Monday, November 30, 2009

Webcam video from October 6, 2012 12:55 AM

Wednesday, November 25, 2009


Every new adjustment we need to implement, devices I need to start using again, all feel like failure.  I know it's not; and miraculously the love of my life knows it's not as well.  I however find myself deeply panicked... I told him I was going to get better, I do not have it in me to quit and I'll fight for 110% EVERYDAY, until my last moment, but am I being unfair to the man that loves me but signed up for a progressing partner?  He tells me that I'm the only one that has a problem with the things I cannot do again (yet), but I can't ignore the fact that since we've been together my mobility has decreased.  The way I was pushing my body would have caused it regardless, but miraculously I have someone willing, more, wanting to be the one who helps me do what I cannot yet.  There are soooooooo many not as fortunate as I find myself, I am more grateful and appreciative than you'll ever know but I need to regain my forward momentum so he can have the love he deserves as well.  I fear my love may have been accidentally bamboozled.


My prescription has lapsed, due to my mobility issues and unreliable transportation from others I was blessed with prescription delivery.  It is an amazing service but for some reason I have been off my meds since Friday waiting for my refills.  I know actually KNOW that all of this emotional upheaval and dizzy spells stem from my chemical imbalance but do you have any idea what it's like to know why you're feeling crazy but still have to FIGHT OFF doing something rash because you feel that fucking crazy??!?!!? I can't sit up or walk without it being dangerous because of the lightning storms going on through my body and they make me soooooooo dizzy that I fall. At the moment I'm waiting with baited breath for the knock on my door letting me know that sanity through pill has arrived.

Tuesday, November 24, 2009


I have what I'd been yearning for, in a package I'd never expected. I have had almost a week without my efexor (anti-depressant) an unfortunate timing accident with my pharmacy and literally reached BAT SHIT CRAZY. Knowing I was being insane, but without any tools to control it, couldn't do a damn thing but try to ride it all out; which was terrifying enough to cause panick attacks.... Whhhaaa I know... gimmie a chance... it was just what I've been needing; to have someone, a love to hold me (physicaly at times and metaphorically) because he wanted/ needed to make what he could, better. Not out of pity, but simply because he loves- me in particular. No judgement, just taking care, with a empathy and gentle touch I'd always run from. Who would've thought that opening up to the right guy ang exposing your vulnerability to someone who loves YOU; not the way you make them feel about themselves, not the way they feel when they're with you;but you just for you; beautiful, damaged,and scary at times. I'm loved by soneone who enjoys my need to unleash all the love I feel for him, and recipriocates in turn without smothering. It's miraculous with just enough gritty to make it the real deal, a game changer. Thank you, my fight does not seem so daungting; to face life while fighting for it seems like an amazing blessed phase of my journey now having completed my support system (fambam and TRUE friends). I was always gratefu, just not so overwhelmed now. The moral of the story? Let people help. No matter how hard it is for you,let people help. No matter how terrifying it is for you, let people help. No matter if you're worried they'll get tired of doing so, let people help. Please try, it's just what you need no matter how unsettling it may feel, it's what you need. Everyove needs help with something; so help and allow yourself to accept help offered freely and with love or respect.

Monday, November 23, 2009

Food for Thought

Sometimes we have to be broken into nothing in order to truly find ourselves; finding strength to ke... -

Peace With Myself...

I've been lax lately with my work out regimen, yes I am more sore and yes, I'm CONSTANTLY over stimulated but I can push myself more. I just haven't had the "drill Sgt. Bush", grit your teeth and push through EVERYTHING energy or focus. I don't know if I'm recharging myself, or allowing stagnation to consume me like quicksand... How does one find the balance? I can only figure that as long as I can look myself in the mirror and not automatically self chastise, I'm good. Hopefully. It's naive to think I would be able to maintain that pace through everything. In the end I am the only one (other than God and the universe) really paying attention. I had better do what I need to to make peace with myself. At least we know one thing for sure; letting go of the notion that full recovery was recognized- in part by reclaiming the mentality and notions of my pre-stroke self is one of the biggest, most significant of my recent gains. I find my view of myself incessantly shifting. The value ultimately stays the same but perspective, focus and plan of attack are very fluid ideas, I actually think it’s a healthier mind set... more of an acceptance of what is rather than faking the funk until you lose sight of reality and half-ass convince yourself that you've actually done the work to change in the ways you'd like. Cynicism seems to be in the forecast for today so I'd better cut this one short before it leaks onto those that have to deal with me in real life.

