Great post, Anthony... thank you. I, too, was diagnosed in 1999 (May) so we
have taken this journey together.



Some of my thoughts for Niki:



First, the only thing you have to disclose to a potential employer is what
your capabilities are as far as accomplishing tasks of the job you are
applying for. They are not allowed legally to ask you specific questions
about your medical history. So it would not be dishonest, it's just that
you have a right to your privacy and you would be revealing as much as they
needed to know. If you feel unable to hold this information back, you could
always put 'epilepsy, treated with medications' - but I don't even suggest
going that far. There is a stigma attached to us telling people we have/had
a brain tumor (or epilepsy, for that matter). It's very scary to those who
have never met someone with this condition before (heck, it's scary to us as
well sometimes!) Sometimes people look at you as though you just told them
you are from another planet. Have you seen 'that look'?



Another benefit of minimizing the information you provide during the
interview/hiring process is that, once you get the job and become
comfortable with your colleagues, it would be fairly obvious if they were
biased against your history. As long as you are totally honest as far as
your capabilities, I think you have met your obligation to them.



Your seizure disorder alone could be enough to be granted SS benefits.
Although you may have to go through an initial denial, once you get a SS
Disability attorney and provide him/her with documentation from your doctor
of an abnormal EEG/side effects from your medications/information about
break-through seizures, etc, it would be unlikely you would be denied
through the process. (read more about this at
http://www.epilepsyfoundation.org/living/wellness/employment/adadisability.c
fm ) And, as you probably know, the SSD attorney works on a contingency. The
attorney's fees are usually only a fraction of the benefits you receive;
depending on the amount of your past due benefits, it can be a very small
fraction.



As for me, I tried to work with a seizure disorder for four years after
recovery from my brain surgery. One day, I finally realized that, for me,
the pressure and stress of trying to keep up with it all actually minimized
my quality of life [increased incidence of seizures, fatigue, etc.]. At
first, I felt like I had lost my primary identity as a nurse and an
administrator; since then, however, I have found many other avenues to gain
personal satisfaction from. It was interesting to learn how much my
professional life meant to me and was a wonderful challenge to find personal
satisfaction with my home/family/friends life as the primary focus.



This journey has so many facets...



My best to you,

Trisha Williams, R.N.

BrainSurgery@Yahoo Founder/Facilitator



_____

From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
Behalf Of Anthony Williams
Sent: Monday, November 10, 2008 10:28 PM
To: 'Niki perry'
Cc: BrainSurgery@yahoogroups.com
Subject: [BrainSurgery@Yahoo] RE: employment vs ethics



Hi Niki,

Just my thoughts.

Each day is different and the way our bodies face each day is not the "norm"
as in the past. We become prejudiced against ourselves. How many times have
I thought that I didn't want to do something and then argued with myself,
why? Is it because of the brain tumor? Do I just not feel good? Am I using
this tumor as an excuse for payback? Why don't I want to do this relatively
simple task that I could accomplish before without thinking twice.

Frank is right about "outside the box". That means our mind as well as our
normal approach. There are some things that we think we cannot change. I am
retired USAF. Can I fly in an aircraft and do all of the tasks my team
members depended upon to complete a mission. Some days yes, some days no.
But, that should never stop me from trying to do my best and offer my
capabilities when another person asks for my help. Some of my team members
didn't understand the battle that I was facing. Not their fault. It is still
difficult for me to try and fight this battle. Meeting family obligations
that I used to do with military precision is now a matter of me making a
critical decision and delegating to another family member, and living with
the results, no matter how good or bad. Understanding our role and the
control of our individual need to help our family is a battle for everyone,
no matter what culture in which one is raised. That's life.

