Very true...

"I've found almost everything ever written about love to be true. Shakespeare said "Journeys end in lovers meeting." What an extraordinary thought. Personally, I have not experienced anything remotely close to that, but I am more than willing to believe Shakespeare had. I suppose I think about love more than anyone really should. I am constantly amazed by its sheer power to alter and define our lives. It was Shakespeare who also said "love is blind". Now that is something I know to be true. For some quite inexplicably, love fades; for others love is simply lost. But then of course love can also be found, even if just for the night. And then, there's another kind of love: the cruelest kind. The one that almost kills its victims. Its called unrequited love. Of that I am an expert. Most love stories are about people who fall in love with each other. But what about the rest of us? What about our stories, those of us who fall in love alone? We are the victims of the one sided affair. We are the cursed of the loved ones. We are the unloved ones, the walking wounded..."- The Holiday

Still not okay

I thought that since I haven't had to use my wheelchair in a year I'd be okay using it for long distances  this weekend.  I was wrong.  I detest not having the strength and the stimuli blocking skills to walk around this crowded unfamiliar vaca destination as we indulge in a long weekend.  When we go shopping I have to ride in my chair, when we explore the city I need to ride in my chair and today as we toured the zoo I needed to ride in my chair.  My mother bless her heart is on a mission to push me everywhere, wanting to help but drawing more attention to me than I can handle.  I never used to give a shit about what people thought about me, and I don't really now but I CANNOT handle the incessant stares and the attitude that comes when people are delayed even the slightest bit by someone with mobility issues.  I had a meltdown today and couldn't help my public tears; something I do my damndest not to have occur.  My traveling companions only exacerbated things by wanting to take every trolly, tram or handicap bus we could.  They thought it was cool to take advantage of the perks of having a wheelchair in the group but for every special ride they got, I got five extra minutes of intense scrutiny from people watching or waiting, not to mention the grunts and grumbles of the employees having to set me up.  On the vehicles you never get close enough to really see any animals so the only thing that was distracting me and making the trip bearable was ripped from me when my preferences were not even acknowledged.  I'm not an invalid and do not want to be a burden or obligation so if I must use the damned chair let me do it myself!  I felt on display as a freakshow exhibition but invisible as a human.  What's worse is that due to my worsening gate I no longer have the option of just sucking it up and walking as much as I can, unsure if it's a physical therapy issue, neurological issue, or surgical issue I have been ordered to take it easy on the walking before the problem becomes greater than any treatment.  My leg is literally twisted, turning in from hip to knee, then turning out from knee to ankle causing said ankle to roll; the result: every step feeling like this is the one that is gonna snap my knee.  It's hard not to get discouraged.

phew...

I still have to try desparately (and most times unsuccessfully) to not get discouraged that a year + later I am still so easily overstimulated or emotional, physically and mentally drained. Any kind of socializing takes a massive toll, so I can only do it for a few hours at a time tops without having to decompress for hours or even days.  Riding in a car for around a half hour is akin to how taxed I used to feel after working on an essay or taking a stressful exam, not enough to drain you for the day entirely but definitely noticeable.  And this is just riding along, I can't even imagine driving again yet.

I have to gear myself up for any prolonged interactions paying careful attention to my stores of energy.  I'm twenty fucking eight and now have the social life of a 92 year old shut in because anything more blurs into major meltdown territory and I can't fathom subjecting my already put out loved ones to any more.  One on one mellow time is absolute heaven though, a movie day or low key games just hanging out with one other soul that I am already comfortable with seems to be the perfect balance of social and stimulation boundaries where I'm not alone, possibly lonely and in my own head; but I am also not intrusively barraged on each imaginable level until my control or mask slips and I either ask to prematurely "call it a day" or have what is now coming to be a hideously characteristic flood of tears and  what I've come to liken to a valve pressure release breaking down for 15-20 mins and then regrouping.  Not only what I consider socially un fuckin acceptable but completely embarrassing and unfair to ask my companions to handle EVERYTIME they feel like having me be part of the group.

I don't know how to work on this, start to control it or anything, all I do know is that this is completely uncharted territory for me and exactly the opposite of who I used to (socially) be. Goddamnit.  I can find blessing in this journey or chapter as a whole but am finding difficulty cultivating an appreciation for this particular aspect.  Fuck.

hoping...

