Tuesday, October 30, 2012

Is That the Best You’ve Got?

imagesA cacophony of disastrous events has recently plagued Maine. The only reasonable explanation is that Armageddon is upon us- the End Times. Prepare for final judgment.

Or not.

Yesterday and early this morning we endured Hurricane Sandy, a.k.a The Storm of the Century. I live on the south coast of Maine, where I can see the ocean at the end of the street, about 100 feet from our house. My little corner of the Atlantic, however, is but a small cove in a protected harbor in a larger bay guarded by many islands. So it’s not like I expected the waves to be splashing up on my back deck.

The wind and rain started to increase beyond reasonable levels after noontime yesterday. The storm intensity steadily increased until about midnight, with gusts over 60 mph. The rain came in bands. Sometimes nothing was falling from the sky. Other times it felt like our house was being power washed by a thousand hoses at once.

Kim and I take great pride in our hearty, New England fortitude, particularly when it comes to weather. We don’t buy into the incessant hype in the days leading up to a storm. We play it cool, scoffing at Kim’s mother and our daughter (two separate people) who suffer from an innate fear of Mother Nature’s fury. Having said this, the storm was so fierce at times last night that Kim and I would spontaneously make eye contact, raise our eyebrows as high as humanly possible, and utter something along the lines of, “Holy crap!”

Unlike millions of people on the East Coast, we never lost power for even a second. My internet connection performed without interruption. In fact, the reception on my DirecTV dish never even blinked (which makes no sense to me because I’ve lost it temporarily in much milder storms).

We have some trees on our property that we feared could suffer damage, but there were almost no branches on the ground this morning. Many of the remaining leaves on the trees came down, but that’s all. Because of the powerful and unidirectional winds, our lawn appears as if somebody raked all the leaves for us into a couple of neat piles along one side of our house, ready to be picked up and disposed of. Kim is pleased.

When we woke up this morning the fury was over. It was a bit breezy outside, but not raining. Throughout today we had intermittent showers, although around noontime the temperature was up to 65°, and the sun was shining. I took my wheelchair around the neighborhood to assess the broader situation. Just like in my yard, there was almost no damage – just a bunch of leaves and a few branches down. As I zipped around the neighborhood I enjoyed the tropical air that Sandy brought us, which is a very rare treat at this time of year in Maine.

For our community, the storm of the century was no big deal, and is completely behind us now.

Disclaimer: in no way do I mean to imply that this was not a significant storm that caused distress to a great number of people. I’m just referring to my experience with Sandy.

In the introduction to this post I mentioned that there had been a cacophony of events, so I suppose I am obligated to bring up at least one other. On October 16, Maine experienced a rare earthquake. It was about 20 miles from my house and registered at 4.0 on the Richter scale. I’ve experienced a few minor earthquakes in Maine over the years. Unfortunately, I only felt this earthquake in retrospect. I was by myself in the house and heard what sounded like an unbalanced load in our clothes washing machine. After about 10 seconds the sound went away, like it often does, and I gave it no more thought.

About 5 minutes later my daughter texted me and asked if I had felt the earthquake. Our brains work in strange ways. I didn’t consciously run through the events and deliberately put all the pieces together. My brain subconsciously and instantaneously realized that this wasn’t laundry day, and that the noise I had heard from the washing machine was the earthquake. Damn! I so wish that I had realized what was happening while it was happening. That would’ve been much more enjoyable.

Enjoyable, you say? I have to admit, I get a charge out of these little natural disasters and “storms of the century” that we get in Maine. They break up the monotony and make life a little more interesting. Thunderstorms – love those too. The bigger the better.

I guess I also get a kick out of saying, after the mess is all cleaned up, “Mother Nature, is that the best you’ve got?” Being a man of science, I don’t fear jinxes or angry weather gods or any other superstitions.

Come to think of it, now that I’m feeling all cocky and badass, why not take this to the next level and say, “Hey, MS, is that the best you’ve got?”

In the end, Mother Nature or MS may do me in. But I’m not going to give either of them the satisfaction of seeing me sweat.

Wednesday, October 24, 2012

Political Advertising- Out of Control

Obama Change
Obama Change (Photo credit: Atlantian5)
Here in the United States we have a presidential election in two weeks. We are also voting for just about every other possible position in federal, state, and local government. During these election cycles we take great pride in demonstrating to our children the importance of democracy in action. I hope they’re not watching too closely.

