Tuesday, July 29, 2014


The worst part of letting go is knowing all of the tiny details you will be leaving behind.   The knowing looks. The inside jokes. The petty squabbles that turned into hug sessions. The easy hours that stretched across into days.  The knowledge of a curl at the base of their skull and how they sort of flick their feet in sleep.  And how you can induce a sleeping spooning session with just a bit of body pressure in the right places and then settle into comfort and safety.

But when someone changes, fully disengages, it's as though you are alone, the last one standing in the room after even the main character has left.


Monday, July 28, 2014

On Letting Go

It's like performing heart surgery on yourself.

The Silent Treatment

For those of you who employ the silent treatment as a punitive way to address a conflict, think about this: you will KILL your relationships by shutting people out / down.

If you need some time to regroup, cool off, or simply step away, just say it. Unless they are batshitinsane [another problem, altogether], the other party will understand and give you your needed space which will likely accelerate your personal process. And it will increase their sense of trust in you.

Win - Win.

Praying For Rain

Thunderstorms are predicted here today, tonight, and tomorrow.  It's unlikely because they are so unusual, but I pray that they come because what I want right now is a real downpour so that I can have a Seattle moment where I can stand in the rain and simply weep, not knowing what is rain and what are tears.

This is soothing in the interim.

Friday, July 25, 2014

There's the seizure

...and then there are the complications.  If it's a gran mal, you just "go away" and wake up sore, exhausted, and kind of daffy.  If it's a breakthough seizure [my current specialty], you are very aware of it, but weak and very shaky. What's truly a bitch, though, is the vomiting and level 8 headache. Not being able to keep food lengthens the period of episodes and vomiting makes it hard to keep either food or medication down.

Additionally, I have been entirely unsuccessful at handling the the "refeeding syndrome".  Regardless of how much I try, it's just not working.

It's truly a FML kind of evil at the moment.

Tuesday, July 22, 2014

Getting over "The Hump"

When you and your body relax after an extended exposure to stress, a few things happen.  Often, you get sick.  Not bad sick, just a summer cold, mild fever sort of sick. Phlemy chest, few hours of nap here and there sick. It's simply your body recovering and regrouping. You do sleep a lot [between naps.] You think a lot. A few days looking at clouds.  A few days sipping tea.

Then on with business!

Monday, July 21, 2014

Jonathan Carroll

My very good friend, Smoochie, suggested that this might be my pen name and personal description.  It's not at all far from the truth.

"Some moment happens in your life that you say yes right up to the roots of your hair, that makes it worth having been born just to have happen. Laughing with somebody till the tears run down your cheeks. Waking up to the first snow. Being in bed with somebody you love... Whether you thank God for such a moment or thank your lucky stars, it is a moment that is trying to open up your whole life. If you turn your back on such a moment and hurry along to business as usual, it may lose you the ball game. If you throw your arms around such a moment and hug it like crazy, it may save your soul."

- Frederick Buechner

Sunday, July 20, 2014

Ode to B: When a FrisbeeGirl falls in love

Days pass like minutes.
He spoons her and she spider monkey wraps herself around him with his big man paw gently holding her hip or knee.

He asks her to skip a song 'cuz he thinks it is too repetitious or plain does not like it. It's no big thing. Song skipped.
He catches her when she walks "drunk" because she accidentally double dosed on her seizure meds. She's thankful.
She falls asleep a LOT because this is TBI recovery mode.  She asks why he let her sleep and he keeps saying, "Because you looked so peaceful." She snuggles.
There are not enough minutes in a lifetime to cuddle and kiss fingertips.


It is going to turn me even more silver than I am, but I want this direction.

Why? Because when you work so hard for something that you truly believe in, a kind of cells to bones belief kicks in.  As it resolves, your chest opens up, your shoulders drop, your jaw unclenches, you get ready to keep digging deep in a good way...now, not only for yourself, but for everyone you know and will know.

Saturday, July 19, 2014

The Open Hand

A lesson that I learn every day is how to love with an open hand.  By this, I mean being willing to let someone wander their through life and the world, but remaining the kind of person and place to which they will want to return on the terms that make them comfortable.

