It is the moment I hear the words “I can’t handle drama” or “I need something uncomplicated” that I cringe, because I’ve never been considered particularly high maintenance to anyone except for the people who start conversations this way.  You see, the term “you throw up red flags” is it’s own monumental crimson banner.  Sometimes it even has floodlights and a little commemorative plaque.  In any case, this goes one or both of two ways.

In the first case I note the need and do my best to keep things laid very free-flowing, but there comes a point where my needs fall by the wayside, because any request on my part is seen as some kind of irrational demand on this person’s life.  I am immediately labelled “High Maintenance”.

In the second case I begin to walk on eggshells, afraid that anything I say or do may be misconstrued as histrionics, until I am so frustrated and exhausted by the who experience that I begin to reach out for anything I can get. This generally makes any previously mentioned “red flags” a self-fulfilling prophecy.

The added complication recently has been the additional condition of “What does Jenn need or want?” wherein not answering makes me a doormat and answering makes me complicated, both actions making me equally unacceptably high maintenance.  Friends, the answer to that question had two very simple conditions to it, and they’re the same as they have ever been.

This all seems like a perfectly good waste of what started as, and has the potential to be, an amazing relationship behind all the overthinking, but I have no other recourse but to step back and see what direction he takes.  I can’t keep worrying about it, nor can I keep throwing energy at something that neither meets my needs nor seems to be doing anything for him.  Do I hope it can be worked out? Of course I do.  Have I given up?  Nope.  But can I force something with someone unwilling to be inconvenienced?  Negative.  To try is a fool’s errand, and too often in love I end up a very frustrated fool.

Oh, and  Mr Too-Complicated?  He’s got a story for me every day about how negative and overly emotional people are making his life difficult, but I had too much going on to be date worthy.  

It has been my experience that people who use this condition are either ill-equipped to deal with emotions, unwilling to accept a situation that might require a little effort, or are prone to exaggeration.  Maybe I need to start taking their “red flags” as stop signs.

Just a thought.

Aloha

Go now….with the flow.

In a recent post I mentioned briefly the adjustments I’ve been making in my relationships to conquer the distance inherently put between me and my partners by my job.  I’ve always held a strong position against long distance relationships.  I rely heavily upon touch and face to face interaction to ground me in a relationship and give me a sense of stability and connection, and I havent never seen that possible in a situation where I don’t see a partner more than once a month, but with the commute I make for my job I’m finding more and more that even my marriage has similarities to a long distance relationship.

At first I fought it.  Adjusting to the commute and unusual schedule was hard enough without taking into account what might be happening at home.  In turn, Hubby sought solace in his tangible life and partners he could reach out to and began to suppress fears that I was on the slow road to leaving him, and our life together far behind.  The next step in the downward spiral was a deep depression caused by feelings that I was gradually being erased from my own family.  I considered leaving.  Unable to voice this feeling properly, I only validated Hubby’s suspicions, and the unraveling began, leaving us both feeling alienated and alone.

The solutions seemed bleak.  We either had to accept that this was our life now or end it, and neither of us was willing to accept either option.  Hubby’s approach was to demand things.  My time.  Phone calls.  All my plans and commitments at home would have to be cancelled to spend time with him.  I felt exhausted, smothered, and stretched too thin, and I lashed out, suddenly understanding why trained tigers might eventually eat their owners.  I felt helpless.

Then something happened.  I started texting him every day.  I didn’t have the hour or five a day he would have liked to have phone calls, and there was nothing I could do about the frequency with which I had to end such conversations abruptly because of my schedule, but he started to realize just now much I think of him when I’m not around.

A transformation began.  He became easier to talk to.  We exhumed inside jokes that had lost their sheen in the midst of our fighting and developed new ones.  Suddenly I felt like there wouldn’t be an exhausting battle every time we spoke, so I started putting him on speaker phone while I readied myself for work.  In short, I got my best friend back.

Other relationships were not so lucky.  After months of not knowing how to fix it, Ralph and I decided we could only survive in each other’s lives as friends.  Other tentative relationships came to similar fates, while the ones that were able to find a way to reconnect in new way thrived.  This.  This is where I began to see where the strength was in myself and in my partners.

Since this experience, each new relationship has been a valuable learning experience in communication and bonding.  Things that are important to me have had to be compromised while new needs have emerged in order to gain the stability I need to be a happy, sane, openly loving wife, partner, and even friend in some cases.  It hasn’t been easy, and at times I feel like these new endeavours are an emotional game of chutes and ladders, but it’s forced me to take  second look and only spend that energy on someone I feel deserves that kind of time and energy.

