Live for Today
Brain Injury
Support Group
The following article is the personal story
and testimony of ABI/TBI/terminal brain
cancer/stroke survivor, named Joe. His
“Live for Today Brain Injury” group is
tentatively planned for a virtual audience
and is intended to welcome and reach out to
all people living with brain injuries. Upon being diagnosed with a malignant
brain tumor in February 2002, J
oe found
himself dazed and confused, as if his entire
world were being flipped upside down. Surviving brain surgery, radiation
treatments, and chemo presented him with
some major life challenges, and he felt as if
he were losing his own “human” identity! Were it not for family, friends and his own
core religious beliefs, Joe could have easily
spiraled downwards into deep depression. Over the course of the next several years,
Joe did his utmost to maintain excellent job
performance in his position as an
Employment Specialist in which he would
train people with disabilities how to
reintegrate back into society. At that time
Joe acted as the primary breadwinner for the
family, and upon the arrival of number 3 a
pay raise was in order. In September 1998,
Joe pursued and landed his dream job as an
Adjudicator 1 for the Social Security
Administration, Division of Disability, to
approve or deny SSDI and /or SSI claims. Due to much determination and hard work,
Joe was promoted to the level of an
Adjudicator 3 within 2 years’ time. Unfortunately, the promotions came too
soon, as Joe was beginning to make
mistakes in handling claims. Joe's
increasing shoddy work performance
demonstrated a potential indicator he may
have been dealing with an ABI. Another
sign of this condition is a quick temper, with
unpredictable anger outbursts. Management
instructed Joe's unit supervisors and
coworkers to look after him due to his
failure to control his heavy caseload, and
bouts of anger. They did their best to curb
the issues within ADA guidelines, to best
accommodate his needs. Unfortunately, the
road became rough before any potholes
could be filled. In December of 2009, Joe was dealt an
unexpected heavy blow to the heart! In early 2011 his cognitive
deficits had caught up with him, and he was
forced to take two demotions and go into
early retirement. Joe recalls having been
overcome by terrible grief, but to his credit,
he turned to God and family for emotional
support. Had he tried to go it alone, he
might have thrown in the towel; conversely,
he pulled himself up by his bootstraps, filled
in those blasted potholes, and made the
rubber meet the road! “The heck with the
past,” he said to himself, “I'm moving on
and will not ever look back!”
Around that time, Joe was advised by some
of his peers to seek out a TBI support group! He investigated and readily encountered
such a support group at his local hospital. As it turns out, Joe
became quite fascinated by the facilitator's
role, and a dream was sprouted. Joe was
truly determined to remain optimistic! His
motivation was now being fueled by his
choice to adapt to a new normal. In so
doing, he found within himself a desire to
engage more in fun activities, such as
playing his guitar, writing, and praying with
his late mom on long walks. These positive
steps, he reasoned, would help him to
become yet a few degrees closer to his goal
of establishing his own brain-injury support
group, and finally moving into the next
chapter in his life. It was in 2014 that determination began to
spread its wings, and Joe was inspired to
establish and facilitate his own brain-injury
support group! He began doing some online
research to discover some brain-injury
support group sites online. It was right away
into the search that Joe found a link for
TBISN (Traumatic Brain Injury Support
Network). Joe composed and sent an email to the
contact person. He shared his testimony of
having beaten the odds, surviving brain
surgery for the removal of a WHO grade III
Anaplastic Oligodendroglioma (a highly
malignant brain tumor). He informed his
contact that he had already been attending
TBI support group meetings for the past
several months, and he was well beyond
ready to establish his own brain-injury
support group. Joe received a phone call
from the Director of TBISN for WA State,
Craig Silicia, who was quite impressed by
Joe's email and credentials shared therein. Craig informed Joe that he had been
searching for a TBI support group facilitator
within Lewis County, WA where Joe had
been residing. The two of them conversed
for quite some time, and they both agreed
that Joe would be a great fit for the
network; Craig built a website and Joe
provided the name, “Live for Today Brain
Injury”. Advertisements were broadcasted on two
different radio stations, meeting places
secured, and comprehensive fliers posted;
the group was underway, and it was off to
