superkat
Premium Member
As some of you know, I have a very rare disease called Takayasu's Arteritis. In fact, I'm the longest living survivor of this bizarre thing that is registered with NORD (The National Orginization of Rare Diseases). It has no cure, and is considered terminal...unless you get lucky...or just happen to be SO STUBBORN that you don't let it get you. I think I am probably both. I was diagnosed with it shortly after open heart surgery in April of 1996. Technically, I should have died in 1998, but because of an intense regieme of chemotherapy they were able to stop the progression until 2001. And then it got very bad. At that point, they had tried everything to keep it at bay, but eventually, it regained a foothold on my internal blood system and they gave me 2 years. One good, one bad. Chemo stopped, thank God, because at 5' 8", 112lbs was not the least bit healthy and I had zero energy. This is not as important as what I'm about to share.
RENT, the musical I am working on right now, opened at the Nederlander Theater in NYC on April 29th, 1996. It is based on Puccini's Opera, La Boheme, but TB was replaced by AIDs. Now, I did not have AIDS, but I did have an immune system disorder...although TA is the EXACT opposite of AIDs. Instead of having an immune deficiency, my immune system was over active. The reality of TA is that your own immune system believes that your arteries, specifically the ones coming from the heart, including the aorta, are an infection, and your body sends out the word to get rid of it. My artificial aortic valve was the result of the tissue being eaten by my own white blood cells. So....when i went to see RENT, I had no idea on how much of what was being acted out on stage would relate to my own struggle with a terminal illness. RENT changed my life.
There is part of one song that states, "to people LIVING WITH, not DYING FROM disease." And clearly drove home that everyone, regardless of their health should live their lives with the mindset that there is, "no day but today".
It taught me to forget regret, or life was mine to miss...and that you should measure your life in love. There are 525,600 minutes in one year. And each one of those minutes should be spent wisely and not thrown away.
For the next 14 years following my first attendance to the broadway production, RENT became THE REASON for going to NYC. I can't tell you how many times I have seen the production, for honestly, i've lost count.
This will be the second time I have been fortunate enough to stage manage this show. And now that we are in the theater, and we are running it, scheduled to open on July 17th (btw, the cast and crew will be in the Gay Pride parade that day), all of the emotions are resurfacing...and along with that...the absolute NEED to refocus my life and start living the way I did before I went into remission. Who knows how long that will last...and I must not forget that life is a gift...one that I often neglect.
There are many many people in my life that are SO VERY IMPORTANT TO ME. Sometimes, I find myself holding back what is in my heart because some people just don't receive gushes of love well. The thing is, THAT IS WHO I AM. And tonight...I decided that I can't hold that back any longer. If we are truly to live and measure our life in love, then the song is TRUE. You must forget regret. I can't control my destiny. My only goal is just to BE.
So...prepare yourselves, my reefer friends. The flood gate has been opened. What a shame it would be if tomorrow i woke up and found that I was where I was in 2001. For an idea of what that was like, let me list:
- my vision was almost gone. I could only see directly in front of me, and I could barely distinguish colors.
- my balance was sporadic. there would be times that i would just fall over with little or no notice.
- i had no sense of touch. i could not understand the word "texture", and could not feel water on my hands.
- i had to sleep sitting up, or i could not breath.
- i had 2 good days a week, where i could actually eat, or get out of bed, the rest of the time was in a chemo induced state of lethargy.
- on those 2 good days, i was getting chemo, or in a doctors office.
- i could not get warm if i was cold, and could not cool down if i was hot.
I can tell you...I was DYING for years...and could feel that every day.
It wasn't until RENT that I started seizing each and every good moment...minute...second...and embracing people, places, things and stopped taking my life for granted.
I've become numb over the last few years. Numb to my own existence. That stops TODAY....RIGHT NOW.
I encourage each of you...if you can...PLEASE COME SEE THIS SHOW if you have never seen it. Come prepared. I have yet to see a dry eye at any performance.
JCC CenterStage, Rochester, NY. Look up the website. Buy a ticket. We will sell out each and every performance.
If nothing else...remember that we have a LIFE that is worth living...and how we live touches those around us in profound ways.
Find one song...a song that rings true...make it your own...and share it.
Peace.
Kat
RENT, the musical I am working on right now, opened at the Nederlander Theater in NYC on April 29th, 1996. It is based on Puccini's Opera, La Boheme, but TB was replaced by AIDs. Now, I did not have AIDS, but I did have an immune system disorder...although TA is the EXACT opposite of AIDs. Instead of having an immune deficiency, my immune system was over active. The reality of TA is that your own immune system believes that your arteries, specifically the ones coming from the heart, including the aorta, are an infection, and your body sends out the word to get rid of it. My artificial aortic valve was the result of the tissue being eaten by my own white blood cells. So....when i went to see RENT, I had no idea on how much of what was being acted out on stage would relate to my own struggle with a terminal illness. RENT changed my life.
There is part of one song that states, "to people LIVING WITH, not DYING FROM disease." And clearly drove home that everyone, regardless of their health should live their lives with the mindset that there is, "no day but today".
It taught me to forget regret, or life was mine to miss...and that you should measure your life in love. There are 525,600 minutes in one year. And each one of those minutes should be spent wisely and not thrown away.
For the next 14 years following my first attendance to the broadway production, RENT became THE REASON for going to NYC. I can't tell you how many times I have seen the production, for honestly, i've lost count.
This will be the second time I have been fortunate enough to stage manage this show. And now that we are in the theater, and we are running it, scheduled to open on July 17th (btw, the cast and crew will be in the Gay Pride parade that day), all of the emotions are resurfacing...and along with that...the absolute NEED to refocus my life and start living the way I did before I went into remission. Who knows how long that will last...and I must not forget that life is a gift...one that I often neglect.
There are many many people in my life that are SO VERY IMPORTANT TO ME. Sometimes, I find myself holding back what is in my heart because some people just don't receive gushes of love well. The thing is, THAT IS WHO I AM. And tonight...I decided that I can't hold that back any longer. If we are truly to live and measure our life in love, then the song is TRUE. You must forget regret. I can't control my destiny. My only goal is just to BE.
So...prepare yourselves, my reefer friends. The flood gate has been opened. What a shame it would be if tomorrow i woke up and found that I was where I was in 2001. For an idea of what that was like, let me list:
- my vision was almost gone. I could only see directly in front of me, and I could barely distinguish colors.
- my balance was sporadic. there would be times that i would just fall over with little or no notice.
- i had no sense of touch. i could not understand the word "texture", and could not feel water on my hands.
- i had to sleep sitting up, or i could not breath.
- i had 2 good days a week, where i could actually eat, or get out of bed, the rest of the time was in a chemo induced state of lethargy.
- on those 2 good days, i was getting chemo, or in a doctors office.
- i could not get warm if i was cold, and could not cool down if i was hot.
I can tell you...I was DYING for years...and could feel that every day.
It wasn't until RENT that I started seizing each and every good moment...minute...second...and embracing people, places, things and stopped taking my life for granted.
I've become numb over the last few years. Numb to my own existence. That stops TODAY....RIGHT NOW.
I encourage each of you...if you can...PLEASE COME SEE THIS SHOW if you have never seen it. Come prepared. I have yet to see a dry eye at any performance.
JCC CenterStage, Rochester, NY. Look up the website. Buy a ticket. We will sell out each and every performance.
If nothing else...remember that we have a LIFE that is worth living...and how we live touches those around us in profound ways.
Find one song...a song that rings true...make it your own...and share it.
Peace.
Kat
