political satirist Barry Crimmins

My life as a guinea pig

My life as a guinea pig
I'm a lucky man. Compared to many of my fellow humans, I've had it pretty easy .

I don't live in the middle of a war. I'm not a political prisoner. I'm not being subjected to torture. I have somewhere safe, warm and comfortable to sleep. I live surrounded by remarkable natural beauty. I'm blessed with the unswerving love of a wonderful woman. I have more dear friends than even a greedy man could hope for. I've lived my life as a free man and used my freedom to pursue what I deemed important. I've worked very hard but almost always at things I wanted to do. I've traveled far and wide, met amazing people and seen a world of wonder as well as a planet of pain. I've had a lifetime of laughter, with the laughs often provided by some of the funniest people in the world. Sometimes the laughter has been just for laughs but very often it's been the kind that comes with lucidity and resistance to evil.

No matter what happens from here on out, my life has not been wasted. I've left a trail that, if examined, could provide others with some positive information as well as some specific instructions concerning just what not to do or try.

All in all, I have more than I'd ever dared ask for.

Except for my health. I've been sick for years. I have an insidious disease called Hepatitis-C. I got it when I jabbed myself destroying needles that had been used for intravenous drug use by someone I cared for. This happened around 32 years ago. The disease went undetected for a long time. When it was finally diagnosed the treatment I received made me wish that I had never learned of my illness. I was put on a course of Interferon. It was absolutely brutal. What made it worse was the medical establishment treated me like a junkie. This pissed me off because I don't think even junkies should be treated like junkies. In my experience, when you're being treated for Hep-C, the doctors and even a lot of nurses treat you like shit. You get the short shrift. They treat you as if you deserve to be ill.  About halfway through six months of Interferon, I complained of depression ( a major side effect of the drug). I was told that because Hep-C victims had drug problems, they would not prescribe any antidepressants. But they decided perhaps my problem was that my 'levels were off" and they doubled my dose. In retrospect I feel that they decided to prohibit further complaints by rendering me completely unable to defend myself. I went into paralytic depression. I nearly died. Ask anyone who knew me back then. Somehow I pushed through and completed the course of experimental medication, increased dosage and all. No joke, I consider my experience playing football during the Lombardi era as what kept me from not just killing myself. I had plumbed the depths of my endurance and learned I could get through a lot.

As soon as I ended the treatment, I began to get better. Like hitting oneself in the head with the proverbial mallet, it felt so good when it stopped. I hardened against western medicine and instead switched to some homeopathic treatments. Since then I have regularly ingested things like milk thistle, alpha-lipoic acid and selenium. I have also hoped that the treatment I underwent had provided some long-term benefits.  

In the late Nineties, at the insistence of a doctor friend and to appease Karen, I went to see a gastroenterologist in Cleveland. He was a much more decent fellow than the other sawbones I had dealt with. He convinced me that they had figured out Interferon, that no one would ever again receive the dose I had suffered through and that antidepressants were mandatory with use. He set me up to be part of a new medical test. Soon I had to start dealing with other medical personnel who reverted to form and began to treat me like I was a deservedly ill junkie. I put up with it because I respected the doctor who was going to provide my primary care during this ordeal.

I was scheduled for a liver biopsy at Metro-General Hospital. Early on a rainy morning, Karen dropped me off and went to her law office. She would pick me up at 2 PM. I went through all the bureaucratic rigamarole, was assigned a room and changed out of my clothes and into a hospital gown. A nurse came in to put an IV in my hand. She hit some sort of nerve cluster and I had to say something. She said, "well it doesn't matter anyway, they'll be giving you a tranquilizer."

I said, "well great, then I can be really calm about the horrible pain in my hand!"

She turned and walked out of the room. Unbelievable. Eventually I found a position that limited the electric jolts that shot up my arm but the needle caused a great deal of pain the entire time it was in my hand. I now knew I was making a big mistake. About forty minutes later a nurse came in. From what she said, she wasn't really with the hospital, she was with the drug company. She told me that there "could be a change in plans." Then she promised to return with the doctor.

When she came back, the doctor wasn't with her. She told me that the drug company was canceling the test but that they'd still like to give me the biopsy because it would be helpful if they could track me. She left after again promising to return with the doctor.

