SCI myths for Book to Promote Cure - Page 6

DA · 07-23-2003, 02:03 PM

that was beautiful red_1_canada and i agree.
i think so many ppl lie about being happy to show toughness. i know, i went through that toughness phase 15 years ago. but i got tired giving a fake ass buckwheat smile so ab's can feel comfortable.

07-23-2003, 02:11 PM

I knew you'd come back larwatson

- if you haven't had time to read my response to LindsayS, please do.

A few comments:

I have no doubt you have a good life. I do have trouble seeing how you use the arguments of a beautiful wife, nice car, house, and great career as being good parts of SCI. Those are aspects of your life unrelated to SCI. I have a lot more money now than I would have if I wouldn't have been in the accident, but I will never consider that a good thing. Material possessions mean little to me. I also know that you feel your life could be better; otherwise you wouldn't work so damn hard.

I do what Joni does, but I hardly consider that an independent life. Independence, to me, is not having to have Personal Care Attendants. Until I get to that point, I'm NOT independent.

If you don't think anybody will buy the book, what's the harm in writing it?

My original "high horse" comment was meant to point out that your post seemed to imply that because you didn't fit into the stereotypes, nobody has to. It rubbed me the wrong way - especially the "being cared for" one. How many AB's would consider their lives as independent if they required help with transfers, bowel program, etc.?

Chris Chappell · 07-23-2003, 02:33 PM

...cautiously weighing in...

Here goes. I'll try and keep it short and simple.

1. I support Debbie's efforts to write and publish a book related to SCI. I DON'T agree with her content and/or the anticipated public perception. Darkness begets more darkness imho.
(however please read my last paragraph)

2. Age, experiences, ideas and perspective change over time. What you may believe with your heart and soul at 23 could easily change by 33. Time brings wisdom simply because you, hopefully, make less mistakes.

3. SCI Sucks. How you choose to fight this battle (everyone's definition and situation is unique) is entirely up to you. But I will applaud Polett because she summed it up nicely by saying with or without sci - life is hard. Is it harder with sci? Most would say yes because of independence/accessibility issues. But some would say No because their life is fulfilled with other things - career, family, fun, etc. (Ask my para friend who is 20 yrs post, a weather anchor from her chair on a major network and is recovering from chemotherapy and fighting breast cancer with three daughters by her side yet still asks me when the "cure" is coming?) Does she care less than you or I? Or is she in denial? Or is she simply making the best of an awful situation so that she can be a part of life?

4. In the past two years I've had two sci-ed friends commit suicide - one para, one quad. And my cousin died in the NYC WTC attack. I'm sad that they're gone. Do I want to join them? No. So, since my answer is No then I better get busy trying to improve my life/situation. What's your answer?

5. Bent said it right. Even with millions a "cure" is still not available. Progress needs to continue. The momentum must grow. What part will you play in that progress/momentum?

Finally, I'm not on a high horse as my friend cjo indicated. I'm on a different horse. Maybe right, maybe wrong - I don't know. But what I do know from monthly personal experience, when I give my "Craig" talks as well as the other groups (kiwanis, Lions, CoC)and I talk about being part of the cure and the realities of science/regeneration, etc. people sit there with rapt attention. The second I descend (or even hint) into the horrors of sci is the same second I lose my audience. Privately is one thing. Publicly, another. Again, I suggest you read Susan Parker's book - Tumbling After before you condemn my comments.

And I promise to buy and read Debbie's book objectively and without bias. Until then I can only comment on what's been written in this thread. For that I apologize to Debbie because I really don't know what it (the book) says.

So much for being short.

Peace.

07-23-2003, 03:03 PM

ChrisD,

Before you go getting angry at me for the high horse comment, please read all of my subsequent posts. I included you because you agreed with larwatson. While the great majority of SCIs don't need to be cared for, some do. That shouldn't be kept from the general public. I don't feel I should be looked down upon because I'm slightly higher than you and larwatson and can't care for myself. I'm sure that's not how it was intended, but that was the way I initially interpreted it.

larwatson · 07-23-2003, 04:15 PM

Quote:

Originally posted by cjo:

ChrisD,

Before you go getting angry at me for the high horse comment, please read all of my subsequent posts. I included you because you agreed with larwatson. While the great majority of SCIs don't need to be cared for, some do. That shouldn't be kept from the general public. I don't feel I should be looked down upon because I'm slightly higher than you and larwatson and can't care for myself. I'm sure that's not how it was intended, but that was the way I initially interpreted it.

