welcome to katie [yeap ... for now katherine is gone ...] berke's website. she had a tragic motorcylce accident on july 30, 2003; we have been beside her assisting her tranformation since. take a moment to read her journal entry, download a recent news article, learn about tbi, or see about ways you can help. thank you for visiting.

ktb status::March 2011

it has been most difficult to update this site for numerous reasons, among them ...
1. hoping against odds, i’d want to paint the quintessential picture in which, regardless of traumatic events, we do walk off into the sunset ... learn from our TBI experiences, adapt to living with it, write a book to help others from lessons learned ...
2. as the consummate optimist, i strive to learn and grow/evolve from life’s experiences and refuse to be shattered by them.
3. i’d rather not expose our challenges in such public arena.
4. i’d rather not tell; i’d rather not ask ...

then i remember that no one will come knocking on our door offering the much needed help, and i have endured living with the effects of severe frontal lobe brain injury lacking resources as long as humanely possible. living with a situation that has reached a toxic saturation point beyond capacity causes me to reach out.

i am very aware that to those who do not know about frontal lobe brain injury or have not spend a week, a month or more caring for katie cannot comprehend and appreciate the complexity of the situation at hand. appearances can be so deceiving: she walks, talks, appears smart, can carry on a conversation, remembers jokes, and can even be polite. that is only a fraction of the picture. had i not been forced to become aware of the effects of frontal lobe TBI, i would not have a clue either. this is an awakening of the rudest kind.

to promptly address the statement from many well-meaning people, “put her somewhere.” one suitable place, Center for Neuro Skills [http://www.neuroskills.com] where katie can receive the much needed residential cognitive rehabilitation costs $1,700 to $2,000 daily. while this rehabilitation will not ‘cure/fix’ her TBI, it is the only treatment that would re-program, re-pattern her cognitive skills offering her the best rehabilitative possibilities for a quality of life scenario. i offer an open invitation to any caring person to make this happen for katie. due to her 24/7 supervision needs based on her cognitive/behavioral deficits, our current options are most limited at best: jail [further aggravating traumatization], napa state hospital [where rape, murder, stabbing, understaffing, drugging, etc. make it undesirable], or homelessness. according to her neuropsyche doc, if i was not caring for her, she’d be homeless and dead in no time. there is no residential care facility for adult disabled people with TBI lacking deep financial pockets. anyone is most welcome to do research and come up with an attainable option for us. fact is that we are one of many nationwide cases lacking proper care for those living with frontal lobe brain injury; read the research article by usc journalist, elizabeth simpson, revealing such truth: http://www.reportingonhealth.org/fellowships/projects/residential-treatment-traumatic-brain-injury-victims.

thus, i expose our circumstances out of necessity/survival reaching out hoping to create ‘the village’ needed to care for this disabled individual, who happens to be my daughter.
recently while pursuing answers and solutions to our dilemmas, i was frankly told by a bureaucratic stranger pounding the ‘institutionalize’ drum, “there are no happy answers here; there is no way to make it pretty; you have a hard, ugly decision to make; they have to be kept in medication; you have to look at her in a new light; she is a danger to you; you have a responsibility to keep you safe.”

to say that the situation of caring for katie [the katherine period ended] has drastically deteriorated is an understatement. likely, the combination of her brain injury, katie’s multiple traumas, the iatrogenic effects of the psychopharmacological care, changes in katie’s routine and lack of access to cognitive rehabilitation got us here nearly eight years post-injury.
while katie’s severe traumatic brain injury affected her parietal, anterior frontal, anterior temporal and occipital lobes, her thalamus, pons, and brain stem and left mild encephalomalacia [cerebral softening due to trauma] most concerning is her injured frontal lobe. among other things, our frontal lobe controls our executive functioning [ability to reason, initiate, organize, problem solve, etc], personality, emotions, motor, and so on. in katie’s case, this translates into severe cognitive impairment, agitation, perseveration, disinhibition, fixation, compulsion, fabrication and confabulation. simply, similar to a toddler trapped in an adult body with adult experiences.

