Pancreatitis, Disability, & The Purpose of life

[Guest guest]

Andre,

You wrote, " I've now been told that I will never again be able to work again, in

all likelihood which is a blow to me since I am only 52 yrs old! I basically

have no life... "

I think it is hard for many persons to understand the gravity of the situation

related to disability. Yes, I am grateful for the financial compensation,

though, as most will agree it is not enough to meet our financial commitments.

But, being unemployed or unemployable isn't just about monetary loss.

For myself, I loved the work I did. I was taught that was what you were supposed

to do.....Do what you love and the money will follow. I also never had a 'job',

I always tried to look at whatever I did as being part of a greater effort and

working towards a whole, sort of like the brick layer who responded to the

question: " what are you doing? " with: " I am building a castle " , vs. the other

who said, " I am stacking bricks. " [LOL..Or something like that] The point is, I

think it is important to live with intention and nothing we do is less than or

better than, but a cumulative effort to towards the betterment of a Good world.

Every day I had much room for improvement, but everyday I could wake up and seek

to do better.

Initially when I realized I was unable to return to work, I was devastated. It

has become a true lesson in humility, for which I am grateful. My spiritual

beliefs were tested, continue to be tested. Did I really believe no job was

better than or less than? Could I really be satisfied with having a place to

sleep, a roof over my head, a warm meal? Would I really have no problem standing

in a soup line? Would I really not be embarrassed if I didn't keep up with the

''? Did I really define myself by my personhood and not by power and

prestige? Could I continue to give to those less fortunate when and even if it

meant I had none? Did I really believe that the more I shared, the more I had?

Did I really have faith?

Fortunately, our church has a Minister program for persons going through

a life-altering event, such as a terminal or catastrophic illness, death of a

spouse, child, etc. A Minister is a member of the church who has gone

through extensive training and is then given a one on one assignment for a year.

They are then able to help you walk ... not run, not detour, not ignore ...but

walk, hand in hand, through the valley, during this difficult period of

darkness.

One of the issues we explored was, What was the purpose of life? Why did I feel

like I had no life, just because I could no longer work outside the home for

financial compensation? I was diagnosed August 4, 1999. It was fall, the coming

year would take me through the cycles of grieving the life I thought was to be

mine ... just as the changing seasons go round and round & painted ponies go up

and down ... when spring arrived, with new signs of life, so did my

understanding of my own life. By summer's end, we had gone full circle.

One of the most important lessons I learned is that I am not the result of what

has happened to me, I am the culmination of how I respond to what has happened

to me. That makes this life-altering situation life-empowering.

Karyn E. , RN

Executive Director, PAI

Pancreatitis Association International

[Guest guest]

Wow, Karyn! What unique insight you have. Now this may make lots of

enemies for me, but I have been trying to explain to my wife how this

situation has affected me mentally as well as physically, but she

doesn't get it. I told her, " If she were a man she would have a

better understanding of what it is I am trying to say " . What I mean

by this is, being brought up in a household where my Dad went to work

and my Mom stayed home to raise myself and my 2 brothers, I've always

expected this same for myeslf when I had my own family. Well, after

getting fired from every job I've had since 1983 (total of 3 jobs),

and to now be told that I will bnever be able to work again, I no

longer feel like a man! Initally, it was unbearable to watch my wife

get up every morning to go to work while I sat in my chair all day.

This was the beginning of my serious depressive stage. I still feel

just as badly today, 5 years later and I doubt if I ever will get

used to the fact that I am now dependent on my wife going off to work

to make ends meet. How emasculating!!! I've tried over and over

again to come to grips with my situation, but no matter how hard I

try, I keep coming back to all of my failures in life. It seems like

the only thing I have been able to do successfully is be sick. I am

good at that one though...

Karyn, your words did have a profound impact on me, but I don't know

if you can realte to where I am coming from when I say that I cannot

accept my fate as it currently stands. However, whenever I try to do

things to prepare myself to return to some sort of employment, I end

up making myself sick again for several days/weeks/months. Sometimes

I feel so lost and useless that I wonder why I was allowed to live

after my last surgery (I was told that they lost me for a while and

had to resusitate me)!

As usual, thanks for the kind words. You always have been good at

reaching me with your wise words. And please, do not be angry at

my " sexist statements " for they were not intended to sound the way

that I know that it does to some of you.

Andre'

> Andre,

>

> You wrote, " I've now been told that I will never again be able to

work again, in all likelihood which is a blow to me since I am only

52 yrs old! I basically have no life... "

>

> I think it is hard for many persons to understand the gravity of

the situation related to disability. Yes, I am grateful for the

financial compensation, though, as most will agree it is not enough

to meet our financial commitments. But, being unemployed or

unemployable isn't just about monetary loss.

>

> For myself, I loved the work I did. I was taught that was what you

were supposed to do.....Do what you love and the money will follow. I

also never had a 'job', I always tried to look at whatever I did as

being part of a greater effort and working towards a whole, sort of

like the brick layer who responded to the question: " what are you

doing? " with: " I am building a castle " , vs. the other who said, " I am

stacking bricks. " [LOL..Or something like that] The point is, I think

it is important to live with intention and nothing we do is less than

or better than, but a cumulative effort to towards the betterment of

a Good world. Every day I had much room for improvement, but everyday

I could wake up and seek to do better.

