My Crystal Ball

(Photo credit: circulating)

How many times have you wished for a crystal ball? It's human nature. We long to know what the future holds.

But what if you already understood that your prospects were bleak? Would you want to know precisely how bleak, or would that serve no useful purpose? Unfortunately, I'm not given a choice, because my crystal ball shows up once or twice a year, and when it does I am powerless to look away.

I don't get very ill, very often. But once or twice a year I'll come down with a fever that usually lasts 24 to 48 hours, and it knocks the crap out of me. That’s because when my body temperature rises my MS symptoms are exacerbated.

I've learned that my condition when I have a fever foreshadows my condition at normal body temperature after another six months or a year of MS progression. Frankly, I'd rather not know. The news is never good.

In fact, I was visited upon this past week by my crystal ball, due to a chest cold. I learned just how much more difficult simple tasks like eating, dressing, and transferring from my wheelchair will be in the coming months. It was a fairly unsettling preview.

I hesitate to burden you with this somewhat gloomy post, but I think it's important to remind everyone just what a crappy disease MS is. If you've read this blog for very long, you know that I'm a relatively upbeat and well-adjusted guy. I think I'm handling my challenges well. So don't worry, none of that has changed. I'm just being straight with you.

You may have heard prominent neurologists or pharmaceutical reps say that “it’s a great time to have MS,” or that “MS is a highly treatable disease.” This may be the case for some people with MS, but it isn't the case for those of us with advanced, progressive MS (except for better wheelchairs and easier internet navigation tools). We have no treatment. We have no cure. MS just sucks more and more every passing year. We cannot, as a patient population or as a society, be satisfied with the pace of medical research on MS.

A strange thing happened when my fever retreated last week. I didn’t so much lament my uncertain future as I celebrated my return to my current “normal,” which I have a renewed appreciation for.

I’m not exactly sure how we’ll get through each day a year from now, but I’m confident we’ll figure something out.

The Walkability Index, and Why I’m a Big Fan of It

I wrote two posts earlier, here and here, about the five houses that Kim and I have owned so far. With the last three houses, MS has been or at least should have been a factor in what type of home we purchased. Now, here we go again. MS is once more the impetus for a change in our living arrangements.

Where we live now is acceptable, just not optimal. The house itself is well adapted for wheelchair use. I have ramps, wide hallways and doorways, and a roll-in shower. The problem isn't the house itself; it's where the house sits.

Soon, I will no longer be able to drive. I gave up driving with my legs a couple of years ago, when they became too weak to operate the brake and gas pedals. Now that my arms are failing in a similar fashion, I won't be able to manage my hand controls for much longer.

Once I can’t drive a motor vehicle, living in suburbia will become a bit confining. I'd like to live in an area where I can use my power wheelchair to call on restaurants, parks, stores, and yes, even a bar now and then. Throw in a hospital, library, or chocolate factory, and that might just seal the deal. In order to meet this goal, I'll need to move from the suburbs to the city. That means no more barbequing, campfires, or even dogs (I can’t walk a dog multiple times a day).  Life is full of tradeoffs, especially a life with MS. 

As we evaluate various urban neighborhoods, we want to make sure that a given condo or house is in an area with a high density of the types of establishments I'm looking for. There is no wheelchairability index that I am aware of, but there's something almost as good. There is a walkability index. Granted, just because a neighborhood is considered very walkable does not mean it is wheelchair friendly, but at least it gives me an indication.

To find the walkability index for any address in the country, all you have to do is enter in the street address, city, and state at http://www.walkscore.com/. Within a few seconds you'll see a walkability rating between 0 and 100, as well as a map showing all the establishments that went into the scoring algorithm. The walkability rating at my current house is a putrid 12 out of 100. This puts it in the "car–dependent" category. Some of the neighborhoods we are looking at have walkability ratings in the 80s, which is "very walkable,” or in the 90s, which is a "walker's paradise.”

The good news is that I can be patient, theoretically, because my house is suitable, just not ideal. But in practice, this isn't really the case. My wife brings many admirable qualities to our marriage, but patience in situations like this is not her strong suit. Now that we’ve initiated the search process, she is scouring the earth to find new housing, and she won't rest until she does. So I have a feeling this will happen sooner rather than later, if for no other reason than the preservation of my dear wife's sanity.

Isn't it ironic, though, that somebody who can't even walk a single step would be so interested in living in a walker's paradise?

Ten Thought-Provoking Quotes

I'm fascinated by quotations. It's one thing to make your point in a paragraph, a chapter, or a book. But it's quite another thing to thoroughly articulate a philosophy in only a sentence or two.

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Happiness is not achieved by the conscious pursuit of happiness; it is generally the by-product of other activities. - Aldous Huxley

I've heard it said in so many ways- in order to find contentment you need to stop consciously searching for it. Live a good life, and with luck, happiness will come to you, probably in a form you did not expect.

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Those who agree with us may not be right, but we admire their astuteness. - Cullen Hightower

Ignorance loves company!

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The nice part about being a pessimist is that you are constantly being either proven right or pleasantly surprised. - George F. Will

I wouldn't call myself a pessimist, but rather a skeptic or a realist, which are just gradations of the same perspective. For example, many MS patients hear about potential treatments and instantly make the leap to HOPEFUL. I, on the other hand, prefer to maintain a healthy skepticism about potential treatments like CCSVI. I research the issue. I even submit to the treatment, all the while accepting that it may or may not work for me. In this way, my skepticism will either be proven (consolation prize), or I'll actually see some benefit (grand prize). But I won't get my hopes up, only to have them come crashing down. Although I am motivated by a general sense of hope, I am careful not to go “all in” on any specific prospect.