I’m still not sure what my stance is on long distance relationships.  The impulse is to have more partners to cover the lonely times, but even people I don’t see regularly take the same amount of resources, and I know all too well the effects of polysaturation.  Instead, I’m learning to find what works with each partner, and to give myself some of that energy as well.  We’ll explore that concept a little bit more later.

Aloha

Go now, reconnect.

Last week I had a rather unique opportunity.  Being on call from work, and hoping to go home after my trip, I had packed a new corset and cute little skirt in anticipation of seeing Hubby but with few other plans of the pieces doing anything but weigh down my bag.  Imagine my surprise, however, when Scheduling sends me to none other than the Big Easy itself the Saturday before Mardi Gras.

My original plan was rather conservative.  We’d land at 2200, and I’d go to bed early in order to catch a parade or two the following morning before I had to report for the day’s flights.  Easy enough, right?  Well, Serendipity thought otherwise.

Enter a second flight crew, who had already been in Party Mode from the night before and looking for more, and a rather restless First Officer who took it upon himself to be our overseer for the night.  Not wanting to be the party pooper of the group, and feeling a bit of a reluctance to miss the experience, I acquiesced, and plans were born.

My first indication of how the night would progress should have come when no one questioned why I’d have a steel boned corset emblazoned with skulls and crossbones with me at work, but it was too late to back out, so I rolled with it.

The adventure started before we even got out of the van.  A few of my compatriots had already started drinking, and there was a brief altercation with the driver over his need to stop for gas and inability to drop us off within three blocks of Bourbon Street, which I was apparently the only one who remembered being told earlier in the day. As we poured from his van, the driver less than politely bid us good night and good luck getting a cab back to the hotel that night.

Shaking off the curse, we went about our night, stopping first at a bar with an excellent cover band playing an amazing variety of music and mixed drinks the size of my face, but not before my corset won me the official title of Crew Boob Flasher and a constantly growing collection of plastic beads.  Once at the bar we promptly forgot about anything but dancing, drinking, and anything regarding personal space as we moved like a drunken, sexed up amoeba through a crowd that had already been drunk for hours.  Quite sadistically, the bar also put the women’s bathroom upstairs, while men didn’t even have to leave the dance floor to find their own door, I’m assuming because they would never use it if it took them too much effort to get to it.  Be that as it may, I was reluctant to scale bead coated stairs in the dark just to maneuver my tights out from under my corset, so I pushed the idea of it from my mind, and we were off once more, slightly more lubricated to deal with the spectacle before us.

I have always wanted to see New Orleans.  I still do, but I have to admit the wave of people that carried us involuntarily from one nonconsentual location to the next, stopping us only for the sporadic picture or request for the questionable fair trade of plastic trinkets for tits,  was definitely an experience.We sang and danced in the middle of the street as our ever vigilant FO kept an eye on his flock, less out of altruism and more out of sheer amusement I assume, until at last we found a quiet block and a very quiet corner bar with real fire and softer music.

As it turns out, we were in a gay bar.  Not your flashy more wild type of Tinder trap, but the quite more sophisticated kind where people actually go to talk to one another. Being the only one with any ties to the queer community, I was chosen as our ambassador and sent ahead of the group to the bar where I became a bit of local drunk gaggle legend as I fended off a very drunk old gentleman who asked to see, then tried to touch, the girls, who had given up on being stuffed back into their confines much more than they had to be.

The quiet peace of the bar was contagious, and though we walked a few more blocks we all knew we were starting to wear out.  This is where the real adventure began, as the curse of the taxi driver from what seemed like days prior began to manifest, and even the hotel stopped answering their phones.

Seeing the panic beginning to spread across the faces of my new friends, I calmly suggested we find food and make a game plan.  Having been stranded in strange cities at less self-sufficient times in my life, I was confident we’d think of something better than sleeping in a gutter covered in beads and ejected body fluids of all kinds.  I wasn’t giving up quite yet, we just needed to sit and regroup.  We hadn’t lost anyone yet, and I refused to start.

We ate and took turns on hold with numerous taxi companies before realizing we were just going to have to suck it up and go on a hunt on foot.  Making our way back to the road we’d been dumped on earlier in the night, we quickly realized  that it hadn’t been an empty threat the wretched man had thrown at us; it had been a fact.  It would take hours to get a ride home.

