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.

From the Personal to the Political

In other posts I've written about betrayal. When one is faced with the reality of a serious illness, there's the most basic betrayal – that of one's own body. There's also the betrayal, whether conscious or not, by those close to us, who for whatever reason can't or don't step up to the plate in the way we need them to, at the time we need them the most. With this post, I'd like to open the discussion of another betrayal – the betrayal by one's government. The betrayal of my government. Sounds a bit harsh, maybe? Perhaps a bit overly dramatic? Because one could make the argument that there isn't a defined role for the government in matters that are considered "personal" matters. It's not the government's fault that I became ill. And one could argue that it isn't the government's responsibility to take care of me, or you, when illness, or joblessness, or old age strikes.

But it's not quite that cut and dry. We have already agreed that it is, at least to some extent, the responsibility of the collective when someone needs help. We've decided that it is the obligation of society to look after people who, for whatever reason, need the help of others. We have unemployment insurance, welfare, Medicaid, emergency rooms, shelters, schools, fire and police departments, and on and on. A big part of this is simply enlightened self-interest. It behooves us as a whole to have a well educated populace. And if your neighbor's house is on fire, there's a clear benefit to getting that fire put out before it reaches your house.

But I believe that just as important as our-self interest in these matters, is our human need to reach out and support our fellow travelers on this amazingly complex and wondrous journey that we are all on together. Because we are, at heart, ethical, moral and compassionate people.

Except when we aren't.

Except when we can find a way to justify turning our backs and not helping.

And I want to be clear about something. The word government isn't just a description of the men and women on Capitol Hill. The government is us and we are the government. Which means that we can't wiggle out of our personal responsibility in these matters. "People get the government they deserve." That leads me to the thought that it's prudent to think about what exactly it is that we deserve. What kind of people are we? What kind of people do we want to be? And while I am certainly happy, thrilled actually, that we have a new administration in place, I've been thinking that it's not time to sit back and bask in the glow. Because there is a lot of work yet to do and we've only taken the very first step.