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    #16
    "BTW, what was the method of suicide? I don't think you'll be encouraging its use. From my gleaning, it doesn't seem very appealing"- Bob Clark
    He initially attempted via one of the most common ways- an overdose, oxycodone. Unfortunately it has (tylenol- I forget whether it is tylenol of acetomitophen)) that caused kidney,liver and brain damage. Once those organs are involved- it is often longterm damage. That was the case here. He had to go onto kidney dialysis, which took many months to get over. He had to have a feeding tube placed, and intermittently had to have TPN ( IV fluids that replaced food with needed supplements). First bedsores which of course were stage III om his sacrum. I believe in the end he had to get a colostomy. Being in the hospital made him lose much ground physically- no longer got out of bed daily, not wearing street clothes all of which lead down the depression trail . He overcome the kidney failure , the colostomy was reversible and his skin improved but was not healed completely. In the end he was able to eat some foods, off TPN, his feeding tube was in, but no longer required. Of course he was not back to his healthy self but he was survivable. He had gone through a tremendous amount - I just think in the end, he calculated that he could not afford everything out of pocket in the nearterm nor in the future. It was just too much. I am forever changed by his passing in my life. As fishin' guy knows, you all leave impressions on us therapists. Please know that the experience you have shared with us helps us to be better people and better therapists. thank you for this very special opportunity.
    With the greatest of respect to you all,
    Pam OTR/L

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      #17
      Originally posted by maximus1 View Post
      People fail to see how often SCI is a terminal illness.
      SCI is NOT a terminal illness.

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        #18
        Adi........oh, wait.....Maximus......yeah, that's it. Life is terminal. It is how you choose to spend the time you have that matters.

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          #19
          Originally posted by LaMemChose View Post
          SCI is NOT a terminal illness.
          He was quoting Betheny.

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            #20
            Originally posted by shelley View Post
            He was quoting Betheny.
            Thanks Shelley.

            To anyone who said it, SCI is NOT a terminal illness. Disability, in general, is NOT a terminal illness. As Eileen said, life may be, but beyond that, not so much.

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              #21
              Pam, so sorry to hear...prayers for all...

              take care...

              Teena

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                #22
                Originally posted by LaMemChose View Post
                SCI is NOT a terminal illness.
                I didn't say that it always is. I said it can be. Look around. How many have we lost, that we know of, from CC this year? How many that never posted are gone now, too?

                Life is a terminal illness. We roll closer to the edge, though, than the average AB. The suicide stats for the first 3 years of SCI are staggering. Add in the quad whose power chair died, and left her stranded in the sun, 18 inches from the lifesaving shade. Add those that can't take chemo for cancer, due to SCI complications. Those that died w/ a piece of pork chop lodged in their esophagus, lacking the wind to dislodge it. Those that died of allergic reaction to an antibiotic that would never have been required for a pressure sore that never would have happened, had they been AB. Those whose UIT's went systemic. Those that got nosocomial MRSA, and died from it, because they had to be hospitalized for a condition that would have been treated at home, had they been AB.

                We have more UTI's, more pneumonia, more skin problems, more hospital admissions, more erroneous diagnoses. And we kill ourselves, too.

                I'm not saying SCI IS a terminal illness. I just say it CAN be.

                I wrote this speech in 2006, for a CDRPA rally in DC. Quoting oneself is bad manners but the intro kind of says what I'm talking about...

                Well, here I am again, looking at friends old and new. I first did this a year ago. We were strangers to each other then. Yet when we came together it was like a chemical reaction. It was a reaction catalyzed by the loss of Christopher Reeve. Last year's rally was the appropriate ceremony for us to mark his passing. I still believe today that it was the only fitting response.

                Christopher Reeve's death was a shock for many of us, and a call to action. We finally realized that there is nobody else to fight this war against paralysis. It is up to us. We are the soldiers,the generals, the commanders-in-chief. In paralysis, as in a war, the repercussions ring far into the future.

                And just like soldiers, all too often we bury our dead.


                At the rally that April morning a year ago, Dana Reeve sat on this stage. She joined us, to help us honor her fallen soldier and to help us complete his mission. She came to our rally to aid us as we formed the squadron that embarked on a sortie in our nation's Capitol...which is also our battlefield.


                Melodramatic? Maybe. Remember the political climate at the time. It felt like a battle to me. And I still maintain that SCI claims far too many of us, in one way or another.
                Blog:
                Does This Wheelchair Make My Ass Look Fat?

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                  #23
                  Fantastic article Betheny. Never feel awkward about quoting yourself. You have a gift with words and I always treasure your posts.