Having the same realization to the situation I was, and presumably not wanting to deal with five hysterical drunk women, the FO shouted to me to keep everyone in one place and bolted across the street and disappeared for the moment before hailing to us to follow to where he stood by the open door of a silver Toyota Celica with a friendly face behind the wheel who introduced himself as Samin, or Sam for short, who our FO had flagged down and bribed to drive us home.

With the tall man riding shotgun, the four other girls climbed in the back, leaving me as the one who would take up too much space on the seat to lie across the laps of the other girls, careful to keep my head down and my wiggling to a minimum.  After being led astray by his GPS, Sam happily delivered us more or less in tact to the front door of our hotel, where he politely bid us all goodnight and went back on his way.

This job has given me so many opportunities, but I tend to take the quiet adventures over the raucous ones these days.  Nights like y introduction to Mardi Gras remind me of nights Hubby and I used to have all the time, and in the end I only wished he were there with me.  Once more, life has reminded me I’m not stagnant yet.  I just have to let the good times roll as they come to me…and keep an extra $50 in my pocket to bribe myself a ride back to a comfortable bed, as my days of voluntarily sleeping in parking lots and sidewalks has definitely passed.

Not dead yet, friends.  In fact….I’m feeling quite alive.

A year and a day ago I threw away my comfort zone and left the security of a position I knew I could keep for a five-week challenge to see if I was fit to be a flight attendant.  I was both exhilarated and terrified, and believe me when I tell you most of the messages I received in the week preceding my departure from my department on the ground were not encouraging.  A lot of people  doubted I would make it, and I almost didn’t go, but it had been something I’d been pushing toward for over 6 years.  I needed to know.

For over a month I navigated the cutthroat environment with my head down and my eyes forward, stepping out and finding non-industry people near our hotel when I needed to breathe.  I studied, I started working out, and I learned through immersion to be completely alone.  Sure, I had a few friends, but they were taking their own journeys respectively.

On graduation day, it was still just me.  Sure, Hubby was waiting for me when i got home with a big hug and a celebratory dinner, but at the moment I was given my first set of wings the only person there with me was the one responsible for getting me through it.  Me.  Quite egregiously, I had assumed that day that the hardest part of my journey was over, but it was just the first step.

For the last year I have learned a lot about life and about myself.  I have learned to be independent and how to speak up for my needs.  There is not a single relationship in my life that has not been touched and reshaped by the experience, but the ones that have survived the transformation have been fortified by a newfound purpose and confidence that I have thing to offer and a right to not settle somewhere I’m unhappy.  I have learned to adapt and be transient.  I have learned to be fluid but firm.  I have learned to be present even when I am flying across the country.

A year ago I was reminded that my life is not stagnant or restricted.  It is not over, and while I have lost certain opportunities I have gained others.  I still have life and love to give., and it’s worth more than I ever could have imagined.

Aloha.

Go now, be invaluable!

It has never been planned this way, but between Yule and Brighid every year the seeds are planted for what will become the focal point of that year.  Last year I interviewed for the opportunity of a lifetime, a flight attendant position with the airline I have worked for for almost a decade. I got my acceptance call on Brighid in the middle of a blizzard.

It has taken nearly a tear for me to adjust to the lifestyle change.  The traveling and the service were easy.  The hard lesson was one of isolation.  Accustomed to the support system around me, I had to learn to get over my own inertia and face the intimidating silence of being alone.

I’ve had to handle my frustration, my sadness, my fear, and even my happiness on my own, and though it’s been one of the most difficult periods of growth I’ve ever faced, it’s given me more faith in myself as a result.  Last week, after a round of cancelled plans, I walked into a poetry slam not knowing a soul and got on stage as a stranger.  Taking up a chair at a table for four was a bit painful, but as the room filled people would sit and chat for a moment or two between poets, and by the time I knew it the night was over.  I had done it.  I had gone out alone.

From that experience came a voice from within echoing a push I’ve felt since the beginning of the year to take some big strides with my creative work.  Now that I feel fulfilled and content with my career and confident in my abilities to hold my dreams in my hands and know what they feel like, I feel inspired to pursue other goals with the same passion.

Passion.  The one thing that has always driven me no atter what held me back.  When I’ve been sick, broke, broken, and desperate.  When I’ve been fallow and lost.  When I’ve been alone.  Passion has always kept me pressing forward, and it is that passion that I find when I call for Brighid this Imbolc.  As her fire burns within me, it fuels the passion that dries me.  Her flame gives heat to my words, movement to my music, and life to my art.  Last year was my year of water and fluidity.  This year is my year of fire.  My year of Passion.

