Reducing Expectations

[Wise Young]

Alan recently posted a link the painonline.com site and I found a very interesting article:
http://www.painonline.com/mtstatic/archives/000008.html#more

It is possibly the best statement and defense that I have seen of a strategy that has long been practiced in spinal cord injury care: reduce expectations.

The article is provocatively entitled "The Donner Party Phenomenon" with a lead paragraph about how the Donner party took an unproven short cut that costed the lives and dignity of many in the party, along with cannibalism and indescribable suffering. The moral of the story is that there are dangers associated with taking shortcuts.

Written by Kevin, the article emphasizes "that survival of Central Pain requires lOWERED EXPECTATIONS, not a desperate struggle to match what you were, which expends limited resources."

He goes on to say that "a pervasive realism and curtailment of plans, dreams, and hopes MUST occur to match your diminished capacity. If you do not do this, you will find yourself on Donner Pass, dependent on taking from another what you may not have the right to take, in the illusion that you will soon get back to the way."

The article goes on... I would very much like to know what people think of this.

Wise.

[mike]

Dr Young
I found this to be an excellent article and should be the type of information handed out by health care professionals to patients having
central nerve pain. As a matter of fact I plan on making a copy of it for my doctor.

I don't think that the information should apply to only central nerve pain as it applies to many other problems associated with spinal card injury.For example we have all heard from well meaning friends and relatives that if we work really hard in rehab, many of our problems will go away. There of course is a failure to understand that every case is different and just working hard may not solve the problem.

The only problem that I had with the article was that the thought that by lowering expectations a person might not be able to achieve the most that they can with their condition. For example, I would not want my wife to stop pushing me to do things just because it is hard for me to do them. But I would like her understanding that I am doing as much as I can.

mike

[dejerine]

It is about time "reducing expectations" was mentioned. A reality check. I hope society's rewarding of SCI athletes is not a cover for NOT pushing research. Motor and sensory(pain) deficits are completely different matters. A CP patient can't go out and put his hand in a Bunsen burner so the public can say how courageous he/she is. Harvard Law School published a study saying society changes by "Selma" like incidents, and does nothing as long as the disadvantaged remain quiet. It is true wheelchair races heighten public awareness, but where is the money for the scientists? Eighty five% of basic SCI work is done by post-doctoral fellows on temporary hires who don't even have health insurance for their own families! Maybe we SCI people should "rage against the dying of the light" and start being a little ugly. Catch Dabney Coleman's blind guy act on Saturday Night Live, where he takes someone to task for envying blind peoples "increased ability to smell". "Yeah great, do you have any idea how bad my seeing eye dog smells when it rains?" Activism is American, you just don't have to be self-righteous about it.

[calico]

With chronic pain and disability come chronic depression and the loss of the sense of self, a kind of ego death. So you're not only having to say goodbye to your body's physical capacities, but say goodbye to the very person you were.

I'm talking about a grieving process, not just for the disabled but for the spouse. People do different things when they grieve, some of them alienating. How much alienation can a spouse take? So I don't think it's just the uninjured spouse not being able to handle the disability and reduced expectations, but also the disabled person. Who can I be if I'm not "me" anymore and how can anyone love the new "me"? These are the kinds of things that roll around in one's head, either consciously or unconsciously. How can I be loved for just "being" when I loved myself and thought others loved me for "doing"?

I was pretty clear that my husband would be OK if I could be happy, whether I was able to "do" or not. If I wasn't happy, he wouldn't be happy. So I had to learn to be happy, pain or no pain, or make his life miserable and ultimately lose something ELSE that was extremely important to me. Yes, this required reduced expectations. Not a loss of hope for the future, but a willingess to concentrate with all my might on the part of the glass that was 1/2 full TODAY. This takes a very long time and I can see where many marriages wouldn't survive it. The divorce rate is 50% without these problems.

Anti-depressants, time, love of oneself, love of the other person, distraction. These are the things that helped me.

Calico

[dejerine]

Originally posted by calico:

With chronic pain and disability come chronic depression and the loss of the sense of self, a kind of ego death. So you're not only having to say goodbye to your body's physical capacities, but say goodbye to the very person you were.