The next time the doctor preceded her into the room.  He was clearly annoyed. He told me that the drug company had managed to wangle the government into skipping a final round of tests for this type of treatment. He'd just found out or he'd have informed me sooner. He apologized and then had to leave to continue breaking the news to others. Before departing he reiterated that I had a choice about whether or not to go through with the biopsy.

A few minutes later the Big Pharma nurse returned. She performed a song and dance about how it would be wise for me to have the liver biopsy that would lead to no treatment. She told me that this was her third day of informing people of the cancellation of the drug trial and so far EVERY patient had decided to go ahead with the biopsy. She told me it would be good for me to be "tracked."

I thanked her for her advice and said. "You've really helped me make up my mind. I was seriously considering getting the biopsy before you came back in. But now that I've heard that not one person has said, enough is enough, I don't want to be a dead person in a pool of untreated patients for you to use to sell more of your awful drug to people. Someone has to tell you NO! Someone has to ruin your perfect record of cowing compromised people into being test subjects with no hope of benefit. Someone has to tell you that even though I'm here naked under this flimsy gown I still have enough self-respect to tell you to fuck off. BUT FIRST GET THIS FUCKING NEEDLE OUT OF MY HAND. I COMPLAINED ABOUT IT AN HOUR AND A HALF AGO ! NO ONE SEEMED INTERESTED IN TRACKING MY PAIN!"

She complied but her work wasn't easy because I was vibrating with anger.

I dressed and left the hospital without being discharged. Screw them and their procedures. And screw the doctor I thought was a good guy. He had to have known of this change for at least a few days but he didn't see fit to offer me the chance to be spared all the indignity I suffered that morning.

It was raining like hell when I left that hospital. Karen was tied up in court and didn't expect me to be out for hours.  I had no money on me and even if I did, I'd have never have gotten a cab-- they almost never ventured to that part of town in good weather. I walked through Cleveland's poorest neighborhood in the downpour. The awful circumstances of the ghetto were a perfect match for the awful treatment I'd received from a slimy, profiteering health care system. I managed smiles and kind words for everyone I passed. I was a white guy but I knew what it felt like to be treated like I didn't matter. The friendly replies I received gave me the impetus required to walk the several miles to our apartment.

I seethe when I think of that day and a few more that have come since then. They have a lot to do with why I haven't been writing much lately. When it comes to health, I have almost nothing.

PART TWO

I decided not to live in fear and moved on with my life. The homeopathic stuff and relatively clean country living kept me in OK shape until last year.

In June of 2006 I got screwed out of my job at Air America Radio. If that story is ever told, it will probably be done in a pay-per-view format. I really got to see the crappy, cowardly side of certain people who act as if they are the Great Spirit's gift to humanity. Good Riddance!

Well, philosophical good riddance anyway. The truth is it hit me hard because I had done outstanding work for that network in the face of almost insurmountable odds. So while I kept up a brave front, the loss of my gig laid me low.

In early autumn A. Whitney Brown found me a gig working for some maniac who was going to reinvent the internet. The job was in New Jersey. Thirty seconds into the first meeting we knew it was a doomed enterprise. But the checks cleared so I drove the five hours down there every week to work long hours creating an infrastructure and content for a website that ended up being going live on the web for less than one week. The commute was killing me and then I started getting sick. I got every flu, cold and bronchial and intestinal complaint there is during my several weeks on that silly job. I was growing increasingly sicker by the day. On weekends I would come home and just lie down and stay in bed until I had to drive back to my stupid job very early Monday morning. Eventually I couldn't answer the bell. By this time last year, I had to quit. Of course I could have done my work from here but the nut who ran the place wanted to see me while I was writing. Otherwise he'd have had to learn t read.

I was relieved to be home with Karen and Lloyd. The only problem was I kept getting sicker. Eventually I had pneumonia. I had been going the local walk-in clinic, paying retail for health care. They dosed me with so many different kinds of antibiotics that my digestive track revolted, I had no 'good' bacteria left in me. I began to believe that I would soon be dead. If not for Karen and Lloyd, I wouldn't have cared. When you are constantly racked with illness and doctors seem only able to take your money while making you sicker, quality of life becomes an issue.

Finally I went to a doctor who did blood tests and it turned out I had contracted Hepatitis-B. I was going through the entire alphabet of hepatic ruination.