I was diagnosed in 99 after returning from a week long mission. At the
beginning of the week I just felt bad. On Wed night, I thought I was coming
down with the flu, head hurting, nauseous, etc. We didn't fly on Thu and
that night I hurt, puked and was really miserable. I didn't go to the
hospital. I knew that if I did, I would not be able to meet the mission and
in my family you don't go to the doctor unless you are just about dead. When
I was completing the pre-flight the next morning, I couldn't remember the
checklist. Tired and ticked at myself I went and got the pre-flight book and
had a team mate help. We flew home and it was Fri night so I knew nobody
would be at the base hospital. I was active reserve and my order's ran out
that night. Continued having a constant headache and took every otc medicine
that I thought would help. In real life I am a computer consultant to small
businesses. It is a 12 to 18 hour normal day. So, I thought it was just the
stress and one job for a law firm that was a lot of aggravation causing the
grief. On Thu, I went to a meeting, it was difficult to talk, just figured I
was really tired and told the attorneys I was sick and had to go home. I
came home and went to bed. I woke up 15 minutes later in a Grand Mal
seizure. Later at the hospital after a scan, the doctor told me I had a
tumor. That was the day my life changed.

Retired from the USAF, not my choice. No pay, no benefits - until I turn 62.
The job I loved so much was gone. Fortunately I had enough income and with
my wife's help we managed to continue on for two more years until my
neurosurgeon asked me about disability. I had not asked before because of
pride. I simply did not think that I needed any help from a govt. program.
That was another day my life changed. His question - Why? - made me really
start thinking about what good was I to my family? I grew up on a farm. I
could not ask for help because I was too stubborn and independent, a
by-product of farm life. My wife and I filled out the paperwork and turned
it in to Social Security. It was approved and has made a difference as
treatments and the time devoted to healing has taken me away from my work.

Life is not as good now as before. But, from a diagnosis of 1-3 years, and
now it is year 9, I don't complain. Hope is what helps me make it every day.
Knowing that the sun will rise tomorrow no matter how difficult today is
keeps me on track. That is what I think about to calm myself when it seems
things are really tough. One thing I have learned is to never take no for an
answer. If you have an oligodendroglioma, any neurologist/neurosurgeon
should be able to provide you with the paperwork to help you get disability
if you have a work history and qualify. I am not sure how it is determined
or if the pay is dependent upon your payments in and the year working time
frames. The one thing that I do know is this is a benefit that is available
from Social Security and we do not have to take no for an answer. Write your
state legal BAR for help, a lot of attorneys will provide help without pay.
It may be another hurdle, but hurdles is what we face every day.

Another thing I have learned is that knowing what my average day is like,
delegating, and looking at reality and telling myself no to some selfish
desires, some jobs, no matter what the pay and the current needs of my
family, helps me make it to tomorrow. Only you know what your skill levels
are and you have to decide if working at a job is worth risking your
reputation and the well being of your family. That is a sickle that you have
to carry, it may be used for good or harm. Focus, clear your mind and keep
on going up the chain of command. Aggravation can work for you as much as
against you. Giving up, saying no and doing nothing is letting go of hope.

Hope will make your sun rise and give you peace. Peace comes at a price, but
you determine the cost, mentally and physically.

Sincerely,

Anthony

From: Niki perry [mailto:nvroom@... <mailto:nvroom%40msn.com> ]
Sent: Monday, November 10, 2008 7:28 PM
To: Frank Box; melwel@sbcglobal. <mailto:melwel%40sbcglobal.net> net;
brain-temozolomide@ <mailto:brain-temozolomide%40yahoogroups.com>
yahoogroups.com;
braintmr@mit. <mailto:braintmr%40mit.edu> edu; oligo@braintrust.
<mailto:oligo%40braintrust.org> org
Subject: RE: employment vs ethics

yeah. i don't qualify for disability, or ssi or ssa or medicare or any such
thing.
so that has blocked me from the community rehab through transitional
assistance, ie: any fed or state program.

i am disabled as per dr's. but according to the government, it doesn't
matter what i am because i don't qualify. qualifying helps getting
retraining A LOT.

love,
Niki
AO3
6/06

http://tumorland. <http://tumorland.spaces.live.com/> spaces.live.com/

When I die, I want to die like my grandfather--who died
peacefully in his sleep. Not screaming like all the
passengers in his car."