the races. Facilitator Joe chose to host a
“meet and greet” and a few folks joined up
right away! A few weeks in, along came a certain TBI
survivor and his caregiver! They had caught
wind of the group, and Joe invited them to
join. Unfortunately, during their first-time
meeting with the group, they both seized
the day and took over Joe's role as the
facilitator. Subsequently Joe became
somewhat less enthusiastic and after having
let himself become rather despondent, he
simply let go of his role and the group! Thank God he still owned the website and
the name of his group. At that point, Joe involved himself in
writing ABI/TBI articles and posting his
inspirations on social media. He remained
more focused and encouraged than ever to
spearhead his own brain-injury support
group. Continuing with the process to make
his dream a reality, Joe delved deeper into
researching data concerning ABI/TBI. A
few of Joe's findings are cited below! Common symptoms and warning signs that
one is dealing with a TBI or an ABI might
include grand mal seizures (full-body with
subsequent blackouts); petite mall (full-body
w/o loss of consciousness, and/or absence
seizures (spaciness usually lasting just a few
seconds) prior to and after diagnosis; an
intermittent increase in migraine headaches;
sign leading up to a diagnosis of either ABI,
TBI, or both. It should also be emphasized that rapid
mood swings, with unfiltered rage (as had
been the case with Joe), can also be a
common factor in diagnosing an ABI and/or
a TBI. Joe's ABI was exacerbated by his
TBI during brain surgery. As alluded to
above, the tumor had been growing
throughout most of Joe’s life, as manifested
throughout his early childhood years. As a child Joe had been verbally and
physically bullied at school. Karl fought
back, often flying into rages and retaliating. He was also abused by both of his alcoholic
parents at home and would fly into rages
due to very bad mood swings. He would
often be beaten and locked out of the home
at night. His anger outbursts carried over
into his early 40s, at which time his
psychiatrist found the right medication
regimen, and along with therapy, to help
curb the mood swings. Karl's dad and mom had been at odds with
each other as to which name to assign to
their eldest son. Mom wanted Joseph and
dad wanted Karl. Dad won over! In 2012,
Karl filed for a legal name change, from
Karl to Joseph. It was incidentally during
that same year when Joe's mother chose to
end her life via drugs and alcohol. Mom had
been his primary caregiver, in turn suffering
a great loss! Fast forward to the present day, Joe
continues to experience random frequent
episodes of left-sided paralysis in both his
left-upper extremity (LUE) and left lower
(LLE) daily. He will simultaneously
become dizzy, lightheaded, and confused,
always drifting off in his thoughts. Since
the tumor had been housed within the right
temporal parietal region of Joe's brain, the
partial complex seizures have only been
occurring on the left side, much in the same
way a “stroke” operates. Joe chose to avoid going to see his primary
care physician, blowing off the seizures as
being nothing more than carpal tunnel
syndrome. Joe rationalized that any loss of
sensation and/or numbness in his LUE had
to be secondary to typing a lot at work and
playing too much guitar. His symptoms
worsened for well over a year prior to and
after diagnosis! As his seizures became
more frequent and severe, Joe's ex-wife
recommended he schedule an appointment
with his doctor. Joe was indignant and
refused! What finally prompted Joe to visit a doctor
was a single intense migraine headache
beginning on Friday evening of President's
Day Weekend 2002. The headache hit out
of nowhere and intensified throughout
Sunday afternoon, at which time his ex-wife
insisted on rushing Joe to the ER. On the
way Joe became quite nauseous and
vomited! Upon arrival he was literally shouting out
and tearing up with unspeakable pain! Staff
reacted immediately, had him on a gurney
and wheeled him off to radiology for a CAT
scan; startling the technician right away was
the appearance of a large bleeding out in the
right frontal hemisphere! Joe was
immediately admitted and placed on
morphine. Due to the abnormal bleeding,
Joe's ex-wife climbed the chain of
command, all the way up to chief medical
staff. to complain of Joe's condition, which
at that point had proven to be “quite”
serious. Within minutes he was being
airlifted from his local hospital St. Pete's in
Olympia, WA to Harborview Hospital in
Seattle, WA. Upon arrival, he again found himself on a
gurney being wheeled off to radiology, this
time for an MRI! The scan revealed a very
large tumor, bigger than the size a golf ball! Joe was still lying on the table when a
neurologist entered with the daunting news!