It sounds altruistic or even self deprecating, but I think not.  This is how we teach each other because loving ourselves actively and making that space open to others is one way that others learn to do the same.  When you responsibly handle your own environment by quietly defining your boundaries, you can be a space of joy without giving yourself up.  I suppose it's also known as unconditional love.  [I just like to use more words.]

I really seriously want some banana pancakes now.
..consumed in a multiperson hammock.

Friday, July 18, 2014


I'm not quite ready to switch medications, because, overall, Keppra works well for me when I can adequately manage my stress levels.

What it doesn't do is mitigate the synesthesia.  Again, brains are very unique.  My synesthesia is exceptionally sensory based.  Sounds and thoughts are often colors, shapes, and flavors.  If I am not paying attention to what I am writing, for example [I can type by touch], I have to back up and translate the thoughts as though I had been speaking in a foreign tongue.  It's equally wonderful and exhausting.  It's also tough because it makes going, even to a cafe or restaurant something of a challenge as the sensory input can be absolutely overwhelming. 

This is an amazing thing about being with Ben: he is open to my quiet.  He will let me absently contemplate, by sight or gentle stroke, his hand for lengths of time and never feel the need for empty conversation.  My shoulders relax and my chest opens up.

I used to listen to music 24/7, but I don't now.  I'm quite judicious not because I don't like it but because all of those songs are already playing in my head.  It's a kind of constant soundtrack that never ends and adding another layer is true sensory overload.

When I lived in Portland, OR, I worked in a jazz club.  Jazz every night. So many amazing moments.  I'm a tad bit scared to go back to the jazz scene now. [FTR, I begged my mother to take me to the Mt. Hood Festival of Jazz when I was 10 - this is a lifelong love.]  There are moments of inspiration and exhilaration, when magic just happens.  It's electric.  You can see it on the musician's faces as they bounce musical ideas off of each other.  I remember looking around the restaurant and people would be paused, sometimes holding their forks on the way to their mouths, caught in that singular moment.  I wonder what it would be like now.  I wonder what I would see, taste, and feel if immersed in it again.  Would I seize or feel flow and freedom?

As always, life is a funny thing.

Thursday, July 17, 2014

To everyone I love

Because of you, I can be brave and I can be strong.

For every hand that's held mine [virtually or IRL], every laugh you drew out of me, every shoulder offered, every hug given, every silence honored, every share shared, every "Seriously?" eyebrow cocked look exchanged, every version of compassion and acceptance offered.   For everything, thank you so very, very much.

My heart swells to bursting [in a good way.]  I can only hope to repay the favor.

Wednesday, July 16, 2014

"Passenger Seat"

There is a stretch of I-5 between Bellingham and Vancouver, BC that offers a wonderful assault on the senses of pine and mountain and sea. And if you are lucky, also an incredible moonrise. When I waited tables and bartended in Seattle, we'd often take impromptu trips to V, BC [not unlike our midnight trips to the coast when I was in Newberg in highschool] and go through this stretch late at night.  A potent time.

I don't know where Mr. Gibbard was when this song came into being, but I cannot hear it and not feel those mountains, the amazingly powerful smell of the evergreens and low tide minerality, and the mesmerizing undulation of the highway through the pass.



It's interesting how a single, dismissive word can be so very hurtful.

Tuesday, July 15, 2014


He told me once that he felt hurt that he thought I did not think that I felt he was worth fighting for. I worked hard and fought for years.

Tables have been turned.  Favors have not.  Life really can be a neverending bitch.


Seems that favors may have been returned. Still, language can be heartbreaking and life is still a neverending bitch when she chooses to be.

And such is life and the way of things.


It takes a robust soul to say "Yes!" and plow on despite the knowledge of the possible consequences. 

A robust soul, indeed.

There are few things

...other than finding out how badly you have let someone down.  I will now sleep for a long time in an attempt to stay balanced.

"Listen. Love. Repeat."

A beautiful entry from a beautiful blog. 

As I noted on FB, I especially like "Listen. Love. Repeat."  Something that I think is applicable in almost every aspect of life.

Except mosquitoes. Definitely not mosquitoes.

