[A long overdue post] On Healing

Today is cause for celebration. The reason? I am enjoying food.

Those who know me best may already know how I’ve struggled with anorexia since age twelve – secondary to what we now know as an autism spectrum disorder. While it would be impossible for me to ever rewire the autism out of my brain, for the first time in over two decades, I can actually sense my brain truly healing from my severe, chronic and enduring eating disorder.

I am doing things I never imagined possible, and the best part is – I’m not even thinking about them beforehand. Not feeling guilty about enjoying food. Putting as much (hypoallergenic) butter on a (hypoallergenic) bagel as I want (…yes, hypoallergenic, due to true, medical allergies and not eating disorder rules or behaviors). Heck, eating and enjoying a damn delicious bagel. Being brave and adventurous about trying new foods – even reintroducing new meats into my diet (helloooo venison!). Walking into Trader Joe’s and grabbing what sounds the most delicious rather than what fits a set of arbitrary rules my brain is screaming at me the best … all without even thinking about it. In a lot of ways, I feel like I am a kid again. My mind feels wiped clear of diet lies and I’ve forgotten all the calorie contents I memorized at age 18 — I now even forget to look at calorie labels at all.

Even attempting to describe this feels like it falls painfully short of capturing the rediscovered freedom and innocence of seeing food as simply food again. It is nothing short of miraculous. In fact, it just may exactly be miraculous.

Sometime shortly after the 20th year with anorexia mark, I made a decision to give up on the idea that recovery was possible for me. Yes, some people can get better, I reasoned with myself, but I was not one of them. It wasn’t a very sad decision, more like a matter-of-fact realization peppered with the relief of a self-granted permission to stop trying. I was just going to be one of those functionally anorexic people who keeps their weight at a low-but-not-deadly-just-above-hospital-admission-criteria and that was that. I was never meant to be happy or free … And I was okay with that.

Fortunately (?) for me, my body had other plans. Despite my plan to stay out of the hospital, I began to develop medical complications of anorexia one after the other and paralleling these serious complications was another equally serious phenomenon – autoimmunity. The autoimmunity felt as if my body had internalized all my past acts of self-destruction, and they had now taken on a (molecular) life of their own. My list of illnesses seemed endless.

But back to my miracle. So yeah, I am not really sure when (or how) the change in my brain started. I can’t begin to pinpoint when the experience of enjoying food began again. What I do know is the more my body uncontrollably rejected food – in the form of SMA syndrome, gastroparesis, and autoimmune illness – the more I began to feel grateful for the simple act of eating/ability to eat anything at all. It became harder to do things to make myself sick or cause myself more pain when I was already locked into a severe sickness and unrelenting pain.Yet even this seems like a miraculous mystery, when you consider in the not-so-distant past that it was still quite easy for me to abuse food in order to deal with the stress of autoimmune illness. So how this all changed I will never know. The last time my autoimmune colitis flared (this winter) and my weight predictably plummeted was the very first time I actually didn’t want to lose any more weight and the first time I didn’t get the endorphin high that starvation would always give me either (another sign my brain was healing). Thank God I am beginning to see self-abuse as a truly nonsensical form of coping with pain. I am finally weary of adding to my own suffering.

The other half of this equation is autism/ASD – the more I began to understand about ASD and myself, the more I began to realize just how many anorexia behaviors I was using to self-medicate – so to speak – for my autism. I’ve endured quite a few misdiagnoses, a lot of doubters, a lot of stigma, and over three decades of living before coming to the correct diagnosis. This has been a hard and painful journey of feeling constantly misunderstood. But it has also explained why it was so difficult for me to even begin to heal/change.

So am I cured? No matter how well I feel, I will never feel brave enough to use that word. I am far from well, and it would take quite a few more miracles for all of my health problems to disappear. And an adversary as cunning as anorexia is not one to ever be unguarded around. Very much like every cliché horror movie plot: the moment you begin to believe think the monster is gone forever is the very moment it resurrects for a surprise attack. But I am healing. I can feel it. And I’m healing from anorexia in ways I never imagined were possible for me and had completely stopped daring to reach for. And that feels pretty goddamn miraculous to me.

