Saturday, May 31, 2014

Not nostagalia, but reconnecting

In the last several months, I was presented with a box of notes and letters from junior high through university.  These can be difficult years and I was no exception to that feeling.  I won't name names [it's likely that you know who you are], but what I found and read was incredible and I took a moment to really look back and remember laughing together, supporting each other, seemingly endless anticipation, exam and SAT fears, and feeling so full of potential. And basically being an emerging adult without looking like the idiot you frequently thought you were.

Parents, be brave.  I love and respect you for your task and just know that there are Ray Bradbury aspects of childhood that include scraped knees and rolling in grass that cannot be manufactured.

Guilty pleasures

I've put some strong words out here regarding epilepsy and TBI, so I felt it only fair to add some levity as well, because it isn't all bad.

The one guilty pleasure that I do have about recuperating from my rolling episodes is my capacity for sleep and the vividness of my dreams. I have slept, easily, for 20 of the last 26 hours. In that time, I became fluent in Japanese; was taught the finer skills of conducting by Hans [an opera singer and beloved ex-colleague who is NOT a conductor], who looks stunning in black and red velvet and has a conductor's wand that is a true piece of art; woke myself, talking out loud, in a heated debate about the Pythagorean Theorem; and then yelled at my closed and hibernating laptop for surprising me by being where it was, though it has been in the same place for months.

I realize that this is my brain "rebooting" and rebuilding synaptic connections - some old, some new - but there are days when being your own source of entertainment is a true joy.

Things they do not tell you about Keppra

When the label says, "dizziness and drowsiness may occur", they are not kidding.  The dizziness ends after about 10 days, for me, in each case, but I also resemble a domestic abuse case in the process.

The drowsiness is a bit tougher.  Having a somewhat full stomach prior to doses helps, but if I'm stressed or drink something alcoholic, say, a beer or a glass of wine, I can go from 60-0 in less than 30 minutes.  I have learned to have a practiced "wingperson" around if I'm out or just have that beer / glass of wine at home.  Even after half a glass of wine, I'm told that I can fall in to a "several hour, deathless slumber and wake adorably affectionate."  This is good at home.  Not as good on MUNI or a public place.  Be aware of that combination.

Keppra can also make you see tracers in the dark for the first 90 minutes of taking it when you turn out lights; for example, walking from the bathroom to your bedroom [Google "tracers" if you are lost.] It makes walking a trial and if it involves steps, a dangerous experience.

Setting an alarm on your phone for your doses is an incredibly helpful idea.  It's easy to get distracted, miss doses [hello seizure], or double dose to the point where you are dopey as heck.  Let technology help you; keep some doses in your pocket and stay on track.  It takes 60-90 minutes for the dose to fully hit your system, but a couple hours too late can mean the start of seizures. Don't let that mess happen.


[Update] This post appears to be fairly popular lately and I wanted to note that, shortly, I'll be launching a blog about my experiences with TBI and epilepsy; basically the circus that it can be and somewhat continues to be.  It will be plain spoken and it will be full of dark humor and healthy [and I do mean healthy in a good way] dose of self deprecation as these are my coping mechanisms. I most definitely err on the side of respect and kindness, but laughter and love are the only things that have gotten me through a full reboot of my life and brain.  I do, however, respect that not everyone is comfortable with that, so please know that upfront.  For the time being this will be a private blog, but if anyone is interested in reading what I am not quite ready to share publicly, drop me a note in the comments box or email me at frisbee.girl at gmail.com.  Thanks!

"Be the lightning in me that strikes relentless"

Last Saturday, at 5:45AM, a cab pulled up and took us to the airport.  I had promised that I would not cry and kept that promise until I exited the airport lobby after watching him clear TSA.  The tears that I did, and have since wept, are a mix of angsty wistfulness at his absence and joy at his existence.

In general, we text each other throughout the day each day.  I have said before that I do not like beginnings.  This is especially true of relationships.  I like the worn, soft, and slightly shredded level of relationship that resembles a beloved pair of jeans. I'm less a weather talker than I am a shared experience / inside joke sort of person.  That's when I feel as though I know and am known.  Whether that's seeing something and busting out in laughter because we know what that means about a shared moment in the past or shaking one's head and saying, "Oh, Moon Moon!" and both, or the group, knowing exactly why.

I will finally wash the sheets of our bed today as his smell has faded.  Nearly every romantic relationship has been based on a fluid sense of companionability, but this one has been like finding the other half of me.  Not in a way that is about sameness, but about discovering and sharing wonder and awe with one another and getting it and then wanting more.  Many times, in extended periods of shared, comfortable silence. 

