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:

http://blog.nadgb.com/

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.


Angela

Poignancy

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.

Faith

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.

http://www.nytimes.com/2009/03/07/us/politics/07stem.html?hp

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.

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.

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.

Comments

The word verification function in the comments section is currently not working for some sites - mine being one of them. The blog gods are working on a fix, so if you tried to leave a comment and couldn't, I hope you remember it and will try again later!

So, What Are You Not Writing?

Well, hmm, an interesting question that was posed to me last night. What are you not writing? Not surprisingly, this came from a therapist friend. What are you not writing? When he asked, I couldn't really think of anything. I said, well, I still have a lot of ideas for posts that I plan to write, but I don't think there's anything I'm not writing, as in avoiding, as in scared to write. Just to make sure though I pulled out my list of blog post ideas, and came to the one that I was calling, "People Just Don't Get It."

Oh, yeah, there's that one.

What I explained to my friend is that I had set this one aside because it involves people very close to me and their less-than-optimal responses when I told them I had to leave my job. Therapists like to call it "empathic failure." And, it's integral to the point of the story to indicate who these people are in relation to me, but I haven't been able to find a way to do this without "outing" them. That just strikes me as unfair to them. Then I stopped and thought, oh wait, maybe that isn't really the problem. Well it is a problem, but really, the main reason that I haven't gone back to that post, is that it feels way too hard. (One point for the therapist friend.) Because these are people, who of all people, should just get it. So, in order to protect their identity, yet still be truthful, I'm going to mush them together into one person, and we'll just call him Fred.

While I really wasn't looking forward to telling anyone that I had to leave my job, there were a few people in particular that I dreaded telling; the composite of those people being Fred. Therapist friend again (he's been busy these days), suggested that if these folks did react in the way I anticipated they might, to remind myself that it came from a place of worry and concern for me. Yeah, well good advice in theory. The reactions I did in fact receive, were overall about what I had expected, some a little, some a lot worse. These were some of Fred's comments:

• You did what?
  
• In this economy?
  
• Why didn't you try to work something out with your employer?
  
• What are you going to do about health care?
  
• I can't help you out.
  
• I don't think that writing is a good plan; what's your Plan B?
  
• I don't feel good all of the time either, but I manage to get to work every day. You just have to force yourself to do it.
  
• I just don't understand you.
  
• I don't understand the choices you make.
  
• Why are you living in New York? It's expensive, why don't you think about moving?
  
• Have you thought about what you're going to do in a few years? Because you really need to have a plan.
  

Why was I concerned that this would be the kind of responses I would get from Fred? Mainly because I'd been getting these kinds of comments for awhile.

• Don't fall apart on me.
  
• You just need to force yourself to ….
  
• Let's just set aside the fact that you have PD and focus on your psychology.
  
• When you make these excuses about why you can't…. I just choose to ignore them.
  

See, the thing is, I can tell myself that this comes from a place of worry and concern, and that Fred just can't let himself think about my situation because it's too hard for him. But what that means is that it leaves me in the position of having to either not share anything with Fred, or share things which I will then be forced to justify and rationalize. When, HELLO, in my opinion, perhaps Fred should be coming to me on occasion to ask me how it's going. What hurts me more than anything, is that Fred never said the two things that I really needed to hear: I am so sorry that this is happening to you, and is there anything I can do to help? I think that Fred believes that his method of "strategizing," which consists of barraging me with suggestions, orders, questions, criticisms, et al is being helpful. Well Fred, it isn't. And underlying all of this cross examination, I feel the subtext which isn't being spoken out loud is that Fred doesn't believe me. Here is my response to Fred:

Fred, spend just a few minutes in my shoes; then we'll talk.

Right now, I have to resist the urge to address the comments listed above one by one, because, you know, I just shouldn't have to. But, I feel the need to make the following points:

• Do you honestly think that I want to be in this position, do you think that I am happy about it?
  
• Let's look at PD and working capacity. One study showed that seven years after diagnosis, only 16% of the study participants were still working, 12% full-time and 4% part-time. I made to ten, can you maybe give me a little bit of credit for that?
  

So Fred, here is what I would like from you; could you perhaps on occasion say something to me along the lines of, good job? Seriously, that's all I want from you.

And Fred, I'm not willing to protect you anymore. This is my reality, this is what I deal with every day, and I am no longer willing to hide it in order to help you avoid the truth.