2014. The year that changed everything.  It all sounds very serious, doesn’t it.  Well, it is.  I know, I know, every year is about change, but 2014 brought transformative change.

With Brighid came the catalyst for the biggest career change I have ever made, and the biggest risk.  The training alone was a challenge, but I rose to it, and on Ostara I earned my wings and held a star I’d been reaching for for 6 years.

WIth the change in jobs came a huge change for our household.  I was based 3,000 miles away on the opposite coast, and the adjustment in all my relationships was a blow that some of them wouldn’t survive.  Routines were uprooted, and we had to find complex solutions to even more complex problems.  I suddenly felt very alone, and Hubby felt abandoned.  As he strove for stability and reached for his other partners, I felt more and more isolated from my family, which strained an already stressful period as I adjusted to a new job that is very much a lifestyle.

By summer there were storms raging.  Hubby and A split, I had completely pulled out of our D/s dynamic, and there were talks of separation. Things were seriously strained, compounded by the re-emergence of The Vanishing Act.  My emotions were shot, and I withdrew.  When my birthday rolled through in August I was sure I was bound to be moving on alone.  Hubby seemed unwilling to see anything from my perspective and immersed in a new relationship, The Vanishing Act had done what he does best, and I felt suffocated by the weight of everything falling apart at once.

For the first time in a long time I felt helpless, hopeless, and ready to go.  There’s a soul-shaking moment that passes when you no longer feel a desperate need to end your life, but have accepted it as the next step.  It’s not a rash decision you can recover from just as quickly, it’s a concession that the darkness has won, and this is just what happens when you lose.  I was gone.  My spirit was dead for a long time, and I had no one to blame for it but myself.

Enter Autumn and a big push from the universe to be in charge of my life.  I embarked on a last-ditch effort to save myself, and I began living my own life.  Hubby pushed against it, but what resulted was both of us giving the ultimate ultimatum.  Love me for who I am, or let me go live my life.

The season also brought a whole crew of new people to my life.  Friends, love interests, and everyone in between.  2014 has brought me more new connections and strengthened connections with people I already had than I could have asked for.  These wonderful souls are the reason I’m here in as close to one piece as I am.  They are my tribe, my Ohana, and I would be incomplete without them.

As I pulled out of the fall with hope and optimism, 2014 gave me one last reminder that there is still a lot of work to do. A few lives connected to mine were suddenly torn apart.  We had medical scares and heartbreaking developments.  In addition, several of my partners also had some deep rivers to cross.  Once again I felt out of my depth and drowning, but the tools I had acquired and the people who had gathered around me throughout the year had given me the strength and will to keep moving forward.

Things are still rocky.  Things are still changing.  2014 was a year of questions without answer and answers spawning new questions.  I still feel terribly ill-equipped to handle the war that fights, not in violent flashes like they do in the movies, but quietly under the surface of the mundane as war is apt to do.  I don’t have all the information.  I don’t have all the tools.  I don’t have all the magic words.  What I do have is Ohana.  What I do have is people who love me and believe in me, who have y back no matter what happens.    What I have, as i mentioned at Yule, is hope.

This year I have learned to adapt.  I have learned to be away but still present.  I have learned to be alone but not lost.  I have learned to love and not question.  At midnight tonight I won’t be with any of my loves.  I won’t have a single person to kiss, but I shall be kissing each and every one of them in my heart.

2015…a year started with hope in my heart.

Aloha.

Go now, kiss somebody at midnight, even if it’s just in your heart.

This year has been rough, for many of us.  I don’t mean ” I stubbed my toe and had to get a pretty serious ingrown toenail removed” rough; I mean “my soul got ripped from my very core and turned into mashed potatoes and taken to some sinister potluck in Hell, and  had to go find it and figure out how to make it a soul again” rough.  You may have noticed a lot of radio silence this year, as I’ve spent a lot of time inside myself trying to sort out what I wanted it to look like.  What better time to remodel than after a pack of demons has rampaged through your inner temple and torn it to shreds from the inside out.  Ok, maybe that’s a bit histrionic, but that’s what it felt like most of the time.

At Yule we are prompted to give up what no longer serves us, what harms us, and what stands in our way.  We keen, we burn, we eschew what we can no longer afford to hold in our lives.  People, things, sentiments, everything must go!  As we say goodbye to this darkness within we invite the new light that grows with the seasons.  We accept the sunlight into us to shine bright with hope and renewal, and we celebrate that we have survived the longest nights.

