Brave New World

I can't stop thinking these days about what an amazingly interesting time it is that we live in. I'm also trying not to think of the supposed ancient Chinese curse – May you live in interesting times. And I must say that I'm actually happy that I was born when I was. I'm old enough to remember a time before the internet, before computers and cell phones, and even before calculators (see Patience blog post). Yes, I'll really date myself here; I even remember watching the moon landing on our little black and white TV with the rabbit ear antennae. This allows me to be in this nice little middle ground of being truly grateful and even astonished with the technological advances of the past few decades, and at the same time comfortable enough to tackle the details of learning to actually use these advances.

As much of a fan as I am about these innovations, I'm also not immune to recognizing the downside: the lack of privacy, the false sense of intimacy, the fact that all of this information that we now have easy access to isn't always correct, the increasing need for immediate gratification. But still, the gains far outweigh the negatives, and I am confident that we will figure out ways to address the not-so-great aspects of this brave new world that is increasingly at our fingertips.

One of the benefits to this technology is, obviously, the easy availability of information. Information and knowledge have always been considered prime real estate. It's not difficult to understand why African-American slaves were not allowed to learn to read. Knowledge is power, and the availability of information in our times is the great equalizer. Go to a doctor now and there's a good chance that you, as the patient, will have just as much information on what research is being done relating to your illness as is your doctor.

But Brave New World doesn't only refer to technology. Socially we are also in a time of change; asking ourselves what is and what should be the role of government in providing access to certain benefits to all citizens. And I hope you'll forgive a little tangent here. I am increasingly perplexed at how anyone could possibly be opposed to universal health care. The argument against always comes back to the dislike of "big government." But we are mostly all in agreement that the government is there just for the purpose of giving us a centralized means of providing certain services to its people. It makes sense for the government to play the central role in coordinating a military, and building interstate highways. And, I might add, there's this question - is the system we have now working? Now we have insurance companies making medical decisions. These are the same companies who want to find ways to NOT pay us when a disaster strikes. They are also the same companies who now are asking for government bail-out money because they ran their companies so poorly.

Now that I have that off my chest, I'll get back to my point. On November 4^th I walked out of my polling place and felt the vibration of my BlackBerry announcing that I had an email. I glanced at the little screen and thought, wow, I have an email from Barack Obama, that's kind of cool. His campaign sent me an email asking if I'd be willing to make some phone calls to people who hadn't voted yet, encouraging them to cast their ballot. Okay, it probably wasn't just me that he asked, but I still felt special. And I did make some phone calls. And perhaps some of those phone calls actually pushed the recipient to get over to their polling place and pull the lever.

What this tells me is that we are at a point of great potential and opportunity to enact significant change. We have increasing equity over the dissemination of information, we have technology in place and evolving that allows us as citizens to have our voices heard, and we have an administration that is not only willing, but apparently eager, to hear what those voices have to say.

It's time to step up to the plate.

Urgent!

As I mentioned in another post, my initial response to finding out I have Parkinson's disease, was to go into information gathering mode. I spent hours on the internet researching different treatment models, experimental drugs in the pipeline, promising clinical trials, medication information and on and on until I started to feel confident that I had a level of expertise about Parkinson's disease. When you have an illness, especially a chronic illness, most especially a degenerative chronic illness, you want to feel that you have control over something. I was also fortunate to find an online forum for people with Parkinson's disease, as well as other chronic illnesses, such as MS, Crohn's disease, and a host of others. The combination of gaining an understanding of what it means to live with a chronic illness in general and Parkinson's disease in particular, along with the support of an online community was an enormous help in weathering the storm of learning to live with this unwelcome visitor. I kept this up for at least a couple of years. Sometime after that point I started feeling tired, tired of too much information, tired of not enough information, tired of obsessing, tired, mostly, of just thinking about it all the time.