Here's to hoping...  that I've finally gotten the correct info in my fight for healthcare, that I get approved for social security and long term disability, that my loved ones are not sick of me yet, that there will be someone who finds solace or comfort from this blog other than myself, that I will one day again be  contributing member of society, that I am still destined to do something great in this life and make a difference in the world, that I  have enough strength and fight left in me to beat this, that I do not tax the resources of my support system, that there will be a man that I'm in love with who is also in love with me, that I find MY mate, that he gives me a damn divorce soon if he doesn't want me, that I find my swag again, that I can remake myself into a good example for my younger siblings, that one day I will not be achingly alone anymore, that I am still being a good friend to mine through this, that he comes home safely, that I can get my heart back asap, that pushing myself to the limit each day helps me to get down to the size I want to be, that my thirties are better than my twenties, that I am on the right path, that I become fully independent again, that my mind heals enough for me to do complex math again, that I can strengthen my vocal chords to at least their pre-stroke state, that with constant use and exercise my left hand will one day function and look normal again, that I'll be able to walk without a limp, that I'll dance again... here's to hoping...

experimenting...

So I've decided to tackle my social endurance issues or deficiencies as I do my physical handicaps... like a sexually frustrated drill sergeant.  I'm going to attempt to power through the over-stimuation and suffocating loneliness I feel when with people.  It's odd that I can be in a group of friends or family that absolutely love or adore me but feel more alone than I do when I sequester myself to my bedroom...  To this point I have been socializing in bite-sized increments and that doesn't seem to be bringing forth any detectable progress, so I'll just push myself as far as I can and deal with the onslaught like I do the physical pain that comes with my balls to the walls recovery style.

I start today... going beach camping with a bunch of friends for four days then straight to the fambams to watch Mya for a week. I'm exhausted just thinking of it.  I take solace in the fact that the beach, any beach is home to me and I am always the most at peace breathing in the salty air, listening to the shore break and sifting sand between my toes.   I'll admit though that even with that comforting reminder in hand I'm on the verge of a panic attack... sounds silly huh? Even I see that it's not rational, but there you are.  Fingers crossed, I'll let you know how this experiment turns out.

I know it will be hard, I'm not expecting a miracle but I am praying (squeezing ass cheeks actually) that I'll be able to maintain control over my emotional and mental state and not make my family and friends regret inviting/ calling on me...

Will Not...

I will not get comfortable with my deficiencies; I asolutetly abhor being told that some of the cognitive problems I now battle are the same of some who haven't had a stroke.  I don't care about how I measure up to others my goal will remain to keep pushing to keep fighting until I am a better version of myself before the fucking stroke. If you've ever truly known me you know I have always been a "balls to the wall" "go big or go home" type of woman... That hasn't changed-thank God.
The only reason I have made so much damned progress is because of that mentality, because I am so hard on myself.  I'm fully aware that at times it makes my new reality hard for me to cope with but getting comfortable with anything less than a 110% recovery would be harder. This is a part of me that I am most grateful to have not misplaced, it is what allows me to be grateful for this journey and all that is coming with it, it is what keeps me hopeful and ultimately stops me from slitting my wrists at my darkest moments.  I just need people to stop trying to beat it out of me with a feather pillow.  I fear that if they succeed then that is when I will have lost myself, this battle and when the stroke will truly have broken me.

SHANICE-YESTERDAY

What I want... bottom line

I've just fully realized that from a committed relationship all I really want is a full weekend every other week. Oh we still need to be monagamous but one full cupcaking weekend every other week is just enough to be a big part of each others life without making them your life.

More work...

I decided to accept an invite to go to Vegas with my friends knowing I had no money. My amazing mother surprised my with some funds before I left and my generous friends were willing to cover me as long as I wanted to go. I am blessed, humbled and blessed. That being said I have recently been weaning myself off of my cane only really using it for three gym now but anticipating a ton of walking I brought it with. My friends were infinitely patient with my slow gate and finding transportation when I was about ready to collapse but I only had one good day/night in me needing to veg out in the hotel room for the remainder of the weekend missing a lot and trying not to dampen the spirits of my friends that were desperately trying to figure out a way for me to rally if it was just about my leg being tired I would have considered letting them rent me a wheelchair, but it was everything. The lights, the smoke, the people, the sounds... Imagine how overstimulated you feel in that environment after a while and multiply it by a hundred I did okay but I still obviously need a lot more work before I  can feel confident that I'm enriching the trip for my loved ones and not just making more work for them.

knowing...