Things I’m Loving

Ten things I’m loving lately:

(1) Tender forehead kisses. You know the kind: they make everything instantly better. They are as tender as they are sweet. And I wouldn’t want to live in a world without them.

(2) Dove red-velvet flavored milk chocolates. Just ugh, so good. GO get yourself some now and thank me later! Quick, get your butt out the door while they are still on discount from valentine’s. They are the real deal.

(3) Pho. Pho-real. Give me ALL THE ASIAN FOOD ! Bonus points for topping with siracha.

(4) My oversized scarf. Wooly perfection. The perfect item to very publicly (and warmly!) self-swaddle in the most completely adult and totally socially-acceptable way.

(5) Joking. One thing that has really gotten me through recent health crises has been humor. Not that it makes everything magically better. But it sure as hell makes everything funnier. In all honesty, though, I could not have gotten through the week without Boyfriend and his endlessly irreverent humor by my side.

(6) Dogs. Dogs are little, hairy angel-sprites sent to earth to make us smile, give us endless amounts of love & cuddles, and to teach us humans how not to be such shits to each other. Dogs are just great.

(7) Lists. Lists can be useful or purposeful or just great. Take, for example, this one.

(8) Flurries.We’re not talking a full-on snow storm. But little tiny flurries that just ephemerally appear and disappear just as quickly, like a passing rain shower of glitter. Those are what I like best.

(9) Friends who drive me to medical appointments. Shout out to my homies. Thanks for being my DD while I seemingly endlessly exist as a cross between a hot mess and a total lump.

(10) Self-acceptance. Defo working on mastering this one still, but in those brief moments when I can manage to get the hang of it, it really makes life hella lot easier to do. I can’t spend life worrying that I’m going to do something and look like an idiot. I need to accept that I do stupid shit all the time and move on from it  . . . in a sparkly, glitter-cloud of fabulousness.

An Interesting Week

This week began with two brain MRIs and me subsequently learning I have an abnormality in my brain (most people who know me would be like, well duh!). And it ended with a three-day admission in the hospital. I guess you could call it an eventful week.

After many weeks of not feeling well at all (and seriously neglecting the blog because of so little energy for it), everything came to a head when my BP and pulse became so unstable that my heart doctor basically took one look at me and then sent me straight from her office to a hospital admission. I should have been more on top of my fluids. I should be more on top of a lot of things. Oops, my bad.

Something I have noticed about myself lately is that I do not always fight for my health as hard as I should. As someone who has prided herself on her determination in athletics and academics and generally in life, and who has pushed herself relentlessly to the limit, I seem to have adopted a less than stellar attitude toward this. I guess a part of me doubts that my health is really as bad as it is. Or that I do not want to admit things are as bad as they are. The old “all-or-nothing” thinking that if I’m not the worst case of fill-in-the-blank, then it’s really not bad at all. Yeah. Not my most brilliant of moments, folks.

So, this week I have learned a hard lesson, which is that I need to take much better care of this fragile body I own. Even if it seems like day after day of getting nowhere, I still need to try. If I don’t, it seems like things can go downhill pretty fast.

So, to recap this week’s events:

Brain MRI – being hurtled head-first into a long, noisy tube while simultaneously getting contrast injected into your vein. They also put this hannibal-type cage over your face and it has a mirror, which is cool, I guess. The end product of all this being that they saw I have an abnormal growth on my pituitary. And now I need to see an endocrinologist – but hopefully will not have to have brain surgery.

The Great Dehydration Scandal of 2016 – Well, I thought I was lucky having not been in the hospital in 2016 yet, but that winning-streak came to a screeching halt this past Monday. I was lucky to have a team of compassionate and informed professionals who all treated me with respect and who viewed my autonomic dysfunction as something serious and life-altering. Highlights include copious amounts of IV saline, an adverse reaction to compazine that literally had me panicking, joking around with my GI doctor and calling his cell-phone for him when he lost it somewhere on the unit, and seriously the best damn omelette I’ve eaten in a while.