Shameless Ask

As I mentioned in a previous post, I love my local NPR radio station. I'm tempted to veer off into a tangent and express my personal opinion of the right-wing "liberal media" accusation, but I will refrain. All I want to say right now is that I LOVE NPR AND YOU SHOULD TOO. Liberal or not, where else can you get an honest analysis of current events and not just a sound bite? Life isn't simple; the issues that we face individually and as a society aren't simple. If you think about it for more than a minute, you have to acknowledge that the world isn't black and white, that the issues we face, especially now, are complicated and require much more than a knee-jerk response.

And there's a lot of fun stuff too.

It happens that my NPR station, WNYC, is having their winter fund drive, and perhaps your local NPR station is too. So GIVE THEM MONEY. During crazy economic times we all, of course, review our discretionary spending a little more closely. But I can't think of a time in which I rely even more on the thoughtful programming I get to hear every day from my station. I'm asking that you think about what you get from your station and show your gratitude with a pledge. Jeez, and they're not even paying me.

That’s not fair!

I have this crazy idea that when you have a serious illness, you should get an exemption from other shitty stuff happening to you. Unfortunately, it doesn't seem that God got that particular memo, because I know plenty of people who have more than one shitty thing going on at the same time. So, it got me wondering about the whole concept of fairness, because in my mind, that is really unfair. And fairness is something that we consider to be kind of a kid's thing don't we? But I'm not sure that we ever grow out of it; I think we just do a better job at hiding it. And I'll admit it; I do it all the time. For example, I keep buying those stupid lotto scratch-off tickets. Somewhere in the recesses of my brain I think that, really I should win, because don't I deserve it more than most people? Isn't it only fair?

And I think the fairness thing works the other way too. You know, the whole schadenfreude thing. You gotta love the Germans; who else would have a word for taking pleasure in the misfortune of others? Because I think that in our elementary school minds, that's a fairness thing too. When something bad happens to someone else, guy trips, neighbor loses her job, the cousin that you never liked much gets sick, well you probably wouldn't admit it to anyone else, but sometimes there's this little twinge of feeling that maybe that person deserved it. This is quickly followed by the thought that whatever the shitty thing is, it would never happen to me. That wouldn't be fair at all.

Of course, if we let ourselves think about it, any of these things really could happen to us. In fact, all of us are just a heartbeat away from a lot of potential shitty things knocking at our door late at night. That is precisely why we don't often let ourselves think about it. So the fairness concept that we might have thought we left behind in grade school, is probably right there with us still. I remember having a conversation with one of those new-agey healing people. She didn't know that I had a degenerative illness, but we both had attended the same new-agey school, so I'm sure she assumed that I was a like-minded individual. Well she kept going on and on about how health is the natural state of the human body and if we could just accept that, believe that, then we'd all be perfectly healthy and well for the rest of our lives. At one point I asked her, so what do you do when you work with someone with a serious illness who isn't down with the concept that they're responsible for their illness? That must be difficult. She misunderstood the intent of my question and said something along the lines of, yes, it's always hard to work with someone who is resistant.

Ah, resistance, my favorite word. I have a masters degree in clinical psychology and as a student, we all loved the concept of resistance. Because, while it is of course a real live defense mechanism, it can also be really convenient for the person on the other end of the couch. Say you've been working with someone for awhile, you're pretty darn positive that your brilliant diagnosis and brilliant treatment plan is spot on. But they just won't go there, fighting your also brilliant interventions tooth and nail. Of course, that can only mean one thing. Obviously, they're resistant. Couldn't possibly be that you might have perhaps missed the mark.

So I said to the new-agey healer person, hmm, so you're saying that anyone who has a serious illness is just out of alignment, or not willing to accept that health is their natural condition, or has unexplored anger issues, or something, anything other than just plain crappy luck? At this point she got a bit hesitant, and looking at me warily, responded, yes. Not that the other person is aware of it necessarily, she quickly added, sometimes this stuff is buried pretty deeply. Well I'll spare you the details of my response and just say that she got away from me as quickly as she possibly could after I finished my tirade.

A very good friend of mine works as an immigration attorney and she is really tired and frustrated and angry right now, because it seems that more and more we are falling back on the letter of the law and ignoring what is humane, and appropriate, and moral, and ethical, and might I add, the right thing to do. And we seem to have no problem in this society throwing people to the wolves. What worries me now is that as things get worse with our economy we will fall back on this black and white thinking mode, this notion that what happens to another person couldn't possibly happen to us, because we're just somehow better. The result being that a lot of people will be hurt or at least, not actively helped. Why do I think this will happen more and more? Because that whole concept of "fairness" is based in fear, real justifiable fear, that really any one of us could have something really shitty happen at any time. And there's nothing like the economy falling down around us, to get the fear juices flowing.