20 days together and maybe 2 hours spent apart [I mean, I vomited in front of him because I couldn't reach the bathroom while he coaxed and calmed me down. Trust me, I would reciprocate, but my dignity was damned in those moments.]  Never have I done that span of time or been as vulnerable with another person without thinking felonious "do not touch me!" thoughts.  Never have I felt as much pure and calm joy for that expanse with another person.

So, in Snow Patrol's words, I have found the lightning "that strikes relentless."

Friday, May 30, 2014

Some things that people don't tell you about epilepsy and TBI

It is not uncommon to become violently ill in regular and rapid succession during and following seizures. I am prone to rolling "episodes" and can be violently ill [aka vomit] every 40 - 60 minutes for several days wherein I cannot even keep down water.  Whether they are suppressed gran mals or highly petulant petit mals, Ben, who is 6 foot 6, a middle school teacher, coach, and camp facilitator, told me that I "shook like a leaf" for the three days of my rolling seizures.  Being a little shy of five foot three and just over 100 pounds, that says something.  This cycle is especially difficult because it makes it hard to get anti-seizure medication into my system and offers little time to restfully recuperate [again, ask Ben: "you just flopped around like a fish in the small moments when you did drift off."]

Here's what I can tell you:

Why one tosses cookies during or post episode is a mystery [I have been doing research online] and not everyone suffers from it but for those of us who do, it's not so much fun.

Keep a bucket or waste basket by the bed for moments of urgency.  And a towel as well as a box of tissues.  It's unladylike of me to admit this, but this kind of vomiting is not like having had one too many drinks.  This feels like your toes should be making an appearance in whatever receptacle you are gracing. Frankly, you will pee yourself and then feel a powerful need to wipe your face. If you are lucky, you will make it to the bathroom, but just be prepared. Trust me that you will have abs and back muscles of titanium after these "engagements" with your gastrointestinal system.

Even though you will likely throw it back up, drink as much water as you can...constantly.  You will be thirsty.  Soooo very thirsty.  Feed that need. 

Electrolyte packets are amazing.  Mixing one with water and drinking one right after being ill, helps your body move toward restoring its balance, thus decreasing dehydration as well as the tendency to repeatedly throw up.  Gatorade / Powerade will work in a pinch, but they aren't well rounded.  The sugar can be a decent boost, but companies like Alacer make packets that are smaller than a credit card and even lighter as well as being quite rounded in their ingredients.  Absolutely handy, quite economical, and completely worth it.

Broth and smooth soups are a blessing and also get nutrients into your system quickly.  Plus, trying to get chunks of chicken and noodles out of your nose is never fun as you are generally exhausted after one of these special sessions with the toilet.

Know that you will likely alternate swiftly between being super hot to being crazy cold.  A wet washcloth close at hand that you can apply to the back of your neck or forehead for cooling and a comforter / blanket in which to cocoon in will be amazing.

When your phase finally ends, embrace the need to sleep.  Honestly, you need that reparation. Your body may have been on constant vibrate mode for two or three days while it decided to be violently ill three or four days in a row, every hour on the hour.  Take a bit of time to snooze that shit off!  Also, fruit is an amazing conduit to bouncing back and anyone who loves you will do you the solid of running to the grocer for this.  Ben and I went through pounds of satsumas, strawberries, and pineapple.  I have no sweet tooth at all, but I basically inhaled two thirds of what we bought.

Finally, thank you to all of you who read me.  This is all new territory, but I'm honored to have you with me on my new found journey and please feel free to ask me any questions.

Just because


My father was the single most beloved person in my world. My mother was my mother but was frequently unavailable on every level due to a host of her own issues. Sesame Street and Mr. Rogers were my closest friends for years.

My exposure to Reading Rainbow was minor, but I was encouraged to read at a very young age by my father, who I suspect got tired of answering "Why?" That could seem dismissive, but what it did do was fuel my love of reading and acquiring knowledge. Knowledge that was not dictated to me. Knowledge that I could balance and weigh and come to understand as fact or opinion and then accept and respect in their own right. For me, it is because of that experience that I can listen to someone quietly [maybe after a snit] and respond with, "You have a very valid point; thank you!" and follow up with further questions and ideas of my own and requests for continued engagement in order to grow a common ground of understanding.

I love the internet. I dreamed of it before I knew it existed or could exist. Trolling and porn aside, I knew how incredible it could be to engage in mindful and powerful exchanges with people everywhere. This was a magical thought to me when I was 6. This is a reality to me now [still pretty magical, though!] Reading was possibility then; reading and research are a new kind of reality now. The more people, kids and adults, who can benefit from this resource, the better this world can be.

Thank you for be being so very awesome, LeVar and the internet!