This year I have enough friends who have opted out of the holidays to feel it in my heart.  Some have lost loved ones.  Others are having health or financial hardships.  Still others have just become jaded for their own personal reasons.  This is not a new phenomenon, but it has been a bit more pervasive this year, but it always reminds me of my own holiday spirit and the lessons that come to be from the holidays.  I’ve told this story before, but it bears repeating, so excuse me while I wax a little Hallmark Special on you all.

My mom loved Christmas.  Every year, without fail, we had the tree that almost grazed our high ceilings covered in lights and ornaments.  We had garland, worn from years of use, strung around the beams and banisters and enough light up animatronic scenes and characters to confuse the cats enough not to touch any of them.  Some years the nativity scene would be almost buried in presents, but some years it would not, but I hardly noticed.

The warmth and joy that filled our house was tangible, and it instilled in me a Christmas Spirit that goes far beyond commercial messages or expectations we place on ourselves, beyond the stress and the worry, and beyond all the jaded skepticism and religious bickering I see every day on the internet or the news.  No, this Spirit is about love and togetherness.  The memories we made decorating the tree have outlasted any gift I’ve ever been given.  The snuggling on the couch watching Prancer and Miracle on 34th St is something I can still feel when I miss my mom around this time.  The love I felt at Christmas just from the time we spent as a family is something I’ve carried with me and tried to emulate in my own family during the holidays no matter what our situation might be.

Here’s a story I have not yet told:

The second Christmas Hubby and I spent together was a bit bleak.  We were i our first apartment together.  I had just started having fibro issues and hadn’t worked much.  All I wanted was a tree.  The fake one my father in law had given us was in storage, and it was locked up until the 1st of the year because we were behind on our rent.  Hubby’s grandparents had just replaced their tree, so they had an extra, which they offered to us.  It was bigger than the space we had for it, and it shed like a nervous chinchilla.  After an hour of measuring and furniture scooting I gave up.  I was sad, but we had tried.  Hubby, on the other hand, was not going to let me concede to a fake pine tree so easily.

I watched the wheels turn as he surveyed our kitchen and dining area, then we put the resulting plan to work.  What we ended up with was a quarter of a tree.  We had stood the base of the tree against the wall behind our kitchen table and only used the branches for the top three sides we could see.  It was a bit of a stretch, but we decorated the hell out of that little patch of tree, and we laughed and sang the entire time. I knew then that there would never be a dark Christmas at our house even in the worst times.  There have been years that have tested us, but we have managed to find ways to make every one special.

The point?  I’m getting to it.

The point is that Yule isn’t about eradicating the darkness, it’s about finding hope and joy in the light. It’s the stars and moon at night, just as we must also embrace the shows and shade in the daytime.  It’s about approach and soul building.  When I eventually found my soul, it wasn’t really any different than it had been before.  I merely had to scrape off a layer of negativity, pick out some things that made it seem spoiled, and put it back where it belongs.  The darkness didn’t ruin it, and the light didn’t do anything but show me what was already there.

This year has been rough, and we weren’t sure we’d be able to even afford gifts for the kids.   When I left work with a flight bag full of small handmade gifts I never imagined I wouldn’t make it all the way home, but a few days later I returned to California feeling deflated.  I hadn’t even send cards.  We just hadn’t had the money.

I put everything in a box and sent it to Hubby and his girlfriend hoping it would at least make him smile for Christmas.  The rest I carried with me on trips I picked up for the time I was supposed to be home.  The cards, I sent.  I figured that was the end of it.  Then I saw the smiles on the faces of people I saw on my trips and the happy Facebook messages from people who were surprised by my cards.  I heard Hubby and Mouse’s voices when they called me after opening their gifts on Yule, and they were so full of joy that, while I was still homesick, my spirit was renewed.

Yesterday as I placed a blue and while Yule/Christmas bouquet at my mom’s headstone, full of her favorite flowers, I caught the scent of pine that rose from it and was immediately reminded that I get to spend the holidays with family I haven’t seen on Christmas in many years, that I have been able to spend the better part of this year with people who are no longer with us and that I have been able to be a part of the lives of the children in our family again.

This was my first home, and it remains a very special part of me and my Christmas heritage. When I got back to y room I set up an impromptu alter, some festive things my grandma had left as a surprise for me, and the cards Hubby had brought me on a surprise overnight visit, and my heart was immediately lighter.

Light.  There it is.

Light of hope.  This doesn’t mean suddenly everything is better.  This doesn’t mean all the injuries we’ve sustained this year are gone.  This means there is hope.  This means a light has been shed on our strength and our resilience.  This means a light has been shed on those around us who love us, so we know we’re not in this alone.  That light means guidance and a promise that if we are growing we are alive.