And it doesn't take too much thinking to come up with examples of what atrocities can happen when people are afraid for their own skin. You know, when "good people do nothing."

Betrayal

Well, I think today I want to talk about what it's like when your body begins to betray you. How often do we think about our bodies? You know, when everything is going well. Let's picture this scene: you're sitting in your chair and decide that the box of cookies you bought yesterday would hit the spot right about now. So, you get up from your chair to walk to the kitchen. Actually, you have the thought that you're going to get up from your chair. You probably don't even consciously register the thought, but somewhere in the recesses of your brain a little neuron sends a little jolt of electricity to your muscles letting them know that, HEY, it's time to get up from the chair. Except, for some reason, that little process that happens, oh I don't know, a gazillion times a day, doesn't work this time. So, you find yourself puzzled at the fact that you intended to get up from your chair, you fully expected that by now you not only would be up from your chair, you should in fact be in the kitchen reaching for that box of Mallomars. But you aren't.

Hmm. Let's just say that it's disturbing. Because, it's not that big of a deal that you aren't already happily eating your cookies, but it is a very big deal that your body, which you normally take for granted, has not done what it was supposed to do. And, while you are safely ensconced in your living room, now suddenly you have doubts about your body. It has betrayed you once; when will it happen next? When you're crossing the street perhaps? How do you explain that to people? Now let's picture that you are in fact preparing to cross the street. Let's even draw the picture a little finer. It's your lunch hour and you're with a group of your co-workers. The walk signal has started blinking and the other people in your group have already started bolting across the street. But you hesitate because suddenly, the image from the night before flashes in front of you. What if your body fails you again at that very moment? The odds, you think with the rational part of your brain, are slim. But it doesn't really matter what the odds are. Your body has betrayed you once, and you know in your heart of hearts that it will betray you again. Perhaps not at that very moment, but sometime.

Now you look up, your co-workers are already across the street, the light has stopped blinking and is a steady, don't walk red. And you can see the puzzled looks on their faces, why didn't you bolt across the street? What's wrong?

Everything, you think, everything.

To Disclose or Not to Disclose

I'm not a list person, especially those "pro and con" lists that we're supposed to make when faced with a difficult decision. I know people who swear by them – question at the top of the page, pros on one side, cons on the other, objective viewing, presto, decision made. In my experience trying to weigh the pros against the cons usually leaves me even more confused. Let's take the thorny issue of disclosure. You've just received a diagnosis of a chronic illness; when, how and to who should you disclose that information? Well, I can think of tons of reasons not to disclose, and really, only one good reason why one would want to disclose. In future posts, I'll be discussing the various considerations to keep in mind regarding disclosure. For this post I want to focus on the one good reason in favor of disclosure.

Drum roll please….

It's easier.

I'm not saying that the actual disclosing is easy. Obviously, sharing that news can be potentially really difficult to do. When I finally acknowledged the truth of my own situation, I thought, wow, I don't have to pretend anymore. Even so, when I sent an email to people announcing my blog, I stared at that "send" button for quite awhile. Going public has lots of ramifications. But I had to break those ramifications down between what was an issue for me and what might be an issue for other people. And then I thought, you know, I can't spend my time worrying about what might an issue for others, that job belongs to them.

The hardest part about keeping your chronic illness a secret is that it just gets more and more difficult to pull off. Have other people noticed anything that might give you away? You may get tired easily, how do you explain that? Discussing this issue with my neurologist, she said, "One problem for you is that you look really good, and most people, unless they looked really closely and knew what they were looking for would never guess that you have PD. For the most part, that's a good thing. What it means though, is that their perception of you is completely out of synch with your reality." Well, yes. It's even harder when the people you are referring to are people you live with, or are otherwise close to you.

At some point I just got tired of pretending, and tired of having to wonder what people would think if they knew, and tired of pretending that I felt better than I actually did, and tired of not being truthful. This is my reality; a reality that has been creeping up on me over the past ten years. I just don't want to pretend anymore.

Valentine’s Day P.S.