Monday, July 14, 2014

[Not so] suddenly, everything has changed

While actually, some of the changes were quite sudden, I never for a moment imagined that over 370 days would pass without my being actively employed.  I spent hundreds of hours pursuing opportunities, that sadly often ended up being sales positions, and a few that were so disorganized and frantic that the fact that they were in Ops made them even scarier.

With the wheels turning and my advocates and adjudicators moving things along, I've been able to relax a bit.  Not Maui relax, but dial down rolling anxiety / panic attack relax. It's still a frustrating and lengthy process, but *is* a process and I've stopped going fetal while developing new ways to stay organized [great for those synapses, poor things!] as well as actively manage medical conditions and agencies, while taking copious notes and retelling my story to the point where I can anticipate the questions before they arise.  It's a great deal of work, but, in reality, isn't life overall a great deal of work?  Even after a scorched earth experience, you dust yourself off and get up and do it again, even when that may mean a change of plans and a bit of rest.

When that dust does finally settle, I'm looking forward to the next step of physically and occupationally rehabing as things truly do change after TBIs and there is a LOT to both learn and  relearn.  I look forward to finding out exactly what I can handle professionally, and reintroducing myself to life in a job sector with a new brain and body that doesn't always do what I want it to do.  I look forward to the new challenges, but not the FiDi challenges of who closes this deal faster and more cheaply.  No more anxiety sweating discussions of ROI or CBA.

I look forward to the terrifying challenges of climbing the rickety steps of Twin Peaks with Ben and the fistpump of having walked two miles to the grocer and back, carrying back 20 pounds of goodness with zero assistance.  Someday, it will be four, and then, eight.  Yoga / pilates for balance and the treadmill [oh, how I love the treadmill!] for endurance and conditioning in a controlled environment.

Now that I am settling in, what I do like about approaching 400 days off is the quiet of waking at 3:30 and not having to answer tens of desperate emails, fight, or mask the noise of the world in order to think and to process NOW.  Ben, a bit of a wilderness guy by choice, was actually impressed at how well I knew my household's routines and neighborhood ebbs and flows.  This, I think, is what happens when you have time to be present and pay attention.  I'm not sure that I'm ready to return to an ever present 24 / 7 available clock for anyone but those dearest to me. 

[Though, floor two, you claim to be college educated.  Why you cannot grasp the physics of doors, windows, and walls is truly beyond me...and, yes, I noticed it even when I was employed and out of the house for 18 hours a day.  The 10PM to 3AM slamming, shutting, aggressive re-opening, re-closing, and drunken cooking that triggers fire alarms does get old and makes me question the validity of your diploma / degree / certification.  Can't you just go to Carl's Jr, eat it on MUNI, and then pass out in bed, half clothed?  Or fully clothed, for that matter!  It would be a favor to us all. Keep a bucket by your bed, BTW. You will never figure out how to use the door or wall or window quickly enough in any state of inebriation with which you actively punish the house.  Just handle your purge later when you are moderately sober and can clean up properly.  Not meant to sound bitter, but that is a bit of a circus down there.  Nearly every night.]

OTOH, what I do know is that being in that crazy school of anchovy competition is something that I do not miss, but perhaps that is something that each person has to go through in order to learn.


Here's to new days and new adventures.

Friday, July 11, 2014

This week

My medic alert bracelet arrived.  Deep breath sucked in. Relax, now they know what there is to handle [and now I've accepted this issue as my dance partner.  And we will dance, muthafucka, trust me.]

My super thick [because I'm still super wobbly and can break and do bruise like crazy] yoga mat arrived. Deep breath taken again. Grow strong again. And again.

My paperwork and constant appointments met. Deep breath exhaled. Step forward.

Fears, frustration, and sadness shared. Breathe in and out slowly. Love experienced. Continue.

Now, climb.

Wednesday, July 09, 2014

Moving forward and moving backward

One tiny woman against everything.  I honestly swear that I will move forward with everything I've learned to challenge and everything that I will come to know and I do have more than a bit of learnin' to do yet.   :)

Good days ahead, though!

I have had to rework this post entirely. 

A] because I had accidentally double dosed on my Keppra when I wrote the initial post.  The result is that it makes me like a drunk kitten.