Light.  Light reminds us that there is more than darkness.  The fact that we recognize darkness is, in part, due to the very light we hail, as we are reminded when we speak to balance.

Aloha, Light.  Aloha, Darkness. Aloha Christmas.

Go now, be joyous.

I took on an extremely ambitious piece of writing this year for NaNoWriMo.  After having to stop just short of my goal the first year due to a broken arm Thanksgiving Weekend and finishing with a product coherent enough to be in the editing process now, this year I took on an extremely heavy task.  Half fiction, half non-fiction, the piece chronicled the rocky path of a crumbling marriage in a woman’s mind during her final moments. For those of you who don’t know, my marriage has been a little stressed recently as Hubby and I inventory our issues like LEGOs in attempt to put them back together in a way that works for us both, so taking on this project wa extremely personal and a bit harshly timed.  I made it to almost 12,000 words before the emotional weight made it impossible to keep going, but I don’t consider this experiment a complete loss.

For one thing, what I have so far is an amazing piece.  I have been adding to it here and there when I can, and when I have the time and energy to put the entire puzzle back together, I believe it will be a beautiful mosaic of words and emotions.  I believe in this project, or I wouldn’t have taken it on the way I did.

Next, it was amazing therapy in some ways and an amazing awakening in others.  It allowed me to get words out that I felt lost trying to express before, which meant I was able to keep a logical calm tone when dealing with Hubby in emotionally charged situations.  It allowed me somewhere to put the often irrational feelings and insecurities that are mine to deal with, things that often cloud our ability to fix the shared problems.  It allowed me a story board to map out my experience throughout this marriage and showed me where my own behaviour and thinking may have been the problem without a tone of blame or guilt to get in the way of resolution.

Finally, it reminded me of what I have to fight for, everything we have already fought through, and the strength we have when we fight together for something not against each other.  Killing a marriage that didn’t exist helped me see the ways to save the one that does.

So, no, I don’t get the fancy winner badge, which is a shame, because I loved the graphics NaNoWriMo used this year.  However, I don’t consider this a loss.  Sometimes you need to both something to be able to think outside the box a little.  Sometimes you need to fall to change your perspective.

Thank you , NaNoWriMo.  I’ll see you next year!

 

Windows-Live-Writer-SAE-Day_DA78-11

Today is World Diabetes Awareness Day, so I thought I’d share my story.  When I was a kid it was “a shame” because I was “so young”.  As I grew older it was less tragic and more inconvenient.  Diabetes had become so widespread by the time I was an adult that it was not only common but relegated to “nuisance” status by those who had never encountered it firsthand. When I wasn’t being lectured about my diet and lifestyle choices I was being sold ridiculous ideas about treatments and cures that would eliminate my dependency on insulin, from fad diets to a very specific routine that involved drinking hydrogen peroxide.  Diabetes became an urban legend that crept into as many conversations as it could.  Everyone had an aunt or a friend who had diabetes “real bad” and suffered immeasurably because of their own sad shortcomings.  Everybody knew somebody, but nobody really knew much about Diabetes itself.  I’m not here to educate.  Most people who actually want to know anything about this disease will do some reading.  It’s out there.  I’m here to tell you what they don’t tell you in books.  What happens to your life while Diabetes is doing what it does to your body.

By the time I was diagnosed at age 9 my mom had been a diabetic for over 15 years.  As a kid she was given a pretty short expiration date, and how we dealt with diabetes in children was dismal and rare.  We knew very few details about how blood sugar and body chemistry worked and even less about how systems in the body interact.  We were shooting blind, and we were losing.   My mom lost her sight just before I was born, and people had the nerve to condemn her for keeping the pregnancy that would do such a thing.  Instead of giving up, she persevered.  She learned braille, learned to take care of a newborn, and would eventually go one to be an advocate for people with disabilities and an education facilitator for other blind people.

For me there were few options when it came to routine, but my Diabetes was much different from my mother’s Diabetes.  We were beginning to count carbs and categorize food.  We knew that there were things other than food and exercise that affected one’s blood sugar, we just didn’t yet have a system for managing Diabetes that took into account a child’s changing body, other conditions, or fluctuating schedule.  Instead we were heavily restricted and chastised for not being perfectly regimented.  I went to camp for a few summers, but I came home in almost worse shape than I was beforehand.  I made some good friends, but they all seemed to be getting it, and I just wasn’t.  Around the time I began to take a dedicated interest in my own health I was patronized and treated like I was stupid, so I stopped caring for a long time.  If no one was going to help me I certainly wasn’t going to waste any more effort with something that wasn’t working.

