Saturday, June 28, 2014

What was it?

[Because I'm not quite ready.]

I can tell you what it was:

Long dreams
Fingers tangled
Legs twined
Forgetting things that need not be contemplated
Allowing myself to be open and uncomplicated

Trust   
The quietest and most soothing of moments
 
It's a week out of the hospital and I know for certain that I made the right decision to not admit myself while you were here.  While I do appreciate the care that I was provided, it was a horrible experience. It would have been hard having you here during that time.  The bruises and scabs are just now beginning to fade and I'm just now starting to breathe easy.

I was a mess, moreso than I knew.  I'm better now and I've learned a great deal in the process.  Bit of a way to go, still. If I can get all of the government funds that I should get, I can step back and focus on physical and occupational rehab therapies while, hopefully, getting certificated as a therapist / advocate for the disabled as the next step in my career path. Big chunk to chew off, but an exciting path to be on.  One I truly believe in and have now seen from the inside out.


But more importantly, I just love you so much. I don't know how I got so lucky to have you as a partner, but somehow I am.  Your soft beard, your quiet way, your hand at the small of my back when you sense me being weak, scooping me up in the middle of the night just because you love having me close. Air kisses and soft open mouthed snores.

I love you, Ben Rawson, as I have loved no one else.

Friday, June 27, 2014

Secrets from an opinionated Tigger [aka Firsbee Girl]

Be as excited to having been proven wrong with the opportunity to see a new angle while giving authentic and enthusiastic props to those who challenged you as you are to being in the right. It's simple math. Win win.

Thursday, June 26, 2014

On faith

Reading through the discharge paperwork, I finally realized why they sent me to ICU so quickly and what the purpose was regarding the questions about DNRs, religion, and next of kin.  Though relatively young, a non smoker, moderate red wine drinker [at best], near vegetarian who makes an effort to stay active [planking to walking, I'm on it], I came in with a resting heartrate of 160.  A number of factors came into play on this, none of them cholesterol or poor lifestyle, just my little chihuahua heart trying to beat itself to the finish line while being crazy dehydrated and severely mineral deficient.

The religion question, which came up on so many forms, kind of got to me, though.  I appreciate the care taken to ask that kind of question, but I didn't have an answer.  Until last night.  And for no particular reason. 

I have faith.  Faith in the possibility of everything and nothing, all at once.  I have faith that if I choose to remain engaged with the world around me, I will understand that I am. I am here.  I belong here.  Wherever that "here" might end up being.  My faith realizes that the greatest of journeys starts with the most unlikely of ingredients, details unaddressed, accidental leaps taken, only to find yourself where you didn't consider wanting to be.  But finding that you are happy and excited and, with each step, that much more at home in your own skin.

My religion? Faith.

Saturday, June 21, 2014

On People Fatigue, Hospital Stays, and Exceptions

I'm certain that I did not coin the term "people fatigue", but I've used it for years and it goes something [or exactly, in my case] like this:  I'm in no way shy and am often energized by being with people, both friends and strangers. I smile at strangers and engage them in conversation and it is an aspect of my personality that made me enjoy being in hospitality so much.  However, and it's a BIG however, I need my time away from the world at large.  Not really "me" time, just time and space where I don't feel the need to engage or feel pressured to be open to engagement.  It's like a palate cleanser or a walk in the woods in order for my inner extrovert to relax on a psychological level.  Minus chardonnay, Dove chocolates, and / or bubble baths.

Because this last round of "breakthrough" seizures, along with their accompanying complications, continued to escalate at the point when they generally de-escalate, I admitted myself to the emergency room early Tuesday morning.  Within a few hours, I was transferred to the ICU where I resided for a couple of days, often hooked up to three different apparati like a little Philip K. Dick cyborg in repair. 

Not only was the nurses' station immediately outside of my door [so calm and quiet!], but every two to three hours, you are visited to have your vitals recorded or your blood drawn or to have your IV stint removed because the vein has collapsed, then moved to another vein [try going back to sleep after that!] or because you've rolled over on the line leading to the heart / respiratory / etc monitors that are now scream-beeping in alarm like a bad Michael Bay movie or for interviews with various people / teams to answer questions you already answered so many times that you can anticipate their questions and answer them before they even ask them.  And, it's INSANELY cold.  It's a good day when you do manage 3 hours of sleep. Parents, I applaud you, once again.

I understand, fully, the point of why these practices are in place, but I'm a person who requires a certain amount of solitude in order to maintain balance and a sense of peace. Do not get me wrong, you receive amazing care and the nurses are absolutely incredible, but you are, in essence, never, ever alone as that kind of supervision is precisely why you are in the ICU in the first place. Even when you're doing your business, they either stay in the room discreetly or leave the door cracked and simply pull the curtains, but peek in to see if you are done. Not only am I now a master at using the bedpan commode, but I no longer have any dignity issues about not getting to wipe my own bum because, well, you do have between 16 and 20 wires and IVs hooked up to you and you're sure to rip one out in the process and that's less than zero kinds of fun.  I speak from stupid and stubborn experience.