So anyhow, now that I am on the road to feeling better and treating myself more wisely, I hope to be back to blogging a bit more soon! Thanks for sticking by me.

 

Every Last Tear

Yesterday morning was a good morning . . . that is, until I shit myself.

Most people don’t know what to say to a statement like that.

And that’s okay. I am going to tell you that sometimes there truly is nothing to say that will make anything better. And that often, in situations like that, the absolute best thing we can do is simply bear witness to or acknowledge one another’s suffering. More on this later.

 

Back to crapping yourself . . . doing so, particularly involuntarily, basically never becomes less disturbing. As a nurse, I have taken care of many patients who are 84 or 94 years old and who still get incredibly upset over this experience: let me tell you, it isn’t any easier to handle when you’re only 34. This phenomenon is just one of a constellation of symptoms – recently increasing in severity & frequency – that are leading my team of physicians to believe the systemic effects of my autonomic nervous system dysfunction might be even more severe than previously thought or that perhaps I am suffering with an additional, equally-serious disease. Crapping myself without even feeling it has happened 5 times (including yesterday) in the past month alone.

 

But yesterday morning was completely different from my usual oh-look-you-crapped-yourself-and-didn’t-even-know-it-yay-experience in that I didn’t cry. I didn’t feel scared. Or depressed over it. At all. In fact, I felt seriously ANGRY. Like beside yourself angry. Seriously, super duper angry. The emotional equivalent of siracha.

 

I hated my body in that moment. Hated it for not working properly whenever I least expect it. Hated it for betraying me. Humiliating me. For acting like my selfish, embarrassing drunk uncle – the one who ruined literally every Christmas I can remember. Sorry if this is over the top, but boy was I mad. And I really didn’t know what to do with all this anger.

 

So I chose to walk to the pharmacy, as man-flu (ugh) has hit the homestead. Boyfriend is down for the count & I was in need of supplies anyway. As I walked, hot angry tears streaked my face. I was breathing in hard angry huffs. And I am sure my sticky, wet cheeks were at least a few shades of red. But I was completely blindsided by what happened next. What struck me next was something Boyfriend’s been saying lately – that god sees our every tear.

 

And while I vehemently dislike most organized religion (because of how people so often can use religious words to alienate or divide people, or even hurt others), I love and trust Boyfriend. And I do connect deeply to spirituality. So the prospect that my every tear – no matter how hateful, angry, lonely, frightened, happy, or pained – is observed and valid was the only comforting thought I found myself being able to cling to in that moment.

 

My burning, angry tears – the ones where each drop is filled with fresh, hot resentment and deep disappointment – were okay. They weren’t morally less just because they felt like they wanted to jump off my face and punch a wall. They were valid to the situation. And every tear was seen . . . by at least me, by perhaps others (oh hey, everyone shopping at the pharmacy! just another public meltdown for yours truly.), and perhaps even by something greater than any of this. The observance of my tears simply in and of themselves was enough validation that they and the pain behind them were real. And it felt oddly comforting.

Being present. Seeing it all. Every last tear. Not judging, just observing. Witnessing. Acknowledging. Such simple, wordless acts. And my comfort in a space of anger where I doubt even the best-intentioned words would have penetrated.

The next time you encounter a person in a situation – illness, death, crisis, loss, trauma – that is just so incredibly devastating you don’t even know what to begin to say, take comfort that – in order to comfort – you don’t have to say anything at all. Just see and know that what you are seeing is real. Acknowledge. Observe . . . every last, hot tear. A moment that is as full of love as it is also empty enough to be whatever we need it to be. Offer that moment. Be one of the ones to witness the pain. That is enough. That is actually even more than enough.