All of this Valentine's talk got me thinking about our attempts at giving romantic gifts and how the end results can be disappointing. My "nearly ex" husband holds the award for the best romantic gift I've ever received. It was our first Valentine's Day and we had been living on opposite coasts since October. I had flown to New York, he had recently moved into the apartment that we would eventually share. He handed me a little blue box. First of all how can you ever be disappointed with a gift from Tiffany's? Inside the box was a heart-shaped key chain. On the key chain was the key to his apartment. It was very sweet, very romantic, and very lovely.

Valentine’s Day

You know, I really dislike Valentine's Day. There are all of the adult reasons to dislike it; crass commercialism, feelings of self-loathing if you aren't in a relationship, or are in a relationship that is, let's just say, less than perfect. But I think the main reason I dislike it is all the left-over from childhood stuff. You know, the whole card thing. Your mom would buy those boxes of cards and you'd have to write one out for everyone in your class. The point being that everyone would get a card from everyone else and we'd all go home feeling like all of our classmates really liked us. And liked us in equal measure. The idea sounds good in theory (equity, sharing, let's pretend that we like the weird kids), but it's chock-full of holes. Like somehow, by this simple act, the teacher could wipe out all of our feelings of inadequacy. And it just never worked. Because of course the box of cards had all different kinds of cards, funny, "romantic," friendship, which meant that some people were never going to get the kind of card that they'd hoped for. And depending on what was "in" at the moment, you'd never have enough "cool" cards.

So there were two parts to the card experience, giving and receiving. You'd sit at your kitchen table with your box of cards and a list of the other kids in your class. First, you had to break the list down between girls and boys. The girls you had to further divvy up between friends and not-friends; friends obviously getting the better cards. And if that wasn't stressful enough, then you had to think about the boys. Careful thought was required. You didn't want to overstate or understate your feelings. For obvious reasons, you wouldn't want to give a "romantic" card to a boy you didn't like who liked you. And even the ones you liked, well you still had to exercise caution. Say there was a particular boy you liked; if you weren't sure that your feelings were reciprocated, god forbid you gave him a romantic card and he gave you a "just friends" card. On the other hand, he might give you a romantic card and if you had chickened out and given him a "just friends" card, well then it was entirely possible that you had just blown your one chance at eternal love.

Well, now that we're all grown up and mature, these things never apply anymore right? We always know just the right thing to do and say, and there's never a chance at miscommunication.

So I just want to take this opportunity to mention the true meaning of Valentine's Day. OH. Wait. I think the true meaning of the day involves a Christian martyr dying a horrible death. Okay, well, then let's just forget that and fast forward a few centuries.

Happy Valentine's Day. And to everyone reading this, consider yourself getting one of the "good" cards from me.

Patience

I think I was perhaps ten years old when a man came to my elementary school for assembly. He stood behind a table on which he had placed a large box. It's hard to remember the dimensions now, but I'd say maybe two feet by three feet. He asked us to call out some numbers, fiddled with a few knobs, and after a bit the machine spat out beige colored punch cards with the answers to the calculations he had fed it. I certainly didn't know what it was at the time; looking back on it now though, I realize that it was a rather large calculator. Then he told us that by the time we got to college machines like the one on the table would be small enough to fit in the palm of our hands. His prediction came true but much earlier than he had guessed. It was certainly well before I got into college because I remember buying my mother a calculator as a Christmas present about two years later.

Technology often surprises us by advancing a lot faster than we think it will. Unless, of course, it doesn't. At the time I received my PD diagnosis, Michael J. Fox was testifying before Congress to request full funding of the Morris K. Udall Research and Education Act. Ten years for a cure, was the phrase bandied about at the time. Well, it's been close to ten years and no cure. And ten years is a long time to wait when the cure is more than an abstraction. So if we didn't make it in ten, how much longer? Another ten years? Twenty? Three? Who knows, and at some point I just stopped thinking about it. It was too hard.

From the day of my diagnosis, I was obsessed with the research being done in the field, and even participated in a "very promising" clinical trial involving neuro-immunophilins. Well, the results turned out to be not so promising after all and the trial was dropped. At some point, I just got tired and decided that instead of focusing on research I needed to focus on living my life and leave the research to the researchers. Now, however, it appears that I'm ready to get back in the ring, but in a different way. Just what that way will look like remains to be seen. But we all need to stand for something, or stand up for something, and apparently this is the something that I am meant to do.

