Wednesday, August 26, 2009

Returning the favor.

"A friend is a friend
Nothing can change that
Arguments, squabbles
Can't break the contract
That each of you makes
To the death, to the end
Deliver your future
Into the hands of your friend"
- Pete Townshend

There are moments in life when things hit you in the face and make you pause, just for a moment, to consider where you are going and what you expect out of the journey. Sometimes, it's better not to have any expectations and just go with the flow. Sometimes, you just have to fight against it. Sometimes, it's odd being on the outside looking in, when usually, it's the other way around.

Reality has a strange way of being a harsh taskmaster.

I have two friends, one from college, and one that I know from my organ donation/liver disease circle of friends. One is dealing with the sudden appearance of strange symptoms that have left him numb in all his extremities, and exhausts him when he climbs a flight of stairs. The other is in a hospital in Hawaii, and is battling for her life while she awaits a liver transplant. It's a bit of role reversal, as usually I was the one that was either sick or in the hospital.

Scott and I go way back. We met my sophomore year at SUNY Buffalo. We were both on the campus volunteer ambulance, both from the Bronx, (excuse me, he was from Riverdale. They don't consider themselves as being from the Bronx. yeah, right.) I knew almost from the beginning that we would be friends, especially when he made a snippy remark at me, and I responded, rather in a crass manner with a remark about the health of his dog, which I didn't know whether or not he even owned. Let's just say that his comeback stopped me in my tracks.

We've been friends ever since. He's a notorious practical joker, of which he takes great delight in inflicting on me as often as possible. We found that we shared a love of many things, from music to movies, and we hung around in a group of closely knit friends back then. As often happens however, people's lives diverge. He stayed in Buffalo after we graduated, got married a year before I did (I was in his wedding party), had a son, got divorced, and then remarried.

We would go through long stretches of not talking to one another, not because something was wrong, but because life was just getting in the way as well as the distance. We did try to get together when we could when Mrs. N. and I would visit Buffalo to see her family, which was at least twice a year, most years.

Now that we live only an hour apart from each other, we have probably seen each other less in the 10 years I've been here in Rochester than at any other time. Go figure. Still, I was unprepared for the phone call I got from him earlier this week. He told about some odd symptoms he was having, numbness in both extremities, and his extreme fatigue after climbing even one flight of steps. These symptoms started slowly, and after a few weeks of not getting any better, he went to the doc for a series of blood tests and other procedures.

All came up negative. My own former paramedic brain went into overdrive, and and the first thing that came to mind was multiple sclerosis. The docs had pretty much ruled that out he said, but they were going to do a CAT scan anyway to check for the lesions that are typically found with them. His symptoms were atypical for MS, but they were going to explore that avenue anyway. Today however, I got a text message from him that was a little unsettling.

At 6:30 this morning, he had a spinal tap done. It seems that his doc began to put some things together, and suspected that it might be Guillain-Barre Syndrome. I needed a slight refresher on this syndrome, but it all started coming back. It's an autoimmune condition, and there is no real cure, though symptoms can be manged, if it is caught in time. The spinal tap will more or less confirm the diagnosis, as there is no specific test for it, other than the presence of proteins in spinal fluid.

This was a shock, especially knowing Scott as I do. He's a big guy, a little shorter than me, but big, barrel chested and very strong, so to think of him as being debilitated by anything, much less something like this was unthinkable. it has affected his ability to work regularly, but his current place of employment seems to be working with him and supporting him. (He's a nurse for an outpatient program that services people with developmental disabilities, amongst other things.)

We're going to try to get together next week. I'm going to go out to Buffalo and we'll have lunch at his home, on me. I'll bring him some Chinese or Thai food. We've been through a lot together, and he is still one of my best friends. There is actually more going on with him, that has made this situation even worse than it already is, but I'm not at liberty to bring it up here, until he gives me the OK.