Life (and stuff): Holding on, Letting go

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I have a confession. Sometimes, I hold a grudge.

I’m learning a grudge is kind of like Tylenol: you think it will somehow protect you from pain, but it really doesn’t. At best, it’s thoroughly ineffective. And in large enough amounts, it can actually even poison you.

 

Rewind to last week, when Boyfriend said, “you really respond to people with empathy.” It was literally the best compliment I’d ever received from him. We also talked about how I’m a canary – the proverbial, sensitive bird in the coal mine – and how not everyone I bump into in life may feel as sensitive as I do, but how I tend to treat them that way anyhow. I digress. It was a very good talk.

This week, another close friend called me an innocent bystander in life. And while I really am a canary, I’m far from innocent. And I’m not always empathetic or all rainbows and sparkles or any of that either (gasp!). And especially not when I’ve been deeply hurt.

 

The act of forgiving & moving on is something I really need to learn to do for myself, to heal myself. The truth is: this takes a whole hella lot of work and is much easier said than done. Because as much as I strive toward kindness & empathy – practicing it as much for myself as I do with others – and as hard as I try to let go of the pain & be vulnerable, I also find myself fiercely holding tight to the still-vivid memories of past hurts. As if my life depends on this very action. As if it will protect me somehow.

 

I guess I still hold on, because I cannot understand the parts of life that seem to involve just repeatedly lining-up to get slapped in the face again & again (metaphorically, emotionally – to my knowledge, nobody is actually slapping me).

 

I don’t understand why some of the nicest people I know have also been hurt the most deeply.

 

I don’t understand how easy it is for some people to repeatedly, knowingly cause someone else harm.

 

I don’t understand how sometimes the easiest people to hurt are actually the ones closest to us.

 

I don’t understand how or why the world seems increasingly more frustrated & angry.

 

I don’t understand … A lot.

 

And I don’t understand why sometimes I just can’t seem to let go and move forward in a space of love. Why I would choose to hold on to pain. Why holding on feels easier than letting go.

 

I’m not going to make a lofty moral argument for forgiveness here. I can’t. Not when it’s hard enough for me to follow that same advice. But there is something valuable to be learned in letting go. And I guess I’ll just have to let you know what that is when I get there.

 

Some of us think holding on makes us strong but sometimes it is letting go

Hermann Hesse

Unapologetically Real

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Some people might think living unapologetically translates into a direct license to act like an asshole. That their brash or selfish actions (& their consequences) can all be instantly negated under a veil of self-proclaimed authenticity or self-empowerment. The “it’s just who I am, love it or leave it” crowd that seems paradoxically oblivious to their potential to hurt others. Have you ever met one of these and just felt, well … a bit stumped?

I have. It’s all so perplexing. I love raw, honest people, but in all honestly, the scenario described above just doesn’t feel 100% right to me when I experience it either. And this is an area where I know I get really confused & then immediately start worrying if I’m just totally wrong about it (uh huh) or a real coward (yes) or something. Because it’s so hard to be (and stay) real when you leave the safety of the illusion that everyone liking you for YOU is even remotely possible and instead enter realness: for me this means the challenge to say what’s on my mind when I also just really want everyone – but including me – to be happy. Or at the very least not offended.

As someone who considers & analyzes almost compulsively — and certainly wholeheartly, neurotically, & co-dependently — pretty much how their every action will affect others, I can tell you I have not found authenticity (living & loving unabashedly) & conscientiousness (considering it’s effect) toward others to be mutually exclusive.

You can do both & still feel good about yourself at the end of the day … You can … can’t you?

Recently, I have been writing more. Really putting myself out there just as I am & my fragile, tender heart into my words. Guys, it is scary as fuck. I am putting my soul out there to be rejected. Yes, my soul. I am choosing to greet the world on a soul level and it is often just as painful as it is frightening. Interacting this way – in a world that I question whether was truly made for souls or that it knows how to value and treat them – is hella hard. This all probably sounds really odd, but hopefully you get me on this one: it just feels like the world interacts with souls most often by crushing them. And I absolutely know I will be crushed and rejected, by at least a few people, if
not more. So, I find myself stuck between truly needing to be unapologetically me & the temptation to spin my life into something more palatable & easily understood: something it’s really not.

