Sunday, April 19, 2009

I've moved!

Hi All.

Well, it took long enough, but my new blog site, while not finished (as if you actually ever finish these things) yet, is up.

Visit me at:

I am working on a Web site as well, hence the new domain. The site will provide information about the more "logistical" aspects living with a chronic illness. I'll keep you posted on the progress.


Friday, March 13, 2009


I had a weird day today. Come to think of it, the past couple of days have been weird. Of course, being a writer, I know that "weird" is not the most descriptive word in the English language. For that, I apologize and feel the need to state for the record that it's not that I don't have quite an extensive vocabulary, because I do. I also am in possession of a dictionary, as well as internet access. And trust me, I've been trying my damndest all day to come up with a word more appropriate than "weird". So far, no luck. Perhaps the word I want doesn't exist. If it does, it wouldn't surprise me at all if it exists only in German. I'm going to try to describe what I have been experiencing, which might help me find the word I want. If that doesn't work, at least I'll have given you enough information that you'll get the gist of it.

Okay, first question, where to start? I have no idea, so I'll just pick something and go from there. Tangent alert! This reminds me of a discussion I had recently about writing, specifically about writers who, like me, don't begin with an outline vs. those writers who have a good idea before they start something of where it's going to end. And I just don't get that, because to me, the fun part of writing is the process of discovery. Where's this gonna go? How's it going to end? When will she finally meet George Clooney? I'm thinking when I start writing, hey, it's an adventure! That's cool. So, let's roll up our proverbial sleeves and see where this one takes us.

As near as I can tell, this "weird" place I find myself in, started the day I posted my blog entry titled Faith. That same day I was talking to an acquaintance who considers himself agnostic with a dash of atheism thrown in for good measure. Spiritually-wise, I don't have any idea what I am. I like to think of myself as a bit of a spiritual mutt. Anyway, at some point during this conversation I had a mini-epiphany, which goes something like this. I think that there are two kinds of people. The first group, to which I fortunately consider myself a card-carrying member, looks at life with a curiosity, an openness, a reverence, and sometimes even awe, regardless of religious beliefs. Because if you let yourself think about it, or more accurately, feel about it, it's really kind of sweet, and sad, and touching, and poignant, that here we all are, and none of us can possibly know for sure how or why we all are here, and that life is wonderful sometimes, and awful sometimes, and sometimes even so heavy that it's amazing that any of us actually do get out of bed in the morning and head out the door or over to our computers, or wherever it is that we go. Sometimes it's impressive that we manage just to show up at all. But most of us do. Most of us are even fortunate enough to find ourselves experiencing moments of happiness, and even joy, along the way. And sometimes it hits me how incredible that is.

Living in New York City, I get to experience the joys of NYC transit. For those of you who haven't had the opportunity to ride the New York City subway system, let me explain how it works. Scratch that; I am not that ambitious this late at night. I'll just describe what you need to know in order to understand what comes next.

Most of the subway lines have both local and express lines which at certain points along the routes run on the same track (leading to annoyance for the people on the local when we hear the announcement that we have to wait while the special people on the express train get to go ahead of us), and at other points run on parallel tracks. Occasionally it happens that for a few seconds the local and the express trains will be running next to each other at approximately the same speed. This means that the passengers of one train get to see directly into the car of the other train. Why is this important? Well, for me at least, it leads to this cool little feeling of being in a bubble which feels almost like being in a play while at the same time watching a play happening on the stage of the other train. Every time this has happened to me, it's always (not an exaggeration here, it truly is always) that the people in the subway car that I am in are utterly silent. And while I can't know this for sure, it appears that the people in the car opposite of us are completely silent too. Nobody moves. And it's just… I guess the word I want is, beautiful. I know that this is way too long a description of the word that I'm not sure even exists, but it is how I feel at these moments. I can see into this other car and they can see into mine, and it hits me that we all, or at least most of us, are muddling along as best as we can; sometimes making mistakes, sometimes even really big mistakes, and sometimes doing really wonderful things. Some of these things are hugely miraculous, even heroic things. Things like being there to tuck your children into bed at night. Or helping someone from another country who wants to make this country her new home. Or caring for aging parents. Or running a local theater company. Or adopting a child. Or taking the time to listen to a friend when you really need to cook dinner for your family. Or trying to keep a local coffee shop open against all odds. Or getting out of bed in the morning when you are living with a significant illness. Or putting on your uniform knowing that you might have to run into a burning building. Or working at a minimum wage job when you were a doctor in your native country. Or giving a homeless person your last few dollars because your odds are better than his that you'll be able to replace those dollars.

