Re: Daily life and limited abilities (Family Matters)

May 19, 1998

Penny & All,

The course of affairs you capsule is certainly familiar to me, and I'm

sure to many others. I have made many concessions to the realities of my

disability. In a perfect world, perhaps that would be enough. But it hasn't

been for me. After resignation & acceptance, I also found myself at odds

with my family over what I couldn't do. I am now divorced, and still my

ex-wife cannot grasp the concept that I am limited. I used to write this

off to my having been a high-profile high-achiever, and not being realistic

enough to accept and adjust to my disability earlier. Accepting it &

adjusting to it resulted in family acquiescence for awhile, but then my

increasingly being targeted for criticism and demeaning interactions.

I found myself faced with an intolerable family situation, after 20 years

of marriage, and had to completely re-establish myself. To this day my

ex-wife strongly believes I rejected her (It was her decision to divorce!).

What I rejected was being demeaned to a demoralizing extent, and it took me

several years of living solo to regain self-respect and confidence. This

is in no way intended as predictive for others, but an observation from my

own life.

Two important experiences need to be mentioned to put this in perspective:

1) In the support group I conducted for several years where I live, I found

a good number of committed relationships where the partner was both very

realistic and supportive. However the statistics on chronic pain related

family breakdown are horrifying. I think it is a testament to those family

members of ours who are willing to look beyond their own needs & wishes and

reach out to us at our worst that there really are true adults who continue

to or learn how to care.

2) From observations painfully made in my own family in the northeast US

where everybody is tied into a pressure cooker existence, the numbers of

spouses able & willing to truly understand the plight of the other, once

become disabled, appeared unexplainably poor. When you consider my former

wife, a rehabilitation professional dealing with severe disability every

workday, it is hard to explain the lack of actual comprehension. My closest

friends are a couple who lived near us in New York, where the wife

developed chronic pain & a number of related conditions. But they were not

diagnosed for about 15 years, largely due to denial, and family anger that

she was simply not being responsible. And although the husband finally took

the reins and demanded that doctors account for his wifes difficulties, and

could be most compassionate to me in my situation, he cannot understand the

depth of her problems. Fortunately, however, their relationship has

stabilized, but whenever I have time to talk alone to the wife, she is

desperate to discuss her disability & coping, because its still not

comprehended in the family.

While my personal observations don't make valid research, I have

concluded that those who love us, for whatever reason, are often incapable

of seeing our situations clearly in the main, and can become our worst

enemies. I only wish I knew what makes some of those special 'significant

others' so much better able to see & show empathy. But I simply haven't a

clue!

Ken

At 11:44 PM 5/18/98 +0000, you wrote:

>From: penny_kjelgaard@...

>

>Ken, you pose a question that probably all of us have delt with on every

>level possible.

>Here is my take:

>

>I do what I can when I can. I get very frustrated when I am unable to do

>things that need to be done. I get even more frustrated when people try

>to get me to do more than I have strength to do. I am 36 now, not old,

>but mature enough to know that life is not a race. It was when I was

>younger. Now I realize that the sun will still rise and set if the

>dishes are not done, if I miss a night activity because I am too tired to

>go, or if the yard has weeds...big weeds. My first priority in life is

>my husband and daughter and the relationship I have with them. They come

>first...if I have strength then left others may come later.

>

>I keep my goals flexible. I used to write down a list of goals I wanted

>to accomplish in a year. I did several, but realized that there were too

>many. I have since not done a list, but I may in the future, just

>because I like looking back to see what I have done. Also, is it quite a

>testament to what I can do...writing down all those things I have done

>with my limited abilities.

>

>I keep my stress level manageable. I have also learned that when I feel

>good I cannot cram my life with things demanding long term committment,

>since my good health can so easily evade me.

>

>I also vary my activities. Too much arm work makes my back hurt, so I

>have to stop and stretch, or other things...like check my

>email...read...watch tv...call a friend.. take a walk...play with my

>daughter....

>

>I also believe that God knows exactly what I am going through and how

>successful I truely am in life.

>

>Peace,

>Penny

>

> " You cannot do wrong and feel right. It is impossible! "

>Ezra Taft Benson

>-----------------------------------------------

>orphan_kittensonelist - orphan kitten mailing list

>http://www.geocities.com/Heartland/Flats/8850/ - orphan kitten homepage

>

>_____________________________________________________________________

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May 20, 1998

,

You make many good points in your response (see below). I have lived with

chronic pain from Reiters Syndrome for 24+ years. I have to agree with you

that one's spouse may not always be able to fully comprehend the extent of

your disability from pain and inflamation, etc. My wife is a doctor and has

only recently begun to really understand as she has developed the first

tinges of arthritis in her hands and feet. My two older children (ages 22,

and 24) seem to have a good understanding of my disability. However, our 18

year old daughter just doesn't believe me when I say that I hurt or that I

have extreme fatique from the inflamatory processes of my disease. She has

recently encountered difficulties with carpal tunnel syndrome from horseback

riding competitions and that has helped her in understanding my disease.

I'm sorry for my wife's and daughter's pain, but I am glad they have a

better understanding of what I have been going through.