Yep, pretty much.

Perhaps the most scary part about blogging from a vulnerable place (I should think of a catchy name to capture this, like “rawgging” … umm okay, that one might need some more work.) is that there are some people out there who will read what I pour out of my heart, and then possibly use the information to make inaccurate or hurtful assumptions about me:

• She talks about her illnesses only because she wants attention.
• She wants to be/stay sick, that’s why she is.
• Gosh what a negative person.
• Man, this chick sounds depressed.
• Doesn’t she have Boyfriend to talk to about all of this? (Yes, and he’s a freaking saint.)

And I struggle in exposing the real me through writing for fear of any rejection or assumptions, whether real (ouch) or imagined (even worse), and for fear of causing harm. Because, while I definitely want to be the person who is unapologetically open & authentic, another part of me knows that every decision has a consequence, and I am opening the door to misunderstanding of the REAL me.

You see, it’s very ideal to greet the world with something that is not you. The not-real. Kind of like in the movie Zoolander, when they need to go to fashion week in disguise, needing to look like “not-us” – and if you need to better understand this movie reference, please watch it ten more times until you have the entire movie memorized. Like I do.

Guys, it’s this scene.

Just kidding, back to serious-ish-ness.

My point is, and I promise I have one: It’s very safe to stay inside the neat little boxes we’ve grown to expect in everyday life:

“How are you today?”

“Fine*, and you?”     *actually not really fine but smiles anyway.

To hide the real you behind a mask or in another body. I am guilty of this.

Your emotional stunt-double handles rejection far better than the authentic you, so you keep putting her/him out there instead. We walk around life interacting with bodies & facades instead of souls, because it’s easy & comfortable. But guys, it just doesn’t seem really REAL. At least not to me.

As someone who spent more than two decades of their life living one long apology for basically existing & having only the most basic human needs, I find it extremely challenging to remain real & unapologetic. Perhaps some of the most valuable relationships in my life, therefore, are those in which I can feel brave enough to talk freely about the things that aren’t always easy, fine, or comfortable. Because while I truly want (and love when) things to be good, it’s the friend who knows how to just be still with you & who accepts the bad moments as freely as the great ones that usually wins my heart.

I guess what I’m saying is that all of this seems so important. Because it’s important to grow in life to a spot where you can not only be your true, REAL self in life but also have a precious tribe of people there who cheer you forward & honor the authentic you. And that you honor & respect them too. Not everyone is going to like you – but not everyone needs to understand the real you in order for it still to be okay for you to live openly. Rejection and pain sting, but they sting an open, bleeding, living heart. They only sting because you are alive & REAL & unabashedly embracing your you-ness.

You know, the real you that says awkward shit & has rough edges? With all the fragile, messy, human parts? The part of you that relates to (me) sobbing in public places every once in a while? Yes, that one. That’s the real you I really love. And I’m learning to love mine too.

” ‘It doesn’t happen all at once,’ said the Skin Horse. ‘You become. It takes a long time …. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.’ ”

Margery Williams, The Velveteen Rabbit

A very Merry Un-birthday to me.

Well. I guess I’ll be starting off with a bomb-drop of a first blog post here, because apparently, that’s how I roll.

 

Next week, on this day, it will be my official birthday eve.

Oh, shit.

While I’d like to think my game-face is a particularly believable one, it may not (or it may) surprise you to learn that this time of year is always especially difficult for me. “Difficult” here actually meaning “unbearable.”

Have I recently seemed happy? grateful? ridiculously funny? silly? positive? bubbly? Well, in fact, I am still all those things.

But I am also pretty profoundly depressed.