As an aside, because my veins kept collapsing, they spent two hours one night trying to find an artery on both arms to use.  Apparently mine are super small, nine attempts later at 2:30 AM, they finally gave up.  It's a unique experience to have five people standing around your bed well past midnight asking to take a turn at putting a needle into you.  Between that and what I'd estimate to be 12-15 IV sites, I have the arms of a heroin addict right now. 

Finally, I was moved to the non-ICU section.  Much of the same routine followed me there, except now I had the privilege of sharing a room with a woman who was extremely vocal in her sleep and kept the TV on 24/7.  In her defense, she has challenges that many us do not and none of us would ever want, so I do not begrudge her.  This time, the room was across from
the Admissions Desk and the supply room with a slamming pneumatic door [think bed pads, syringes, etc. Things that every nurse and PCA are in constant need of and access, sometimes, 10 times in a minute.  Yes, I counted.]  It made the nurse's station seem like a quiet hike through the forest.  The brighter than the sun lights do not go out until midnight. 

So, when I was told on Thursday that I would not be discharged that day and that they felt I should stay the weekend for observation as I still had [and have] some walking / balance issues, I lost it.  Not angry, hissy fit lost it, but lack sleep, lots of pain from all the poking, being crazy homesick for my own bed and bathroom and real food, and Ben being too far away; this news was the tipping point for me.  I didn't bawl outright but I suppressed it so that I had that quivery little voice that shouts to the world, "I WILL NOT CRY-Y-Y-Y.  Shan't." and then promptly began to cry.  At this point, they were SURE I needed to be kept for further observation.

Friday, I overheard the nurses talking about how they needed beds and successfully presented a valid argument for my immediate discharge.  Understand, however, that, much as in doctor's offices, in hospitals, there is a time warp phenomenon where "I'll be right back" usually means 15-30 minutes, "Just give me 5 minutes" means at least an hour, and "Shortly" means more than 3 hours, if ever.  Soon [four hours later], I was in the sunshine and getting the first breath of fresh air I had had in 4 days.  If I could have teleported home, I would have.  Sadly, I needed to get my meds and my chaperone, who is also my ex-fiance, was exuberantly chatty and I did my absolute best not to simply grunt in a sort of shell-shocked response.

Once home, I savored my very untidy, very unsterile quasi-studio, did not even turn on music so I could simply soak in the relative silence of my own space.  When I washed off the hospital smell [pure ick, btw. DCFC described it perfectly: "
In the ICU / That reeked of piss and 409". It permeates everything and clings.  Lord, does it ever cling.] and had the chance to be alone and clean, smelling like a Frisbee Girl should, I felt the invasiveness of all of that forced people time fade.  I feel guilty now, because I've been home for a little over a day and have done everything in my power to avoid my housemates, so greedy am I to restore balance and quietude.

This all brings me to my final point, and a subject that I promise to quit yammering on about: Ben. The exception.  What intrigued me the most about the time we spent together is that never have I ever spent more than 10 hours in the same room with the same person, and that was usually due to working a double shift with someone and in a large dining room with a kitchen to where you could retreat, if needed.  Granted, I've been on long flights, but that doesn't count. 

With the exception of maybe 12 hours [bathroom breaks notwithstanding] once where he went for a run and once when he took a bus tour of SF, we were never apart and usually within feet of each other.  Most often on the bed, on our computers, doing our own thing: me, doing research at my little makeshift "desk", with funtime breaks and him, catching up on sports and anything else that struck his fancy at the time.  We played a great deal of internet dj with each other. But here's the kicker: outside of our excursions, this took place in a room that is 150 square feet, at best.  For 20 days, straight.

It was a revelation to experience and I'm not sure it is an experience that I can imagine having with anyone else as I never imagined being able to have it in the first place.  It is an experience, however, that I am grateful for having had.

Monday, June 16, 2014

Lessons

Due to a misinterpretation on my part, I had a very horrible late night and early morning.  The situation has been resolved.

The following are lessons that I am proud to have learned:

Speak on fact with clarity, but express your feelings without attacking.
Be kind.
Be honest, even when it hurts you.
Allow silence for the dust to settle.  When done right, it creates a safe space for dialogue.
Listen openly.  If you are truly interested in finding a solution, you need to remember that you are not the only person in this story.
Be willing to be the first to apologize or seek compromise.  This builds trust.
Allow yourself to feel crappy.  [Just for a little bit, though.]  Life can suck sometimes and that is a valid response.
When the poopstorm is over, be quick to express your enthusiasm and gratitude and get on with getting on.