I'm talking about a grieving process, not just for the disabled but for the spouse. People do different things when they grieve, some of them alienating. How much alienation can a spouse take? So I don't think it's just the uninjured spouse not being able to handle the disability and reduced expectations, but also the disabled person. Who can I be if I'm not "me" anymore and how can anyone love the new "me"? These are the kinds of things that roll around in one's head, either consciously or unconsciously. How can I be loved for just "being" when I loved myself and thought others loved me for "doing"?

I was pretty clear that my husband would be OK if I could be happy, whether I was able to "do" or not. If I wasn't happy, he wouldn't be happy. So I had to learn to be happy, pain or no pain, or make his life miserable and ultimately lose something ELSE that was extremely important to me. Yes, this required reduced expectations. Not a loss of hope for the future, but a willingess to concentrate with all my might on the part of the glass that was 1/2 full TODAY. This takes a very long time and I can see where many marriages wouldn't survive it. The divorce rate is 50% without these problems.

Anti-depressants, time, love of oneself, love of the other person, distraction. These are the things that helped me.

Calico

[dejerine]

Calico,

I did not mean to replace your post. I haven't yet learned how to make a post to a posting.

I thought your letter was a thing of beauty. Of course we must be loved for being instead of doing. As to whether we can only be loved if we are happy is a disturbing idea, however, to me. Where does happiness fit into torture.

Frankly, the people I email to are not happy if they have severe CP. I would hope that we can also be loved if we can merely generate happiness.

I think it is up to our mates to do whatever they can to get the NIH to research CP pain, so that we can be happy again. In the meantime, we are miserable, and happiness is just one more burden we cannot fulfil, I fear.

I hope I am wrong on this, but generating happiness is what I aim for, but as for my feelings, they are lost in the currents of pain, I do not remember them any more than I remember the sensation of normal touch.

Please convince me I am wrong. I thought your article was beautiful, but unobtainable for me. If I thought I had to be happy I would croak. My satisfaction comes from trying to be decent, and to GENERATE happiness, and try not to let my illlness spill over into the lives of my family any more than it already does. I do wish I could take a vacation with my kids and enjoy that.

But I know survival requires I pull in my horns and merely support them as best as I can. The burning bores in on me 24 hours a day. It is a space/life occupying lesion. Happiness keeps getting crowded out. I can't even wear clothing, bear to lay on the sheets, or endure the air conditioner in the car, nor warm room temperatures. When I mingle with the family, I secretly resent them for the fact I have to wear shorts and a shirt, for I suffer.

This approach, just trying to generate happiness without a thought to actually having any, seems to be working better than when I felt I had to regain the ability to be happy. Sort of like the joke, "Now that I have quit denying I am a jerk, I feel much better".

Best wishes.

[dejerine]

Calico, Kevin at painonline.com wants a female perspective on CP. Please email him at registrant1@comcast.net

[alan]

My diatribe is now at painonline.com.

Alan

[calico]

Dear Dejerine,

Your courage is greater than mine. I am unable to put on a smiling face and exude happiness unless I feel it at my core. I just can't do it. I am too selfish. My admiration for you is beyond words.

I have to control and monitor my environment and activities very carefully to maintain happiness. I can't do it if I'm pushed to increase my pain or stress. I don't know that I ever will.

Achieving unobtainable happiness didn't come like a thunderbolt. One day I walked outside and looked at the sky and thought "Somewhere, someone is doing something that is going to help me someday" and I felt hopeful, a prerequisite for me to be happy. I don't know who or where or what but it is happening. This isn't just Polly Anna dreaming.

Another time I remember sitting on the screen porch and realizing how much I was enjoying the beauty of watching the bees and the butterflies over the wildflowers.

Another time I was sitting at the kitchen table with my sister and her friend and I thought "Hey, I just laughed and felt 'normal' for a moment".

Shadows, glimpses of happiness at first. Seconds in a day but I thought if I could feel it for just one moment maybe the moments could turn into minutes, the minutes to hours. That's how it was for me.

Love,

Calico

P.S. Sorry if this should be on the Lifestyle forum. Blame it on Dr. Wise. He started it! http://sci.rutgers.edu/forum/images/smilies/smile.gif