Then there's Tammy. Tammy and I met through through a support group for people with liver disease back in 1996. Along with my friend Susan, who died in 2001 while waiting for a second liver transplant after her old liver disease returned unexpectedly, we split away from the original group due to the fact that it was too big, too out of control, and formed a smaller, more intimate and private group. The three of us were the 3 Musketeers in many respects, Tammy from Long Island (at that time), Susan from New Jersey, and me from the Bronx. Susan and I were transplanted within two weeks of one another, while Tammy was newly diagnosed with her autoimmune liver disease and was still pretty healthy at the time. We finally all met face-to-face in November of 1997, a few months after Susan and I were transplanted. We all stayed close, even after I moved to Rochester, and Tammy and her family moved to Austin, Texas.

Tammy had a multitude of issues stemming from the medications she was taking to slow the spread of her particular liver disease. In particular, prednisone was the demon that haunted her an literally made her crazy. Things got to the point a few years ago when she simply stopped taking her meds, unbeknown to her docs at first. This caused a great deal of consternation on the part of the first transplant service she was registered with, and she was labeled "non-compliant," which really wasn't the case. The reality was that the transplant team she was with was not addressing her issue seriously.

She finally wound up getting registered at a major transplant center in Texas, and they did not put her back on prednisone. somewhere about 6-8 months ago, she moved to Hawaii to be closer to her daughter and new granddaughter. She was estranged from her son (long, long story there), and also close with her other daughter, who was still living back in Texas. Along the way she got divorced from a husband that could not deal with her illness, and wound up treating her like garbage, along with the rest of the family.

Flash forward to a few weeks ago. It's now been about 13 years since her original diagnosis, and she is in end stage liver disease. She called me from a hospital in Honolulu, where she almost died from a ruptured esophageal varice. She was stabilized, but it was clear that she needed a TIPS procedure to reduce the varices, and buy her more time to get transplanted.

I was fortunate, in that I never had to go through that procedure, even as sick as I was. For Tammy however, this is the last option. She will die without a transplant, and she almost didn't want it. I had to convince her to go through with it. Why? Because after a transplant, she would be on prednisone for a time, and that just scared the hell out of her. She did not want to go through steroid psychosis again. I reassured her that more than likely, her time on prednisone would be short, as they try to wean transplanted patients off of it as soon as is feasible. I am on small doses of it for life, due to the nature of the liver disease that I had. It helps keep my old disease away, which is fine with me.

She had the procedure this past Monday, and it seemed to go well. Now, it's all up to the wheel of fortune for her, and her own will to hang on until she can get transplanted.

It's strange being on the outside looking in. They both were there for me, so now it's my turn to return the favor.

UPDATE: Scott's spinal tap came up positive, so now they're deciding on the best course of treatment for him Keep your fingers crossed.

Monday, August 17, 2009

Partying like it's 1959...

Time to play catch-up. I've been partly lazy, partly just too busy to sit down and blog, though I really wanted to. So, I will try to encapsulate the last week or so without boring you to tears with innocuous details.

Mrs. N. threw me the party to celebrate my coming of (old) age. We had to do it about 10 days after my real birthday, due to conflicts with my family being able to travel to Rochester sooner. My brother and his family were moving to a new apartment earlier that week, so he was knee deep in packing around the time of my actual birthday. My mom was traveling with them to here, so she had to wait to come up as well.

They arrived later than was expected on Friday, so unfortunately my time with them wound up being limited, as they had to leave on Sunday morning. My in-laws arrived earlier in the week from Florida, and were staying with us. Now, I like my in-laws; no, really I do. Seriously. It's just that having them there for a week, things get a little claustrophobic for me. However, since Mrs. N. only gets to see them twice a year, I would never ask for their visits to be shorter. It does take a little mental adjustment on my part to deal with four people in a house instead of two - all using one bathroom.

What was especially nice was seeing my niece, my brother's daughter, as it had been a bit since I saw her last. She just turned 12, and our birthday's are two days apart, and she was born 36 hours prior to my liver transplant, so we celebrate those milestones together when we can. She is also now up to my shoulders, and that is a little frightening.

So, we come to the party. Yes, it was what I expected. I was a walking target, and was not disappointed at the slings and arrows of outrageous fortune thrown at me. Turning 50 is different than turning 40. Turning 40 for me was somewhat subdued in the abuse department, as just two years earlier it was doubtful as to whether or not I was going to make it to 40. I think that this was making up for lost time.