I have to make this quick. But my comment on the stereotype of "having to be cared for" had nothing to do with PCA issues. I meant it with regard to those agencies/persons who feel they need to protect us from our own decisions. If I decide I want to parachute than that's my decision. If I decide I want to be a truck driver rather than a social worker than that's my decision. People with SCI need not be coddled or protected from the harshness of life . . . we can deal . . . we can make our own way . . . we need not be cared for.

I apologize to you CJO and those others who took my comment to mean otherwise. That was not how it was intended. I relied on PCA's the first three years after my injury. I understand the issues and would be the last to say that those who use PCA's are promoting a stereotype. There is no shame in using PCA's, they are a necessary part of life as SCI in many instances.

And yes CJO if you define independence as being free from use of PCA's then Joni is not independent. I define independence as having control over thedecisions in one's life. And with reggard to that definition Joni is in fact independent.

Christopher Paddon · 07-23-2003, 10:05 PM

Red 1 Canada - totally agree - great post.

Let's stop pretending SCI is anything other than intolerable. As CJO said, any good things that happen to us (as to Larwatson) are nothing to do with SCI.

LindsayS - I believe that you are a nice person so I am waiting for your apology.

Lshall82978@yahoo.com · 07-24-2003, 04:33 AM

I'm sorry Chris2.

Polett · 07-24-2003, 07:12 AM

For starters, I don't agree w/Lindsay about walking in heaven. It's simply NOT enough for me.
Second, Bent: I need a house, new w/c, equiped van & covered expenses to project walk

I guess I'm very bad at expresing myself... I'll try again:
I AM NOT HAPPY THAT I HAD A SCI, however, I LOVE challenges and, to me, this is just another one. I'll beat SCI, I'll walk again! (even if I'm 99 and need a cain) If I would have been given the choice of what challenge to take on, OF COURSE I would NOT have chosen this... or maybe yes... I don't know what the other alternatives could have been.

Someone told me once that before we r born, we r given the choice of what life to live. I do not believe in this and many other things but, if it were to be truth, think of this, what can u deal better with? SCI or been one of those tortured forever women from Husseins sons? SCI or beng one of his sons? SCI or some lunatic nutjob that would end up in jail and becoming some mate's toy? There r things n choices in life that can make a person w/o a disability 10.000 times more miserable than us with a Spinal Cord Injury. NOBODY can BUY happiness no matter how fast u can run, wheel, kill or live. You r the only one that can find happiness by taking a second to think what it really means and, figure a way to feel it.

You can say that walking will give u happiness but, there will always be a "reason" to be sad... "waisted" time... chances... careers... loves... etc. Imagine walking and whinning of how u "waisted" all them years in a w/c because a clonned cell didn't knock at your door when u expected it?

CJO: u said u r embarresed of what you have "becomed" when u see yourself in the mirror... I ask u: what/who do u see? The only diference is that u r in the sitting position... this is transitory.

Red_1_Canada: I agree with them, SCI should not be considered an impairment to work. U still have full use of your brain and there is a WIDE market for this which, by the way, is VERY well paid.

There r 2 types of people I've met along my path: those who need problems to dwell on, and those who turn problems into goals, achieve them and ENJOY the 5 min. laughs they get throughout the day and process of achievement.

Last thing n sorry about such long post, Para or quad, young or old, acute or chronic... dreams remain the same FREEDOM TO MOVE. so don't excuse your depression with "i'm worst thAn u" or "I'm in denial stage" or "i'ts been too long, who cares about recovery"... If u dare dream of walking (even if it's in heaven) then it means u still hope to achieve it someday. Heaven us just a "play it safe to yourself" way as obvously you won't miss that deadline.