Ray in Virginia

Re: Daily life and limited abilities (Family

Matters)

>

>Penny & All,

>

> The course of affairs you capsule is certainly familiar to me, and I'm

>sure to many others. I have made many concessions to the realities of my

>disability. In a perfect world, perhaps that would be enough. But it hasn't

>been for me. After resignation & acceptance, I also found myself at odds

>with my family over what I couldn't do. I am now divorced, and still my

>ex-wife cannot grasp the concept that I am limited. I used to write this

>off to my having been a high-profile high-achiever, and not being realistic

>enough to accept and adjust to my disability earlier. Accepting it &

>adjusting to it resulted in family acquiescence for awhile, but then my

>increasingly being targeted for criticism and demeaning interactions.

> I found myself faced with an intolerable family situation, after 20 years

>of marriage, and had to completely re-establish myself. To this day my

>ex-wife strongly believes I rejected her (It was her decision to divorce!).

>What I rejected was being demeaned to a demoralizing extent, and it took me

>several years of living solo to regain self-respect and confidence. This

>is in no way intended as predictive for others, but an observation from my

>own life.

> Two important experiences need to be mentioned to put this in perspective:

>1) In the support group I conducted for several years where I live, I found

>a good number of committed relationships where the partner was both very

>realistic and supportive. However the statistics on chronic pain related

>family breakdown are horrifying. I think it is a testament to those family

>members of ours who are willing to look beyond their own needs & wishes and

>reach out to us at our worst that there really are true adults who continue

>to or learn how to care.

>2) From observations painfully made in my own family in the northeast US

>where everybody is tied into a pressure cooker existence, the numbers of

>spouses able & willing to truly understand the plight of the other, once

>become disabled, appeared unexplainably poor. When you consider my former

>wife, a rehabilitation professional dealing with severe disability every

>workday, it is hard to explain the lack of actual comprehension. My closest

>friends are a couple who lived near us in New York, where the wife

>developed chronic pain & a number of related conditions. But they were not

>diagnosed for about 15 years, largely due to denial, and family anger that

>she was simply not being responsible. And although the husband finally took

>the reins and demanded that doctors account for his wifes difficulties, and

>could be most compassionate to me in my situation, he cannot understand the

>depth of her problems. Fortunately, however, their relationship has

>stabilized, but whenever I have time to talk alone to the wife, she is

>desperate to discuss her disability & coping, because its still not

>comprehended in the family.

> While my personal observations don't make valid research, I have

>concluded that those who love us, for whatever reason, are often incapable

>of seeing our situations clearly in the main, and can become our worst

>enemies. I only wish I knew what makes some of those special 'significant

>others' so much better able to see & show empathy. But I simply haven't a

>clue!

> Ken

>At 11:44 PM 5/18/98 +0000, you wrote:

>>From: penny_kjelgaard@...

>>

>>Ken, you pose a question that probably all of us have delt with on every

>>level possible.

>>Here is my take:

>>

>>I do what I can when I can. I get very frustrated when I am unable to do

>>things that need to be done. I get even more frustrated when people try

>>to get me to do more than I have strength to do. I am 36 now, not old,

>>but mature enough to know that life is not a race. It was when I was

>>younger. Now I realize that the sun will still rise and set if the

>>dishes are not done, if I miss a night activity because I am too tired to

>>go, or if the yard has weeds...big weeds. My first priority in life is

>>my husband and daughter and the relationship I have with them. They come

>>first...if I have strength then left others may come later.

>>

>>I keep my goals flexible. I used to write down a list of goals I wanted

>>to accomplish in a year. I did several, but realized that there were too

>>many. I have since not done a list, but I may in the future, just

>>because I like looking back to see what I have done. Also, is it quite a

>>testament to what I can do...writing down all those things I have done

>>with my limited abilities.

>>

>>I keep my stress level manageable. I have also learned that when I feel

>>good I cannot cram my life with things demanding long term committment,

>>since my good health can so easily evade me.

>>

>>I also vary my activities. Too much arm work makes my back hurt, so I

>>have to stop and stretch, or other things...like check my

>>email...read...watch tv...call a friend.. take a walk...play with my

>>daughter....

>>

>>I also believe that God knows exactly what I am going through and how

>>successful I truely am in life.

>>

>>Peace,

>>Penny

>>

>> " You cannot do wrong and feel right. It is impossible! "

>>Ezra Taft Benson

>>-----------------------------------------------

>>orphan_kittensonelist - orphan kitten mailing list

>>http://www.geocities.com/Heartland/Flats/8850/ - orphan kitten homepage

>>

>>_____________________________________________________________________

>>You don't need to buy Internet access to use free Internet e-mail.

>>Get completely free e-mail from Juno at http://www.juno.com

>>Or call Juno at (800) 654-JUNO [654-5866]

>>

>>--------------------------------------------------------------------------

---

>>Help ONElist keep this service free, while generating interest in your

>>product or service. ONElist has a variety of advertising packages.

>>Visit http://www.onelist.com/advert.html for more information.

>>--------------------------------------------------------------------------

---

>>

>

>---------------------------------------------------------------------------

--

>Help ONElist keep this service free, while generating interest in your

>product or service. ONElist has a variety of advertising packages.

>Visit http://www.onelist.com/advert.html for more information.

>---------------------------------------------------------------------------

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>

May 20, 1998