 

I’m not sure I even really know why this is quite yet, but with each passing year as the days approach closer to my birthday, I find myself vacillating between wanting to truly celebrate my existence and somewhat-hopelessly wishing I wasn’t alive at all. A growing accumulation of long-term health issues has allowed my experience of such an existential ambivalence to become even more frequent and predictably worse.

For example, last year’s birthday week festivities culminated in becoming bed-bound, a hospital admission, low potassium, & a STAT double endoscopy.

This yearly depression is an unwelcome friend and birthday party guest.

 

I’ve learned that the most important part of attending to feelings of depression & disturbingly strong yearnings for un-alive-ness is this: you can NOT passively let these feelings just sit.

The appropriate action must be something resembling the emotional equivalent of a STOP-DROP-and-ROLL.

That’s right – act like something is on goddamn fire.

Because it kind-of is.

 

While I often align with the holistic perspective that “feelings are visitors” and we best “simply allow them to come and go” without engaging, I am discovering that this is one of the few situations where the strategy just doesn’t seem to work. Because a depression so deep it leads to hopelessness or thoughts of suicide should not be treated like a temporary visitor. Because it is actually a FREAKING BURGLAR – and that burglar is tryna steal your life.

Aside from the obvio need for professional (and possibly pharmacological) intervention in most cases of depression, there are other ways to comabat this burglar and/or begin to put this fire out (note to self: next time, try to pick just one analogy & stick with it).

 

There are certainly a number of blogs and websites that someone (like me) can use for guidance, advice, or simply to connect to something that helps ease the I’m-all-alone-in-my-craziness-ness a tiny bit. There are also crisis hotlines that can be accessed at anytime, on any day. There are also an impressive amount of resources available for self-care (see also: the impossibly rising popularity of adult coloring books. I am now the proud owner of two).

I personally have also had limited luck trying to skyrocket myself out of depression using massive amounts of caffeine (kids, don’t try this at home) and exercise. And writing, whether something publish-worthy or a scribble on scrap, is a tool that at least for me personally has recently been growing in helpfulness. I may have even bribed myself to write this post with a promise of a short walk after for chocolate and coffee, because hey, if one method helps, why not try several of them all at once.

 

And then there are also times when it feels like I have below zero energy to cope with anything at all, that I can’t even be bothered to brush my teeth let alone exercise or read a blog, and nothing I try will seem to ever work. But the trying must continue anyway.

 

One last observation about of my own personal dealings with the soul-crushing heaviness that depression can bring is the helpfulness of connection. Often (okay, always) it’s really embarrassing and frightening to admit that any of this is going on. I am lucky to be able to openly share my struggles with Boyfriend and Dog whenever I need to, but there is a lot I’m also afraid to admit any more openly. Because it’s a terrible feeling when people get scared or overreact to my already-intense emotional experiences.

Yeah, pretty much this.

But it’s also most definitely worse when they don’t seem to even notice or care. When you are depressed you feel truly alone. And it takes great acts of courage to speak out, ask for help, or to connect from that state.

But an incredibly wonderful thing often happens whenever I get plucky (it means “determined courage in the face of difficulties.” I looked it up.) and spill it: instead of hearing the expected “ewwwws” and “ohhhs” and then nervously waiting for someone (literally or figuratively) to hit “un-friend” – something else happens:

People start to call me inspiring. raw. honest. helpful. courageous. brave. ??  To be honest, I’m not totally convinced they’re not bullshitting me. But it’s still really nice. I’m not saying honesty doesn’t have a price – there are some friends who, yes, have actually walked away after gaining deeper insights into my illnesses, but it always leaves me questioning whether these people were actually ever really true friend-material.

 

Thank you for allowing me to share this small piece of my life with you. I admit, I’m struggling today … but I’m also okay. Anyhow, I’m not really sure how to wrap this up. So Imma just leave this here:

I fall, I rise, I make mistakes,

I live, I learn

I’ve been hurt, but I’m alive,

I’m human and I’m not perfect,

But I’m thankful.

 

Now, about that coffee I promised myself …