“Mr. Weber, he eerily exclaimed,” “you
have a brain tumor!” Joe was scheduled for
surgery to happen on the upcoming Friday. While waiting he and his ex-wife had the
opportunity of gleaning some additional data
about brain tumors. Some common warning signs leading up to
a brain tumor diagnosis might include full-
body seizures with loss of consciousness;
petite mall seizures (without loss of
consciousness); absence seizures (spaciness
of a few seconds); and localized
seizures/paralysis, and numbing of at least
one focal point of the body); dizziness or
feeling lightheaded or weak; inability to
think clearly; nausea/vomiting; worsening
migraines out of nowhere; trouble balancing
(due to equilibrium issues);neck pain; and/or
increased difficulty with speech; decreased
strength in arms and legs; hand and/or leg
tremors; and/or increased deficits in
memory, concentration, persistence, and
pace. Joe's 13-hour surgery went without a hitch,
and as the anesthesia wore off, he blurted
out his full name, SSN, DOB, his kids'
names, and birthdays. All onlookers stood
amazed! Now we proceed to post-op treatment
options! In Joe's case the medical team
recommended an aggressive approach
towards eradicating any post-op neoplasm. Treatments entailed radiotherapy for 30
consecutive days, and many cycles of
chemo, spanning over the course of more
than a year. Please keep in mind that with malignant
tumors, complete eradication, baring a
miracle, is not possible. Joe's highly
malignant tumor sent out tendrils
(microscopic roots), to unknown areas of his
brain, so he and his radiologist agreed to hit
the cancer hard! Prepping for radiation
treatments entailed being fitted for a special
plastic mesh helmet, which was marked in
accordance with where the tumor had been
housed, so the cobalt radiation beams could
be simultaneously aimed at the sight to 4
different vantage points. A few days into radiation Joe started chemo,
which involved taking oral medications
twice daily, and being infused with some
other chemo agents intravenously once per
week at the clinic. Falling ill at once was to
be expected, but Joe's resiliency won over in
the end! Benign brain tumors share many things in
common with malignant tumors, yet they do
somewhat vary. These tumors are very
slow growing and usually cystic by nature;
surgery for such tumors may still pose a
threat to the surrounding brain matter, and
post-op deficits can occur. As is the case
with malignant brain tumors, benign tumors
can cause one to experience some of the
symptoms, as they, too, can become quite
enlarged. As is the case with malignant
tumors, benign tumor cells are still subject
to mutation without notice, hence igniting
malignancy. Both ABI and TBI conditions can prove to
be fatal, or have lifetime effects, so both
types should be taken seriously! First, one should have a team of medical
professionals, whose goal it is to work
together for the common good of the
patient. MRI and CAT scans should be
carried out as prescribed, no matter how
much time has elapsed since the most recent
one. Joe is a brain cancer/ ABI/TBI
survivor of more than 19 years, but still
wants to be on the safe side and take his
neurologist's advice. The doctor warns his cancer may recur at
any time and advises Joe to obtain routine
MRI scans about once every 6 months, and
CAT scans at intermittent times, depending
upon any change in symptoms. Joe had a
CAT scan of his head in late February 2021,
which revealed some bleeding out in the
tumor cavity. A new scan was ordered and
transpired on March 10, 2021, thank God it
was clean! A followup appointment with
neurology has already happened, and the
exam was within normal limits! Joe's virtual brain-injury/condition support
group will be made available online soon to
serve people who are living with any
chronic brain condition. Again, caregivers,
family members, friends, and all supportive
parties are encouraged and welcome. Joe is
in the process of restarting this group in a
virtual manner! Please contact him by email: [email protected]/phone(360-807-4432 to register.
