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LightLizard
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« on: May 13, 2007, 03:40:14 PM »

One of the most difficult adjustments I had to make, since becoming dialysis-dependant, is the loss of purpose in my life.
As I stated in my intro, for most of my life I had been a musician and had never really entertained the concept of having a purpose for my life. I just played music and that was that.

After moving to the West coast, where it is not as easy to make a living as a musician, I put on one of my other hats and became a Tai Chi instructor. It took a few years for me to get established in that profession, but with patience (mostly, from my wife) and perserverance (mine) I managed to contract myself out to numerous community centers, senior retirement residences and a few private classes to make a reasonable living.

I met and worked with hundreds of people, in the time I was teaching, and many of them had health problems that would often be improved, and in some cases, disappear altogether(!) through their persistance in the practice of Tai Chi.

I came to feel that I was becoming a 'healer' of sorts, and my interest in spirituality (meditation, reiki, chanting, etc.) began to grow. I felt that my 'calling' had found me.

It all ended when I fell ill. I became bedridden for about seven months as the fluid built up in my body and I resisted the medical attention I needed. (It's a 'man thing'.) My energy level dwindled to nothing as I became worse, my legs got infected severely, and I finally gave in to the ambulance and went into emergency...

After diagnosis and treatment, I was released into the world as a dialysis patient. My energy, still low, would not enable me to return to my former profession. And to tell the truth, I had little stomach for returning to a profession that demanded that I teach people how to get and stay healthy. It was a level of hypocrisy I could not justify. So much for being a 'healer.'

I have struggled with this, and still do, from time to time, with this concept of having a 'purpose,' a 'calling,' or even a reason to get out of bed in the morning.

Is it just programming? Do we really need to justify our existence? How do others do it?
How do you do it? (Or not....)

We've all heard the stories of people who work for fifty-some-odd years and get to retirement, only to die a few weeks or months afterwards, from 'lack of purpose.'

What do we do when life retires US?

Love

~LL~
« Last Edit: May 13, 2007, 03:42:51 PM by LightLizard » Logged
keefer51
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« Reply #1 on: May 13, 2007, 07:16:10 PM »

Sometimes our bodies need a rest. The three years i have been on dialysis i have thought about my life. I am 51 living on social security. At one time i had everything any man could want, A wife, two children, a house, etc...  I also had been on dialysis before and my brother gave me one of his kidneys. In the ten years or so my life went down hill. My wife found a wealthy and healthy new husband. My children's minds were and are poisoned. I lost my house and everything i worked for all of my savings and retirement went to my ex and her new husband. That was just the way things worked in Tennessee. Because of all of this and becoming ill again i had to go bankrupt. So now i have no purpose. Sometimes it's good to say to your self; "I need to be well for my wife and kids." But sometimes it's better to do it all for LL. Dialysis just puts everything on hold for awhile. With the gift you have now you will find a new "Purpose"
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i am a 51 year old male on dialysis for 3 years now. This is my second time. My brother donated a kidney to me about 13 years ago. I found this site on another site. I had to laugh when i saw what it was called. I hope to meet people from all over to talk about dialysis.
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« Reply #2 on: May 13, 2007, 07:54:37 PM »

Great post LL. Hangin tough!!
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Chicken Little
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« Reply #3 on: May 13, 2007, 08:05:04 PM »

Last year I was working an average of 70 hours a week.  This year I'm on disability. 

I consider getting and staying healthy to be my new purpose and job.  Taking care of myself the way I used to take care of my job.  Getting as healthy as possible for transplant.  Some days are more challenging than my worst days at work though. 

Hang in there.   :cuddle;
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goofynina
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He is the love of my life......

« Reply #4 on: May 13, 2007, 08:07:34 PM »

Last year I was working an average of 70 hours a week.  This year I'm on disability. 

I consider getting and staying healthy to be my new purpose and job.  Taking care of myself the way I used to take care of my job.  Getting as healthy as possible for transplant.  Some days are more challenging than my worst days at work though. 

Hang in there.   :cuddle;

Good for you Chicken Little, i could only wish to even have an ounce of motivation, but i just dont, its so depressing but i just try not to let it get the best of me (which is not easy ya know) :P  You keep on keepin' on girlfriend and your transplant will come soon, i just know it ;)  :cuddle;
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....and i think to myself, what a wonderful world....

