"Music is a spiritual expression of what's in your heart. Music as a way of getting rich is a pretty new thing, and I often wonder if the mega-bucks glitzy atmosphere is making the quality of music suffer. You have to work really hard to get around that and remember why you're in it in the first place: because you have to be. It's like an addiction. You can't go a day without picking up your guitar. To me, the only commercial goals that are really valid are, 'Boy, I wish I didn't have to go to work. I wish I could do this all the time." -Trey Anastasio
"Impose rules to make life simpler. Break them to make life more fun." -Jon Fishman
For most of the past week, I've spent each day shuttling back and forth to Presbyterian/St. Luke's hospital. Delivering food. Delivering sweatshirts and hats. Delivering some small measure of comfort, I hope.
I work for an organization dedicated to finding cures for blood-related cancers like leukemia. I'm not a doctor, a nurse, a social worker or a healthcare professional. I'm a fundraiser. I put together events to raise money to fund research for better treatments and cures, and to fund patient services programs that help families from diagnosis, through treatment and hopefully into survivorship.
The vast majority of the time, I absolutely love what I do. Even when I have bad days, I can go to bed knowing that I've made some kind of positive impact on this planet. Today is one of the REALLY bad days, though, and it makes me feel a little bit hopeless.
Today, we said goodbye to one of those people who made the world a better place to live. When he was diagnosed with leukemia, the doctors told him he had maybe two years to live. He made it nearly ten. He's been a huge advocate and a tireless volunteer for my organization. He'd impacted the way medical research happens, and he's made life a little brighter for anyone who has eve known him.
Last summer, we thought he finally got his miracle. He needed a bone marrow transplant, but couldn't find a donor match. So the doctors went for a cord blood stem cell transplant, and a match was finally found in Italy. So my friend became known as the Italian Stallion. He survived the transplant and a couple of subsequent life-threatening infections. He even came back from the brink, recovering from another infection that put him in ICU on a respirator. Most people don't come back from that.
But in the last couple of weeks, another infection got him - this time it was fungal. Because he has virtually no immune system, any little germ can turn deadly. We got good news last week - he was recovering from surgery nicely, they thought the infection was gone, and he was able to come off of dialysis. The man's a fighter, we thought, and he's really going to make it.
The infection came back on Monday, though, with a vengeance. Today, they'll be removing all life support and letting nature take over. My friend is gone. And this really fucking sucks.
I know that the work I do is important... that it really does help people. But the thought that what has happened to my friend happens every ten minutes is almost more than I can handle today. It makes me want to throw my hands up and give up - if what I'm doing couldn't help my friend, then what's the use?
But I know better than that. I see it happen every day. I have to keep going and work as hard as I can until this doesn't happen anymore. As horrible - as absolutely, mind-boggling-ly, abyssmally, gut-wrenchingly horrible - as this is, it ultimately makes me even more determined to raise the money it will take to end these diseases.
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