i’ve been told by a TBI expert doctor, ‘she cannot control herself; her environment has to be controlled for her. her behavioral stability is dependent on routine and daily structure.’ changes to her routine, moon phases, menstrual cycle and energy levels affect katie’s behavior and agitation. given that i am the one doing most of 24/7 care, she is most likely to ‘act out’ with me.
in january numerous events lead to an agitated episode involving a knife leading to katie’s arrest on felony charges ‘for an assault with a deadly weapon.’ she spent six days in jail until a family friend posted katie’s bail after seeing her rapid deterioration while incarcerated. since that infamous day on the 7th of january, the district attorney’s office continues to put a great deal of effort in prosecuting this ‘crime’ wasting untold amounts of taxpayers money even though i [the so-called ‘victim’] have requested the charges dropped and doctors submitted letters explaining her severe disability. after some eight appearances in court before judges, the good news is that considering her severe disability, the charges were reduced to misdemeanor. as her public defender put it, ‘this is like prosecuting a two-year old for having a fit and tossing a knife.’ yet the charade will go on for some time, perhaps over a year. i am told that is how the system works; ‘it takes a long time to get cases solved.’ i say it is a waste of resources/money. i was informed that the judicial system is no place to get the needed help for my disabled daughter. their job is to put people behind bars. proof is that even in jail, they could not provide for her medical needs, nor keep her safe.

i argue that what we need is more care to provide for her wellbeing. we need two more people doing the 24/7 care [as in three people doing eight hour shifts]. it is the humane thing to do.

to those beating the psychiatric and psychotropic medication care drum, i invite you to read the following books:
1. unhinged, the trouble with psychiatry by daniel carlat, m.d.
2. your drug may be your problem by peter Bergen, m.d. and david cohen, ph d
3. anatomy of an epidemic by robert whitaker
4. in the realm of hungry ghosts by gabor mate, m.d.

and read dr. loren mosher’s resignation letter: http://www.moshersoteria.com/articles/resignation-from-apa
then, let’s have an educated conversation on the topic.

i do believe that doctors, in general, have good intentions for their patients/clients. and i recognize that their expertise is limited to the established protocols. after years of enforcing katie’s compliance with her psychotropic medication cocktail, i became aware of the potential damages from them, the further injury to an already severely injured brain that we were working so hard to heal and rewire, and the undeniable iatrogenic effects [unintentional harmful effects due to medical intervention]. for instance, only her jaw surgeon acknowledges the undesirable effects of these drugs from witnessing her tardive dyskenisia, while other doctors dismiss it. in 2008 we started the process of withdrawing her from these dangerous drugs going from twelve medications down to three, from costing taxpayers over $12,000 annually on prescriptions down to just over $5,000. It would be a wonderful world if instead of using that money to medicate, we could use that money to provide a quality of life with things such as acupuncture, massage therapy and yoga classes.

this year, we learned that due to katie’s tardive dyskenisia, her jaw joint is deteriorating causing the numerous jaw surgeries and arduous processes to restore her teeth to disintegrate impacting her eating abilities. for now, a pricey mouth guard on a monthly payment plan is the only tool to keep this humpty-dumpty’s mouth from completely falling apart.

tired of reading? ... i understand.
if it was you in katie’s position, how would you like to be treated or cared for?

after all these news, you ask what is needed?
1. cognitive rehabilitation at Center for Neuro Skills
2. caregiver help, the village ...
3. book partner [go to motorcyclecatapult.info]

reaching out for ‘the village’ to come through ...
may love, peace and compassion reign.
veronica

i surrender

i surrender
and accept that my love, commitment and acceptance
could not make her better
i surrender to my breaking heart
while obliviously she sits
and edits her recipes and list of neglects
it feels like un unimaginable nightmare
that i thought i could always endure
for sure my naive belief
that my unconditional love and strength would suffice
but not for now
that i am called to turn her over to the cold, indifferent world
that only damages her more
where are these outcast beings to go?
who is responsible for them?
if they cannot care for themselves,
then who shall?
i remember over seven years ago
the in-between-worlds communication
we had via spirit mediators ...
she hesitated coming back
fearing hard work and being a burden to me
i reassured her
hard work -and then some-it has been
has she been a burden?
the most difficult challenge in my life
without a doubt
and i come from the school of hard knocks
i chose not to view her as a burden
yet she seems broken beyond repair
from whatever her innate form was
aches me to see
that beautiful child gone so disarray
i see glimpses of her
then again i am her mother
the one who wished for her
the one who nurtured her
nursed and carried her
guided and protected her
and perhaps even failed her
for now
once again barren
red faced
broken hearted
i fail to see the good to come
from a nearly
eight year-old tragedy
filled with hope and best intentions
while against all odds
tired of advocating
tired of cuing
tired of coaxing
tired of redirecting
tired of believing
tired of pretending
tired of protecting
tired of caring
tired of nurturing
tired of healing
tired of being
tired of hoping against it all
now even tired of being her door mat
i surrender
though the cracks get only deeper
i surrender
devastated and heart broken
i surrender
while she knows not the ax coming
i surrender
to the great indifferent abyss
i surrender
to the breath of life
while knowing in my heart that
death would have been kinder
i surrender
to whoever the hell is in charge
for sure it ain’t me
::veronica