Right before my thirteenth birthday my mom died of complications from her Diabetes.  The curse that had loomed over her since childhood had given her twice as long as she’d been promised.  For me it meant the one person who understood my frustration when I felt like I just couldn’t get it right was gone, and my teenage year were full of doctors and educators and adults telling me why they thought I was failing.  I was lectured instead of taught.  I was reprimanded instead of being listened to.  I felt like giving up.   To this day I will walk out of a doctor’s office and never return the moment my mother’s life and death is used to scare me to health.  Did I see what it did to her?  Of course I did.  Does it help to hold it in my face like a death sentence?  Never, and I won’t tolerate it.

By the time I left for college I was floundering.  I had researched newer insulins and better routines, but my medical team refused.  My driving privileges had been revoked because that same team told the California DMV that I showed nothing but disregard for my own health and safety, and to this day I don’t have a driver’s license.  Then I lost my health insurance.  Say what you want about the Affordable Care Act, but I know what it’s like to dodge colds like the plague hoping you don’t end up in the hospital.  I know what it’s like to get insulin in the mail.  I know what it’s like to consider every ridiculous idea that comes to you, because I couldn’t even pay for my own health insurance with a pre-existing condition and the state wouldn’t give me any unless I was homeless and pregnant.

I was lucky to find a job with reasonable health care benefits.  I was even more lucky to finally find an endocrinologist who would listen and work with me.  Because of her I learned about inflammatory disorders, autoimmune issues, and insulin resistance.  Because of her I found something that made me feel like maybe I wasn’t just waiting to die.

When I met my husband he had an insulin pump but little else by way of education.  Having been diagnosed as an adult, he had been forced to put himself int he hospital before his doctors would even consider the idea that he might need insulin, a pretty common situation adults with Type 1 find themselves stuck in.    In helping him I began to re-educate myself, and therein started my pump journey.  It hasn’t made me perfect, but it has enriched my life exponentially.  A few years later I would add a CGM, and it’s like a whole new life.

About six years ago my stepson, who was 2 at the time, was diagnosed, and his Diabetes gives me hope that he won’t have the childhood I did.  While it won’t be easy for him, we have tried to make it just another thing that he does, not something he HAS to do that will breed resentment.  While I know he will have his phases, his ups and downs, and his failures, we are trying to instill in him an open dialogue atmosphere as two adults who know what it’s like to try your hardest and still have a bad day or not try your hardest because you’re human and pull yourself back from it.

 

So here’s what the books don’t tell you about Diabetes:

1. Diabetes doesn’t ever come alone.  It comes with a litany of other autoimmune and inflammatory diseases.  Your blood sugar affects anything from your muscles to brain chemistry.  Diabetics are prone to depression, vitamin deficiency, fibromyalgia, JRA, thyroid disease, heart disease, eye disease…you get the picture.  We are constantly watching, constantly wondering, and constantly being brushed off by the medical world, because everything wrong with us is attributed to diabetes.  Everything.
2.  Diabetes never takes a day off.  This should seem very obvious, but it’s not.  There are some days you just don’t feel like counting as closely or planning the next 4,000 steps of your day.  Much like a “cheating on my diet day” there are some days where you just accept that you’re going to feel like crap tomorrow and go to the Chinese Buffet.  Believe it or not, it’s ok to be human.
3.Disclosure about Diabetes can sometimes be worse than coming out as queer.  Believe me.  I’d rather explain my girlfriend sometimes than my insulin pump.
4.  Diabetes is expensive, even with prescription coverage.   Co-pays, vitamins, and testing and pump supplies, even at 80%, are very expensive.
5.  Diabetes means a lot of math and psychic ability.  Seriously.
6.  No one knows.  Let me repeat that: No one knows.  I could have all the complications.  I could have none of the complications.  I could have them completely aside from Diabetes.  Things could be related that haven’t even been linked yet.  No one knows, and I refuse to live my life concerned about hypotheses.
SO, today is Diabetes Awareness day.  I don’t think there’s anyone who can read this who isn’t aware that Diabetes exists, but sometimes that awareness comes in the form of an obsolete pamphlet written in 1989.  Hell, my work manual still uses the phrase “insulin reaction” to describe hypoglycemia.  As we’ve picked up the cause for more fashionable diseases, Diabetes has become old hat to those who don’t live it every day, but it’s still costing us.  It cost me my mother.  It could someday cost me my husband and the only child I have, because it’s already cost me much hope of having children of my own.  It cost me the freedom of a license for many years and the peace of mind to know I can change careers or start my own business.  It cost my husband his military career.  It cost my mom her sight and a huge chunk of her life.  These are things no amount of logs or checkups can bring back.
Diabetes Awareness Day….for me it’s every day, but it’s no longer the Diabetes that it was 21 years ago.  My hope for my stepson grows stronger every day, but it is defendant on us not forgetting that these forward steps don’t mean we’re on the easy road yet.  We’ve still got a journey ahead of us.  We’ve still got stories to tell.
Go now, eat the pie…..then bolus.
Aloha.