Reality 101

One of the things I've always liked about working from home is that I get to listen to the radio all day. Not music, I'm addicted to my local NPR station. I love it. As poor as I am these days, I am a committed supporter, giving them a small, but ongoing monthly donation. It's only fair since I listen ALL THE TIME. Lately though, I've had to turn the station off on occasion when the economic doom and gloom stories get too overwhelming. When I need to rev up in preparation for what I call my "rant stories" though, back on goes the station. And it only takes a matter of minutes to hear something that'll get my righteous anger juices flowing. Hell, I don't even need caffeine. The ban on stem cell research, our folly in Iraq, overpaid executives who are still getting their bonuses even as they drive their businesses into the ground. Oh yes, and it's even better when their bonuses and company retreats and trips in their corporate jets are paid for with my tax dollars, and yours too of course. I love the sense of entitlement exhibited by these pillars of society.

Today the host of one of the shows that I am particularly fond of had people calling in to talk about their fears about our current economic melt-down. One person after another talked about how unfair things were, how they couldn't believe that these things were happening, how they were afraid of losing everything, wondering how they would pay for their kid's education, their own retirement, cover the exorbitant monthly payment for their health insurance. Now, normally, I think I'm a pretty sympathetic person, but this morning, as these people went on and on and on, my only thought was – welcome to the club.

We're a nation of individualists, masters of our own destiny, believers that entitlement programs are bad and go against the grain of what this country stands for, and while our tax dollars go to pay for health care (really good health care I might add) for our elected officials, we seem not to have any issue with the fact that these are the same folks who say to me, and to you, thanks so much for paying for my health care, and by the way, regarding your own health care, you're on your own, and good luck with that.

So, I must make a confession. While I'm sorry that so many folks are having trouble sleeping with wondering about what these scary times will mean for them, I have to say I think it's about time that we all got a little taste of reality. Because the truth is, none of us are safe from bad things happening, and security is an illusion. Yes, I have an illness, and a scary one at that, but the reality is that tomorrow any of us could slip in our bathtub, or get hit by a bus on our way to work, or have a plane fly into a building in our city, or get fired, or… I'll stop now, because I'm sure you get the idea. And I want to say to these people, life isn't just what you make of it, and you may think that you have control over circumstances, but for the most part you most assuredly do not. The only thing that you can have 100 percent complete control over is how you handle the cards that you are dealt.

And for those of you who get all excited about individual responsibility, and smaller government, and just how wonderful the free market is, I have one other little saying for you – you are your brother's keeper.

When President Obama unveils his plan for a universal health care program, keep in mind one other thing, the last time our country was this bad off, we had a president who created the biggest entitlement program ever, and nobody today questions that decision at all. In fact, talk by our last president of eviscerating this program caused such outrage that he was, fortunately stopped in his tracks. That program is called Social Security.

Not All About Me

There's nothing like a degenerative illness diagnosis to make one obsess about oneself. I remember not long after getting the word that I have Parkinson's disease, my husband and I were crossing the street on our way to a restaurant when I tripped and almost landed on my ass. When my husband asked if I was okay, I started crying. He, of course, thought I was crying because I had hurt myself; I said no, that I was upset because I was starting to lose my balance already. (Loss of balance is one of the signature symptoms of PD.) He took me back to where I had tripped, pointed to a rather large pothole that I hadn't seen and gently pointed out that anyone stepping in that would have had trouble not falling.

Yes, so there's a long list of fun things to obsess about: physical symptoms, progression, who to tell about one's diagnosis, who not to tell, what to do when the time comes that you can't work anymore, the high cost of health care. There are certainly a lot more things to include in this list, but you get the idea. Besides, I'm getting depressed thinking about it. More importantly, that's not the point of this post.

What I'm thinking about now is what it must be like for other people, the people who care about me, knowing that I have this illness, and wondering about my future. Because while it's only natural for me to think about these things, I'm sure they do too. On top of that, I think that they must worry about how much to tell me about their own fears. Really, not many of them do, probably because they figure I have enough to deal with as it is. But actually, I really would like to know. So, here's an invitation to share those things, either by leaving a comment on this blog, or getting in touch with me offline.

And in addition to thanks upfront for sharing, I want to thank you for everything else all of you do for me, most of all by simply being there.

Magic Wand

Sometimes I find myself thinking about the strangeness involved in having a chronic illness. Not just the physical failings of your body, but how it changes you in a way that is difficult to describe. Trying to understand what it means right now, and what it will mean in the future is quite surreal. It's not as if this thing that you've just been told you have is going to kill you, at least not for some time, and the diagnosis itself is anything but definitive, because degenerative illnesses seldom have a set course. Terminal illnesses tend to get most of the press, I think because they are inherently more dramatic. Hearing someone say "I have cancer" has a very different impact than hearing someone say "I have MS," for example. Not that it's a contest and anything that forces an acknowledgement of the fragility of your body sucks mightily. But it seems to me that the psychology of the two is completely different. When one gets an terminal illness I would guess it must feel as if you have an enemy to fight, and that enemy either wins or doesn't. When you find out you have a chronic illness on the other hand, it's more like you have an unwelcome visitor; a visitor who has no intention of leaving, ever. So, you have to find a way to befriend it, arrive at a détente, or at least form an uneasy alliance.