B] there was more to it than I was able to stay awake and convey.

C] there's this really beautiful song [the video portrays a wonderful couple - though I am not lesbian, they are incredible.]  See it here.  It sings in my soul of a beauty and impermanence of life.  I suppose it should hurt, but it doesn't.  I just keep realizing how lucky I am to have experienced this singular moment.

I don't always have the words.  Some days, I just have to relax and let it wash through me and quit fighting, quit resisting.  And then it's ok in its own special way.

"Let's love fully
Let's love loud

Let's love now"

Tuesday, July 08, 2014

Blowing things up

I have never ever lived in a city / region that loves to use any excuse to blow sh*t up like the Bay Area does. Between the World Cup and the 4th of July, this town has and will sound like a war zone for the better part of a month and then some.  What I mean by this is car alarms constantly going off and dogs have barked themselves almost hoarse in end of the world terror.  [Owners, please consider sedatives. Please.]

We lost? LET'S BLOW SH*T UP!
Tomorrow is the day before the 4th of July? LET'S BLOW SH*T UP!
Today is the 4th of July? Hell yeah, LET'S BLOW SH*T UP!
It's the weekend after the 4th of July? LET'S BLOW SH*T UP!

I'm not against it and not being judgmental, but it never ceases to amaze me how what are actually signifiers of war and aggressive action are somehow celebrated and embraced as demonstrations of freedom, peace, and joy without a thought toward the fact that explosives and the explosions that seem so pretty from a ball field or a backyard are the same type of explosives that are commemorative of the weapons exchanges that have otherwise cost people their limbs, their lives, or loss of the loved ones to those who simply wanted them to come home, while the explosions looked just as spectacular.  It remains a grey area of which I have not yet made peace with.  Yes, pun intended.

But, yeah, LET'S BLOW SH*T UP!!! Right?

I really wish I could've gone back East this year [TS Arthur notwithstanding] to meet family that I've never known existed. Or up North, to my family of choice. Mainly, though, I wish I could stretch out on the grass in the humid evening air, soaking in the quiet as I watch the fireflies do their dance, briefly alighting on me [obviously not so much in the PNW, but you get my drift], while listening to my family and friends laugh, smelling a good barbeque, drinking a good beer and feeling so much quiet gratitude.

With no explosions.

I didn't get to. Not this year. But a girl can always dream.

Sunday, July 06, 2014

One for the ages

Admittedly, it has appeared on this blog before, but not only does it remain relevant, I won't explain it [though it has nothing to do with romantic relationships or drama.] If the equations are a bit misty, Google is always your friend.

If you're brave, sit back and do the math. Extrapolate.  Just give it a think.

I hope you smile.

"Av for velocity, delta for change. In space this is the measure of the change in velocity required to get from one place to another - thus, a measure of the energy required to do it.

Everything is moving already. But to get something from the (moving) surface of the Earth into orbit around it requires a minimum Av of ten kilometers per second; to leave Earth's orbit and fly to Mars requires a minimum Av of 3.6 kilometers per second; and to orbit Mars and land on it requires a Av of about one kilometer per second. The hardest part is leaving Earth behind, for that is by far the deepest gravity well involved. Climbing up that steep curve of spacetime takes tremendous force, shifting the direction of an enormous inertia.

History too has an inertia. In the four dimensions of spacetime, particles (or events) have directionality; mathematicians, trying to show this, draw what they call "world lines" on graphs. In human affairs, individual world lines form a thick tangle, curling out of the darkness of prehistory and stretching through time: a cable the size of Earth itself, spiraling around the sun on a long curved course. That cable of tangled world lines is history. Seeing where it has been, it is clear where it is going - it is a matter of simple extrapolation. For what kind of Av would it take to escape history, to escape an inertia that powerful, and curve a new course?

The hardest part is leaving Earth behind."

- 'Red Mars', Kim Stanley Robinson 

The accidental "vegetarian"

Because of both being incredibly frugal at the moment and because I'm such a princess that I only truly love my meat / chicken grilled over a flame, but do not currently have the space or money for a grill, I have been declared by a nutritionist as a 'vegetarian'.  I only got that upgrade because when she called me a 'vegan',  I took great exception and calmly pointed out that I eat cheese. Sometimes. I will happily eat meat / chicken / fish if someone else is cooking or buying it at this point. 

