Our FDA friends refuse to allow us access to life changing and life saving research developments. We live in pain and discomfort every day. What happens to us is of no importance to those in power. So depression is a normal part of the equation, especially as our end gets near. Having an "out" if things get too bad is a kind of security, a safety net, that our 'immune normal' friends cannot understand especially those who consider themselves to be religious.
I have been dead, suffocated.
I can tell you step by step how it feels. The desperate need for air does not end at any stage only gets worse and then added to by a horrible sharp pain in the center of the brain that becomes all encompassing. This pain feels like something is squeezing your brain in a giant vice. At this point you are completely deaf and blind. There is not enough oxygen for those senses to work. No part of your body is under voluntary control. More surprisingly the sense of body also disappears. There is no sensory feedback from your arms, legs or skin even on the outside of your head. You feel like you are floating someone where in the center of your brain with no connection to a body at all. Time slows down. The experience seems to last for hours and hours not the minutes it actually takes.
Suffocation is so fun, NOT.
I can assure my conservative friends that think that lethal injection of criminals is too easy because the criminals deserve worse. Our con friends do not see a twitching body or hear screams that it is a form of suffocation. They think it is a peaceful death. It is not. It is suffocation and suffocation is not fun. The screams of the criminals who die are silent but the horror and pain of the death is real.
Depression caused by our constant pain and limitations can lead to thoughts of suicide. No question. I do not recommend any method that involves suffocation. I do not recommend it at all as usually a day later things do not look so black. But having a choice of the possibility of suicide is a right we all deserve.
At the very worst times of pain, the thought that we could have an out is liberating and actually makes the pain less and the episode easier to get through. The loss of control of our lives is already so great. Why some "normal immune" folks want to deny us this, I do not understand.
February 28, 2009
THE SATURDAY PROFILE
Preparing to End Her Life, While Protecting Another
By SARAH LYALL
MULTIPLE sclerosis came into Debbie Purdy’s life about the same time as her husband, a Cuban jazz violinist named Omar Puente. “He didn’t speak English, and I didn’t speak Spanish,” she recalled. “What we had was jazz, and a dictionary.” When she received her diagnosis, one of her first thoughts was: “How do you say ‘multiple sclerosis’ in Spanish?”
That was 1995. Somehow, the couple have adjusted together to the changes in Ms. Purdy’s deteriorating body. They have adjusted as she has gone from walking with a cane to using a manual wheelchair to using an electric one. They have traded water glasses for plastic cups, installed a panic button at home in case she falls and put up a hoist to help her get in and out of bed.
But there may be a limit to the Purdy-Puente partnership, so close it feels almost symbiotic. The possibility exists that Ms. Purdy, 45, will get so sick that she no longer wants to live. Should that happen, she says, she plans to travel to an assisted suicide clinic in Switzerland and drink a lethal cocktail of drugs. As things now stand, she would have to go without her husband, she says, because helping someone die — even, say, by pushing a wheelchair onto the airplane — is illegal in Britain.
It is her choice alone, Ms. Purdy said.
“Omar’s being prepared to go to jail because he loves me and respects my choices is the same reason I wouldn’t want him to go to jail: because I love him,” she said. “I’m not even prepared to let him be interviewed by the police.”
Ms. Purdy has taken her private struggle and turned herself into the latest public face of an anguished, longstanding debate about assisted suicide in Britain. She has sued the government in an effort to force officials to provide assurance that if Mr. Puente did help her die in Switzerland, he would not be prosecuted.
Last week, her latest appeal failed when three Court of Appeal judges ruled that although they sympathized with Ms. Purdy, only Parliament could change the law. She is now considering whether to pursue the case further in the courts or to lobby for a new law.
Assisted suicide is legal in Switzerland. In recent years, about 90 Britons have killed themselves in the clinic, which is in Zurich. So far, no one back home has been prosecuted for helping them, but that does not mean it will not happen. “Many have faced police questioning and agonizing months waiting for the final decision not to prosecute,” said Ms. Purdy’s lawyer, Saimo Chahal.