Wednesday, November 18, 2009

Distracting Myself

My knee has UUGGGGHHHH given out again and so to thwart any impending irritation and intense pain I am distracting myself by writing this shallow blog about a parallel in my life that I drew from a movie I watched alone last night... Bear with me; I watched Savages and the narrator of the story female lead, O (Ophelia) is in a relationship with two men, two polar opposites; a passionate, peace loving soul and her wounded solider... home after deployment physically amazing and hints of his former deployment self but cold, private and no longer anything but a solider. Peaceful makes sensual, passionate love, and the solider fucks, fucks to reclaim something, to get the dark out of his system... They each give what the other doesn't, allows her to nurture in ways the other can't. Together they are complete, she is the home each of the never had and they were hers and she loved them equally, died and slowly starts to live again.(If you're understandably confused watch the movie, I'm no spoiler!) It dawned on me that I had that in my pre-stroke life, two great loves though I was dating them separately with blurry bouts of juggling. My passionate loving, affectionate man of the earth. The wood to my wounded warriors steal. They had each held my heart completed some parts of me, separately and at times simultaneously when I'd alternate visits. Like O I loved wholly complete in the giving of myself and heart and then I died. That Chisa suffered a severe AVM stroke and a bare bones fixer-upper version survives. I am now leaning to live again all while trying to fight my slowing recovery progress, resolved to getting back to a hundred. I am learning to not only live again but I am learning to truly enjoy my life. I lost all my walls and now cannot pick and choose what parts of myself I show people. They see me 100% all the time, however that may be moment to moment. And through this gut wrenching vulnerability I have found one man that is the counterpart to my symphony of idiosyncrasies and loves as I am now, no pressure to get better but an amazing amount of bolstering and encouragement to reach MY goals of recovery. Most that care have their own idea of what fully recovered Chisa is like, but he only cares about my version, helping me whenever and however I want and, even though it's clearly a battle for him, let's me struggle through it when I want to. All Because I just showed him me with no filters, no editing. I'm living again and love my life. Honestly love my life. I love the challenges I face, the battles I don't know how to fight, the constant intense pain, the long road ahead of me, the lessons I have learned, relearned and will learn. I love my new perception. The new quality in my life, the honesty good and bad, the purge of those I miss and the ones I've forgiven. I love every bit of my slow paced, fixed income, love and laughter overstimulating life. I'm glad I died.

Saturday, November 14, 2009

Video post #10

Sorry This Took So Long...

I couldn't figure out why I was having trouble starting this letter... Since my AVM stroke three years ago I have spoken to countless people about my newly found lessons learned and experiences thus far. But then I think that there is the crux of it, 'my experiences thus far'; I was trying to talk to you about an obstacle I had overcome, something I had already worked past but three years later and I don't think I'm halfway there yet; and I am so very grateful. I "surfaced" (first REAL moment of consciousness since being admitted to the hospital, and after brain surgery- where they drained 200ml of blood from my skull cavity) and was presented with the knowledge that I had just survived a severe AVM stroke and lost all function and sensation of my left side head to toe; with lots of hard work I may be able to walk again. My first thought was "Okay, where do we start?" It was daunting but if there was a CHANCE I could earn any of it back I would do all I could to ensure success. There wasn't room for 'why?', 'it's too hard', or acceptance... There isn't room for 'why?', 'it's too hard', or acceptance. This is just another chapter, life does not stop because this happened but now we have the coveted opportunity to take the time to earn back every single blessing that was taken for granted. In one swoop I was taught that I had become very spoiled, caught up in trying to be everything to everyone and collect as many moments as possible. The Lord reminded me that every breath, every pain, every single thing is a gift; a blessing that can be taken as easily as it was given. But in that I was bestowed the greatest gift I'll ever be honored with... the chance to earn it all back. At 26 I got to earn back my privacy, my ability to talk, walk and go to the bathroom alone. Everything is a gift, a blessing. Let me reiterate, EVERY SINGLE THING is a gift; the ability to earn your life, yourself back, all the pain, all the struggle is a gift. Each day you wake up, every day you have breath in your lungs is an opportunity to fight; fight your circumstance, fight your disabilities. No one can recover for you, no one else can get better for you. You are the only one who truly suffers if you do not regain your quality of life. Every task I take on is hard, absolutely exhausting, but the more I do them the easier they become. I am not going to lie, this is the fight of your life, the fight for your life; and I ask you, if this is not worth giving all you've got, what is? What will be? Have I wanted to give up? Yes but for no longer than a moment at any given time. Simply because if I give up than I will for sure not ever get better, than I have already lost. We are being tested, tested by a God that KNOWS we can get through this. It may feel that for every step forward you get knocked back a few but all that matters are those steps forward that you take. Trust me, I am still making progress three years later, I still have the bulk of my recovery ahead of me, three years out. No one can tell me I'm as good as I'm going to get because they are not me, they are not you, they do not know what we can accomplish through faith and sheer determination. The day I stop making progress is the day I give up, the day of my last breath- until then I will fight. Life is all about perspective, I honestly believe happiness is a choice not a destination. You can choose to focus on what you've lost or keep your sights set on the infinite possibilities that lie before you. I know that 90% of people would not trade places with me for all the money in the world... but I'll let you in on a secret... I would not have things any other way, I wouldn't trade places with anyone or avoid this if I could. What I continually gain, what I have learned is so much more valuable than anything I have lost.

Monday, November 9, 2009

Settling in...

