Saturday, 31 August 2013

Stop Curing Me

In July when I foolishly thought I could still spend a summer on my boat, Ricky and I pulled into a little place called Genoa Bay. A woman was tending dock and coordinating tie-ups. We got to talking after Ricky slung me out of the boat. Most people were interested in that process and how we managed. Then she asked about how I ended up in a wheelchair. I told her. She replied, "You can get acupuncture. They can cure ALS with acupuncture."

My response was that I didn't really think that was the case at which point she launched into a dissertation on how "eastern medicine" could cure all kinds of things but "western doctors" didn't want to know about it because it would prove that they didn't know everything. She went on about the conspiracy of big companies in the west and how they withheld "traditional" medicinal ideas because they could not make a profit on them.

I was polite. I did not ask her why Mao Zedong died from ALS, something the Chinese Communist Party kept hidden for many years, in spite of having access to all the traditional Chinese medicine he could ever have wanted. I did not point out that most western doctors would be ecstatic over any treatment they could offer for ALS given the frustration this disease caused them, no matter where that treatment originated. I did not ask her the simple question, how if she, an acupuncturist, could cure so many evils, why was she docking boats in Genoa Bay instead of helping a suffering world?

Another of these encounters happened in the hotel lobby as I checked in last night. It happens on a regular basis, people saying I should do this or that and it will help with my ALS. Yesterday it was another of my favourites, the "massage" message, where people say something like "You should see a massage therapist. My massage therapist does wonders for my back and legs." I tend to say "I'll trade you. You can have my legs and I will go to your massage therapist." Another challenge is my food intake. Once again the well meaning say silly things, like "You need to change your diet. That will make a big difference in your quality of life", assuming things like organic carrots will cure every illness known to mankind.

There's other stuff too, people talking about exercise for my upper body as a way of prolonging my life, or "specialized therapies" or "Lyme Disease" or "toxins in the environment", as if they knew the answer, as if they thought I had never researched a thing about this disease. All they are really telling me is how ignorant they are about ALS, that they haven't done any real research into this dreadful conundrum.

I have done the research. I am a science kind of a guy. Give me outcomes that show improvement and I will accept the inputs, whatever they may be. The numbers matter, data matters, studies with proven, consistent outcomes matter; good information matters, bad information is harmful. Anecdotes mean nothing; people have an amazing ability to misinterpret outcomes, often ascribing miraculous results when in fact nothing really happens at all. It's called the placebo effect.

Yes, I want hope. Yes, I want to live to see my grandchildren grow. Yes, I want to sail again, marry again, live again, love again. Yes, I want a cure. But please stop trying to cure me with hocus-pocus, unproven, psuedo-science answers that your Aunt Mabel used to use. All you are doing is demonstrating how little you really know about ALS.

1 comment:

  1. I know this feeling. I usually let it slide.