My brother came armed with a box full of things that every 50 year old sure have: a bottle of Ensure, Depends, and other goodies designed to drive home the fact that I am now AARP material. He also made me choke up with a speech on how 12 years ago, "we almost lost him."

He's a good kid brother, let me tell you. My 12 year-old niece Donna Rose gave me a handmade card that she was very proud of and that I was very touched by.

Mrs. N. took it a step further and used her painting abilities to make me an over sized AARP membership card. Think about the "big checks" that they give people and organizations at special events and you'll get the idea. I knew I should have never let her take painting lessons.

However, I have to hand it to both my sister-in-laws, and my niece Michelle for they topped both of them. My one SIL went so far as to write a poem for me, which was hilarious, and coincided with the presentation of a cane with a rear view mirror and a bell. Very ingenious. Michelle gave me a card that I have to say, was nothing short of genius. It was made up of pennies from each year from 1959-2009, arranged in rows, with certain ones marked off with events that happened that year. 1977, when I graduated high school, 1987, when I started working in Brooklyn, 1985, when I graduated college, 1997, when I got transplanted, 1989, when I got married, etc. I was totally floored by that.

I also got some very nice actual gifts, including the second season of Saturday Night Live, as well as Battlestar Galactica - Season 4.5. All in all, it was a very nice party.

Now, I also did my first improv show last Saturday, and it went well. Michelle and her boyfriend came in from Buffalo to see it. I have to say that I have not been that nervous for a show in quite some time. it was only after I got my first big laugh (thankfully, right at the beginning of the first routine) that I was able to settle down. The way this show worked was that we were paired off in 3 teams of 3 improvisers, and each team had 23 minutes over the course of the evening to perform 4 different routines, hence the name of the show, "Catch-23." We came in second, but the points don't really matter anyway. It was good to get that first show under my belt, and all in all, I was pretty happy with it.

More to blog about later, especially the big benefit show for the organ tranplant program we're doing over the next 2 weekends.

Thursday, August 6, 2009

I'm ready for my close-up, Mr DeMille...

It's official: On August 15th, a week from this Saturday, I will be performing in my first show with the Village Idiots Improv company. I've been rehearsing with them for a few months, and the artistic director feels I'm ready to go. I feel good about what I have learned so far, and have been able to use my experience as an actor to move forward at a faster pace than someone without any stage experience at all.

It is a very small space they perform in, holding maybe 35 people at maximum. This translates into being very up close and personal with your audience, but in the world of improv, that's not a bad thing. The rehearsals double as an improv class, where one is taught the mechanics of improv, and if you're already an actor as I am, learning more tools to add to your artistic tool box. If you're interested, this is their website, though I have posted it before:

On the flip side, I auditioned last Monday for a play and sadly, was not cast. It was something I wanted very badly, as it was "Speed-the-Plow" by David Mamet, my favorite playwright.
I acted in one of his earlier works once before, 'The Water Engine," and Speed-the-Plow, along with "Glenngarry, Glen Ross," and "American Buffalo," are considered three of his masterworks. His style of dialog, known as "Mamet-speak," is very different from other standard play constructions - and very hard to get down right. Why? Because he writes dialog the way people speak, with a lot of stattico (sp?) delivery, and overlapping conversations. Many of his plays are also known for his liberal use of four-letter words, and for his examination of men's themes. He has been criticized for not developing his female characters very well, tending to stereotype them. His works however, are undeniably powerful.

While not being cast, I have to say that there was a great deal of competition. The play is a three person piece, two men, one woman. There was a large turnout for this, as was expected. I know I did well, as I was kept to the very end, and was not sent home early. I also know I did well by the compliments I got from the artistic director of the theatre, (which is not the one I work with, and do PR for) and the director, and the stage manager, all of whom I know well. The stage manager (who is an actor as well, and with whom I have acted on stage with) sent me a very nice note:

"Always good to see you, and congratulations on a very strong read. We were all impressed by how well you worked with the Mamet-speak."