...and the soul afraid of dyin'... That never learns to live...

mk99 · 07-24-2003, 09:25 AM

Bent, why don't you help yourself by donating some money to people & places that are agressively pursuing cure and even doing human trials today? You'd be surprised how far a few thousand dollars can go in the right hands.

Feel free to email me for bank account info for donations to:

Dr. Huang (Bejing)
Dr. Bruhovetsky (Russia)

Chris Chappell · 07-24-2003, 10:45 AM

cjo, I'm not angry????. I simply responded to your "horse" comment.

Yes, on most points, I do agree with larwatson.
I think that our perspectives, for a variety of reasons, are different than the majority on CC - or at least those who post.

I'm not advocating that anythng be kept from the "general public". I simply don't agree that by displaying it in detail (graphic or otherwise, written or visual) is the best way to 'educate' the public and more importantly garner their support. I believe in the old cliche that you "get more flies with honey than with vinegar".

Noone here, especially not me, is looking "down upon" you. In fact just the opposite. I respect and value your, and anyone else's, opinion. What I don't value, in general, are flippant, knee-jerk reaction posts that are not thought out, not unique, repetitive, self serving, lazy, whiney, void of audience consideration and show a poverty of imagination. I too am guilty of such posts but I'm trying to improve.

We're members of a club we never wanted to join. But, we're here. So, let's get busy living and progressing towards greater things - i.e. cure. In the meantime minutes, days, weeks and months go by. What do you/we do with the time? We get on with life as best as we can but strive for more. Life, believe it or not (I can already feel the flames) is 90% from the neck up. From what I can tell most members can read, write and articulate a thought. With those abilities much can be accomplished.

For as bad as sci is there are worse conditions. Personally, if I were walking around and perfectly healthy physiologically but didn't know who, what, where I was and psychologically couldn't remember one minute to the next that would be pure hell - especially on my loved ones.

Emotions run high and hot here on CC. Unfortunately, outbursts (because we're sad, angry, hurt, frustrated, etc.) generally don't do anybody any good and imho belong on another forum if we can catch ourselves.

To recap:

1. I'm not angry
2. I respect and value you cjo. I do not look down upon you or anyone else.
3. I don't believe in misery.
4. We all hate sci. Why else would we be here?
5. My horse is simply different.
6. I apologize for straying off of Debbie's topic.
7. Let's keep working towards Jeff's reunion.

Peace.

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07-23-2003, 02:03 PM	#51
DA Senior Member Join Date: Jul 2001 Location: beaumont tx usa Posts: 32,390	that was beautiful red_1_canada and i agree. i think so many ppl lie about being happy to show toughness. i know, i went through that toughness phase 15 years ago. but i got tired giving a fake ass buckwheat smile so ab's can feel comfortable.

07-23-2003, 02:11 PM	#52
Guest Posts: n/a	I knew you'd come back larwatson - if you haven't had time to read my response to LindsayS, please do. A few comments: I have no doubt you have a good life. I do have trouble seeing how you use the arguments of a beautiful wife, nice car, house, and great career as being good parts of SCI. Those are aspects of your life unrelated to SCI. I have a lot more money now than I would have if I wouldn't have been in the accident, but I will never consider that a good thing. Material possessions mean little to me. I also know that you feel your life could be better; otherwise you wouldn't work so damn hard. I do what Joni does, but I hardly consider that an independent life. Independence, to me, is not having to have Personal Care Attendants. Until I get to that point, I'm NOT independent. If you don't think anybody will buy the book, what's the harm in writing it? My original "high horse" comment was meant to point out that your post seemed to imply that because you didn't fit into the stereotypes, nobody has to. It rubbed me the wrong way - especially the "being cared for" one. How many AB's would consider their lives as independent if they required help with transfers, bowel program, etc.?