I know so much more about myself now than I ever did before. I thought I knew myself, all there was to discover but I was so off. I now see all the things I never gave myself enough credit for. In knowing how far my deficiencies reach I have a better grasp on all that I took for granted before. But I now see the strengths I've gained that I pretended to have before. I've found that I was wrong and "they" were right; you can never fully know yourself until you completely loose yourself. You have the marker of who you were (now in high definition because you're finally seeing it objectively), the unavoidable heightened awareness of who you are now, and the birds eye view of the dynamo you are becoming as the two merge.

Adele - Set Fire to the Rain Lyrics

between...

I toggle moment to moment between being proud of my progress and frustrated that I still have so far to go. Between wanting to just try to go back to work and wanting to focus on waiting til I'm actually ready and going to be successful at it. Between thinking I'm ready to move on and not wanting to give up hope that I didn't fall alone. Between being elated that I have soo many loved ones wanting to help and disappearing so I'm forced to sink or swim on my own. Between feeling confident and sexy and like a handicapped, fat, eye sore. Between wanting to surround myself with people and retreating into my shell. Between tears and breathlessness. Between manic productivity and draining despair. Between in love with him and hating him for chasing me then ultimately not wanting me. Between graciousness and anger. Between the yearn to prove myself and giving the finger to those who assume I've lost my motivation. Between wanting to teach others through my life and wanting to fade into invisibility. Between wanting to, needing to be loved and wanting to, needing to be forgotten.

for every two steps forward...

... I apparently take three or so great leaps backward. I need to stop trying, stop doing my best, just get it done and grow the fuck up already. I talk a good game and now it's time to mount up.

A few nuggets I've picked up along the way...

...Are, as of recently; stir-ups should not ever come back into style, if you're not sure that they care, they don't. 1993 called, they want their scrunchies back.  Camel toe is not ever acceptable. If vulnerabilities are visible keep it tight and try to put your best foot forward.  Though there is an exception to every rule, you're probably not it.  Your parents were right, staring is not ever okay.  Make sure all in your heart know how deeply they reside and what their respective roles are.  Be clear, most times attempting to spare ones feelings ends up hurting them more.  You'll drive yourself crazy trying to figure out the motives of others, just take 'em at face value.  Can't take yourself too seriously, you'll only get wrinkles.  If you can't laugh at yourself first you're got no right laughing at others.  You'll never know how much you can handle, or how far you can go if you give up. Just because they love you doesn't mean they get a say. If they didn't ask for your opinion, they probably don't want it. Life's too damned short to love halfway or hold back scared. If they don't like you fuck 'em, just one less Christmas card to send. First impressions are mostly bullshit but gut feelings are always best heeded. Trusting your cynical side is not always a negative thing.  It can't always be sunshine and daisies, but you'd better absorb all the joy you can from everything or prepare to grow bitter.  Focusing on the negatives or 'what ifs' is utterly draining and an exercise in pure insanity.

is this me?

It's official; my claim for social security and long term disability have been denied. I know that most of the people currently on those benefits were denied at least three times before being approved, but do I want to continue this battle? Must I parade my inefficiencies until I'm deemed worthy of help? Do I find a minimum wage job that I hopefully won't fail at or have a mental breakdown trying to do? Is this me? Is this really all I am now, not healed enough to really work and pay my own way, but not bad enough to qualify for aid? I can't allow my family to keep paying my bills and my friends to treat me whenever they want to do something with me, so what now? Any job I could even be considered for would not pay enough for me to be financially independent and my brain is not healed enough for me to go back to school so you tell me. Somebody please fucking tell me what I'm to do. My recovery is slowing, my morale weaning and I don't know how much fight I've actually got left in me. Would you take just any job, or would you do your best to be able to continue working on your recovery? Why can't I do both? Because either one takes all that I have in me, I don't have enough for both. Is this really what the culmination of my life so far comes to? Is this me?

i need help.

I'm hanging on by a thread and don't know how to keep pulling myself from the dark, I sometimes think that the most unselfish thing I can do for all that have to help me is just disappear, die so that they can move on and not have to carry the weight of a 28yr old who can't work, pay her bills, get anywhere on her own and has the intellectual proficiency of a second grader with an adults vocabulary. I got denied for soc sec and LTD but am not well enough to even correctly fill out job applications. I feel so alone, like a burden and I don't know how to make myself any better. I feel like I'm spinning my wheels but don't know anything else to try. Hopefully my new doctor will have a fresh perspective and be able to offer some guidance. I just don't understand why I survived something that 90% would not have if I am to just be a drain on those who've chosen to stand by me, it doesn't seem fair to them, or worth the effort and strain...