But the thing that is really interesting to me is to think about what I call my magic wand question. Here it is. If someone had a magic wand and by waving it over me (maybe with some sparkly stuff thrown in for good measure) and make it so I never would have had PD, would I take them up on the offer? I want to be clear on the details of the offer – not that I would suddenly be cured, but that I would have never had gotten the disease in the first place. Poof, gone, never happened. And I have to say, I wouldn't take them up on it. Why? Simple, because I wouldn't know who I would be without it.

A friend of mine received his own life-altering diagnosis a few years ago. I think it was day three after he got the news, and he was in a really bad place. During one of our several times daily phone conversations, I said to him, "I'm going to tell you something and I don't expect you to believe me, but I am asking you to trust me; you will find blessings in this." Well, in the moments of silence that followed, I could almost hear his struggle about whether to tell me to fuck off right then and there, and possibly never speak to me again, or to do his best to listen to what I had to say. Through clenched teeth he replied with something that indicated he was less than grateful for the news. I told him in response that I wasn't in any way shape or form saying that it was a good thing that had happened to him and that I wished more than anything that things were different. But, I repeated, I'm going to say it once more at the risk of you hating me forever, because I want you to hear me. "You will receive blessings in this."

Well, long story short, we laugh about it now. He's told me that I was indeed correct in my speculation that it was all he could do in that moment to refrain from hurling a string of epithets in my general direction and then hang up the phone.

But it somehow stuck in his brain, and I think, offered him a bit of hope. Now we often talk about those blessings. And so will I, in future posts.

My Posse

Not surprisingly, in the short time since I posted my change of blog, I've received some incredibly touching responses. The reason that I say "not surprisingly" is that I am somehow fortunate enough to have some pretty amazing people in my circle. Well, I have never been as glad of that as I have been since my Parkinson's diagnosis, and most especially in the few months since I moved into this new chapter of my life. And I'm not just talking about the warm fuzziness of having great friends and a great support network. That, in and of itself, would certainly be benefit enough. But I'm thankful on a much more practical level; I know that there is absolutely no way I could have managed to get this far without them, without you.

So to those of you who have commented on my courage, I just want to say thank you, but it wasn't just me. It was you too. And trust me I am not being falsely modest here. A few weeks after I did the headfirst into the new, I was sitting in my kitchen repeating the mantra, "I can't do this, I can't do this, I can't do this." Well, I grew up in the S.F. Bay Area so of course I know that mantras are supposed to be "positive" statements. Whatever. But I knew in that moment that there was absolutely no way I could do this by myself.

This may surprise those of you who know me personally, since I do have a tendency to talk about my stuff to death, but I do not like to ask for help. My realization at that moment in the kitchen though, was that I had no choice. It was a bit sobering, not to mention, um, terrifying.

Well, there is a good thing about stark reality, it kind of puts things into perspective, highlights one's choices, so to speak. So I bit the bullet and made a list of people and what they were good at. And then I did a whacky thing. I asked these folks if they would help me. And, wow, they said, sure, of course, would love to, what can I do, was wondering when you would ask. This is not to say that once I had that transformative moment, everything was all peachy, as highlighted in my cursing at God post. Regardless, people continue to show up for me.

What you don't necessarily consider, or maybe I'm just a bit slow, when you ask for help and people say yes, is that you kind of have to do your part. There's always a catch. So, during one of my less than brightly optimistic moments as I yet again considered giving up, I thought about my responsibility to the people who continue to express their faith in me and I imagined their responses if I called it quits. Then I made a list (which continues to grow, by the way) of those folks, and I wrote the following document, which I keep prominently in front of me as I work.

Angela's Do Not Disappoint List

The names appearing above are people who care about me, believe in me, have "shown up" for me in one way or another (some in rather remarkable ways), and expect me to "show up" as well. They want and expect that I will be successful. Success here is defined as showing up, doing my best, not giving up, listening to my voice, following my gut, paying attention and telling the truth.