february 5 2011
surrender ... again

i’m too tired to care
too tired to continue trying
too tired to look for the unfound solutions
i’m so depleted
i surrender
the will to fight
the will to go on
she takes my all
and i feel so alone
in the vastness of her
moment to moment care
the life-depleting,
never-ending demands
that no one else understands
i’m nauseous
of brain injury
of doctors
of tricks
of abandonment
i’m barren of hoping
and dreaming
of positive thinking
of accepting what is
of trying my hardest
of caring
the load is
too damn heavy
this i admit
i’ve grown
in despair
while there is not enough air
trapped in the trappings
of misfortunes
beyond survival
i’m still breathing
my heart still beating
with fluttering pains
i’ll carry my corps
but i can no longer
carry yours
unequipped and vulnerable
release you to the predators i must
trusting the divine order claim
that i struggle to understand
the light and darkness
the love and hate
the sweetness and bitterness
you so aptly discharge
neither angel nor demon
is your charge
my love and kindness are adrift
gone with the storm
that thrashed our souls
disliking feeling burdened beyond repair
turn off your brain
i’ll shut off mine
perhaps then
we can once again
feel joy
and share a dance
::veronica

ktb status: June 2009
the years fly by while we are evolving ... the rest shall be revealed in the book. the lastest and most significant grand event is katherine [she has transformed in that way too and dislikes being called 'katie'] is that after all these years of hard work, she finally got her permanent top teeth on May 5th! now she only needs two bottom front teeth. she is having speech therapy to learn to chew and eat, as she got used to sucking/gumming her soft food regimen. kudos and many thanks to all those who helped in this part of the journey :)
let me just show you how pleased katherine is with her new teeth instead ...

following is a thank you letter i wrote to the community and sent it to the local papers, although i reckon it was not published. the intent is simply stated:

May 6, 2009
A Heartfelt Thanks
Thanks to the people in our community- extending all the way to Santa Barbara- who responded to my A Call For Help letter back in September 2004, today my daughter, Katherine (a.k.a. Katie) Berke, has teeth to eat with. In particular, Mr. Raymond Moccia, a Banyan Elementary School teacher, whose activism led to organizing Smiles for Katie fundraisers to assist with the extensive multiple reconstructive jaw surgeries that she needed for eventual dental implants so she could have teeth. Mr. Moccia was Katie’s 6th grade teacher in 1992, and upon reading about the effects of her motorcycle collision in July 2003, he decided to help. His efforts brought together an extensive team including the Bobcat family from Banyan, Conejo Dental Group, Redmond/Buto/Alter Orthodontics, Dr. Shore and the press. Berney Tamborello, our friend, linked us with The Center for Corrective Jaw Surgery in Santa Barbara.

At each appointment, whether with Dr. Gunson, Dr. Tamborello, Dr. Arnett, Dr. Bienstock, Dr. Redmond, Dr. Buto, Dr. Alter, Dr. Shore, Dr. Zweig, Dr. Chen –and their too numerous to name outstanding, caring assistants and office staff, we were treated with dignity and utmost care. For each surgery scheduled by Drs. Gunson and Bienstock at Goleta Valley Cottage Hospital, their team- including the anesthesiologists- took diligent care of this “scientific masterpiece” (Dr. Gunson) in the making.

It has been an arduous journey of far more than a thousand steps, thousands of miles, numerous surgeries, bones restored and lost, pain-ridden days-a-plenty while forgotten thanks to TBI, altered states, yet all surrounded by love, jokes, tears, frustration and laughter. Thanks to the collective effort to restore her teeth, now Katherine will learn to eat and enjoy everyday food; something most of us take for granted.

When I brought Katie home after her long coma from her severe Traumatic Brain Injury (TBI), doors where closed regarding her teeth restoration due to her very complex case, lack of insurance and funding. I refused to accept this reality. Her life was saved not because we asked, but due to circumstances beyond our control. Since Katie was meant to live, she deserved teeth regardless. I accepted the fact that the driver and driver’s family were unwilling to assist and chose to move forward believing that help would come from the goodness that does exist. It did.