I'm not here to advocate for any particular candidate or issue, but rather to publicly protest about how absurd the process has become. I understand that it's better than the alternative – not being able to choose your own representative government – however, we've been doing this free election thing for over 200 years now, and it is getting worse, not better.

Specifically, I'm here to complain about political advertising on TV. As a disabled person who sits at home all day, I tend to watch a lot of television (see how cleverly I worked disability into even a political blog post). I try to select only the quality programming, but I must admit that sometimes the TV is on in the background for no reason in particular.

English: Governor Mitt Romney of MA
(Photo credit: Wikipedia)
In the last couple of months, my television viewing experience, and more importantly my enthusiasm for the coming election, has been raped and pillaged by incessant political advertising. It would be one thing if the commercials were informative, well done, or even creative. But they are not. They are absolutely mind-numbing, on par with the most juvenile used car or discount furniture commercials, but not quite so truthful.

Based on my years of careful observation, negative advertisements have a 99% chance of being highly misleading if not outright lies. Positive advertisements have about an 80% chance of being highly misleading if not outright lies. Because of this, as I finalized my voting decisions I awarded “bonus points” to the candidates who inundated me with the least amount of their bullshit.

I can think of only one good reason why candidates spend so much money on television advertising. It must work. I would be ashamed of myself if I let the content of these commercials influence my vote in any way (other than through my bonus point system). We should listen to debates and read as much as we can (skeptically), meet face-to-face with the candidates (where possible), hash things out with our friends, neighbors, and bartenders (when we can do so without inciting a riot), but we can’t let these fraudulent commercials sway us! Since many of us apparently are duped by this disinformation, then I must reluctantly conclude that we are a weak-minded society, prone to manipulation. This makes me sad, as sometimes I fantasize that I live in a world populated solely by thoughtful, intelligent human beings (like people who read Enjoying The Ride, for example). Silly me.

I make my informed voting decisions based on the candidates’ ability to represent my family’s interests and the interests of our society as a whole, with adjustments made for how I was treated as a consumer of their advertising. The only way we can stop the insanity is to demonstrate to the next round of political candidates that mudslinging and tacky advertisements will not produce the desired outcome. All television commercials of the current style, even the positive ones, are a waste of our time and an insult to our intelligence. Make it stop!

Can I get an amen?

I’ll leave you with this. Those of you who are Facebook friends with me saw the open letter I posted on my status recently…
Dear Direct TV,
Today I filled out my absentee ballot and put it in the mail. Therefore, there is no need for you to continue to inundate me with political commercials. Please resume beer commercials and spoilers that reveal way too much about upcoming shows that I already planned on watching. Heck, even bring back cigarette commercials if you want to. Just stop bombarding me with these mind numbing, intelligence insulting, wastes of money and time. Thank you.
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Wednesday, October 17, 2012

Head Games

imagesI decided to go to the grocery store one day last week while Kim was at work. For the first time in months it was cool enough that I really needed a jacket during the day. But I just couldn’t get the zipper started. My hands refused to cooperate. I had to wonder, did this mean I had operated my own zipper for the last time, or would things return to normal the next day and remain that way for the indefinite future?
Daylight, alright
I don't know, I don't know if it's real
Been a long night and something ain't right
You won't show, you won't show how you feel
This morning when I transferred from my wheelchair to my shower seat I noticed that it went slightly easier than normal. I wondered what that meant. Had I stopped getting worse? Was I getting better? Did the transfer really go well, or was it merely wishful thinking?
No time ever seems right
To talk about the reasons why you and I fight
It's high time to draw the line
Put an end to this game before it's too late
Head games – those of us with progressive diseases are particularly susceptible. The self-questioning can sometimes be controlled but never completely eliminated.

I have good days and bad days, but it’s not like people with relapsing remitting MS who have, well, relapses and remissions. The root causes of my good days and bad days, fairly normal biological cycles, are like everyone else’s. It’s just that when your health is marginal like mine, the result of a good day versus a bad day can be poles apart. These harmless, daily variations are tough to differentiate from long-term, more permanent changes. Hence, the internal head games.