LeVar, for many reasons, you are the bomb.

http://www.youtube.com/watch?v=3-XHuNcSMLc

Thursday, May 29, 2014

Want

I want rain. Hard rain.
I want Ben here so I can hear him snore and laugh in his sleep as he spoons me.
I want him here so I can make him shake his head and laugh at my weird jokes.
I want to see a bolide as it explodes overhead.
I want my "what if"s to turn down their volume.
I want to be able to enjoy a vacation again.
I want to live to be 500 - natural details notwithstanding.
I want. I think I am greedy, but I still want. So very much.

Like Masahide, I want to be brave.
"Barn's burnt down… now I can see the moon."
This, I want.

Tuesday, May 27, 2014

"Promise me that you'll give faith a fighting chance"

I'm incredibly indiscriminate about the music that I like so long as it is authentic and well crafted. 

During an afternoon of indulging in Youtube overload a couple years ago [do NOT get me wrong, I still indulge!], I came across a Lee Ann Womack song called "I Hope You Dance".  The one line that caught me then and catches me now is, "Promise me that you'll give faith a fighting chance."

Faith and action walk hand in hand.  During his 3 week stay, I went from not being able to walk and barely able to stand due to rolling seizures to climbing Twin Peaks [terrifying - damn, folks, put some railings along those disintegrating steps!] to doing a five mile walk from vista point to vista point and a few other points of interest along the Golden Gate Bridge.  His support had a great deal to do with these accomplishments, but the fact is that the climb and the walk each took about a day and a half out of me.  Totally worth it and incredibly educational: stress - both good and bad - are triggers for me. There will be good days and the good days are amazing.  There will be bad days and the bad ones, well, they are pretty bad.


Despite what the neurologist said last year when he refused to refill my anti-seizure meds [thus allowing for the recent catastrophic episode], I now understand that I need to be on meds for the rest of my life.  I may now even require brain surgery due to the hemorrhage and the fact that I cannot feel my feet from the arches forward and that my either suppressed gran mals or overgrown petit mals can go on for days.  And I'm on what I believe is the maximum doseage of Keppra 750MG x 2 a day...which will shortly run out because one doctor doesn't want to renew my prescription due to liability, but the government takes its time, so I have no access to the insurance that I've been responsibly paying into since I was almost 15; I've been at this whole thing since early March, just days after the episode.  

I guess that I'm not SuperWoman, after all!

Before Ben arrived, I engaged an advocate agency to assist me in working through SSI and Disability.  Today, I begin preparing the presentation of my case to potential lawyers regarding medical malpractice.  


The terror of climbing Twin Peaks and the exhaustion of walking the Bridge are apt preparations for the coming months...as was Memorial Day.  I fail to understand how there are so many who need assistance and there is such an uphill battle that should never need to be fought, especially after having served.  As much dignity as I lost during five days of him watching my struggle, I'm somewhat glad for having a witness who can account, in detail, how truly difficult the episodes can be. 

It's frustrating and terrifying on entirely new levels.  Beyond having been actively employed for over 30 of my 44 years, I've certainly never served my country in combat.   I've merely meant to be a contributing and responsible member of the human race.  I intend to do so again.  Asking for assistance feels like a cop-out some days, but even as I type this, I'm willing myself to work through an ongoing seizure; it's been going about 7 hours, so far.  One that would make it hard to get prepared for work.  One that makes me lose my vocabulary.  Or logically understand words coming out of a person's mouth.  Or hold a pencil.  Or type.  Or remember what was just told to me unless I write it down, because TBI can ruin short term memory.  But I cannot write it down in any legible fashion when I'm seizing because seizing can interfere with small motor coordination.

This is probably the most depressing, but honest, post that I have put up.  I do, however, feel that maybe it's better to just say, "Shit sucks" than to keep a stiff upper lip and act as though nothing is wrong. Some days shit sucks, but sometimes, it's not until you open up about that with other people that you get and give permission to move forward.

So.  With faith, I fight and move on.

For Ben

I hope you have some Lactaid on hand!

As cheesy as it sounds, thank you for the best 20 days in recent memory.  I could not have handled the last two plus years with as much grace had it not been for your constant and completely unconditional love and support.  There are not words in the English language to express the depth and vastness of my love and appreciation.


http://www.youtube.com/watch?v=1TO48Cnl66w

Sunday, May 25, 2014

What if I loved you for being flawed and perfectly wonderful? [aka "What if I don’t want to talk about the weather?" - Vicki Rivard]

Oh, Joanna! This so accurately articulates what I have been thinking about fervently for the past several months and why I've tried to stop seeming / acting as though I am the Bright Lights, Big City girl with all of the answers and 6 figures and have chosen to speak openly about my current reality. Not because I feel a victim of circumstance, but because I think that we're often afraid of speaking our own truth with one another.

"What if I give a damn about you, remarkable, fragile, dangerous you?