There are also two additional complicating factors: I am prone to hyperfocusing and can lose track of time for hours on end working on a project, only coming out of my zone because I realize that the stomachache I have is because I need to pee.  Additionally, all the times of being so violently ill and trying to eat or drink only to become more violently ill, I now have what is called "refeeding syndrome".  In layman's terms [you can Google it, if you'd like] my brain associates those foods with being ill and instinctively avoids them, which creates an ever narrowing landscape of food that I can successfully intake as well as a kind aversion to food.  No bueno.

Her deal, of course, is that my diet wreaking havoc on my body.  She called it a "starvation level" diet that had me in a state of moderate malnutrition in the direction of severe malnutrition; a detail that can exacerbate both my anxiety and my tendency to seize. This is how protein has become a literal prescription for me, as the amount of nutrients I could get from the eating pattern I was on meant that I would have eat all day and I would still fall short of a reasonable window of nutrition.

This is all well and good, but I've come to realize [on day 3, they started feeding me hospital food and that truly brought this into focus] is that I really, really, and I do mean REALLY love vegetables.  Of almost any kind.  And, recently, many kinds of fruit, as well.  In light of this, what I've been trying to do is put in a few hours of research each day on protein balanced meals that are economically feasible [largely, non-animal protein based] right now. 

However, even when my economic situation is on the up and up again, I'm not sure how meat heavy my diet will be.  Maybe some fish and the occasional BBQ, but, honestly, I long to have a beautiful garden, much as my friend Kay does, and just walk out my back door to harvest what I've spent working on during days in the sun and the rain.

Please don't get me wrong, there's really nothing socially conscious about this.  It's simply the tug of foot to earth, hand in soil, and sensory filled gratitude for the goodness in my body and the bodies of those with whom I share the fruits of my labors of love.

Funny what happens when you get your ass kicked.

Thursday, July 03, 2014

Turning the bend

The other night I woke up starting to slip into seizure mode.  I did my breathing exercises.  I meditated.  I took Valerian and Passionflower extracts, but I could feel my heart continue to increase and the feedback loop of anxiety feeding into higher anxiety levels was working against me.  I started panicking about having to return to the hospital. So, I tried a different angle: a little over a year ago, I was given a prescription for Xanax. I found the bottle and took a quarter dose.  Within an hour, I fully stabilized.  A little on the sleepy side, but the shaking had stopped, as had the jerking, and I never reached the point where I vomit incessantly for days on end.

Though feeling isolated and at times bored to tears, I've returned to writing because I actually have the time, having a social presence here in the BA is vital to job sourcing, and it helps rebuild those synaptic connections that get blown out with each seizure. Everyone at the hospital could see how hard it was for me to communicate when I was first admitted. Ben as well, when he was here, he not only saw that side, but pretty much had to help me relearn to walk once I'd stabilized. 

However, not having the pressure of trying to save the world via Excel spreadsheets and high level babysitting has allowed me to revisit constructs that have been in place since I was a child. I've pondered principles versus pragmatism. I counted how many Xanax pills I have had for over a year. The prescription was for 42. I have 17 and 3/4 left.  In fact, I'd forgotten I even had them until fear of being back in the ICU launched that memory. Literally, having now done that math I finally understood that I am not my mother and while I have forgiven her for her actions, I need not be defined by her actions or her personhood. I am not an addict or an alcoholic, I am perfectly capable of clear self regulation and have strong judgment making skills.

Years of poor conditioning / education *especially* through meetings for children of alcoholics / addicts told me that I would always live on a slippery slope with an unbeatable genetic predisposition for addiction and alcoholism, that it was likely only a matter of time, and that I somehow drew the short straw so could not expect anything but being denied the joy of a full life.  All in a "sucks to be you, but get used to it, kid" kind of way. This is patently not true as regards drugs, alcohol, risk taking, or sport fucking the entire city.  I do accept that this could have translated itself into an OCD like need for order, routine, and an ability to hyperfocus on projects to the point where 6 or 8 hours later, I realize that I have a stomachache and that stomachache is my bladder screaming at me because I need to pee.  Subsequently, I have all sorts of alarms on my phone right now to pull me out of my "zone".  It's quite comical, actually.