Directors however have a tough job. They have to go with their gut when they cast a show, and see what they think the best fit is. Having directed in the past, I understand this all too well. I'm just glad I made a good showing of things, and oh well, on the to the next theatrical conquest.

Tuesday, August 4, 2009

Just like a car wreck, I can't avert my eyes.

The Hermit Kingdom. The Kingdom of Saudi Arabia. The Persian Empire. Respectively, they are North Korea, Saudi Arabia, and Iran. What do they all have in common? A fascination for me, as these societies are so very insular, and in the case of North Korea, completely closed off to much of the world. I can't say exactly where, when or how this fascination with these societies began, but I can trace its roots.

In 1980, my grandmother's brother, his wife, their daughter and her husband and their children immigrated to the U.S. from what is now the independent state of Moldova. Moldova has been traditionally part of Romania, and like many places in what was the sphere of influence of the Soviet Union, it would often trade hands as to who actually laid claim to them from time-to-time. They came here during the outpouring of Jews from Soviet Union, and they provided me with a first hand account of life in a country that up until then, was only something I read about in books or in the newspaper.

Listening to my relatives' accounts of lines for just about everything from food, to shoes, to toilet paper, to how private property was unknown, and how fear of the KGB or even your neighbor was a daily fact of life there opened up my eyes to just how lucky I was to be living here in the U.S.. Despite whatever failings we have as a nation, we still had far more opportunity and better living conditions than what they faced there.

When I stop to think about it, this is probably where the seeds of my interest in societies that are far less open than our own began. At the top of the list is North Korea. The nickname "The Hermit Kingdom" is as accurate as it gets by all accounts. I won't bore you with a history lesson, as there are many places on the web for you to look up the basic facts about North Korea. Of course, it has been in the news of late; nuclear tests, misslie tests, two American journalists being arrested, tried and sentenced for "espionage."

It's people live with single minded devotion to the "Dear Leader," the wine loving, movie obsessed, all powerful Kim Jong Il. Inheriting his post from his father, Kim Il Sung, he has continued the cult of personality that has effectively kept its people in a form of mental slavery, and has cut them off from all outside influences that, in his view, would taint the spirit of the revolution he father began back in the 1940's. As Hitler did, he uses propaganda in such a way that the cult of personality he has developed invades every aspect of a typical North Korean's everyday life.

As a Westerner, and perhaps even more so as an American, it is difficult, if not downright impossible to grasp living under the rule of such a totalitarian regime. They have substituted a godhead for God in the form of both Kim Il Sung and Kim Jong Il, and have effectively turned worshiping the state and its leaders into their form of a church. Their idea of what constitutes cultures is limited to music, plays, and other art forms that solely cover anything and anyone related to the "revolution."

Now, it is true that this is my own take on things, and I glean this information more from things I have read or viewed, rather than personal experience. That said, I present two videos that I think can back me up quite well:

These are two favorites, but they offer a far greater glimpse into life there than you will find on an American media outlet.

I sometimes wonder how interesting it would be to see and experience the reaction of the average North Korean citizen to coming here for the first time. They have been spoon fed a pablum of propaganda without the ability to question it, and I wonder how they could cope with learning how much of what has been shoved down their throats are lies. Yes, we have our own varieties of propaganda here in the U.S., as all countries do. Here however, we have the freedom to disbelieve it, question it, and debunk it. Try that over in the DPRK, and you end up in a labor camp or dead. The tales I have read from those who have escaped from north of the 38th parallel only seem to drive home that fact. I still however, find myself gulping down any and all information that comes my way. If nothing else, it drives home the message tp be thankful for what you have, especially the ability to question why and how you have it.

Saturday, August 1, 2009


12 years ago today, a family made an incredibly brave decision and donated their 17 year-old's organs so that 5 other people could live. I was one of those 5 people, receiving that boy's liver. While I've never met them, I am, and will be forever grateful for their incredible generosity in a time of unimaginable grief.

Donate Life: "Don't Take You Organs To Heaven: Heaven Knows We Need Them Here."