I try to figure out if I’m getting stronger or weaker, better or worse. That’s one layer of head games. But there are several other layers that I employ too. For example, how much of my constant self-evaluation do I share with my spouse, caregiver, and love of my life (that’s all one person in case you didn’t know)? If I talk about it too often I am obsessing. If I never speak of it, I am in denial. If I share optimism with her too early in the game I’m guilty of falsely raising her hopes (this is an infrequent problem, given my steady progression over the years). If I share pessimism with her too liberally, it leads us both to a place where we might otherwise not need to go.
So near, so far away
We pass each other by 'cause we don't know what to say
It's so clear, I'm sorry to say
But if you wanna win you gotta learn how to play

I’m aware that this process works in both directions. Like me, Kim has to pick and choose when to speak up about her observations, or when to ask me questions that may clarify or confirm her observations. My disease progression is a roller coaster ride for both of us, but I’ve got a slightly better view than she does of what’s ahead on the track.
I daydream for hours it seems
I keep thinkin' of you, yeah, thinkin' of you
These daydreams, what do they mean?
They keep haunting me, are they warning me?
All these communications challenges exist, yet Kim and I have a wonderful relationship where openness and honesty are abundant. I can’t imagine how much more difficult this must be for couples who are not in such a good place. It tears marriages apart.

What about my doctors? They want to know how I’m doing – it’s their job after all. Sometimes I prepare a thoughtful response to this predictable question, often bringing notes with me. Other times I wing it. Nevertheless, I frequently leave the appointment unsatisfied with the conversation we had, not because of the doctor but because of me. Damn, I should’ve mentioned this, or crap, I meant to describe my situation this way. I am extremely witty and well spoken- in retrospect.

Why do I put myself through these compulsive self-evaluations? Haven’t I expounded here at length about how important it is to stay in the moment and enjoy each day for the gift that it is? When I’m not undergoing some experimental treatment (which is every treatment I’ve ever undergone because there is no approved treatment for PPMS), then I don’t obsess so much about my progression or lack thereof. There’s nothing I can do about it, so why worry?

But when I am evaluating a treatment, like now, it’s easy to fall prey to the head games. Those periods of time in the past eleven years when I have not been on any experimental treatment have, oddly, been some of the most stress-free stages of my disease progression. I’ve become skilled at acceptance. Fighting back, however, is hard work.

Next week I will have my fifth intrathecal methotrexate treatment. The doctor will ask me how I’m doing, so I guess I better think about a response. I can’t say that it’s definitely working, but I can’t say that it’s definitely not working either. I’m trying to figure it out, but the answer eludes me. So I’ll forge ahead and continue the treatment, while trying to stay grounded, objective, and hopeful all at the same time.

When I have dreams about suddenly being cured and standing up from my wheelchair, and I do have these dreams, I’m not only happy for myself, but also for Kim. Nothing in the world would mean more to me than removing the weight of my sickness from her shoulders. That’s why I keep searching for the positive every time I transfer from my wheelchair, every time I brush my hair, and every time I operate a zipper. Despite my better judgment, I keep the door of hope open, if only a crack.
Daylight turns into night
We try and find the answer but it's nowhere in sight
It's always the same and you know who's to blame
You know what I'm sayin', still we keep on playin'

Head games, that's all I get from you
Head games, and I can't take it anymore
Head games, don't wanna play no...
Head games

Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.

Tuesday, October 2, 2012

Yesterday, at the End of My Street

Yesterday, I was lounging around on my deck, looking out over the ocean. I noticed a bald eagle sitting on the rocks in the middle of our little cove. I grabbed my camera, put my wheelchair in third gear, zipped the hundred feet or so to the end of our road, and snapped these pictures.

In these photos the tide is about halfway in (or halfway out if you’re a pessimist). At this point there are usually about 50 seagulls, some ducks, and an assortment of other birds feeding near these rocks. Understandably, I don’t see any birds except the seagull that this eagle is devouring. I wish I had witnessed the kill. That would’ve been amazing.

Just last week I posted about how, since I now live in the city, I’m learning to take the bus for transportation. This experience with the eagle reminds me that South Portland still has a little of the wild side left in it.

After snapping the eagle photos, I turned my head about 90° the left and took in the view of this huge cruise ship. Almost every day this time of year there are one or sometimes two such cruise ships docked in Portland. Living in an area where both eagles soar and cruise ships visit is probably not a bad thing, right?

For another post about my beautiful neighborhood, click here.