--Author Unknown

_____

Subject: RE: employment vs ethics
Date: Mon, 10 Nov 2008 15:24:43 -0900
From: fbox@accessalaska. <mailto:fbox%40accessalaska.org> org
To: melwel@sbcglobal. <mailto:melwel%40sbcglobal.net> net; nvroom@...
<mailto:nvroom%40msn.com> ;
brain-temozolomide@ <mailto:brain-temozolomide%40yahoogroups.com>
yahoogroups.com; braintmr@mit. <mailto:braintmr%40mit.edu> edu;
oligo@braintrust. <mailto:oligo%40braintrust.org> org

The issue was posed by Niki.

Frank was hired out of a a TBI support group on 7/15/2002 that is hosted
by Access Alaska, I transitioned off disability benefits and into the
mainstream by way of the State of Alaska Division of Vocational
Rehabilitation If you are on Social Security Disability Benefits you can
still work part time. If you have a Brain Tumor and have lost your job you
should be on SSDI- The Gov. will spend a lot of money retraining you to make
you work ready and get you back to work. I walked in the front door and
never apologized about my speech problems- I was happy to be alive and
wanted everyone around me to know that if it could happen to me it could
happen to them and it might be handy to have some one around that has been
through it.

So when the regional director told me about the position, I asked to see
a job description and was told to just show up and they would build the
position around my strengths, so that I could start easy for a couple of
months. I went full time the second week and had my own office in the second
month, but this Center for Independent Living has a 51% disability hire
policy. That is why I recommended a similar agency in your area.

Frank B!!~) thinking outside the (~:{ Box

right frontal parietal 2 X olio survivor (dx 4/98) Surgery - recurrence
surgery 6/99- radiation x 30 - 12 months procarbazine PCV- MRIs on q-6 month
intervals ,

2 1/2 years speech therapy MRIs extended to 1 year so far so good, Last MRI
12/4/07- next one 12/08

============================================================================
==========================================

Access Alaska Inc.

Independent Living specialist

(907) 263-1905

<http://www.accessal <http://www.accessalaska.org/> aska.org/>
www.accessalaska.org

"For reason, ruling alone, is a force confining; and passion, unattended, is
a flame that burns to its own destruction."

Kahlil Gibran

P Please consider the environment before printing this e-mail.

_____

From: Melanie Wellner [mailto:melwel@sbcglobal.
<mailto:melwel%40sbcglobal.net> net]
Sent: Monday, November 10, 2008 2:11 PM
To: Niki perry; brain-temozolomide@
<mailto:brain-temozolomide%40yahoogroups.com> yahoogroups.com; braintmr@mit.
<mailto:braintmr%40mit.edu> edu;
oligo@braintrust. <mailto:oligo%40braintrust.org> org; Frank Box
Subject: RE: employment vs ethics

Couldn't tell if this ethical issue was posed by Frank or Niki but I have to
chime in here:

No one will hire you if you tell them in advance that you are a bt patient.
Of course, they will never admit that is the reason you didn't get the job
but would you hire a big problem? This is not the best job market. Tell
them later or never at all, if possible. If you are not your bt, then don't
talk about it or any of your other personal problems unless or until they
become a problem on the job. That's my 2 cents.

I remember getting a great job in a law office when I was only 19 and for 2
years I had to make excuses for not going out for a drink with the gang. It
was worth it and, probably after a year there no one would have cared.