The doctor, who had come highly recommended, said, "It turns out you really are sick." And then outside of offering some homeopathic advice that was prehistoric compared to what I already knew- she showed me the door. But only after grilling me about my "drug use." This was really maddening since you can get Hep-B in a million ways, most of which are no fun and available at New Jersey diners and hotel rooms. In all likelihood some some literal piece of Garden State crap took me down.

It was only after my illness struck that I'd learned there was a vaccine to prevent Hep-B. Where was ((that)) public service announcement when I needed it? IYou can get t for free almost anywhere (one shot a week for three weeks). I suggest getting it before planning any high-risk behavior, like eating in New Jersey.

So I was again left for dead by American medicine -- the greatest healthcare system in the world! I haven't been back to an American doctor since I got the news. A strict and amped up regime of liver restorative herbs have helped me slowly recover. In April I went out on a little test tour and came home absolutely wiped out. That's when I had to decide to quit performing. As the year passed, I got slightly better but I'm usually in at least some pain and rarely have enough energy to do anything close to what I used to accomplish. In the last month, I really began to fail. A friend suggested a new remedy that has seemed to hold the line but I am never well. It's really a drag. I have so much I want to do. Ack!

Along the way my old and dear friend Bobcat Goldthwait came up with a project for me to work on. I'm trying like hell to get it done but it's very hard to be productive. Still, I'm working around my chronic illness and chipping away at the task as best I can. Thankfully, it's shaping up better than I could have hoped.

So I'm hanging in there. If I am less prolific in this space than you've come to expect, I trust you'll understand. I'm just sick in the wrong country at the wrong time.

Now you know.

ADD COMMENT

pabloThursday, December 27th 2007 10:19PM

I work at Metro in Cleveland.  Far from being a part of the "a slimy, profiteering health care system" we are a county hospital that accepts ALL patients regardless of ability to pay, and i've never seen staff there treat any patient discourteously or disrespectfully.

Molly IvorsSunday, December 23rd 2007 8:21AM

Barry,
I'm so sorry to hear about your experience. My sister died in 17 of Hep C, primarily because she was poor, and the Medicaid doctor who treated her said "You let me know if it bothers you." But she was a young mother with a houseload of kids, busting her ass to get off PA (ah the golden days of welfare reform!)  and by the time she realized she was sick, it was far too late.

She died at the University of Pittsburgh, because she had been accepted into their transplant prgram right about the time her other systems started shutting down.

It had never occurred to me that her crappy treatment might have been based on assumptions about how she got the disease, so I thank you for that added piece of context.

PSPamSaturday, December 22nd 2007 11:08PM

Just ran across your blog.    Sorry to welcome you to *our club* but it sadly isn't very exclusive.  Only about 1 million of us know though that we have Hepatitis C.    There are at least 4 million others walking around with it that don't know and most don't even have any symptoms.   I try to encourage everyone to KNOW THEIR HEPATITIS C STATUS and TO GET TESTED even if they don't have one of these risk factors:

* received a blood transfusion or solid organ transplant before July 1992
* were notified that you received blood from a donor who later tested positive for hepatitis C.
* have ever injected illegal drugs, even if you experimented only one time many years ago (or snorted any drugs)
* were a recipient of clotting factor(s) made before 1987
* have ever been on long-term kidney dialysis
* have had tattoos or body piercings
* had sexual activity that involved contact with blood
* have had vaccinations administered with pneumatic jet injectors
* are a veteran (especially Viet Nam)
* have shared razors, toothbrushes, nail clippers, tweezers, etc. with an infected person
* are a health care worker exposed to needle sticks or first responders
* have ever been incarcerated
* also about 5% of babies born to infected mothers will get Hepatitis C

Sorry to read about all the problems you have had.   Most of us have had experiences similar to yours.   Medicine has gone downhill since I started in the field in the mid 60's.  Cirrhosis here, diagnosed in 1997, had no real symptoms and was quite shocked,  treatment failed me in 1999, also doing a great many herbs and I can completely relate to NO ENERGY!  

Take care!

Peace
Pam

ADD COMMENT

Uncle CharlieWednesday, December 19th 2007 11:47AM

Are you sure that's a Hep-C model?
It looks more like some type of candy from Mr Bobos Magical Kingdom. I think I saw ithe being sold on QVC last night.
"...while visions of Hepititis-C models danced in their heads."