October 9, 2014

Patients direct

www.gofundme.com/d500a0
Pam
I have a policy of not advising eating disorder patients. I do not correspond with patients, as a rule, because I do not want to hold myself out as some sort of expert or to offer support that is empty. I believe deeply that eating disorder sufferers need and deserve support on the ground and that I should never interpose myself into that equation.

Still, although all I am is a mother and that is all I can speak to, I hear from a lot of patients. It is an artificial boundary, really, on the Internet. I hear from and about sufferers all the time. I want to mother them all. I want to surround each individual person with the support team that I believe will help them: hold a line against ED, provide access to appropriate medical monitoring, counseling, and provide caring and compassionate companionship.

I believe in full recovery. For every single patient. I reject the concept of "chronic" sufferers because I believe society and treatment has failed them and not the other way around. If someone is suffering long term from an eating disorder I blame our legal and ethical systems, our societal ignorance about mental illness, poor clinical training, the glacial speed of data to practice, short-term thinking on the part of funders, and tragic lack of connection within families. I blame the nature of ED. I do not ever blame patients for their state and I challenge anyone to justify letting people suffer without the appropriate care we all know can be available to all.

Yet people do suffer. Often alone and isolated. I care about all of them, but what about each one? The need is so great and the obstacles so many: I don't have money to offer, or a bed in my home, or a direct line to Oprah or Bill Gates.

So when one of those sufferers reaches out to me, it touches me. I know that I may be the only human being who is at that moment listening, if impotently. I always believe that if only I could mobilize the help on the ground... I often do not know exactly where this person is, or whether they would even open their hearts to me if ED knew that I really was next door or at the door. I end up working at the big picture: laws and systems and societal change.

Yet, every once in a while I break my rules. Rarely, and with no particular fairness to it because there really can't be. I am just a mom at a laptop. No one deserves help more than another. I am powerless to help, and yet I care.

Yesterday I was asked very humbly by a Canadian woman named Pam to give her any bit of my time. She's suffering from an eating disorder and a terrible burn injury. She is isolated and in pain and suffering but what she wants to do is help people. She wants to recover and work toward fire safety and eating disorders awareness. She has chosen a treatment option she wants to pursue. She has put herself out there and asked the world for help.

She is willing to engage in a research study, be in the media for access to care, to find a way. Her health is deteriorating.

We cannot, as individuals, help everyone. But we can each do a little bit for someone. We can show that individual human being we care or we can turn away.

"That fire didn't kill me," Pam says. "And I don't want anorexia to either."

1 comment:

  1. WOW. What a powerful story. And a wonderful cause.

    This passage in particular affected me:

    I believe in full recovery. For every single patient. I reject the concept of "chronic" sufferers because I believe society and treatment has failed them and not the other way around.

    Beautifully put.

    ReplyDelete