07-23-2003, 02:33 PM	#53
Chris Chappell Senior Member Join Date: Jul 2001 Location: Denver, CO Posts: 7,035	...cautiously weighing in... Here goes. I'll try and keep it short and simple. 1. I support Debbie's efforts to write and publish a book related to SCI. I DON'T agree with her content and/or the anticipated public perception. Darkness begets more darkness imho. (however please read my last paragraph) 2. Age, experiences, ideas and perspective change over time. What you may believe with your heart and soul at 23 could easily change by 33. Time brings wisdom simply because you, hopefully, make less mistakes. 3. SCI Sucks. How you choose to fight this battle (everyone's definition and situation is unique) is entirely up to you. But I will applaud Polett because she summed it up nicely by saying with or without sci - life is hard. Is it harder with sci? Most would say yes because of independence/accessibility issues. But some would say No because their life is fulfilled with other things - career, family, fun, etc. (Ask my para friend who is 20 yrs post, a weather anchor from her chair on a major network and is recovering from chemotherapy and fighting breast cancer with three daughters by her side yet still asks me when the "cure" is coming?) Does she care less than you or I? Or is she in denial? Or is she simply making the best of an awful situation so that she can be a part of life? 4. In the past two years I've had two sci-ed friends commit suicide - one para, one quad. And my cousin died in the NYC WTC attack. I'm sad that they're gone. Do I want to join them? No. So, since my answer is No then I better get busy trying to improve my life/situation. What's your answer? 5. Bent said it right. Even with millions a "cure" is still not available. Progress needs to continue. The momentum must grow. What part will you play in that progress/momentum? Finally, I'm not on a high horse as my friend cjo indicated. I'm on a different horse. Maybe right, maybe wrong - I don't know. But what I do know from monthly personal experience, when I give my "Craig" talks as well as the other groups (kiwanis, Lions, CoC)and I talk about being part of the cure and the realities of science/regeneration, etc. people sit there with rapt attention. The second I descend (or even hint) into the horrors of sci is the same second I lose my audience. Privately is one thing. Publicly, another. Again, I suggest you read Susan Parker's book - Tumbling After before you condemn my comments. And I promise to buy and read Debbie's book objectively and without bias. Until then I can only comment on what's been written in this thread. For that I apologize to Debbie because I really don't know what it (the book) says. So much for being short. Peace.

07-23-2003, 03:03 PM	#54
Guest Posts: n/a	ChrisD, Before you go getting angry at me for the high horse comment, please read all of my subsequent posts. I included you because you agreed with larwatson. While the great majority of SCIs don't need to be cared for, some do. That shouldn't be kept from the general public. I don't feel I should be looked down upon because I'm slightly higher than you and larwatson and can't care for myself. I'm sure that's not how it was intended, but that was the way I initially interpreted it.

07-23-2003, 10:05 PM	#56
Christopher Paddon Senior Member Join Date: Oct 2001 Location: New Zealand Posts: 3,207	Red 1 Canada - totally agree - great post. Let's stop pretending SCI is anything other than intolerable. As CJO said, any good things that happen to us (as to Larwatson) are nothing to do with SCI. LindsayS - I believe that you are a nice person so I am waiting for your apology.

07-24-2003, 04:33 AM	#57
Lshall82978@yahoo.com Senior Member Join Date: Jan 2002 Posts: 957	I'm sorry Chris2.