What strikes me on one level is that early training sticks. I was taught I would be a failure because of my mother's struggles.  I haven't sought proper medical care, because OMGWTF, I might become an addict because I've been prescribed a narcotic!  But the weirdo horror film is over, the lights just came up and the end result is that things are wobbly, but not because of poor decision making on my part.  Life just happens and it happened.  I just need to handle it instead of running from it.

This will remain something to be managed and I respect my limitations, because "SPLAT!" rarely ends well, but make no mistake, this is NOT the end game.  Case in point: medication, moderation, and baby steps are all good things.  Most importantly, they are nothing of which to be ashamed.  I actually can manage this shit and deserve every avenue of assistance in order to do so.  I've paid into the bucket for over 30 years, I'm simply here to make a withdrawal on my decades of deposit.  [As a sidenote, regardless of how inspiring the GoPro craze is right now, I won't be rock climbing, BASE jumping, or riding a dirt bike down the side of a mountain so I cannot go fully inspiration with soundtracks and all.  Love the vids though!]

I've read so many comments and threads on epilepsy and TBI that another turning point has become realizing that if Ben had a condition, I would be at his side ASAP and as much of an aspect of his support system without hesitation.  My condition need not define me, it's just another layer added to the complex creature that I am and always will be. Though I anticipate obstacles, I think you find what you want to see and when you seek solutions and authenticity, more often than not, you find just that.  When you don't, you find new lessons to ponder and learn.

I stood in line for one type of county assistance for an hour and a half today and it was tough.  Not because I felt disdain, but because no 4 year old will ever respond the question of "what do you want to be when you grow up?" with "destitute, malnourished, largely toothless, and ignored by the sources in society who could change that in a heartbeat if they only made that choice by what would register as an accounting error in the interest column of their most recent financial report."  But the thing is that this once 4 year old wants to be recognized as a valued human today while being presented with opportunities. I just wanted to hug everyone in line and behind those desks and counters and say "hard is hard, but keep on keeping on; we're counting on you."

I have zero intent on trying create a case for permanent disability, but recovery takes time. I want to work, I can do some things right now, but not always with consistency and I do think that I will require a strict regime of both physical and occupational therapy to reach and maintain a fully functioning level, because, you know, growing a new brain takes some time!

Finally, I ordered a medical alert bracelet today and it honestly made me so happy. No more hiding. No more denial.  No more deflection.  I have done so much research.  It made me happy, because I can feel safer.  I don't always want a chaperone in case I seize, but I do want people who glare when I sit in the disabled section, suck their teeth in judgment, or look away in disrespect when I take too long or seem confused because I'm entering or exiting a seizure state or just fall and go apeshit on the floor to understand the situation.

Funnily enough, and not that I recommend this course of action, I had to have not one, but two, TBIs to get a new brain and get to see things from a new perspective. Even more funny, I remember a friend's mom catching my friend's big brother in a lie and issuing the following warning, "Do not lie to me, boy, because I will slap the stupid right out of you."  Maybe that's what the universe did.

I have thought a very great deal about this and, well, my life, my story, is the only one I get to write.  So let's get down to the business of writing it properly.

Wednesday, July 02, 2014

"Breakthrough seizures" and breakthroughs

Because our brains are so complex, epileptics can experience their seizures quite differently. Mine tend to be triggered by being overtired, overly hungry, overly emotional [positive or negative], or through a sudden anxiety spike.  Frequently, they begin in the middle of the night and I can anticipate them by an elevated heart rate and teeth grinding / clenching that precedes actual jerking, shaking, and a mother of a relentless headache. Then I begin to vomit at least once an hour, so we can add dehydration to the list because while I drink water steadily, it usually is only a way to avoid dry heaves.  This usually lasts for 24 - 72 hours. 
Because I'm on the maximum dosage of Keppra [750mg x 2, daily], I'm working under the impression that the "breakthrough seizures" are actually suppressed Gran Mals as opposed to Petit Mals - aka absence seizures.
After my most recent stay in the hospital, I am determined to not return.  It was necessary and educational, but it was also so very awful.  So, at roughly half past 1AM this morning when I woke with a racing heart beat, shaking, jerking, the tinny eared headache onset, and the telltale cough that I employ in order to avoid throwing up, I tried a different approach.  I'm aware that I have a problem with anxiety and I know that it can become a powerful feedback loop for me. 

