But You LOOK Healthy!

"But you LOOK healthy." People say that to me all the time. Mostly doctors. I smile and say thanks, as if it's some kind of compliment. 

I have Lupus. It's a chronic auto-immune disease with no known cause or cure. The most prevalent symptoms are pain, joint inflammation, fatigue and extreme sensitivity to the sun. There's a bunch of other delightful side effects: http://www.lupusny.org 

I started feeling sick when I was 15 years old. I was diagnosed with Lupus when I was 22. That's seven years of doctors telling me it was growing pains, telling me I just needed a boyfriend, telling me I must be on drugs or in need of a shrink. 

Seven years of negative blood tests and my veins collapsing from the needles. Seven years of struggling to breathe while one doctor after another told me it was all in my head. Seven years of spending most of my time indoors, barely graduating high school, and losing friends one by one because I never went out or returned phone calls. 

In my last year of high school, I walked the six blocks home every day. One block was uphill, and there were days when walking up that little hill felt like a mountain. 

I have been in pain every day of my life for 32 years. It's a cliche, but you get used to it. You make accommodations for the achy legs, the stiff neck, the headaches, the labored breathing. 

There are days when I wish Lupus were more visible...if there were some way of letting people know I'm sick. I might get that seat on the train. For the most part, however, my illness is invisible. I don't walk with a limp, or use a cane or any other assistance. In fact, I walk very quickly. It's more painful to try to walk slowly. And during the day, the less time spent in the sun, the better. 

Having an invisible disease leads a person to feel as if they're hiding something, which leads to its own problems. It's a very awkward thing to bring up in conversation. In my opinion, it's best left unsaid. 

I invite all comments, questions, criticisms, etc. Are you living with an invisible illness? How do you deal with it? Let me know. 

The Waiting Is The Hardest Part

I was in the emergency room at a big city hospital a few years ago for some damage done to my hand. It was a baking hot summer day and the air conditioning was powerful in the waiting room, so it wasn't that hard to sit and relax and wait my turn. 

As with most emergency rooms, there were people there who were clearly contagious and unconcerned about spreading their germs. I sought comfort from the Purell dispenser on the wall more than once. Lethal Weapon was on the TV. It was nice to watch and think back to a time before Mel Gibson became a monster. 

Giving my information to the intake person (are they secretaries, are they nurses?) she said, in an oddly cheerful tone, "We offer a free HIV test, if you're interested. You'd only have to wait ten minutes for the result. Would you like a test today?"

I said yes, partially intrigued by the speed of the test and partially seduced by her salesmanship. 

A lovely woman in business casual attire came over to me with a small plastic cart full of needles and a form. I signed the form and she pricked my finger and got some blood. She smiled and said he results would be ready in a few minutes. 

In the meantime, my hand was looked at, X-rayed and deemed to be fine. I was given a script for pain pills I'd never use, and then sat back down in the waiting room and thought. 

In spite of my age and my allegedly knowing better, this was the first HIV test I'd ever had. I began to review all the contacts I'd had in my life, from the casual to the less casual. 

Intellectually I know it's wrong to assign morality to any of this. A virus does not discriminate. Knowing that did not change my thought pattern. I found myself remembering a certain ill-advised encounter thinking, am I about to pay for that one today? 

I sat there for what felt like an eternity, sweating through the powerful air conditioning, wondering what I would do if the test came back positive. Who would I tell? Who should I tell? Who could I talk to about this? Why had I agreed to take the test in the first place?

The business casual woman walked out through the swinging doors and motioned to me to follow her. We walked into a small room. She closed the door. 

Oh, God. This was it. This was the moment I'd been dreading - the moment I didn't even know I'd be facing twenty minutes ago. 

She handed me a copy of my signed form, smiled and said, "Your results were negative." 

She then launched into a speech about the many resources the hospital had for HIV positive people, said I should get tested on a regular basis and handed me a pamphlet on sexual health. 