But what if I don’t want to talk about the weather? What then?

Think we could be friends?"

To all of my friends and loved ones: your brilliant successes are worthy of celebration, but it's the still moments and the ones pregnant with vulnerability that I see as being special, so very loveable, and entirely unique. Those are the moments and insights that cannot be scripted. They are a true gift. Please never forget that.




"What if I don’t want to talk about the weather?

What if, instead, I want to talk about the doubts that tiptoe their way up your spine, lodge between your vertebrae and soften your backbone? What if I want to ask about what keeps you up at night when the rest of the world has gone to sleep and about the recurring loop-dream you’ve been having and what you think it means? What if I want to know about the pink scar on your chin and where it comes from and why you try to hide it with your scarf?

What if I don’t care about what’s on TV or the Breaking Bad finale?

What if, instead, I care about the secret song that lives in your lungs that nobody hears but you? What if I ask you to breathe it to me and I promise to listen and I really do? What if I’m curious about the last time you lost, the last time you grieved and is there anything in this world you would die for?

What if I’m interested in your proudest moment, your most haunting regret, the face you thought you’d remember but that now you forget?

What if I don’t want to sit in a noisy pub and guzzle beer until the night becomes a blurry haze?

What if, instead, I want to sit with you in a park, in the dark, swallowing mouthfuls of moon and sharing memories of our mothers? What if I want to take your hand in mine and touch the bones that live there, the knobby joints, the rough patches, the creases at the wrist? What if I want to run my fingers up and down your arm, tracing the route of your veins, revering the blood flow that keeps you alive? What if—for a whole minute, a whole hour—I want to look into your eyes without flinching, to tour the truest part of you, that place that cannot die?

What if I want to break open your sternum and glimpse inside your tattered heart and tell you it may be tattered, but it is your loveliest organ and there is a blood-red garden growing there?

What if I don’t want to chat on Facebook and skim through your photographic highlight-reel?

What if, instead, I want to see your broken parts and blemishes? What if I want to strip away the layers and stand with you, skin and souls laid bare, bony bits protruding, ugly spots exposed? What if I want to place my head on your belly and listen to your liver communing with your spleen and feel the gurgle of your gut and the inklings of your instinct? What if I want to ask you the question that scares you the most and swear I won’t run away when I hear your honest answer? What if I don’t run away?

What if I’m choking on the artifice of it all and feeling like we’re missing out because we’re scratching the surface with the questions underneath the questions, but the veneer is thick and we have barely made a mark? What if we’re all here, on this perfect planet, at this time, together, because we are treasures for each other to discover and rediscover, but what if we’re too distracted by our Twitter feeds to notice?

What if I don’t give a damn about where you studied or what your job is or how much money you make?

What if, instead, I give a damn about the first time you found love and the way your cells shifted to make room for that new feeling that was more force than feeling? What if I give a damn about the tattoo on your thigh and why you have it and when you got it and did it hurt and do you love it? What if I give a damn about what turns you on, what turns you off, how you like to be touched and how you pray?

What if I give a damn about the things that amaze you, that fill you up, that move you to tears, that move you to move, that make you wonder, that make you glow and go slow and look up and see the stars and feel the stars inside you?

What if I give a damn about you, remarkable, fragile, dangerous you?
But what if I don’t want to talk about the weather? What then?
Think we could be friends?
“Lie beside me and let the seeing be healing. No need to hide. No need for either darkness or light. Let me see you as you are.”
~ Jeanette Winterson, Art and Lies.

The "diving board moment"

Falling in love takes many different angles. It could be with your spouse, your child, your siblings, your parents, or your closest of friends. I have come to understand [for myself, at least], that it always involves one core shift: being open to the extraordinary difference that will take place when you chose to embrace change over control.

It's terrifying, but it's the root of trust. I used to call it a "diving board moment": the space when you think to yourself, "Let's do this thing!" and make that leap. It may be a big decision or a small decision, but it is that moment of looking into your partner's eyes and nodding in agreement. No guarantee what is waiting on the other side except the guarantee that you'll each be there for the other through and through.

One end only means a countdown to a new beginning

I promised that I wouldn't cry. I didn't...until I watched him get cleared by TSA and then I walked out of the airport.

Then, and only then, I bawled like a baby.

I'm so excited for his journey and completely support it, but I am almost greedy for his time because we fit so well together. Nearly a month flew by.

With the exception of a run and a few toiletry moments, we were never apart for more than a total of two hours in over 22 days. Our bed and tiny studio feel too big now. I miss his snores, snuggles, and his leg over my hips when he's asleep. I already miss making him laugh when he's awake.

I'm also already counting the days.  Thank you, Ben, for making my life better with each and every passing moment.  I could not be luckier if I tried.