When I'm restless, I use both Valerian and Passionflower extracts, but I also have medication for the anxiety that likes to clutch at my chest relentlessly and I use the medication very sparingly.  My fear of returning to the hospital and days of vomiting up my anti seizure medication, thus rendering it ineffective, along with worry regarding upcoming paperwork and government interviews were weighing heavily on my mind as I tried all of my breathing techniques and meditation skills while even tiny things continued to become seemingly incredible obstacles.

Anxiety was moving to panic and I could feel my heart rate continue to escalate, so, I took a half dose of my anxiety medication, along with some peanut butter [I apparently do not get enough protein on my previously standard diet, which was labelled, alternatively, vegan and starvation by the hospital, though I'll happily eat steak, pork, seafood, and chicken when I have the funds to do so] as well as chugging a glass of water, just in case!, and within an hour all signs of a seizure had dissipated.  I'm still pretty tired as both pre and post seizure sleep is not incredibly restful sleep, it's sort of a catatonic, triage level layover, and anti-anxiety meds hit me pretty hard, but half a day of resting easy versus 4 days in the hospital?  That math is obvious.

I think I'm finding a way to not feel constantly in danger of being randomly blindsided. I'm sensitive enough that I can feel the signs of an upcoming episode.  If I can find a way to create a safety net for diverting those episodes, I can return to a normal[ish] life...or, rather create a new normal life for myself.  Living in fear of leaving the house because "anything can happen", is tiresome and not a fun way to live.

I'm sensitive about the anti-anxiety drugs because of my mother's struggle with addiction.  I simply don't know how much is genetic and how much is choice driven, but if by vigilantly managing their usage and using them only only under certain as needed circumstances is a course of action that will keep me out of the hospital, perhaps it's time to rethink my perspective on their appropriate usefulness. 

I'm excited about this new development.  I'm excited about being open to some changes that I was staunchly opposed to in the past that will hopefully improve my future.  I still accept that it will be an uphill battle.  Weirdly enough, I'm happy to respect some limitations in the interest of not killing myself by being too stubborn and simply, instead, take things slowly.  In fact, it feels less like a limitation than a new door opened.  I'm excited to begin not being scared in my body or about the world at large.

Tuesday, July 01, 2014

The awesomeness of sharing hard times

[Double post warning for people who follow me both here and on FB]

I know that the decision to be open over the last 18 months has been somewhat offputting and perhaps even intimidating for some people. Anyone who knows me knows that, historically, I have held my cards very close to my chest, but I made a conscious choice to make a 180 degree turn. Not because I need sympathy [though I have appreciated the support], but because I had come to the point where I felt as though too often we aren't honest with other about the tough stuff. The crap days. The punch to the stomach. The faceplants. The OMGWTF RRREALLY?!?! moments. Too often, maybe in idle conversation an intersecting point could come up where you're filled with astonishment at a shared feeling and, looking backward, how much better it would have been to not feel so isolated at the past moment.

Ash's talk is great this way. Because as she states, "here's the thing: hard is not relative; hard is hard."

I ended up spending several days in the hospital a couple weeks ago, most of it in the ICU [details are boring, more seizure activity, blahblahblah.] Ben was awesome, as usual, checking in as often as possible, though he really isn't meant to use his cellphone for anything but emergencies. A few days after being discharged, he sent me several really sad texts: a few counselors went a bit AWOL on him, his Director was holding him responsible for duties that they had not completed, and there was a huge round of new campers coming in the next day. I gather that he was up most of the night making sure everything was in place. I was sad to hear of his struggle, but I can tell you this: I felt like the shiniest shiny on the planet that he shared his struggle and frustration with ME. As the person struggling, you get the shoulder, the hug, and the kleenex. As the person listening, you get to feel like the baddest of badasses.

It's win / win if you ask me.