>

> Initially when I realized I was unable to return to work, I was

devastated. It has become a true lesson in humility, for which I am

grateful. My spiritual beliefs were tested, continue to be tested.

Did I really believe no job was better than or less than? Could I

really be satisfied with having a place to sleep, a roof over my

head, a warm meal? Would I really have no problem standing in a soup

line? Would I really not be embarrassed if I didn't keep up with

the ''? Did I really define myself by my personhood and not by

power and prestige? Could I continue to give to those less fortunate

when and even if it meant I had none? Did I really believe that the

more I shared, the more I had? Did I really have faith?

>

> Fortunately, our church has a Minister program for persons

going through a life-altering event, such as a terminal or

catastrophic illness, death of a spouse, child, etc. A

Minister is a member of the church who has gone through extensive

training and is then given a one on one assignment for a year. They

are then able to help you walk ... not run, not detour, not

ignore ...but walk, hand in hand, through the valley, during this

difficult period of darkness.

>

> One of the issues we explored was, What was the purpose of life?

Why did I feel like I had no life, just because I could no longer

work outside the home for financial compensation? I was diagnosed

August 4, 1999. It was fall, the coming year would take me through

the cycles of grieving the life I thought was to be mine ... just as

the changing seasons go round and round & painted ponies go up and

down ... when spring arrived, with new signs of life, so did my

understanding of my own life. By summer's end, we had gone full

circle.

>

> One of the most important lessons I learned is that I am not the

result of what has happened to me, I am the culmination of how I

respond to what has happened to me. That makes this life-altering

situation life-empowering.

>

> Karyn E. , RN

> Executive Director, PAI

> Pancreatitis Association International

>

>

>

>

[Guest guest]

Andre,

My husband is going through the same things you are.

I know that I will never fully understand the torment

he feels. I do know this, I love my husband and I

want him with me, be it in a recliner, on the couch or

by my side. I would not trade him for any other

person, healthy or otherwise. Without him, my

children and I would suffer. He is our strength. He

loves us he is proud of us and I know it must be more

than hard for him to allow us to love and care for

him. But we do. Nothing can change that, I married

him for better or worse, sickness or health.. Well I

got the better, and I got the sickness. I'll take

that anyday. Do I wish he wasn't sick? Certainly.

Watching him suffer is my own torture. I don't like

working and supporting us, it's tough. But, no one

said this life would be easy and we do what we have

to. I have a happy home that I share with others that

I love and that love me. Count the blessings you do

have no matter how difficult. I'm sure your wife

feels as I do about you. Allow her to love you in

whatever form it takes. I wish you the best, and I

hope you realize your value to your family.

Becky

__________________________________________________

[Guest guest]

>

>

> Andre,

> My husband is going through the same things you are.

> I know that I will never fully understand the torment

> he feels. I do know this, I love my husband and I

> want him with me, be it in a recliner, on the couch or

> by my side. I would not trade him for any other

> person, healthy or otherwise. Without him, my

> children and I would suffer. He is our strength. He

> loves us he is proud of us and I know it must be more

> than hard for him to allow us to love and care for

> him. But we do. Nothing can change that, I married

> him for better or worse, sickness or health.. Well I

> got the better, and I got the sickness. I'll take

> that anyday. Do I wish he wasn't sick? Certainly.

> Watching him suffer is my own torture. I don't like

> working and supporting us, it's tough. But, no one

> said this life would be easy and we do what we have

> to. I have a happy home that I share with others that

> I love and that love me. Count the blessings you do

> have no matter how difficult. I'm sure your wife

> feels as I do about you. Allow her to love you in

> whatever form it takes. I wish you the best, and I

> hope you realize your value to your family.

> Becky

>

> __________________________________________________

>

[Guest guest]

Becky,

Thanks for the words of encouragement. Your husband is truly blessed

to have a wife who obviously loves and understands what it is he is

undergoing.

I do realize the tough journey those of you who do not actually

suffer from this illness directly. However, it is just as tough on

us who do suffer from the affects of their pancreatitis because we do

feel as if we a just a burden on the family at times. While

rationaly, I know this to not be the case, unfortunatley I don't

always think as rationaly as I should and thus the depression and

uslessness come to bear. What a terrible illness this is since it is

so difficult to diagnos and the way it can sometimes tears families

apart. I do understand how fortunate I am to have a wife who has

stuck by me through all of my undiagnosed " attacks " over the years,

along with all of the times I was fired from good jobs due to my not

being able to consistently maintain my efforts at work. And still

after 31 years of marriage she still is the " rock " I stand upon daily

to get through the many ups and downs in my life. However, I still

feel that I have let my family down so many times and, now that I

know that I will never be able to contribute to the family finacially

by working, I feel like a " 5th wheel " ; and just about as useless as

one too.

Thank you for your words of encouragement. While I know deep down

that you are speaking for not only yourself but for all of us who are

blessed to have a spouse who stands by them throughout all of the

varied twists and turns that this disease puts us through, I still

cannot help but wish things were different.