I have wanted to be a writer, for probably even longer that I consciously realize. It's my calling, it's what I love, it's what I am good at, it is the best way for me to help others.

I will not quit. And when I am tempted to quit I will look at this list and imagine talking to each and every person on it and telling them that I have decided to give up, that their faith in me was misplaced. Charlie, of course, will be standing behind me, sniggering into my ear.

Fortunately, I won't have to do this, because quitting is not an option.

The Day After

A few people have asked me what I did the day after my diagnosis. An interesting question and I'll tell you the answer in a bit, but first I want to tell you what I did the day of my diagnosis. My fiancé was with me at the tail-end of the marathon doctor's appointment where I received the wonderful news that I had Parkinson's. As we walked out of the medical building, I remember it being cold and sunny; he looked at me and asked what I wanted to do. I believe he offered some options, but I have absolutely no recollection of what they were. I do remember what I said. I'm sure that I must have had the deer-in-headlights look as I answered, "I want you to take me to a bar and buy me a shot, neat of course, of their most expensive single-malt scotch. But first I want to buy a pack of cigarettes." To his credit, he didn't question the cigarettes part, I hadn't had one in two years. He just put his arm around my shoulders (come to think of it, he must have had the same deer-in-headlights look as me) and walked with me out of the day of and into the day after.

Yes, so the day after. I went to work. It was a Friday; I remember that because there was a board meeting and the board meetings of the large non-profit where I worked were always on Friday. When I've told that story some people are surprised that I managed not to fall apart and actually managed to get to work that day. Well, what else was I supposed to do? I was the director of finance and we had a board meeting. I had to be there.

The "fall apart" part had to wait until Saturday. But even then, I think I only fell apart for an afternoon. I remember lying in bed and thinking, okay, now you can go for it. And I did, I cried for awhile, maybe an hour. Then I got bored. This isn't to say that I am just oh so together, because I have fallen apart plenty since then, but I do find it interesting how us human types have so many different means of dealing with really sucky news. And god knows I would have plenty of opportunity to learn the extent of those means in the years following the day after.

How Are You Feeling?

One of the things about having a degenerative chronic illness is that people want to be nice, they want to be helpful, but they have absolutely no clue how to go about it.

My favorite is when someone asks the question "how are you feeling?"

Now, I know that the intention behind the question is good, but it leaves me struggling. First of all I have to try and ascertain what it is exactly that person wants to know. Because if you ask that question of an otherwise healthy person who has say a cold, well chances are good that they're on the upswing and can say, "much better today, temperature's almost normal!" You can walk away feeling good; you did a kindness by asking, and you know they're getting better.

But my friend Parkinson's disease isn't going away anytime soon, if ever, so when someone asks me how I'm feeling, I want to say, do you really want to know? And if so, how do you want me to answer, scale of one to ten maybe? Or shall I tell you what my own monitoring system told me today; balance seems a bit worse, slept pretty well last night though, my tremor is a little better, but last night it was really bad, all in all, I'd say I come in around a 5.3., and it'd be a little higher except for the German judge.

The answer that I really want to give is – "well, you see I have a degenerative illness, so the best way I can answer that is to say, I am worse today than I was a month ago and better than I'll be a year from now. "

I have a friend who has never asked me how I was feeling. But she brought it up once, saying that she wanted to be sure I understood the reason why she hadn't. She said, "even though I don't ask, I certainly think about it a lot, but I figure that when you have something you want to share with me, that you will. Is that the right thing?" I looked at her and said, "that is just the right thing."

Back to Work!

I said “fuck you” to God last night.

Yes, I did and I know that some of you will think “you did what?” picturing hailstones and locusts, while others will think “eh’, so what?”

But I was raised Lutheran, and in spite of growing up in California there has never been any doubt in my mind that I come from Midwest stock, and we simply don’t say “fuck you” to God. So the California Berkeley-ish part of me and the Norwegian, German, Midwestern part of me are currently engaged in an epic battle over the severity of this infraction. While they duke it out (and don’t worry about who wins, I’ll most definitely keep you apprised), why don’t I tell you the reason I told God to fuck off last night.

Here’s the rub; first I have to give you a bit of back story. Nine years ago I walked into Beth Israel Medical Center in Manhattan as Angela, and walked out a couple of hours later as Angela who has Parkinson’s disease. I was 39. You may be thinking, ah, there’s the reason she said fuck you to God last night. But it has never occurred to me to blame God for this. I never think, why me, because, well why not me? And, in the greater scheme of things, the fact that I have Parkinson’s disease does not come anywhere close to the top ten of really bad things in the world. That, of course, doesn’t mean that in my little world, it isn’t a big deal, because it most assuredly is.

