It takes a lot more than a village to help people without basic health care coverage.
Bingo games, benefit performances, clothing sales, silent auctions. For several years now, that's how I and a whole bunch of other folks have been helping a friend cover the costs of her expensive cancer treatments, and now, at the urging of her doctor, an expensive and promising alternative cancer therapy -- a fermented soy drink called Haelan 951, which its promoters claim helps build the immune system and reverse DNA damage, giving healthy cells a chance at fighting off cancer cells. We're doing about as much as we can to provide a safety net for our friend, because this country's health system can't, or rather, won't give her one. I wish this were an April Fools' joke, but it's not.
Great news! Our friend -- I'll call her Deb -- seems to be responding well to the Haelan 951! Her surgeon confirmed on March 18 that there were no new tumors on her liver, and that previous tumors had either stopped or slowed down in their "whack-a-mole" assault on her liver. As in the surgeon kept whacking them down, but they kept popping back up. But for the first time in this last round -- post-Haelan 951-- our team has gotten a break. WHACK! (BTW, I am not a paid promoter of Haelan 951. I'm merely interested in getting the word out for people who are confronting certain types of cancer.)
As I write this, just after passage of the biggest health care reform the United States has ever seen, I'm appalled at so many things. How we relate to illness. How we've worshiped at the altar of profit in the medical system for far too long. How we've somehow constructed health as a personal and not communal issue.
And this is personal for me, not just theory. I am devoted to my friend, but cancer also impacted my family for over a decade. My darling niece, Ann, had more than her share of suffering before she finally succumbed to the cancer she fought with all her might and resources for 12 years.
Deb's cancer is different from my niece's. However, their journeys have similarities, which I share with you as a cautionary tale. Both Ann and Deb were minimized by their physicians when they first started to complain of ailments that were at odds with their own bodily experiences. Both were told to go away with a dismissive "it's nothing." Both persisted in the face of different levels of resistance on the part of the medical establishment. Neither Deb nor Ann was making their bodily sensations up out of whole cloth.
Reminder: you know your body better than anyone else. If your intuition screams that something is not right, you need to be louder than any expert in the health care system. You are the final expert on your own health.
Many of us have been on this journey with Deb for years. She looks utterly healthy. It makes it unreal for us when we look at her, because our preconceptions of what a cancer patient looks like are turned upside down. But Deb's doctors told her, after many treatments and procedures, that they had run out of options and urged her to pursue nontraditional approaches. So here I am, having financial trouble myself -- as are many members of our community -- and having to create the health care equivalent of a quilting bee or barn-raising ... except it's now life and death, not bedclothes or shelter for livestock. We need to help Deb with the costs of the Haelan 951, a very expensive drink that could make all the difference.
The upside is that we see how much we love Deb, and she really does have a community in an urban area that I would venture to say does not have a reputation for neighborliness. The downside obviously is what the HELL are we doing in this country where it's so darn easy for someone to slip through the health care cracks, or so simple to tell people to ignore weird symptoms?
As of this writing, one out of four Californians are without healthcare coverage. The middle class is hit most squarely. We have to resort to games of chance to raise money so we can save the life of a loved one? Is this OK with you? Really?
Don't get me wrong. I am honored to perform my show as a fundraiser. I'm honored to play a bingo game to buy Deb a drink of Haelan 951. We're doing what we need and know how to do: getting behind a person who needs us.
But what about the people who don't have friends like us, who aren't bold enough to reach out to groups of people with resources? Short of everyone moving to Canada, Norway or England, when are all of us going to insist that we do better by EVERYONE, not just our friends or family? This is personal for all of us. And it's time we become louder and more insistent that we get health care available and accessible for all.
If you want to help save the life of a beautiful and talented woman by playing Bingo with us this Saturday evening in Pasadena, or seeing my show on April 11th in Burbank, click here
Note: This post appears both here (in a slightly updated version) and in my column in the April 1, 2010 issue of the Pasadena Weekly, for which it was written.