Ms. Purdy explained her thinking in a recent conversation in her and Mr. Puente’s tiny house on a sloping street here in Bradford, a down-at-the-heels industrial northern city. If Ms. Purdy had not been in a wheelchair, if her hands had not been shaking, if she had not been speaking matter-of-factly about things like loss of bladder control, the painful swelling in her feet and how hard it was for her to brush her teeth, it would have been difficult to believe that she was ill at all.
She is that joyful.
SHE talked about her happiness that Barack Obama is president. She talked about how strangers actually welcome the chance to help her, because it makes them feel they have done something noble. She talked about the adventurous life she once led.
Ms. Purdy grew up in Brixton, south London, with a father who was a peripatetic inventor and a mother who stayed home to look after her and her four siblings. She went to the University of Birmingham but left when she realized how lucrative her part-time job, selling ads for the Yellow Pages, was. And thus began an era of impetuous traveling to unlikely places, like Oslo and Houston, and then talking her way into unlikely jobs, like dancing in a club in Japan, running a road-safety project for 8- to-12-year-olds in Hong Kong and working as a music journalist and travel brochure writer in Singapore, where she and Mr. Puente met.
She does not want to talk about death, but the fact is always there. She has primary progressive, rather than relaxing-remitting, multiple sclerosis, meaning that her condition is inexorably worsening. Sometimes she chokes when she swallows. She has not been upstairs in her own house in two years. She needs help cooking, cleaning and shopping.
Mr. Puente, 47, who teaches and travels the world playing music, was away but spoke by telephone later. “Debbie was the woman I chose to be my wife,” he said. “I’ve seen the whole process, from when she was a very strong woman with a wonderful big bottom and strong legs, to using a walking stick to a wheelchair. She is still articulate and enthusiastic and full of life. She doesn’t want to die.”
He does not want her to die either, and especially not alone. But, he added: “I love that woman and I don’t want her to suffer badly. Apart from everything else, she wants to control her life and make her own decisions.”
Mr. Puente is a big bear of a man, and he has a jazz musician’s sense of improvisation and possibility, a way of grasping happiness in the present. He often tells Ms. Purdy that, as her husband, it is his job to make sure her life is not unbearable.
Fifteen years ago, she lost control of her bowels for the first time. “I wanted to die,” she recalled. “I was in floods of tears and Omar sat down and said, ‘What’s wrong?’ and he laughed. And I said, ‘How can you laugh at me?’ And he said: ‘It’s your choice, either I’ll cry with you or laugh at you.’ ”
Not long ago, a team of nurses came in to install the hoist that helps Ms. Purdy in and out of bed.
“He was laughing,” Ms. Purdy said. “The nurses threw him out of the room when we were trying it out, because he was acting like it was a sex toy.”
BUT when you have a progressive disease, time moves in the wrong direction. If Ms. Purdy exhausts her options and cannot get the assurance she needs from the government, she is prepared to go to Switzerland alone, she said. But she would have to do it while she is still physically able, which would be long before she is ready to die, she said.
She has worked out all the logistics, including how to get the $6,000 the trip would cost. That does not mean she will do it; she just wants the choice.
“I don’t want to kill myself,” she said. “I don’t want to go to Switzerland and end my life early. But this is a security blanket.”
She thinks often about what she can withstand. At what point does a life slip from manageable to untenable?
“When I was 20 and jumping out of airplanes, I thought being in a wheelchair would be unbearable,” Ms. Purdy said. “But it’s not. I thought asking people for help would be horrible and unbearable.
“But what I consider dignity has changed, and what I consider unbearable and horrible has changed,” she said. “Having a stranger pick me up off my bathroom floor, that’s not undignified. What is undignified is having a stranger say that I have no control over my own life.”