???

Going to see my new doctor tomorrow and I'm probably going to bombard her with too many things that I want to go over. I was talking to a friend tonight explaining how challenging it is for me to fill out the simplest of forms; I can write here but with a pen and paper or having to answer questions is next to if not (at times) not possible. I attributed it to my heightened anxieties but he pointed out that it may also be in part to information retrieval deficiencies. The thought never occurred to me but makes sense; now I'll ask my doctor how to work on it, if I should in the meantime attempt to work around it and job hunt or if she has a third option. I also need to address my heightened anxiety and insomnia. I need to get a referral for a therapist, I need to have her look at the still faulty sensation in my left side and... It's funny, it seems like a never ending list in my head, weighing on my shoulders but when I try to purge all of it only the tip of the iceberg shows up for the party. I know there's more, I think there's more... I feel more. I feel like I'm a breath away from throwing in the towel at any given point. Like I've stagnated and I no longer know how to push forward and actually get results. It's like I'm butting my head against a brick wall and I don't see a way around it. I was told the other day by a friends mother going through health crises that I give her the strength to keep fighting, that my determination and positivity are what she holds at the forefront of her mind to get her through. I feel like it's undeserved. I will not tell her that and make her see my self doubt; I refuse to show her how to plant those seeds of her own but where is that Pollyanna phase? I need it back, they come fewer and farther between; I'm wondering if my stagnation is a self fulfilled prophecy. I fear it so much that I've focused it into fruition... no fucking way. This WILL NOT beat me. I may not be sun-shiny all the damned time but I am not going to settle for the current state of things. I will continue to get better and my life as a whole will be better in a year from now. This is not where my story ends, it is not. THIS IS NOT WHERE MY STORY ENDS.

Adele - Set Fire to the Rain Lyrics

What if...

Who decided that "settling" when talking about love or relationships almost always comes with negative connotation??? What if it simply means deciding to live your life from that day on, taking your circumstances and running with them.  What if "settling" nods to choosing to be happy with what you've got while still reaching for your goals???

just what I needed

Every prior trip to the bay my focus had been quantity, not necessarily quality. I would try to catch up or 'catch up' with others as well as selfishly hog as much family time as possible. The family I made, the one I chose, this visit I was just soo battered and vulnerable I could not even fathom actually spending time with any other than my family and those intertwined in their weekend. It turned out to be just what I needed. AND I got to visit with a "new" friend and her two adorable children; amazing chick, beautiful family... she turned out to be just what I needed; sincerely hope she gets as much from this as I do.

Nin...

I miss you, I miss being able to calmly and rationally, not to mention effectively get my bottom line across to you. We are so different in the best ways, but have so much love and appreciation for each other that it's a whole in my heart. More than any of the 'hims' could ever effect me. I know you're busy, but I also know that you are hurt, frustrated, betrayed, at your wits end, confused and tired. I know all of this and I fully accept responsibility but please just read further, even over time please read this in it's entirety and try to really believe me when I say that all of my blog is raw, utterly honest and terrifying. But I need my sister back, the one I didn't disappoint and hurt. I know that it's selfish and unfair but I will do whatever you need me to to even see if we can get a semblance of us back. I love you.

Change

I'm gonna stop looking for love and focus everything in me to finding myself.  I am starting to see glimpses of the dynamo I have the potential to become, and am working on how to merge my beloved qualities from pre-stroke Chisa, my current self and the woman I see in my dreams. This is about me getting better, that's all I need to be focused on... Anything else is just unnecessary heartache.

tick, tick...

I went to a doctors appointment with my mom where I found out that I've had family history of strokes (bleeds not clots) on both maternal and paternal sides. Well crap. I now find myself somewhat mourning a child I wasn't ever completely positive I would end up having. I know now that having a child is not in my future, not only because of health risks to me from previous things but more so because I can't see sentencing my child to this same fate. I have always thought I'd adopt if anything, but it's a little disheartening to know that I really will never have a mini me. So if I wasn't his and her towels grow old together material before, I think this pretty much seals the damn deal.

Adele - Set fire to the rain Lyrics

all that I am...