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Half of the modern drugs could well be thrown out of the window, except that the birds might eat them. - Dr. Martin Henry Fischer

I like this quote because it speaks to my growing dissatisfaction with the medical establishment, especially the pharmaceutical industry. Big Pharma does exactly what they're designed to do, which is to maximize profits instead of patient well-being. So it's not the companies that are broken; it is the system. The companies endeavor to meet their fiduciary responsibility to shareholders, within the constraints of the law- end of story. It's just that, and I hate to say this as a committed free-market advocate, capitalism simply is not the appropriate instrument to provide patients with the best drugs, treatments, and cures. Yet, I fear the situation would only be worse if the government ran the pharmaceutical industry. What a dilemma.

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Most advances in science come when a person for one reason or another is forced to change fields. - Peter Borden

Today, interventional radiologists and other vascular specialists, because of CCSVI, are interested in what has always been considered a neurologist’s disease- multiple sclerosis.

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Seek simplicity, and distrust it. - Alfred North Whitehead

Occam's razor is a principal which recommends selecting the competing hypothesis that makes the fewest new assumptions, or in essence, offers the simplest solution. This speaks to the first half of the above quote.

Yet, common sense and human experience tell us that if something is too good to be true, perhaps too simple, then we should distrust it. This speaks to the second half of the quote.

I love quotes like this, only five words long, which shed light on an essential human paradox.

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The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd; indeed in view of the silliness of the majority of mankind, a widespread belief is more likely to be foolish than sensible. - Bertrand Russell

Everyone knows that multiple sclerosis is an autoimmune disease, or is it? The popularity of a hypothesis does not render it legitimate.

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Too many people are thinking of security instead of opportunity. They seem more afraid of life than death. - James F. Byrnes

This is another quote that speaks to a basic conundrum of human existence. If we live our lives too conservatively, we may avoid the great negative results but also the significant positive results. Each individual seems to be preprogrammed with one tendency or the other. Due mostly to my internal wiring, and perhaps somewhat due to my personal experiences, I am uncomfortable with too much safety and more inclined toward taking what I consider a reasonable amount of risk. To each his own.

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There is a theory which states that if ever anybody discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory which states that this has already happened. - Douglas Adams

I have a particular interest in the "why am I here" quotes, especially humorous ones.

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And I'll leave you with this unsatisfying quote:

1. Never tell everything at once. - Ken Venturi

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For Every 100 People That Walk by Me When I'm in iBot Balance Mode…

… I bet 30 of them think something like, “Wow, that is strange, but I’m going to carry on as if it’s nothing interesting at all. Must…not…reveal…amazement.” And they’ll say this to themselves for a wide variety of reasons: too cool, too shy, too polite, fugitive from justice.

When I’m zipping around in balance mode in my iBot, it’s quite a site. I have to believe that more is going through people’s heads than they let on. This post is my best guess as to what 100 average people are actually thinking when they walk by me.

If you’d like to see me in action, check out this video.

20 of these people that walk by me are mothers or grandmothers, and they straddle that fine line between sympathy and pity. "Well isn't that nice. The poor cripple at least has a fun buggy to drive around.” Their maternal expressions give them away.

10 say to themselves, “Cool wheelie!” And a few of those folks are even good enough to utter that phrase out loud. Unfortunately, it's probably the most common comment I hear. Sigh.

9 of them say to themselves, "I think I've heard of that wheelchair somewhere, but I've never seen one. Cool. I should say something to him…oops, too late. He's gone.” Then their thoughts return to whence they came…“I wonder why my cat’s butt goes up in the air when I pat her. If nobody buys a ticket to a movie do they still show it?” I can distinguish these individuals by their vacant stares.

8 of them are adolescents and teenagers who all think, “He’s so lucky. I want one of those!” Knowing what turmoil awaits them in the coming years, especially the girls, I don’t think I would trade places with them even if I could.

I suppose about 7 of them really and truly don't see me as out of the ordinary at all. They are completely preoccupied. If they're contemplating a potential cure for cancer, good for them. If they are replaying the latest episode of Jersey Shore in their heads, well that's just sad.

Based on the reactions of mothers with small children, who represent about 6 out of 100 people I encounter, they probably think to themselves, “Danger…unidentified object defying laws of physics…must …protect…offspring,” as they urgently pull their children well away from my path, the very act of which generates more injury and fear than I ever could have. It’s instinctive, though, so I get it.

In my mind, also referred to as my little dream world, 5 out of 100 are gorgeous women who think, “My goodness, I must have that handsome man in that sexy wheelchair.” But, alas, they always go home frustrated, as I’m a happily married man.

Another 4 out of 100 people that I run into are physically disabled themselves. You might think that because of our common challenges these folks would be more likely than others to show an interest in my unusual method of mobility. But this is not the case. Of these 4 people, 2 of them do not react to me in any way, and think to themselves, "Showoff!" The other two think, "Lucky bastard. I wish I had one of those chairs." Maybe they don't consider me to be one of them at all. Perhaps there is a secret handshake or password of which I was never informed?

And with about 1 person out of 100, I don’t have to wonder what they are thinking at all, because they come right up to me and engage me in conversation about my iBot. If I'm not in a big hurry, or in a bad mood, I try to make the effort worth their while.

Then there's the one-in-a-million person who would think, "Cool, a wheelchair exactly like mine!" In the two and half years I've owned my iBot, I’ve not yet encountered such an individual, although they are widely rumored to exist, as are unicorns and pharmaceutical companies who want to eliminate diseases rather than simply treat them for the rest of your life while making obscene profits all the while. But I digress…