A heartfelt THANK YOU to each and every one who joined us in this part of our journey. Blessings of good health, love and peace to you.

Verónica Martain-Haverbeck
Newbury Park

veronica

ktb status :: november 10, 2007
updates coming soon.

ktb status :: july 31, 2006
day 1095
today i remember -as if yesterday- that infamous phone call which changed our lives as we knew. it sends a chill down my spine remembering her disfigured, lifeless body. and then, damion’s and his mother’s unforgettable betrayal – is raw acid upon wounded flesh. my career and dreams brought to a screeching halt, because i chose to care for my daughter rather than abandon her to a life of institutionalizations and abuses.

this year we celebrated her third re-birth among other survivors, as it was our hugs night. it was most appropriate indeed.
in her ‘bils y pap’ world, everything is great. her big smile proves it. and of course, it will be even better when she gets all the gold and precious jewels –diamonds, sapphires, and rubies- she has been asking many for. she wholeheartedly believes that just because she survived a 45-day coma she deserves these jewels. all the while, i have been busy intercepting these emails, letters and phone calls, but many have gotten through.
professionals, phd’s, and experts would fail to see only what her mother could easily decipher: her quest with all that glitters and is gold is her desperate reach for what she lost and does not know how to express. yet silently in her own abyss she knows all too well the mourning of the loss of her beloved face that she adorned with such intricate delicacy from a young age, and for which she was valued so much and pursued by the opposite sex. and then, there was her proud $3,000 perfectly straight, bright-white teeth smile which she wore with such pride. how many times has she cried to me in this lifetime that she has no smile and no teeth? countless. of course, almost daily my reply to her is something like,“but you do have a beautiful smile and do not ignore and discard the teeth that you do have darling.”

this month we celebrated ktb's 25th natal birthday and together with her 3rd survivor birthday. i saved up for a special journey of sorts. using jet miles, we took a sojourn to reacquiant ourselves with my foster family in seattle -the hayes. also, we were eager to meet her new 'e-friend', ben, who is also a miracle survivor of a motorcycle collission. his mother, julie, found katherine's site, and they have been in contact ever since. julie has been like an angel to katherine, as her daily communication with ktb is truly priceless. ben's progress is quite remarkable, and this year against the odds he was able to get his aa degree. you go ben!

finally, our days still include our walks with our beloved dog buddy and our regime of scrabble, othello, and possibly rummikub. we kiss and hug, and i tire oh so of what she will or not eat. the rule still applies: take it or leave it. our weeks are always dotted with doctors’ appointments and medication management; and i spend countless hours on the telephone doing advocacy work fighting for her life-dependent benefits.
::veronica

ktb status :: june 2006
working outside katie’s window doing my ritual sunday gardening, i heard her call one of her friend’s from her previous life. “hi, this is katherine. i miss you.” this triggered once again the many thoughts that had been dancing my head for so long bringing tears to my eyes. it forced me to stop my beloved ritual, as i needed to tell some of what had not been said. would anyone care? Perhaps not, but more importantly, it is a story worthy of telling for my peace of mind, for her dignity, and in honor of the many other tbi survivors who may have had similar experiences.
yes, she did survive. and, as i have stated before, the metamorphosis is all too real.

KTB – Survivor of TBI
What she has gotten and not gotten:
A life saved by quick-acting, good samaritan -doctor wareham- and respiratory therapist at the scene of the accident
Never got the proper eulogy for the person we knew, loved and lost on that infamous night on the asphalt of the 101 FWY and Rancho Road on 7.30.2003
Received compassion from strangers
Lies and deceit from driver and his mother, in addition to abandoning all financial and moral responsibility/obligation for causing a life-altering permanent disability.
A transformed life that continues the transformation;
Yet, WHO SHE WAS NO LONGER EXISTS
A caregiver beside her at all times
Permanent partial vision loss
Lifetime social security benefits as a disabled survivor of Traumatic Brain Injury
Permanent loss of ability to drive
Stared at as some sort of freak person in public places
Been forgotten/abandoned by friends/acquaintances from her previous life
Received generosity from the kindness of the community and strangers
Lost ability to ride a bicycle down the street or in Yosemite or wherever
Been called a hero
Lost ability to smell, and how she likes perfumes anyway!

:: veronica