Category Archives: MS stories

Two Views of Same Data on Life Expectancy

A Dog's secret to a long happy life...play hard and find a good teddy bear with whom to sleep.  Could it be that simple?
A Dog’s secret to a long happy life…play hard and find a good teddy bear with whom to sleep. Could it be that simple?

Do Numbers Lie or mislead? I suspect we just read into them what we expect “truth” to be.

When I started as a Survey Program Analyst almost 16 years ago, I remember working on some politically sensitive data. My boss said in a somewhat cynical tone, “Tell me what you want to prove, and I can find the statistic to ‘prove’ you correct.” Since then, I have enjoyed running across those statistics which can be used for either side of a disagreement as “proof.”

I was at a healthcare bazaar at my work last week where different supplier came to sell their services. There were insurance companies hoping employees would switch to their insurance or perhaps sign up for the first time. As I walked around, I watched their interest in selling to me predictably fade quickly with the mention of my MS. It was like the Soup Nazi in Seinfeld, saying “No long term care insurance for you.”

I get it. Still, I did have some interesting conversations there. It is enlightening to see how caught up in rosy narratives we become when faced with numbers that may say what we want to hear. One of the employee assistance plan workers told me the story of one of his friend being diagnosed with untreatable cancer. The doctor told him and his family to do what they can to make the patient happy because studies show “Happier sick people live longer.” The worker and family took this to mean if they can keep the patient happy he might beat the cancer. This narrative assigned to the facts of less happy people dying quicker gave them power over that truth which they would otherwise be forced to just endure.
I guess I was a Debby Downer, because I pointed out the other “obvious” to me possible explanation for the numbers. Sometimes being really sick and dying is just miserable. Perhaps some of those unhappy people were unhappy because their illness was so miserable to endure, and it was killing them whether they were happy or not? Without knowing what made the people in the study unhappy, it is hard to say why the unhappy people died quicker.

To my, ignorant of the individual facts mind, the narrative where sick unhappy people die sooner than happier ones, suggests a bleaker mindset closer to death. This seems more plausible than healing by positive thinking. I think about the symptoms I am to watch for as a JCV positive patient taking Tysabri. I am supposed to watch for down turns in my mood because they could be a harbinger of PML. Will my happiness ward off PML or is will a darker mood be a canary in the mine?
Maybe I should worry that mind so readily dismisses my mood as a cause of my body worsening. Perhaps I am already doomed.

Of course, I have few objections if my family and friends want to make me happier all the time so I can live longer. Maybe I should start an Emotional Go Fund Me and see how much positive energy is directed my way?

The happier patient population living longer could also be a result of the body having to spend less energy enduring symptoms. I know my symptoms are worse when I am stressed. Of course I also stress over increases in symptoms. I will concede it is plausible that happier patients live longer, but which is the cause and which is the effect in the relationship between happiness and long life is undetermined in my mind.

One happy bear scout
One happy bear scout

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The Chasm Between Sickville and Wellville Bridged by Imperfect Language

I wonder what K makes of the blur of images as she swings from a tree swing at a Memorial Day pig roast.
I wonder what K makes of the blur of images as she swings from a tree swing at a Memorial Day pig roast.

We all think we understand and are speaking the same language, but I suspect words only loosely convey experience. What’s more, words seem less likely to maintain their conductivity of meaning when used to describe experiences that one or both sides have not experienced. I think this chasm of experience is part of what leads to the perceptions I see expressed on MS message boards between the lands of Wellville and the sometimes wasteland of Sickville. I encounter this gulf every time I try to explain the blindness I have experienced most often of late. We all think we know what “blind” means. Even at the disability conference at my work, they had an attempt to train people with sight what it is like to be blind. They blind folded us and walked us from the cafeteria down a hall and gave us a cane. We could use our ears and the cane to tell when hallway opened into the cafeteria. I have thought of this as traditional blindness ever since, but I think it misses other types of sensory interruptions which lead to effective blindness.

My first attempt to describe my sight interruption was years ago when I was trying to relate some of the humor that I find necessary to live with MS:

This is from my first Christmas with MS where I got together three presents to wrap, tape and paper.

First present: put present down, cut paper, fold paper, tape – tada! One down two to go.
Second present: put present down, cut paper, fold paper, ummmm where is the tape? I have not stood up. It must be within arms reach.

Why the heck can’t I remember where I put the tape or see it…a 5 min curse fest ensues until boredom with repeating the same curses allows me to realize there was more tape. So I go and grab another roll to finish. Tada! Two down.

Third present: put present down, cut paper, fold paper, ummmm where is the tape? Seriously? I cannot remember where the heck I put it. Thankfully, this time boredom hits faster so after only 2 minutes I remember there was more tape. Tada all done.

I saw the tape neatly stacked one on top of the other only the next morning, but for the night I just had a block. I could not see the tape.

http://thelifewelllived.net/2012/03/01/ms-humor/

This inability to recognize what my eyes saw as tape rendered me blind to it. I could still see colors and movement. I have little doubt I would have been able to read an eye chart as well as ever, but I could not “see” the tape. Sadly, this disturbance seems ever more common of late. My wife has pretty much given up on sending me to go find something that I know only by her description. “Go get the razor lubricant from under the bathroom sink” was the latest frustration. Looking under the sink, I saw the extra razors, shaving cream, cleaning supplies, etc. I could not find for what she sent me, and I suspect thirty minutes would not have helped. When I encounter these episodes, the only way I have found to work around them is systematic search involving physically moving everything until I am holding the object of my search. It is a method that works but takes a long time, especially if one counts cleanup time. The irony is I believe our youngest, K, has a brain doing the opposite of mine.

Where my mind takes in the stimuli but fails to interpret it properly, hers seems to do an exceptional job interpreting the limited stimuli her eyes receive. Where I cannot find something in a drawer, she can pick out classmates from photos, see the ground to navigate running, and even find toys amongst rubble of thrown objects in a basement. Her mind has adapted well to the point where people who do not know us cannot believe she has problems seeing. Her blindness is probably matched more closely by the cafeteria/hall demonstration at my work, but her ability to interpret limited sensory inputs gives her a huge edge over our bumbling with a cane.

Therefore, as we attempt to describe our symptoms, whether it is recognition issues, traditional blindness, headaches, spasticity, or any of a myriad of other MS symptoms we should realize the problems with the imprecise language we have at our disposal. Often what we think is obvious may miss the tiny bit of information which would convey truly our experiences, and others who have not gone through the same thing may find themselves with only an idea formed watching from afar, across the chasm between Sickville and Wellville.

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