I am not a victim, a fuck-up, a warrior or an inspiration. I am not a liar, paragon of strength, or beacon of hope. I am not the best example of what not to do, nor am I amazing. I am not a cautionary tale, or a model for resiliency. I am not a one dimensional set of characteristics you try to pigeon hold me to. I am what I am, and that's all that I am. I do my best and strive for recovery in every moment; I fight the loneliness, exhaustion, despair and stagnancy all the time. I give as much back as I can, I pay it forward every chance I see and all I want is to no longer be judged. Negative or positive it doesn't matter, I'm all those things and none of them at all. I just want to fly under the radar for a while and not be asked to explain myself to anyone who pretends to care.

enjoy...

When I got discharged from my outpatient therapies I distinctly remember my therapists reiterating that nothing will aid my recovery as much as my life would. "Go out there and remember how to be young again, remember how to enjoy your life, enjoy who you are..." Essentially trying to make me see that running through my exercises and brain games while hiding out wasn't going to do me or my recovery any justice. I have been working hard at doing just that, I do what I can, take care of what I can and make a concentrated effort to enjoy everything and everyone to the fullest. I'm tired though, I'm tired of having to work at enjoying myself. I know that I say this a lot but it's the absolute fucking truth; hard I can handle, I'm used to hard I'm just not sure I have the endurance to handle EVERYTHING being hard and EVERY FUCKING THING being THIS hard. I'm not trying to get through this, I am getting through this... it's just so damn tiring.

so sick...

I'm absolutely sick of loving you, sick of being the one who cares, who understands, who's always fucking there. You either care or you don't, you'll either reciprocate or you won't. You either want a part in my life or you fucking don't. Stop pretending, no more bullshit, just leave me the fuck alone if I'm no longer worth a man sized effort. I'll no longer make or accept excuses, I'm done teaching people to walk all over me and treat me like a back-up, a safety net. Handi-capped or not, over weight or not, I do not actually need you, each day that I leave my house I get reminded that I'm a catch. That I am still worth everything. I'm sick of our same old games it's tired and so am I. Thank you.

Incubus at Raley Field 10/11/11

Absolutely loved the show, they played a lot more of their older stuff than I expected... SCORE!!! But it's so hard to remain positive about everything when I walk away feeling like more of a make-a-fuckin-wish kid than ever lol.

Bush - Comedown (w/yrics)

like myself...

yeah I miss you, yes things are hard and I desperately want to fall back into old habits... But I know what I want, and it's not just a relationship, it's the who with that matters, if not I'd have some bullshit relationship already. If you cared in the way I do, or as much as you think/say you do- the scared wouldn't matter; you'd need whatever time you could get however you could get it, platonicly or not. At this point I'm about ready to throw up the white flag, fine I'm with you casually or monogamously (in my bed)... however I can have you; but if I did, I wouldn't like myself very much anymore. And that's become the sticking point.

running parallel...

ever notice that with certain individuals your close to; that your personal 'current events' while not seeming similar often boil down to the same things?? I have a few close friends who are all facing their own terrifying new beginnings while I am attempting to muddle through mine. I say it's a testament to the love we have for each other that we continually get through and pick ourselves up; not only for ourselves, but for each other. That we offer support for one another from the same stores that have long ago gone dry for each individually. I say this but truly mean it each time... I am blessed.

they all said...

they all said just get it over with, if you're ever really going to get over him you have to take that first step; just be with someone else. Just get over the initial hump and you'll feel better, it'll be the start... so why do I now feel worse than ever?

Feeling bluesey...

Random Chisa fact number 113: I'm overly affectionate... I have determined that my latest bout of the blues is thanks to my self imposed celibacy. I'm now getting back into the dating game but I went from cuddle time
on the regular to none at all and I am lonely. I need affection...

more "firsts"

I have compiled a list of significant "firsts" (things I have accomplished once again since the stroke; activities I've had to work hard to be able to successfully attempt again), well at least the ones that came to mind within the past month or so. They come fewer and further between making them feel more 'hard won'; but are in my opinion giant leaps... "FIRSTS": -lanis bday 1st slow dance w/ george -stocks costume bash 1st time waling in boots w/ slight wedge all night; also cane free -lani's bday 1st slow dance with George -11/10 dusted ceiling fan blades standing on floor made friendship bracelet in 1hr started coloring again; finished pic in 1 hr -10/28 drew entire page collage -10/25 read entire book in one day