And how can you not, how can anyone not, think about these things every once in a while and not be awestruck at the tenacity and tenderness of the human spirit?

Now, you may be thinking aha!, she got lost on her tangent and forgot that she mentioned a second group of people. Not to worry. So the second group of people are those who, simply put, seem to be closed down. These folks have all kinds of reasons and rationalizations why their particular view on a particular topic is correct, is right, and yours is simply, wrong. And I realized recently that I like the people in the first group, and even if we happen to disagree on something, even something really important to me, well I still want to know them, and I still want to maintain my connection to them, because I know that deep-down, they are trying to do the best they can. And when I think about the folks in the second group, you know, the people who are opposed to this and that and the other thing, just because, all I can think is, how sad I am for them to live a life that's all about rules, and form, and black and white. And I also think, just get out of my way because I have work to do. All of us in the first group have work to do. God knows we may not always go about it perfectly, but at the end of the day, we want to make this world a better place. Because we know that it can be, and we also know that we just have to, whether we have any idea of how to go about it or not.

Do I have the word yet? No, but vocabulary be damned, because I may not have the word, but I have a mission. And boy, am I in good company.

Saturday, March 7, 2009


I don't know about anybody else, but I'm having a party on Monday. Well, maybe not a party, but at least I'm going to have a celebratory drink or two. On Monday President Obama will reverse George Bush's restrictions on stem cell research.

My celebratory mood will most definitely be tinged with sadness not to mention anger at the fact that we've lost eight years of precious time; eight years that could have brought us closer to a cure for numerous diseases. Diseases such as Parkinson's disease. And cancer. And diabetes. And heart disease. And spinal cord injuries. And there are a whole host of others on that list as well.

But our former president thought that the rights of those of us who are dealing with these diseases every day of our lives, you know us sentient living human beings, weren't as important as the "rights" of a clump of cells. Well you know Mr. Bush, I beg to differ. I think, no scratch that, I know that my right as a living human being is more important than the "right" of a "potential" life. God, I can't believe that I even have to say that. So, what the hell, I'm going to say it again. My right as a living human being is far more important than the "right" of a potential life. A potential life, I might add, that will almost certainly end up being discarded anyway.

Of course I realize that there are some out there who, like Mr. Bush, would justify their position by raising the issue of faith. Excuse me but I do not buy it. And I do not accept it. Because faith has absolutely no place at the table when discussing matters of science and matters of policy. Ethics? Yes, ethics most definitely has a place at the table, a prominent place. But faith? No. I know people who would say, faith and ethics, what's the difference? And I'm happy to address that. Because there is a huge difference and the fact that we don't bring that discussion to the floor is a huge mistake and gigantic error in judgment.

And frankly, the fact that Mr. Bush allowed faith to play a part in his decision on this issue is more than a little insulting to my faith. Because my faith is informed by the belief that we should take care of each other, that we have a responsibility, a moral obligation to do so.

But back to the difference between faith and ethics. Faith is a personal belief system, a belief in things not seen, and while one can feel absolute certainty that this belief is real and true for them, there isn't any way that this belief can ever be proven or disproven. I'm not saying that people's faith is unimportant and shouldn't inform their decisions on their own life choices. I most definitely do not believe that. My faith is incredibly important to me and is a central part of who I am. But, I would never impose that faith on anyone else. Why? Simple, it is my faith, and as much as I trust in it for myself, I can't prove it, and I can't and don't have the least bit of interest in imposing it on anyone else. I don't expect anyone to accept my faith just as I have no interest in accepting the myth of a homophobic, misogynistic, judgmental, finger-pointing god who looks down on us from somewhere in the heavens, meting out punishments with the same level of disregard for human life as has been exhibited in sending thousands of young people half way around the world to fight a war we shouldn't have started in the first place.

Now that I've got that off my chest, let's move on to ethics. Ethics are "the principles of conduct governing an individual or a group, a guiding philosophy, a consciousness of moral importance".  A society develops over time an agreed upon systemic view of what behaviors are acceptable and which are not. Even if this system isn't articulated or codified in any formal way, we have a baseline for what is acceptable and beneficial to the individual as well as the collective. Let's look at an example. I think that most of us would agree that in our society, murder, except under extenuating circumstances, does not fall in line as an ethical behavior. Base that decision on "faith," well then I suppose stoning a woman to death for adultery is just fine.

The way I like to think of it is this – when people talk about doing something based on ethics, it generally means doing good, but when people talk about behaviors in light of their faith, it is usually used as a way to justify a behavior that violates the rights of others. In other words, rationalizing an unethical behavior.