Pre-stroke I was extremely uncomfortable getting settled anywhere. That always seemed to be the goal,to find somewhere that felt like home, or at least felt like I could cultivate one there... but I'd inevitably get twitchy,too overcommitted, too attached; and eventually panic that they'd find their limit of how much 'me' they could handle. So I always cut out way before to a new setting. Always feeling the compulsion to leave before they wanted me gone. I know now, right now,- tonight I realized that I do not regret anyhing, do not begrudge any one thing at all because led me here. It's true though, what they say; it never happens when you're looking and sometimes where you'd never guess you'd look. But,...No I woudn't change anything. It brought me to here; and here... in this Love, in this life... with these people... I am finally home.

Sunday, November 8, 2009

A Little Reminder...

I said "When I met you it felt like I had been treading water for so long, it was no longer possible for me to keep my head above water... I was frantically just trying to keep water from rushing up my nose." He replied simply and without pause; "That's funny because when I met you, you were walking on water. It's all a matter of perspective." Sometimes we all need a little reminder.

Saturday, November 7, 2009


I had likened my neuropathy and spasticity (common, painful stroke after-effects) to a healing injury; assuming that as time went on the severity would decrease. I'm finding that while my cognitive and motor functions continue to improve with work and time passed by, my overall (or baseline)pain level increases and conversely my energy or endurance levels are dropping radically. Is it stress? Is it still my body getting used to my seizure medicine? Is it a combination of things? Is this a sign of something bigger? Should I be concerened? Oh, yeah you're right I SHOULD ask my doctors. I have,and no one can give me an answer. Every brain, brain injury, path to recovery are akin to snowflakes. Completely unique, no two alike... wow, getting this out in a way that makes some kind of sense made my head hurt. Naptime lol

Tuesday, November 3, 2009


Today marks my two year anniversary with the love of my life. He fell ill with flu, and so on our two year marker I got to spend a great day relaxing and taking care of the one person who has taken the best care of me since he first set eyes on me. I do feel guilty for reaping any benefits while he runs a fever, but it feels almost full circle to have our roles switched on a poignant day... Seems a bit, hmmm poetic. I hit my four year anniversary of the stroke I survived- and that blindsided me with a downward emotional spiral; one the likes of which I was not at all prepared for or even understood fully until I took an objective step back on February 24,2014. Bottom line, I may not be where I hoped I'd be by now, or look at all as I had ever imagined but I am also happier, more challenged, and more loved than I ever thought was possible. I am truly blessed. Even more than you know because that love,support and care come not only from Josh but my friends and famly as well. I worry though, I worry about any I hurt in the past, those that didn't make it this far in my journey of recovery, and mostly the ones who I couldn't articulate rule changes to before it was too late. I know now, and am- I think, finally making peace with the 'harder than you'd think it'd be to accept' reality that the fully recovered Chisa will not be the same as pre-stroke Chisa... not just physicaly, but on every aspect of who I am. Maybe not all big changes, changes none the less and sometimes the most seemingly innocuous variation causes the most effect to the 'big picture'.

Sunday, November 1, 2009

Hiding Out

I haven't written in a while because, well with my baseline pain level STILL on the rise, my primary care physician treating me like a drug seeker, my insurance taking ridiculously long to approve or what they seem to be doing over and over- rejecting referals to pain management specialists, and nuerologist, needing to use my cane around the house again and wheelchair when out and about, feeling like a burden to the best man I've ever loved, just off the tip of my tounge- not a whole lot of positive to say. I hide out, not wanting to spread my negativitty or let my pity party have an auidience, but I hate when my friends struggle through something alone because they didn't want to bother me; and how is this blog supposed to help anyone really if I only show the positive days? So here it is... I cannot find anything while looking into the mirror that I honestly like about myself anymore. This stroke has blessed me with a honest and consistently improving inner-self, something that I am more grateful for than I can ever explain. The outside, oh the outside though; while I've never been particularly happy with all of me I could at least fake it. I could at least pick out features I liked. When I took the time to get dolled up I felt put together, not like Quasimodo on parade. Nothing feels natural when I move, talk, anything, anymore which is kind of expected once you fall down the rabbit hole; but I didn't think I wouldn't ever feel attractive ever again. Josh tells me, shows me how beautiful he thinks I am ALL THE TIME, I am sixty pounds lighter,and yet I can't look in the mirror to get ready without feeling 'why bother', without feeling like 'you can put all the lipstick you want to on apig but...', without sometimes catching fleeting glance of myself and feeling so overcome with frustration that I wanna tear my face off. Here's the thing though, I don't thinnk it's 100% vanity, I mean sure there's a healthy dose of that in there, but there's also a loss of mojo. A loss of that twinkle in the eye, the ease of self, the individual quality we each have that our personal brand of charm, of allure comes from. I kept thinking it would like everything else improve with time,with work, with prayer... I fear though that like my pain it will just continue to get worse. Oh lord if that happens all I'll have working for me will be my personality...(knock on wood) I'd really be in trouble then. Lol.