On 10 Nov 2008 at 12:46, Frank Box wrote:

Subject: RE: employment vs ethics

Date sent: Mon, 10 Nov 2008 12:46:56 -0900

From: "Frank Box" <fbox@accessalaska. <mailto:fbox%40accessalaska.org> org>

To: "Niki perry" <nvroom@... <mailto:nvroom%40msn.com> >, <brain-
temozolomide@ <mailto:temozolomide%40yahoogroups.com> yahoogroups.com>,

<braintmr@mit. <mailto:braintmr%40mit.edu> edu>, <oligo@braintrust.
<mailto:oligo%40braintrust.org> org>

Hey Niki,

If you lied on your application and were discovered, you would be fired
on the spot, so my advice is to find your nearest center for independent
living. Call them and make an appointment, see if there is something they
need help with, tell them about your situation- Let them know that you are
seeking PT work & offer to volunteer to show your skills- They may hire you
on the spot if you are as charming in person as you are on the web page. You
can find out more by checking out your State Independent Living Council-

Frank Box

Access Alaska Inc.

Independent Living specialist

(907) 263-1905

<http://www.accessal <http://www.accessalaska.org/> aska.org/>
www.accessalaska.org

"For reason, ruling alone, is a force confining; and passion, unattended, is
a flame that burns to its own destruction."

Kahlil Gibran

P Please consider the environment before printing this e-mail.

_____

From: Niki perry [mailto:nvroom@... <mailto:nvroom%40msn.com> ]
Sent: Monday, November 10, 2008 11:38 AM
To: brain-temozolomide@ <mailto:brain-temozolomide%40yahoogroups.com>
yahoogroups.com; braintmr@mit. <mailto:braintmr%40mit.edu> edu;
oligo@braintrust. <mailto:oligo%40braintrust.org> org
Subject: employment vs ethics

ok guys, here's one for you:

i've been trying for quite a few months now to get work, p/t at minimum
(don't actually know if i could handle f/t, to be honest. it would depend
on what i did), and having
ZERO
luck whatsoever.

I have this integrity issue, too, though, and rather want to sound off you
guys to see if i am just being dumb.

when i apply for work, i tell them that i have a bt. that i am in
treatment. that i have certain right handed skills that are trash today.
that i have a seizure history.

is this utterly stupid of me????

I feel that
a, i should not have to hide it, and while there are many things i cannot do
in a workplace anymore, i have far more skills that would be an asset
ANYWHERE, and therefore should not be discriminated against. yes, i am a bt
patient, but that isn't my role in the workplace.

b, I've been an employer. I know there are needs to be met in the
workplace, and that finding out along the way, training yet another person,
that they can't do the job. an employer should be told upfront if there are
things that may come up in the line of work that i would not be able to
perform.

--i want a job because while considered disabled in some ways, i am quite
qualified to do many things, and would really like to bring in some decent
income, contribute to the household income, FEEL VIABLE as a human OUTSIDE
AND SEPARATE from my bt

i had an employer in the past that was willing to jump through hoops even
when i was extremely sick and disabled. willing to save my job, make
concessions on hours and schedules.

if anyone would give me the time, i really can find a way of explaining to
them why they need to hire me, and they will look past the bt and see just
some lady looking for work--lets see what she can do.

am i a utter naive dope here?

i've often heard patients tell eachother to never tell a prospective
employer, but i do feel i have this obligation to be honest about my
ABILITIES and disabilities, both.
and, it feels right. i tend to follow that. its an ethical thing.

anyone wanna call me a sap? because i suspect i may be one dreadful
idealist here.

thisaway :)

love,
Niki
AO3
6/06


<http://tumorland. <http://tumorland.spaces.live.com/> spaces.live.com/>
http://tumorland. <http://tumorland.spaces.live.com/> spaces.live.com/

When I die, I want to die like my grandfather--who died
peacefully in his sleep. Not screaming like all the
passengers in his car."

--Author Unknown

Melanie Wellner ( melwel@sbcglobal. <mailto:melwel%40sbcglobal.net> net )

Grass Valley, California (near Sacramento)

grand mal seizure 11/00;

misdx as stroke;

sx 2/01 UCSF; dx AOIII;

6 wks rad.;

1 course PCV; stopped as low blood count;

1 course Temodar; stopped until recurrence;

clear MRI 4-08 neuro-onc=Dr.CHang, UCSF.

dob: 6-27-45

seizure med. 1000 mg. TegretolXR, 1,000 mg calcium/day

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