"Five Hundred Twenty-Five Thousand Six Hundred Minutes"

"Five Hundred Twenty-Five Thousand Six Hundred Minutes,
How do you measure- Measure a Year…….
Five Hundred Twenty-Five Thousand Six Hundred Minutes,
How Do You Measure - A Year In The Life?"

The play: RENT Song: Seasons Of Love

How does one measure a year, how does one know that you are living life to its fullest. I did see this play on Broadway a number of years ago and fell in love with it as I could certainly identify with quite a few elements of the show. Being a gay man, diagnosed with AIDS, having lost my first lover (of 10 years) of AIDS as well as many friends, episodes of fighting my own demons of drinking, etc., and struggling to find my own path or journey in life; I could and still can identify with many elements of this play. This truly was a remarkable play that pulls the audience into the desperate and the disparate but yet similar lives of its players.
Now that there are so many treatments for AIDS, a number of us have become long term survivors. For those who have become infected with HIV or diagnosed with AIDS have a much higher chance of being long term survivors and living pretty normal lives. This should not change our perspective of the danger this disease presents and the impact it makes on peoples’ lives. Globally, there are many who do not have access to the treatments available today that I have benefitted from. This disease is still ravaging the lives of people all over the world, including here in the USA. Research and application of treatments and disease prevention still needs to remain a top priority (among many priorities) we have today.
I have been blessed in being a long term survivor, and now suffer with another health challenge of a weak enlarged heart with cardiomyopathy. As with other long term AIDS survivors, other ailments of growing older come into play. The effect of living for years with AIDS, taking the various medications (often times somewhat toxic), does take its toll on the body and emotions. In particular: the liver, kidneys, and the heart.
For me, my cardiomyopathy has grown to advanced stage heart failure. I have been fortunate that treatment with an LVAD to support my heart has allowed my life to continue. Just recently I celebrated my one year anniversary with the LVAD implant and it does make me reflect on the fact that my life has been extended by over a year at this time, provided I am measuring it by time in the traditional sense. But, there are so many other dimensions to living or being alive.
As Rent just did its final performance on Broadway, it surely has been a tribute to not only the writer/composer, Jonathan Larson (who unfortunately died of an undiagnosed aortic aneurysm the night before the show opened), but to all people who have faced the adversities of life. It is a challenge for those who have AIDS, as well as anyone who faces a life altering disease; to unravel how to survive. Finding the inspiration or motivation to pursue life can takes on a very different effort. It takes more than just going with the flow. It means taking the journey of life with a different set of “wheels”.
The basic principles of living are the same just as two different vehicles generally operate the same; but it is different. For me it has made the difference of life verses almost certain death. Living with LVAD has been an adjustment. Besides the daily routine stuff that has been added to my life, it is something that I am always and constantly aware of. Feeling it beat in my chest far harder than my own heart ever beat. Listening to the wispy sound it makes through the exit tube filter outside my abdomen also serves as a constant reminder as well. Some find the sounds soothing and serve to remind them that they are alive. I guess that also could be said of the heart rate monitor when you are in the hospital. At times it still seems to be somewhat of an intrusion.
There will never be the quiet of the night or the golden silence achieved during in meditation. One’s mind or my mind anyway, is always running in a dual modality. One is whatever I might normally be thinking about. But the second is listening to the various sounds associated with the LVAD. Do they all seem normal? Is there any irregularity that I should be noticing? Should I be anxious, or can I relax that all is indeed OK and the LVAD will continue doing the job it supposed to.
“Can I get on a ladder to change a light bulb?”
“Is it OK to do this when I am alone?”
“Do I have sufficient batteries for the activity or trip I am about to take? How long will I be gone? What chance is there that my trip my take longer than planned?”
“Will the battery alarm go off at an inconvenient time (like at the movies, or in a theatre, or the symphony hall?” I have been chastised for the noise it makes even without the battery alarm! It does make me think twice about some things, but then I don’t want to give up these activities either.
A lot of the time I can shut this out, but those thoughts always seem to be running through the back of my mind. I will admit I do spend a lot of time at home. Sometimes it is just because it is easier or finances are tight. Other times I do want to get out but can’t decide what to do or don’t want to do it by myself. I guess there are lots of things I could do.
I could shop, but I don’t particularly like to just shop around unless there is something I need. Even when there is something I need, often times it is something I can get on the internet just as easily, at a better price, and not have to waste the gas.
Well I won’t bore you with my dribble any longer; I actually have a date for lunch. I am actually getting out of the house for awhile! It will be so nice.
So on to my journey of life,
Namasté