As any of us who regularly use the internet know, the availability of information out there in the ethers is a wonderful thing. It can also be an overwhelming thing. I started this blog for two reasons: I needed it, and I also thought that it could be helpful to other people living with a chronic illness. And it seems that for whatever reason, people like what I have to say. I know this because you are reading and coming back. So I've decided that it's time to take this up a notch. In the next week or so I'll be migrating this blog to another site at the nadgb.com domain. In addition to the blog, there will be an old-fashioned Web site. I will also be incorporating other features that I think will be helpful to people living with a chronic illness, as well as the people who love and care about and for a person living with a chronic illness.

Oh, I mentioned up in paragraph one that I started this blog for two reasons. Recently I've come up with a third reason. After eight years of time squandered, time our country could have pushed forward on issues that directly impact us all, issues like stem cell research and affordable health care, we have an opening. Honestly, I don't want to waste another moment. I am tired of waiting for someone to take action. I want to take action. I want all of us to take action.

What do you want to do? I'd like you to tell me as I set up my new site. What would be helpful to you in managing the cards that we were dealt? And what would you like the powers-that-be to know about your struggle? I hope that you will take the time to think about it and let me know. It's urgent.

angela@nadgb.com.

You’ve Got to Be Joking

The comedian Ron White has a bit in his act where, describing a run-in with the police, he says "I had the right to remain silent, but I didn't have the ability." Well, let's just say that I can relate, as evidenced in an encounter I had with the police a couple of years ago. I had gone out to dinner with two friends. We got back to my car, got in, and looking over my shoulder, I pulled away from the curb. A microsecond later, I saw the lights from a police car behind me. The officer approached my car and asked me if I knew why he had pulled me over. Now, I grew up with a step-father and three uncles who were cops, so I knew what to say, and in this case it was actually true. I said, "no officer, I have no idea." Apparently, the reason he had pulled me over was I hadn't used my turn signal when I pulled into traffic. Actually, when I pulled onto the street, because there wasn't any traffic, which is why I hadn't used my turn signal.

Then it got even more interesting when he asked me if I had been drinking. Again, I know, also from growing up surrounded by cop relatives, that if you are ever asked this question by a police officer, there is only one acceptable answer and that is "no". But I knew in this instance that he would know that I was lying because I had ordered a drink at the restaurant made with Midori liquor, and that he would have certainly smelled it. Also, I just didn't feel like lying. So, I said yes. He asked me how many beers I had had. I told him the truth, that I hadn't had any beer, I'd ordered a drink with Midori, it was disgusting, I'd drunk not even half of it, and I hadn't had anything else. Apparently he didn't believe me and started to do a field sobriety test. At that point I told him about my Parkinson's. I explained that two of the symptoms were tremor and problems with balance, and that the symptoms got worse under stress, and this was certainly a stressful situation, so if he noticed those things, that would be the reason.

He looked a bit discomfited when I told him this, and kept asking me how many beers I had had that evening. I'd answer him, again, I didn't have any beer, I'd ordered a drink made with Midori, it was disgusting, I drank maybe half of it, if that, didn't have anything else to drink. Finally he said, "okay, I'm going to have you do one more thing, and if you pass this, I'll let you go." Pointing to a line in the sidewalk he said, "I want you to walk heel to toe along this line."

This is where I said, "You've got to be joking."

Looking directly at him I continued, "with all due respect officer, I just told you that I have Parkinson's. I also told you that I have problems with balance and that my symptoms get worse when I am under stress, and this is stressful. So, I can also tell you that if you think that I am over the legal limit, you should just take me in right now and give me a breathalyzer test, because there is no way in hell that I can walk heel to toe along that line and pass the test. So what would you like me to do? Of course, that would be your call."

He stared at me for a few seconds, I'm sure running through the possible scenario, he takes a woman with Parkinson's to the station, she passes the breathalyzer… He then walked over to his squad car, talked with his partner for a few seconds, came back, handed me my license and registration, told me to drive safely and have a nice evening.

A couple of days later, I told the story to a friend. He commented that wow, I had a pass from now on if I ever got pulled over again. It was funny, but also telling. Apparently, as with Ron White, I might have the right to remain silent, but fortunately, very fortunately, not the ability.