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glitter
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« Reply #5 on: May 13, 2007, 09:24:10 PM »

My husband is the one on disability- and he is doing great-taking care of his own health is his new 'job'

but I have been having trouble myself- I used to work for my husband, doing the books for his company-(I have no education)-which we sold when he had his accident and all this happened. Now I do not really know what to do with my days- I sleep too much. I never anticipated doing anything other then being his partner- i am thinking of going to school in the fall-but part of me is not really interested- I just don't know what to do-so I play far too many stupid computer games...lol
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
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Rerun
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« Reply #6 on: May 13, 2007, 09:32:59 PM »

Sometimes the Lord slows our life down to take time to figure out what is important.  The smart ones find out it is Him.  I've been a Christian for years.  I've had kidney failure for years.  I know who is in charge and some days I argue with Him about taking me home.  I'm still here.  Therefore I still have a purpose.
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kitkatz
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« Reply #7 on: May 13, 2007, 10:36:00 PM »

I think sometimes you have to really know that just by being here you are serving a purpose.  Your life is an example and you are a teacher to eveyone around you whether you ackowledge that fact or not. 
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Falkenbach
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« Reply #8 on: May 14, 2007, 01:37:10 AM »

I lost my dog grooming business to my ill health, and I was devastated. I'd finally found something that I liked doing AND I was my own boss (can't emphasise enough how important that was to me). Now I'm on disability too.

I'm hoping I have a good recovery after my transplant, and i will go back to yucky old office work. But only for a while, I am hoping to return to university - even if only part time - and am looking to do editing/proof reading type of work. Might as well do something I am good at and would enjoy much better than spending the rest of my life being somebody's damn secretary.

It's only this thought - having some plan - that is keeping me going!

Sometimes it takes us a while to decide what it is we want, or which direction we should think about going. Taking that time to decide is the hardest part. But hang in there. You will eventually think of something that makes you think - hey yeah, that's for me! Then you have something to work towards and look forward to. At least, that's the way I like to think. It's worked for me. I still have REALLY bad days (today is one of them) where all I want to do is cry. But I think we're all going through something tough and we deserve the right to a good cry on a fairly regular basis if we feel the need!

Best of luck to you.
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LightLizard
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« Reply #9 on: May 14, 2007, 08:07:51 AM »

Thanks everybody, great answers!! For a while I was able to look at my new 'lot' in life (staying alive) as my new 'job' - but after a time I have come to question the whole philosophy behind the 'purpose' perspective. Is it just a conditioning of our family, peers and culture, to believe that we must be useful to others in order to be happy?

When I was teaching Tai Chi, I felt that I was providing a valuable service to humanity- especially in this day and age of accellerated stress levels, polluted food sources, terrorism and the shrinking natural elements of human existence.

I still feel that there is a great deal of benefit to following a regimen of daily exercise of some kind. My preference now is qigong. (It's like Tai Chi but is simpler and focuses on the breath more than Tai Chi does).

Some of my old students have asked me to teach them again, but I have delayed that endeavor, so far, as I question and attempt to bring myself to a whole new level of awareness where I can truly be of service to others from an authentic position.

I have no religious affiliations or even inclinations whatsoever, but I do feel a 'spirituality' that is foundational and comforting to  my being, very much.
I feel drawn to the thinking of Lao Tzu and the Zen masters' philosophies;

'sitting quietly, doing nothing,
spring comes and the grass grows all on its own.'

The question is, I believe; 'what do you identify with? who and what do you believe
comprises the being that is called 'you?'

Are 'you' your body? your mind? your profession? your hobbies?
your relationships? your religion? your fears? your nationality?

I believe that we are none of these, in Reality, and our individual personalities
are but temporary and illusive results of environment, conditioning, culture and
fear.

I do believe and feel that my condition is, in many ways, a Gift. It has forced me to
observe myself honestly, clearly, and to look for the answers to life that I only played at looking for, before my condition manifested.

Perhaps the Answer is, 'there is no answer, only Being....'

The adventure continues.....


love

~LL~
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Falkenbach
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« Reply #10 on: May 14, 2007, 05:41:31 PM »

I know what you mean, some of us really do need to feel a purpose, whether we know the reason why or not.

I used to do volunteer visits to the nursing home with my dog Chloe (a tested therapy dog), on the weekends (I was working full time). It was a simple act that provided me with a great deal of satisfaction. Sometimes doing something like this, to help other people - a bit like your Tai Chi teaching - is a positive thing for some people.