Sunday, June 15, 2014

There are days

There are days when one of your best friends calls you up, out of the blue, and you talk for nearly two hours about so many things under the sun as if no time has since passed from your last conversation, because in your heart it hasn't, but you are still full of so much delight in hearing and sharing with them.

These are the days when you feel so very special and blessed.

Thursday, June 12, 2014

To Ben

Tuesday night, I ended an internal struggle with myself on how best to be a wise, compassionate, and responsible person as I address current circumstances. Especially to myself.

Ben, you have so many adventures ahead of you; I can only hope I will play a part in them that suits you and in the way that you want.  This is no way a final note, I simply just got a big wowpow to my brain [not physically, but positively] and thought to articulate it to you.  You are the most amazing person I know and I am so thankful for you. [As well as being wildly in love with you more and more each day.] 

Also, when I hear this song, I think of you: 


https://www.youtube.com/watch?v=WRmBChQjZPs&feature=kp 

To all of my loved ones, thank you so much.  Your support continues to mean the world to me.

Wednesday, June 11, 2014

Reward

Every year, on December 31st, I write a letter to the previous year in thanks to what it has brought and another to the next asking for things it can bring.  This last 12/31, I asked for challenges in a "bring it" sort of way.  Well, I feel as though those challenges have been brought on many, many levels.

At this just past mid year, I have decided to ask the year /  the Universe / the whatever for reward.  Not out of entitlement, but because I honestly feel that I have earned it.  The funny thing is the "reward" I want is not a reward at all on most levels.  I suppose I did choose to fall in love with someone who resides on the other side of the planet and whom I support traveling the globe [because that shit is REALLY cool - I certainly enjoyed doing it], but would pick him up at the airport in a heartbeat.

I did not choose the car accident.  I did not choose to be taken off of my medication which led to the brain hemorrhage which is now messing with me in every direction imaginable.

I did not choose how hard it is to get basic healthcare, any healthcare really, which directly translates into having a truly difficult time getting a job...especially when you may need brain surgery.  And which also complicates my ability to navigate the maze of government agencies in order to attain the benefits in which I have paid into for 30 years.

I have "payed it forward", kept with the positivity and shared it, given props sosososo many times. I have helped when I could and not been bitter.

Dear Universe, I could simply use a bump right now.



Thanks ever so,

Jacki

Monday, June 09, 2014

To every nurse I have known

Thank you.

You have given me direction when I was on morphine drips and post seizure.  You have held my hand, gently stroking it or softly wiping my forehead.  You have created a safe space when I was scared or lost past words.  You have been kind.  You have been full of compassion.  You have taken care of me, walked me to the bathroom, made sure I was ok, fed me, and simply sat beside me.

You cared. 

When I was as scared as I have been in recent memory, you were there at 2AM. You adjusted my blankets, learned that I like orange jello and mint tea, and brought them.

You were kind in a very special way.  You asked me questions [when I could answer] and shared stories to calm me down.  The humanity that you deliver every day is inexplicable.

While I wish I never had the reason to meet you in the ER or ICU, I am so full of gratitude for your care and graciousness.  You are truly amazing.

Once again, thank you.

Happy / Sad

It is tough to balance the dichotomy of happiness and sadness.

I want him to see and experience so much, I did and I loved it so very much.  Yet I feel constellations of cells in my body that yearn for his presence.  I love how easily quiet we were together, but keep thinking of things I'd've shared with him had there been more time, but it was so easy simply being easy together.  I could list a list, but that would be silly.  And somewhat painful.

We're having a windstorm here in SF at the moment and he's likely melting in heat.  My brain is digging itself up from some kind of primordial mud.  Rebuilding and knowing itself again. It's fun and a bit of wow.  It is hard, too.  I have no idea how traveling families do this back and forthing.

I still have so much paperwork to do and feel so clogged but remember that my thoughts generally come out completed if I'm patient. I sort of go underground and then put things out nearly fully formed.  What looks like navel gazing is often getting my message right mentally because sometimes the good stuff happens in the peripheral angles of your vision as you work internally.

I just have a struggle and then I hear Louis Armstrong sing in my ear "What a Wonderful World' :)  Then, I think, of course!

Saturday, June 07, 2014

An addendum

While a number of the posts on this blog are somewhat somber, they are in no way pessimistic.  This blog is a place for me to explore, share, and articulate a reality that I may need to reference and that, with hope, others can gain benefit due to its honesty.

I do not enjoy my struggles, but I do appreciate them.  In a crazy way that I never fully understood before, they make you a better person if you can simply accept the challenge without anger.

As for my courage and optimism, Ben and my family of choice are deeply responsible for the tenacity in my "get up and go."  Days when I wanted to say, "Just feck it all!",  I heard, "Try again...for me, just try." and "Anytime, just call."  I have done both and I feel that I am a better person for having done both as it involved a level of vulnerability that I would have never previously exposed or engaged.

