Listen to this excerpt from a "Today" show segment. Letty Cottin Pogrebin is a famous feminist and co-founder of Ms. Magazine with Gloria Steinem. She has survived breast cancer. She talks about things to say and things not to say to a sick friend, and has a new book out about the subject. My absolute favorite line when I told a long-time friend that my long road of diagnosis had finally come up with an answer: "Okay, so now that you know what you have, you'll deal with it" and then she followed this up with "you know, they make canes with little stools. I've seen some old people in the neighborhood using them, and they're very cute". I was 48 years old, facing a prognosis of 2-5 years and the last thing I wanted to look like, was a "cute" old lady. It went downhill from there. She followed that act with a set of emails giving me links to wheelchairs and walkers on eBay. Then, when I was dealing with the loss of my teaching career, she dropped off a 16-page article she was required to read for her Education Masters at Queens College. When I looked baffled she said "Here, read the article for me and summarize it. I'm too busy and you have nothing but time on your hands. Besides, it will lift you out of your depression and make you feel useful". I was stunned. The straw that broke the camel's back was when she came waltzing into my apartment one evening through an unlocked apartment door. It had been about five months since I last saw her. She just said "hi" and sat her ass down. My aide was horrified. "Don't you knock?" she asked. My soon-to-be ex-friend replied, "Why? Am I interrupting anything important?" She moved out of the neighborhood to a fancier part of Queens and I never saw her again. But about a year ago, I accidentally sent a blast message to all my Facebook friends, of which she is one. She inboxed me: "It's good to see you're still around. My teaching job is so tiring. I bought a condo in the Bay Club and had the realtor from hell. Bye". I would do anything to have a job to be exhausted by.
There is an ALS patient who publishes a blog. To protect the author's privacy, let's call her Beth. Well, in the course of any disease, you will get desperate enough to do anything sometimes. Although I am following a healthy diet which I blog about in "Meat's No Treat", this is not to cure or improve my ALS. Rather it is to prevent or help other conditions [eg. cancer, hypertension], and to take off excess weight and keep up my immunity. The last is because ALS patients often die of infections they cannot fight off. But Beth started blogging about a Far Eastern "practitioner" who claimed to be able to cure her with some sort of Eastern medicine. So Beth drove halfway across the country with her husband, blogging that when she returned, she would be back to her "former life" before ALS. I kept thinking, "does she really believe that? If it was some miracle cure, wouldn't we all be doing it?" There is a group of people out there who believe the medical profession is "conspiring" to keep us all sick, because they are "in cahoots" with "Big Pharma". I subscribe to the lists of some of these people because they are believers in nutrition and natural medicine, but I don't buy a lot of their philosophies, such as anti-vaccination and avoiding cancer treatments. And I am able to sift out the extremists, like the nut who was emailing me constantly saying he "solved ALS" , until his emails got so weird I told him I would turn the emails over to the police if they didn't stop [they stopped]. Anyway, Beth didn't get cured; instead she ended up in the hospital with some infection [probably from a weakened immune system from the car travel and/or distress at having her dream of a cure shattered]. Moral: there is no cure -- yet, and won't be for a long time. I am keeping myself as stress-free and nutritionally as strong as possible to prevent additional diseases, preserve what I have, and not flirt with any more danger than necessary. Most of all, I want to stay out of any hospital !! There are always charlatans who prey on the desperate and vulnerable. Physicians get no nutrition training in medical school, but they have come up with cures for major diseases, with the cooperation of "Big Pharma". It's big business and profits come before people and compassion, but that's the way it is. There are many diseases that can be prevented by nutrition and avoiding obesity-- eg. type II diabetes and heart disease. But once you get these diseases, the medical profession is the only hope in most cases.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Sunday, April 21, 2013
Book on what to say and what not to say, and beware of the "miracle cure"
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I "met" you awhile ago through the Living with ALS board...and, though I don't read the board daily as I did when first dealing with my diagnosis, there are a few I try to keep up with and you are one of them.
When I saw you had a blog I though I would pop over and say hello. Fern, I LOVED your post regarding things friends would want to avoid saying and I also loved the way you expressed your thoughts regarding "cures"....I feel the same as you!
I hope you keep fighting Fern, and though this disease tries to force all of us, at some point, to "sit down and shut up" it's great to see you are refusing to let the disease "push you around!"
Fern, you may not realize how many you inspire through your determination, through the way you choose to deal with the daily issues from living with ALS, and I hope you may keep up the fight!
Have a good weekend!
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