But I am happy to take a step back now and concentrate on myself for the time being. It's the first time I've ever done it in my life, and I think I'm entitled to it right now!

Here's a pic of Chloe at the nursing home on Christmas Day - circa 2001
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goofynina
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He is the love of my life......

« Reply #11 on: May 14, 2007, 05:44:40 PM »

Good for you and good for Chloe ;)  :clap;  do you ever plan on taking her back or have you taken her back since you've decided to take some time off?  I just want to hug her.  :cuddle;
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Falkenbach
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« Reply #12 on: May 14, 2007, 06:05:30 PM »

No, I retired her from it when she was 9 years old because she would just go in and lie on the floor where the residents could not reach her to be able to pat her. She'd had enough! She is now 13 years old, or thereabouts.
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goofynina
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He is the love of my life......

« Reply #13 on: May 14, 2007, 08:33:27 PM »

No, I retired her from it when she was 9 years old because she would just go in and lie on the floor where the residents could not reach her to be able to pat her. She'd had enough! She is now 13 years old, or thereabouts.

Aww, bless her tired heart, she sounds like an awesome dog, give her our love please ;)  thank you :)
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Bill Peckham
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« Reply #14 on: May 14, 2007, 09:12:07 PM »

For me dialysis meant a freedom from expectations and ultimately to live in the moment. It's been a pretty crazy ride but here it is coming on 17 years and I have numerous opportunities to make a mark, to have purpose. You can't know what the future holds. My horizon has rarely been more than weeks, often days/hours; only recently do I have a two year plan.

For what it's worth I say give the teaching a try, go day to day. Unless you give it a try can you really know how it'll workout?
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
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George Jung
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« Reply #15 on: May 15, 2007, 09:06:03 AM »

I had experienced a time of feeling a lost sense of pourpose.  The point I come back to is to make my time as fun and pleasent as possible.  Why am I here on this earth?  I'm not too sure but I plan on having as much fun as I possibly can and maybe in the end I will truly realize how meaningful I was/am.  Even when I had a careear path I was continuously searching for my true "pourpose" and I believe that pourpose may be to have a good time and doing so, others around me will share that which they may or may not have otherwise.
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st789
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« Reply #16 on: May 15, 2007, 11:04:35 AM »

Although I am still young, but I do understand what you all are feeling about.  I do question myself from time to time why being stricken with this illness at an early age and still searching for a purpose in my life.

I think getting out of the house is tremendously helpful and try to take it one day at a time.  Go to the movie definitely help me to forget all of my past and present troubles.
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LightLizard
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« Reply #17 on: May 15, 2007, 04:43:43 PM »

More great answers! You guys are awesome and inspirational, thank you!!

One of the things I've come to learn is the importance of being in the moment. It's something I always paid lip service to, but since my kidneys crashed, I finally started to honor that path, I think.

One thing I love to do is to make people laugh. Even when I first got sick and was going through th diagnosis period. One day, my doctor decided I needed a prostrate examination. :o
He got me in the position and proceeded to put his finger where no man wants another man's finger. It was not too much fun, for me, and I know he was kind of uncomfortable with the whole thing too. (At least, I hope he was!)
After, I said to him, 'gee doc, I had hoped that I would have enjoyed that more...'
He broke up, which was my aim really. ;D

love'n'laffs

~LL~
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Falkenbach
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« Reply #18 on: May 16, 2007, 03:01:12 AM »

I think getting out of the house is tremendously helpful

You are so right! I am on a trivia team, and once a week, regardless of whether I'm feeling well or not, I get into my car (or on the train) and take the trip into the city pub where it's held. If I'm having one of those days where I don't feel well, I usually feel much better when I get there. Our team is a rowdy bunch, and we usually have fun.

I have chosen to stay away from trivia in the final two weeks before my transplant, to make sure I don't pick up any colds/flus etc - normally that is where I would be tonight, and I hate the fact that I'm not going.
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stauffenberg
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« Reply #19 on: May 19, 2007, 09:56:17 AM »

Socrates once said that "the unexamined life is not worth living," and so I think that even people who, because of severe illness, are incapable of doing anything, can nonetheless find sufficient purpose for living in just examining their life and the world around them.  The universe would be a rather meaningless place if there were only plants, rocks, and animals with no humans to observe the panoply of events and form an opinion about its meaning and value.  So every individual can take some pride in being the 'mirror' in which everything takes on its meaning through sentient interpreation.
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