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                    #24
                    What you wrote was great, B. I get it. Guess I'm fighting against how others in the ab world perceive us more and more lately. I'm bumping against more ab's who do view us as terminal and not in the life is terminal sense.

                    You and I had dicussed just this week the woman who'd been in the sun and had almost made it the additional foot and a half to the shade. She didn;t and died. There have been those among us who've killed themsaelves due to depression directly linked to SCI, infections, etc.

                    I get that SCI kills many of us off more quickly than we'd otherwise go. I also get that we're trying so very hard to push for equality in this world and it just far too often is not there based upon disability.

                    You didn't go all Jerry Lewis/MDA Telethon on us and I know better than to think you would. Still, I'm wondering where that line is. Mine may not be where yours is and vice versa. It may be different for each of us.

                    I cannot get too far into viewing SCI as terminal because it's a very unhealthy place for me. Perhaps that's denial. I just know I cannot go there.

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                      #25
                      I've never gotten the Jerry Lewis Resentment Syndrome, but I know it exists and is a strong force. Personally, if I knew my looking pathetic would pay for 1 clinical trial, I'd let the drool flow.

                      I just saw that documentary "Cody" last night. Can't wait for the rest of you to see it. She is so strong and bubbly and perky, but the film also shows a lot of her struggles and a lot of "Yeah it sucks when I fall in the tub, but it's my life and I love it. Now let's get this cure business going, so I can love it even more."

                      When Cody gets back pains, she sees Dr. Kerr. When she needs PT advice, she sees Dr. MacDonald. She's got the FES bike, standing frame, goes to KKI to tweak her workouts. How many of us have that kind of resources?

                      That is what I, a quad, saw. But at the Q & A afterwards it was clear that the AB members of the audience were most moved by the scene when Cody fell twice getting out of the tub. A woman was sobbing, saying "I can't imagine it taking 25 minutes to take a shower!"

                      The producer did a great job of balancing the Cody that struggles with the Cody that hangs with her friends, goes to class, works hard to maintain her health. But apparently you have to expose the downside to elicit response from the general population.

                      I wish I'd had a chance to get the reaction from an audience member that doesn't know the Unsers. Jill and I do, so our perspective is different. But I think ol Jerry kind of knew what he was doing. And when he got old and pathetic, he kept himself onstage. He just didn't see anything wrong with the decrepit on display, I guess.

                      What is it we fear about being Jerry's Kids? That the general population will treat us as Other, or as Less Than? Because I think the only way to fight that is by doing what we do...every day we wake up strong enough, we need to be going out, being members of society, and doing what the rest of the world does. I think those barriers will be brought down smile by smile, handshake by handshake.

                      Putting a bright cheery face on paralysis won't change the fact that it pretty much sucks. It just makes the rest of the world wonder why we complain so much about not walking.

                      Also, I kind of see what you mean, La Mem. And I'd never say sci is a death sentence. Just that it's a whole lot closer to terminal than being AB, like I was for 40 years. I think it was terminal for SCI-OTR's friend, it wore him down and it killed him. If I'd not been sci when I got graves disease, I'd be in a whole lot better shape than I am now. I'd have been diagnosed sooner and treated differently. SCI is sneaky in the ways it drags you down.

                      Like I say-Closer to the edge.
                      Blog:
                      Does This Wheelchair Make My Ass Look Fat?

                      Comment


                        #26
                        I definitely get we're closer to the edge. There have been times I was ready to hurl myself right over it out of either sheer desperation or pain or both. Fortunately I didn't. When life is good it's good. When it sucks with paralysis it sucks in ways I could have never known.

                        No, I don't want to go around with a happy face on a gunshot wound, but it's what I do at times (Figurative, not literal). Still, I have a huge problem with Jerry Lewis doing what he did all those years. What you wrote was nowhere near what Lewis did. I'm very thankful for that. We don't have to become lesser than to do what we need to do. We need not lose our dignity to have funding for clinical trials.

                        I look forward to seeing the movie. From what you've said, there has been early Oscar buzz in the doc cat. That's always a pos, especially when a movie is about any of us in the paralysis community.
                        Last edited by LaMemChose; 17 Apr 2009, 10:52 PM. Reason: left word "over" out of second sentence

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                          #27
                          I'd like to fall asleep one night and stay that way. I'm sick of pain, dependence, bowel and bladder, and everything else.
                          Alan

                          Proofread carefully to see if you any words out.

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                            #28
                            I hear ya alan
                            Anything worth doing, is worth doing to excess

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