Andre'

>

>

> Andre,

> My husband is going through the same things you are.

> I know that I will never fully understand the torment

> he feels. I do know this, I love my husband and I

> want him with me, be it in a recliner, on the couch or

> by my side. I would not trade him for any other

> person, healthy or otherwise. Without him, my

> children and I would suffer. He is our strength. He

> loves us he is proud of us and I know it must be more

> than hard for him to allow us to love and care for

> him. But we do. Nothing can change that, I married

> him for better or worse, sickness or health.. Well I

> got the better, and I got the sickness. I'll take

> that anyday. Do I wish he wasn't sick? Certainly.

> Watching him suffer is my own torture. I don't like

> working and supporting us, it's tough. But, no one

> said this life would be easy and we do what we have

> to. I have a happy home that I share with others that

> I love and that love me. Count the blessings you do

> have no matter how difficult. I'm sure your wife

> feels as I do about you. Allow her to love you in

> whatever form it takes. I wish you the best, and I

> hope you realize your value to your family.

> Becky

>

> __________________________________________________

>

[Guest guest]

Andre:

I am the soon to be wife of a man I love deeply, who has chronic pancreatitis.

He to will not be able to contribute to our family finanically. This does not

bother me at all. There are other things that he can do to contribute to our

family. Like a little house work here and there, making dinner on the days that

he can, little things, but most importantly being there for me as a companion.

I know that this disease is not his fault. He did not ask for it, it happend to

him. Financial security from him is not what I want. I just want for him to be

happy and to feel good. This may sound strange, but I'm sure that many of you

can identify, this disease has made us much better people. We appreciate life,

each other and our families so much more. We also have a greater love for our

Savior Jesus Christ and the sacrifice he made for us. Having faith in our

Saviour has really helped us through this ordeal.

Don't put yourself down for not being able to contribute financially to your

family. YOU as a person are contributing and helping your family in more ways

than you can possibly imagine.

I'm sure that you are and will continue to be a source of great strength and

encouragement to your wife and children, as they see the day in and day out

struggles you deal with. I firmly believe that our Heavenly Father gives us

challenges not only for ourselves to bear, but for our families and loved ones

to bear as well. We all have something to learn from each other.

Hang in there. Things can only get better for all of us.

Sam

Andre Castenell Sr wrote:

__________________________________________________

[Guest guest]

Thanks Sam for your words of encouragement. However, I do notice

that

only the women have responded to this original post of mine

concerning my current mental strain due to my inability to be " The

Man of the Family " as I promised I would be when we were 1st married

my wife

way back in 1974. While I know that I did all that I could do to

live up to this plan of mine (ours?), I still feel an awful sense of

remorse for not being able to live up to my comittment to her in this

regard.

I know I am going to be labeled a sexest for my comments, but I feel

that honesty is important to all of us if we are ever going to be

able to help one another through our various trial and tribulations.

Also, you must remember that I am a product of the 50's (Leave it to

Beaver, Dick Van Dyke Show, etc) whereby the men took care of their

families financially while the wife took care of the home and raised

the kids while he was at work. This is a tough concept to get rid of

although I know that times have changed and roles have blurred over

time.

As for having faith in Our Savior and that he has a plan for all of

us, I too was a strong believer in this especially since I came from

an extremely religious family group. I even contemplated becoming a

Priest at one time and entered the seminary for 3 years of study.

Fortunately for me, I learned that this was not the life for me, even

though I maintained my religious convictions through all of my later

trials brought about by my health issues. Unfortunately, I am not as

strong as I once was and often find myself blaming Him for giving me

this insiduous illness that not only affects me but also my entire

family; wife, kids, parents (while they lived), brothers, etc. Is

this fair? I think not. Why should all of these people have to

suffer for something that I have to deal with, even if it were no

fault of my own for having it. I never drank alcohol nor have any

other bad habits (with the exception of smoking) and always tried to

keep myself fit, yet no matter how hard I tried to live up to what I

felt a man should be, the more I would see a failure looking back at

me in the mirror. A prime example of what I mean is my Dad. He

worked hard all of

his life in construction, yet never complained once about anything

that was bothering him nor did he let it interfere with taking care

of

us while we were growing up and my Mom up until her premature death

back in '82. The last 20 yrs of this he did with a fractured hip

which, when it happened he was told he would never be able to work

again and should file for Social Security (sound familiar?). He

refused to accept this

diagnosis however and continued working without missing 1 day due to

this

problem. He lived until he was 82 yrs old and worked hard until the

very end (mostly around his house basically rebuilding his house from

the ground up). Now that was a man!

Anyway, I didn't mean to let this get so wordy, but those of you who

know me know that I just can't seem to write anything without making

it

lengthy. Guess I'm just cursed with being verbose or perhaps because

I am alone so much of the day, I need to communicate in some form of

fashion. Who knows..

Thanks again for you kind words of encouragement and I hope my words

do not upset anyone's sensibilities. I am speaking from the heart

right now and feel it necessary to say what is really and truly on my

mind and in my heart.

Andre'

>

>

>

> __________________________________________________

>