 

It was June, 2001, and it was the first time I had ever felt strong, independent, and capable.  Not that my family hadn’t encouraged me to explore my personality.  For the better part of seventeen years they had patiently supported my every weird, geeky, alternative, freakish whim, at least the ones I felt comfortable enough to speak about.  Here, though, in downtown Nashville, was the first time I was given the reigns of those whims, and I was using it to wander aimlessly.  My clothes were way too black and way too hot for June in Tennessee.  My self-confidence was an illusion, and my body image issues had no concern for the fact that I might die of heat stroke if I ventured out of my comfort zone of body cloaking drapes.  I was, to sum it up, awkward.

I’ve told the story of what came next a few times.  I met a boy and his tribe.  I made friends with a group of Rainbow Gathering kids and street gypsies, and the experience changed my life and how I would choose to live and love for the rest of it.  I would find the courage to follow my heart.

Don’t worry, I’m not telling that story again; I’m honouring the woman who made it possible.

Mrs Judith Flannery.  Mrs Flannery throughout my high school career.  Judy thereafter.

Mrs Flannery was my college counselor, and her presence lit up Holy Names High School like a Christmas tree.  She was always smiling, always encouraging, and always finding new ways to inspire the swarms of girls that filled the halls of the nook of a school perched in the Oakland Hills.  To our class in particular, she was the embodiment of Spirit, and even on my darkest days I couldn’t help but smile when she spoke to me.

My senior year a close friend and I convinced Mrs Flannery to agree to be the voice of reason and eyes of supervision on a trip to a week-long country music festival in Nashville.  To our astonishment, she agreed.  Not only did she agree, but she got excited!  It was settled.  We got our parental permission and made our plans, and a week after graduation we boarded a plane to Nashville.

I was slightly startled when Mrs Flannery suggested that first day that we each explore for a while in whatever way we wished before meeting for dinner.  This was how “adults” took vacation, and I had never been an “adult” on a vacation.  Where would I go?  What would I do?

Then it dawned on me.  Anything I wanted.

The introvert in me smiled to herself.  The latent explorer in me leapt with joy.  We were free!

At dinner I told Judy about my encounter with the cute street kid selling hot dogs in the parking lot, fully expecting a lecture or tighter reins.  Instead, her response was, “Well, why don’t you go?  You have a room key.  Just call me if you’re not going to be there when I wake up.”

Really?  I had never been trusted not to get myself killed in my life!  In retrospect, I may not have been proving that by following a group of strangers around Nashville at all hours of the night, but I returned unscathed each and every time, so Judy continued to encourage my little tryst in Music City.  She even looked the other way when they snuck into one of the concerts we attended.  They were charming.  Even Judy was enchanted, or at least tolerant enough to act like it.

The day we left Nashville I trekked downtown alone to say my goodbyes.  The trip home was quiet and bittersweet, and even I had no idea what I was carrying back with me that day.  A sense of purpose.  A sense of self.  A confidence.  An awakened heart and spirit.  Judy didn’t need to.  She never asked.  She simply sat next to me at the airport and hugged me for as long as it took for me not to feel lost.  As she had done for the previous 4 years, she made everything seem like something I would not only survive, but really live through.

We kept in sporadic touch over the years.  Facebook can be a blessing that way.  I was always happy to tell Judy how my life was going, and she always had some words of support or wisdom and a bright, cheery story to tell me.  I know things weren’t always sunshine and flower in Judy’s world, but you would never know it.  It was inspiring.

I write this today because the friend with whom I took that trip informed me last week that Judy had passed away.

Before I could message back, she added, “the first thing I thought about was our trip to Nashville”.

I was touched with an unexpected sadness, but overwhelmed by the feeling of how blessed I was to have known Judy and how grateful I am that she was a part of my life.  Without her, who knows how I would have been introduced to my soul.

Thank you, Judy.  From the bottom of my inspired, free, open heart.

Aloha.

 

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