I said thank you very much and made a quick break for the exit. I now know she was respecting my privacy by taking me into that small room and closing the door. At the time she couldn't have realized that I felt like I was about to be given a death sentence. 

I walked outside and lived up to every TV movie cliche. I breathed deep. I felt the sun on my face. I marveled at flowers.  I smiled at small children. 

Thankfully this was just a phase, and I returned to normal a few hours later. 

That night, when I threw the pamphlet in the trash and removed the band aid from my finger, I felt giddy, like I had dodged a bullet. 

I'd like to wrap this up in a pretty pink bow of learning my lesson and being more careful in my behavior from then on. But that would be dishonest. It was my first HIV test, and remains my only HIV test. 

Introduction

Jeez. 

I mean really ... a blog? That's a lot of responsibility. I barely remember to feed myself. I've killed every plant I've ever had. And now I start a blog. Maybe I'll have more success with the Internet, and I won't kill anything. But I'm not making any promises ... 

Election rant

We are quickly approaching the presidential election. This election isn't so much the lesser of two evils as the lesser of two lessers. I wish I felt differently. I wish I could work up some enthusiasm for Hillary. I am not inspired or encouraged by the possibility of the first female president. 

I feel like a traitor to my gender, realizing at once how important it is as a female to be united behind another female, and how foolish that is. No one would ever say to a man, "Of course you have to support the male candidate - he's a MAN!"

Most people's early political beliefs are shaped by their parents. My father was resolutely apolitical - admitting only once to admiring John Kennedy, and, when asked, saying his favorite president was Abraham Lincoln. My mother was avowedly liberal and worked to elect Bobby Kennedy. 

In 1979, when I was 10 years old, I remember sitting in front of the TV being utterly inspired by the independent campaign of John Anderson. (Google him as John Anderson 1980) I saw him as a true leader - never having a clue that an independent candidate had about as much chance of being named the nominee as I did. 

The overwhelming (often bewildering) popularity of Ronald Reagan during the 1980s gave me sleepless nights, wondering when he'd feel the impulse to press the button and start World War III. 

The Bush years were just a continuation of the Reagan empire. I remember very clearly watching The Tonight Show with Johnny Carson and hearing Johnny joke, "If President Bush dies, the Secret Service are under orders to kill Dan Quayle."

When I turned 18 and could legally vote for the first time, I took great advantage of it. I voted in every election - local as well as national. I enjoyed the process. Signing the book and going into the little booth behind the curtain, pulling the levers made me feel like I was participating in democracy. 

When Bill Clinton was running for his first term in 1992, I had a button that read: 'Vote For Hillary's Husband' which I wore quite proudly. 

I remember being on the phone with a friend when Bill Clinton won the election in '92. We were literally screaming and crying with joy. 

To be brutally honest, the sexual behavior of the president (of whichever party) has never concerned me. Everyone has it in them to take advantage of their position - why should the president be any different? If I had a choice, I'd much rather the president have 20 affairs than break into an opponents psychiatrists office (Nixon) illegally supply arms to rebels (Reagan) or start a war against a country based on faulty intelligence reports (GWB). 

 

In an ideal world, the first female candidate for president of the United States would be pristine - a golden idol of experience and wisdom. Of course, this is too high a standard for anyone. 

Somewhere along the line, I lost my excitement. I lost the feeling that my vote counted for anything. I started to feel that "democracy" was a cruel hoax - all an illusion. Maybe it's normal that the passing of years have taken my energy and my enthusiasm

Bottom line - this is a contest between a flawed woman with a trail of questions regarding her behavior, and a dangerously megalomaniacal, xenophobic failed businessman. 

This is not the first election where I've looked at the two candidates and thought, 'Is this really the best we can do?'

I will vote, and, as in previous years, I will hold my nose when I do it.  I so wish I still had the optimism and naïveté of that 10 year old sitting in her living room applauding John Anderson.