every moment of the day, I have two devices on me that help keep me alive. Since I was 11 years old, I’ve had a tube sitting under my skin to deliver medicine I would die without. Another sensor under my skin keeps track of how the medicine is working at any given moment, if I need to adjust based on food, exercise, stress, sleep, water intake, temperature, and any number of things that affect how my body is processing my medicine.

Thing is though, not only is it hidden from you, but I hide it all from myself.

I don’t keep my pump and sensor sites in view anymore, not because I’m ashamed or embarrassed, but because I get overwhelmed when I have to be reminded that they’re there.

For the first 5 years, I placed my insulin pump sites on my stomach. When we moved back to Hawaii, not wanting my abdomen to be scarred when I was wearing swimsuits that put it in full view, I moved my sites to my backside.

When I started on my continuous glucose monitor, I placed my sites on the back of my arm. After a few too many quizzical looks on the subway (I didn’t care about the looks, I cared about the reminders) and constantly accommodating the site when I was trying to sleep on my side, I moved it to my back, right at my waist line.

I know they’re there. I would have panic attacks if they weren’t. They are my comfort blankets that let me know I’m going to make it through the day, but I don’t want to think about them.

When people question whether or not we’re really sick, I wish they knew just how much we are constantly doing to protect our mental health. Often, as doctors are taking test after test, tests that are invasive and disheartening and only measure how our bodies are doing and not our minds, it remains solely up to us to take care of whether or not we’re going to be able to face the day.

When I’m smiling and laughing, going out and about and being social, sometimes it’s because I really do feel well that day, and that should be celebrated, not questioned. But sometimes it’s because I want to act well. I don’t want to be reminded that I’m ill.

I hide my sickness from myself, because that’s how I survive this. For almost 19 years, that is how I’ve survived this. For the rest of my life, that is how I will survive this.

My insulin pump and continuous glucose monitor are on my body 24/7, where they will remain for the rest of my life. These are constant reminders. Honestly, I rip my CGM out at least every other week out of frustration, but my insulin pump site cannot go anywhere – with it out for just a few hours, I would be in the ER. They are little, but they feel heavy sometimes.

Don’t talk about us without us.

Don’t talk about us without us.

It’s a phrase I first heard from Maysoon Zayid, a Palestinian comedian who lives with cerebral palsy (whose story I told in my book) and is an advocate for representation – of Muslims, the disabled, and anyone else otherwise underrepresented – in media.

I’m fairly certain I shouted “YES!”  at the screen when I read it. When it comes to living with chronic illness, I don’t want to hear or see the opinions of those who don’t live with this burden in places that are supposed to be held for us who do. It’s not that I don’t value them as people or value their opinion. But they have their own space – a lot of it – and they cannot fully understand what living in my space means. Well-intentioned opinions formed from lack of experience are useless at best and can be immensely damaging.

Choosing to disengage is damaging too. So many people, when they feel like they cannot add to a conversation, turn away from it. Their feelings get hurt because they don’t feel included in the club, even when it’s a club with shitty membership benefits.

So what does it mean to be an ally? How can we help without taking up the space others cannot get access to (because we – usually unintentionally – are in the way)?

For me personally, what does it mean in this world when I enjoy such immense privilege – I am a middle/upper-class, educated, white woman who, other than my autoimmune illnesses, enjoys relative health and ability and not only knows how to navigate multiple complicated systems but has plenty of help doing so – while I watch my friends struggle and fight for representation and voice? What does it mean for me personally, since I have a pretty large ego and love to hear myself talk? What can I actually add without being an asshole?

Because full disclosure – I have been a shitty ally before. I’ve thought that I was special for being an ally. I’ve totally played the “woke” card because it somehow earned me points. I’ve interjected opinions where my opinions were not needed or asked for. I’ve spoken up when I have literally hundreds of friends whose voices deserved to be heard in the medium.

To be a true ally, you must listen, but you must be prepared to stand to the side. You must be prepared, when asked for your opinion on something, to say “I really appreciate your asking, but my friend _____ is who you really need to talk to.”

In the same way that I adore my friends who want to learn more about what I go through with my health, my struggles navigating our broken health system, my frustration with medical professionals who assume I am making up stories about my experience, but still expect those same friends to stand aside when it is my turn to speak and share my story, I must also be prepared to stay in my lane while holding the lane next to me open for the person who keeps getting cut off.

That’s where being an ally gets powerful. My step dad is a former Vietnam Marine, so my mind goes to the phrase “MAKE A HOLE!”, which he uses liberally when we’re in his way (which is often, apparently).

As allies, we get to make the holes, hold the spaces. We have the immense power to use our privilege to make a space for those who are unheard, then get the hell out of the way. Because the people who aren’t being heard have powerful voices. It’s not that they’re not loud enough to break through. It’s that they’ve been forcefully held back, in some cases, from doing so.

But those voices? They’re the most powerful things you’ve ever heard.

This post was inspired by many conversations over many years I’ve been able to have with my amazing, multicultural group of friends who are willing to lovingly check me when I need it. They have helped me grow where they had no duty to do so, and for that, I thank them.

More recently though, I was spurred by listening to the “songs inspired by” soundtrack from The Birth of a Nation. It is a truly beautiful album because, as we know, the more you try to suppress a people, the more you will fail, and the more heart-wrenchingly beautiful the art becomes. Listen here (it’s also up on Spotify). 

Published author, day 3

Lala Angela 2I’ve spent the last three days at my publisher’s home, nicknamed The Author Castle, outside of Washington, D.C. On Thursday, my book launched. Within the first 24 hours, my book ended up in the top 1,000 in the Amazon Kindle store and hit #1 in pain management in the US (#2 in Australia in the same category), #1 in disorders and diseases in Japan, #1 in chronic pain in Canada, and #1 in pain therapy in Germany. It also seems to be holding pretty strong in the high ranks for Social Sciences in both Japan and the UK. So yes, I am officially an International Best Selling Author. Continue reading “Published author, day 3”