So, even with brain damage and missing Ben like my right arm has been cut off, things are good.

Things are good.

Sins of the Parents

Please allow me to preface this with the admission that the title is heavy handed. This being said, many religions claim that children have to carry or make amends for the sins of their fathers [read, parents.]

I realized this morning as I was taking my avoidance behavior to higher levels, that the reason that I have struggled so hard to move forward seeking assistance is that my mother's repeated suicide attempts and imaginary illnesses have made me feel as though I am also a faker. 

But I am not.

I saw those images of that clot in my brain. Ben was here as I seized and recovered, struggled to walk, and then did it [admittedly with much more effort than it feels that it should have been.] 

I collect bruises like Vegas card counters collect payouts.

The short story is that her brand of fraud and emotional manipulation became my brand of guilt as I knew it was a combination of mental illness and addiction that I wanted nothing to do with it but to which I felt responsible to be available in order to repair.  In a weird pay it backward way, I gave up a great deal trying to be an awesome daughter despite every unimaginable kind of abuse.  No, you do not want to know.  Please trust me.  I have no desire to go there again.

She had to get really over the top before I could walk away. I wish that it isn't what it is, but life has a way of happening.  And so it does.

The switch from "I wish" to "I will" is a big one.  It involves more than a few "moments", but it is worth it.

Wednesday, June 04, 2014

A Kiwi kind of day

It was a bit of a Kiwi day. I left the house about 6 hours ago in order to grocery shop at Safeway. I was feeling a little wobbly, so thought, "what the heck - let's spend two bucks to ride the tram! Treat yourself, Teeter!"

After over 40 minutes of watching trams go by in the wrong direction, one finally pulled up and off we sped! For one stop. Because MUNI was being MUNI, we were continually shifted from shuttle to shuttle and driven around on routes that weren't the one we had meant to be on by drivers who had very little idea of what the exact routes were.

All I wanted was some soup. From the Safeway that's MAYBE 1.5 miles away. I ended up, over 5 hours later for a shopping excursion that took less that 15 minutes from entrance to exit, at an entirely different Safeway that is nearly 3 miles away.

Because of various shuttle transfers and recommendations, I have been past Twin Peaks, through Glen Park, through Balboa Park, through the Sunset, to Ocean Beach, and skirted Golden Gate only to end up at a destination in which I did not intend [it is my favorite Safeway, though, so all was not in vain.]

More importantly, why was it a "kiwi day"?

It was the first transfer attendee who could see me being wobbly, told me not to rush, and assured me they would not go until he said so. He gave me a thumbs up when I got on the bus.

It was the bus driver who had been a taxi driver in New Jersey and shared with me how his parents were injured and died from a car accident.

It was the juiciest blonde black woman who caught me laughing at her complaints about the wait for the shuttle and said, "I KNOW you feel me, sister!!" and exited the bus yelling, "Adios, mamis!"

It was the shy boy beside me who, when I complimented him on his freckles, gave a near thesis level dissertation on why he has them.

It was hearing 5 languages at once and not a thing but gratitude expressed toward every driver.

Crap happens but so much good stuff is out there, sometimes a 5+ hour detour entirely reminds you of that.

Acceptance

I have been trying to explain that there is a difference between acceptance and giving up.  Giving up is a dead ended street that you choose not to leave. Acceptance is a new path that you must choose how to navigate as you gain new skills.

Giving up is far easier, but acceptance is much more exciting.  Then again, I've rarely backed down from a challenge, but I admit to moments of, "Oh fuck it ALL!" only to have a sit down in order to figure out "where to go from here and how, exactly, do we tackle this?" sort of session.


Acceptance is also learning to just sit down or take a nap or say, "I'm really struggling right now." And be okay with it, though it is uncomfortable at the moment, because those are very normal and rarely discussed responses to stress and because they are moments of healing and they allow those around you to understand and respond and behave in ways that will make them feel important as well. I tend to recede out of a combined sense of shame and a focus on puzzling a problem through to its successful culmination.

So many times, people I have cared about responded with, "If I'd only known." It wasn't until Ben made a comment that it felt to him that because I wasn't fighting for what I needed, I wasn't fighting to remain in his life. While being a rough translation of the exact exchange, these are the salient points.  I was finally able to immediately switch mental roles and see how painful it is to watch someone you love not act lovingly toward themselves.  Substance abuse on any level was not involved, but impossible work hours and a highly abusive familial relationship very much were.

A brain injury made me sit down and reassess everything.  It had to happen twice or perhaps, you just call that "compounded". Not fun, but I am full of nothing but gratitude.

Never be afraid to take a rest.  Never be afraid to ask for help.  Never stop getting back up.