07-24-2003, 07:12 AM	#58
Polett Senior Member Join Date: Jan 2002 Location: Florida, U.S.A. Posts: 1,033	For starters, I don't agree w/Lindsay about walking in heaven. It's simply NOT enough for me. Second, Bent: I need a house, new w/c, equiped van & covered expenses to project walk I guess I'm very bad at expresing myself... I'll try again: I AM NOT HAPPY THAT I HAD A SCI, however, I LOVE challenges and, to me, this is just another one. I'll beat SCI, I'll walk again! (even if I'm 99 and need a cain) If I would have been given the choice of what challenge to take on, OF COURSE I would NOT have chosen this... or maybe yes... I don't know what the other alternatives could have been. Someone told me once that before we r born, we r given the choice of what life to live. I do not believe in this and many other things but, if it were to be truth, think of this, what can u deal better with? SCI or been one of those tortured forever women from Husseins sons? SCI or beng one of his sons? SCI or some lunatic nutjob that would end up in jail and becoming some mate's toy? There r things n choices in life that can make a person w/o a disability 10.000 times more miserable than us with a Spinal Cord Injury. NOBODY can BUY happiness no matter how fast u can run, wheel, kill or live. You r the only one that can find happiness by taking a second to think what it really means and, figure a way to feel it. You can say that walking will give u happiness but, there will always be a "reason" to be sad... "waisted" time... chances... careers... loves... etc. Imagine walking and whinning of how u "waisted" all them years in a w/c because a clonned cell didn't knock at your door when u expected it? CJO: u said u r embarresed of what you have "becomed" when u see yourself in the mirror... I ask u: what/who do u see? The only diference is that u r in the sitting position... this is transitory. Red_1_Canada: I agree with them, SCI should not be considered an impairment to work. U still have full use of your brain and there is a WIDE market for this which, by the way, is VERY well paid. There r 2 types of people I've met along my path: those who need problems to dwell on, and those who turn problems into goals, achieve them and ENJOY the 5 min. laughs they get throughout the day and process of achievement. Last thing n sorry about such long post, Para or quad, young or old, acute or chronic... dreams remain the same FREEDOM TO MOVE. so don't excuse your depression with "i'm worst thAn u" or "I'm in denial stage" or "i'ts been too long, who cares about recovery"... If u dare dream of walking (even if it's in heaven) then it means u still hope to achieve it someday. Heaven us just a "play it safe to yourself" way as obvously you won't miss that deadline. ...and the soul afraid of dyin'... That never learns to live...

07-24-2003, 09:25 AM	#59
mk99 Senior Member Join Date: Jul 2001 Location: toronto, canada Posts: 3,494	Bent, why don't you help yourself by donating some money to people & places that are agressively pursuing cure and even doing human trials today? You'd be surprised how far a few thousand dollars can go in the right hands. Feel free to email me for bank account info for donations to: Dr. Huang (Bejing) Dr. Bruhovetsky (Russia)

07-24-2003, 10:45 AM	#60
Chris Chappell Senior Member Join Date: Jul 2001 Location: Denver, CO Posts: 7,035	cjo, I'm not angry????. I simply responded to your "horse" comment. Yes, on most points, I do agree with larwatson. I think that our perspectives, for a variety of reasons, are different than the majority on CC - or at least those who post. I'm not advocating that anythng be kept from the "general public". I simply don't agree that by displaying it in detail (graphic or otherwise, written or visual) is the best way to 'educate' the public and more importantly garner their support. I believe in the old cliche that you "get more flies with honey than with vinegar". Noone here, especially not me, is looking "down upon" you. In fact just the opposite. I respect and value your, and anyone else's, opinion. What I don't value, in general, are flippant, knee-jerk reaction posts that are not thought out, not unique, repetitive, self serving, lazy, whiney, void of audience consideration and show a poverty of imagination. I too am guilty of such posts but I'm trying to improve. We're members of a club we never wanted to join. But, we're here. So, let's get busy living and progressing towards greater things - i.e. cure. In the meantime minutes, days, weeks and months go by. What do you/we do with the time? We get on with life as best as we can but strive for more. Life, believe it or not (I can already feel the flames) is 90% from the neck up. From what I can tell most members can read, write and articulate a thought. With those abilities much can be accomplished. For as bad as sci is there are worse conditions. Personally, if I were walking around and perfectly healthy physiologically but didn't know who, what, where I was and psychologically couldn't remember one minute to the next that would be pure hell - especially on my loved ones. Emotions run high and hot here on CC. Unfortunately, outbursts (because we're sad, angry, hurt, frustrated, etc.) generally don't do anybody any good and imho belong on another forum if we can catch ourselves. To recap: 1. I'm not angry 2. I respect and value you cjo. I do not look down upon you or anyone else. 3. I don't believe in misery. 4. We all hate sci. Why else would we be here? 5. My horse is simply different. 6. I apologize for straying off of Debbie's topic. 7. Let's keep working towards Jeff's reunion. Peace.