So, let’s keep this narrative moving. I get this diagnosis of Parkinson's disease and suddenly I am different; my old life is over and the course of my new life is quite uncertain. Fast forward to nine years later I finally have to accept the reality that I am no longer capable of keeping a traditional full-time job, complete with all of the stressful things that come with it. So, I make the decision that it's time for me to leave. The decision itself is actually not all that difficult, because really it has already been made for me. The real issue is facing and accepting the reality of my situation. (Still not the part where I say fuck you to God.) But facing that reality isn’t even the hardest thing either. Because the work that I was doing in my previous life was never my passion. And even though there are obviously plenty of reasons to be upset about my situation, I actually feel blessed. Because there is something that I am truly passionate about. You see, the thing that I most love to do, the thing that I feel called to do, is to write. And now, I obviously have plenty of free time available. Ha.

Leaving for a moment the Hallmark portion of our heroine’s story, we come to the place where the rubber meets the road. Because now I’m trying to figure out a way to make this work financially. Good luck right? I have depleted most of my savings during my last foray into the world of freelancing, I don’t live with a partner, our government in all its wisdom tells folks that they’re on their own in the health insurance department, and let’s not even go to the worst economy in God’s own age. I tell you these things not for sympathy and I certainly am well aware that I am far from the only person struggling with these issues. The reason I tell you these things is that we are now getting very close to the part where I say fuck you to God.

I have been writing, but not as much as I want to and need to, and more importantly, I have studiously been avoiding writing about having a chronic illness. And this is horribly unacceptable to me. Because I have a book that I need to write and I’m not writing it. An artist friend said to me last night that between his art, his family obligations, and the work he does to pay the bills, he has very little extra time to spare. So he is very particular about who and what he is willing to spend that time on. He said that every moment he hears the clock ticking. I told him that I needed to take a lesson from him and buy a louder clock.

So last night, I’m thinking about the future. Notice the use of the word “the” and not “my” future. One very valuable personality trait I have is that I don’t look terribly far into the future, nice when you have a degenerative chronic illness. But last night I started trying to picture a cool little future for myself and as I broke into sobs, I realized that yes I am good at not looking too far in the future, so good in fact that unbeknownst to me (why should I tell me of all people) I had not only shut that door on the future but sealed it, piled a bunch of boulders in front of it, and just for good measure, dumped a nice layer of cement on top. That was the moment that it hit me that I don’t believe that I have a future, or rather I don’t have a future that includes anything to write home about.

Well, so the tears are flowing and you know that is always a good time to root around even deeper in those painful areas that we normally like to keep locked away in a safe place. And, to keep you up-to-date on the whole “fuck you to god” thing, we are very close.

So yes, here I am veering perilously close to the edge of what I like to call my downward spiral of doom. And while I do my best to stay very far from that place, sometimes you just gotta go there. So I start thinking about my scary financial situation, and I send out this thought to God (see I don’t do the traditional prayer thing, I prefer conversations) asking, okay, if this is indeed what I am called to do, then why am I living so close to the edge of financial doom? And my buddy God says to me, loud and clear – you need to write. And, seeing as how you’re so good at putting off the painful things, perhaps you need a little more fire under your ass (my God also has no problems using the vernacular).

Okay, I reply, but I am doing that. Writing. And God says, yes that’s all well and good, and good job by the way on that last story you wrote, (in my experience God’s a pretty decent kind of person), BUT.

Why does there always have to be a but?

But, you are not writing about what you need to be writing. You need to do that, you want to do that and you will do that. Take as much time as you need, seeing as how you’ve got all of this money in the bank and the luxury of time (my God is also a bit of a smart-ass).

And this, dear reader, this is where I told God to fuck off. So far I haven’t been smoted. But I do hate it when he’s right. And he is right, because what I need to do is becoming clearer to me. I don’t know exactly how it will manifest, but I know that I need to be a voice in and for the body of souls out there who are dealing with chronic illness and realizing how fucking difficult it is to manage and also how it also brings these amazing blessings. What an incredibly lengthy way to make my announcement that this will be the focus of my blog from now on. Yes, the joys of living with a chronic illness. I hope that you, dear reader will join me for the ride.

P.S. As God and I finished our conversation last night, he said, no worries about the fuck you, I’ve heard a lot worse.