Monday, August 9, 2004

Ordinary Heroism


graphic is courtesy of www.hermanoleon.org.I have a friend, Joel, who has been politically active all his life.  When he was about thirteen years old, he was hauled into the vice principal's office for wearing a black armband on Moratorium Day.  (The bigger boys who harrassed him about it did not get into trouble.) As an adult, his main cause has been fighting world hunger.  When I visited him in 1990, he was doing this by writing letters, organizing candlelight vigils, and I'm not sure what else.  At one point, Joel's brother was working directly for one of the hunger relief organizations back in the D.C. area.

Joel graciously put me up at his apartment on zero notice in November 1990, when I came to Los Angeles to attend a Quantum Leap panel discussion at UCLA.  As he explained about the work he was doing to try to create a world where children don't have to die of malnutrition, I started feeling defensive.  My big contribution to the world at that point was writing about tv shows for a couple of fanzines I was editing, one of which was six weeks away from publication of its first issue.  I wasn't stopping world hunger.  I wasn't rescuing people from burning buildings, going door to door for favorite candidates, or volunteering at a shelter for homeless people or animals.  I was writing about a couple of tv shows. This may have been a (minor) contribution to the lives of the people who read The Observer and TARDIS Time Lore, and a good match for my talents and interests, but there was little chance that writing about Sam Beckett or the Doctor would save anyone's life, or provide even one meal to a hungry child. But I just wasn't cut out to be a social activist, a person who dedicates her whole life to a cause.  I'm far too shy for that, too adverse to confrontation, and my interests are too fleeting.  What I'm good at is writing, and possibly accounting. If it were up to me to save the world, the world would probably just have to settle for a killer eulogy.

ilaSo when Ila from St. Michael's goes down to Guatamala every year, bringing supplies and skills to displaced Mayans, I'm not in the SUV with her.  When people go to Iraq to help rebuild, at the risk of their own lives, I'm at home blogging.  When people go down to Sells or Naco, and refill water tanks to try to prevent illegal immigrants from dying in the desert, I'm at work listening to reports of still more deaths by dehydration. I'm just not a hero.  Most of the time, I pretty much accept that I don't have the temperament to help save the world.  Other times it bothers me.

Let me tell you about my biggest failure in this regard.  In early 1995, the newly-elected Vice President of the United Whovians of Tucson, Shiori Pluard, was diagnosed with leukemia.  What she needed to save her life was a bone marrow transplant, from a compatible donor other than herself.  Unfortunately, this was virtually impossible to arrange.  Compatibility for such things depends on genetic factors.  Generally, there's about a 30% chance that a relative can help.  Failing that, other people may be able to provide the life-saving liquid marrow, but the chances are better if the patient and prospective donor have similar ethnicity. Shiori was part Japanese, part American Indian, and I forget what else--Irish, I think, or Italian, or both.  She had no siblings.  Her eight-year-old son Maverick wasn't compatible enough, her mother wasn't, and there was little chance that anyone else had her particular recipe of genetic soup. So the doctors harvested her irradiated bone marrow and gave it back to her, not once but twice.  I think she knew it was a long shot, so she wasn't surprised when it didn't work.  When the second one failed, just before Christmas in 1995, she came home from the hospital for a couple of weeks, cooked soup for her son and sort-of-ex husband, and went out with me to look at Christmas decorations around town.  She didn't tell anyone until after New Year's that her early death was now a certainty. 

In some of the many conversations I had with Shiori at two different hospitals over a period of fifteen months, she told me about the National Marrow Donor Program, and about types of blood donation other than the standard stop-by-the-Bloodmobile routine, especially apheresis.  I don't remember much about apheresis, but I think it means harvesting certain blood products and then returning the rest of the blood to the donor. I imagine the donor can give more often this way, and patients can get the specific things they need. 

Registering with the NMDP as a prospective donor involves a screening in which blood sample is collected, analyzed, and the results entered in a database.  If there's a patient the person can help, the potential donor is contacted for further screening. Actual donation of the bone marrow is supposed to be painful but not excruciating. I think it takes an overnight stay in the hospital to do it. (Don't count on me to have all the details right.  Check the website.)

The catch is that it costs money to get the screening.  If the potential donor is part of certain minority groups, the fee is sometimes covered by funding, because of the short supply and great need.  For a garden variety descendent of Western Europeans, like me, the potential donor will have to supply the fee as well as the blood.

In early 1996, I distributed a flyer at two conventions about Shiori's situation and the need for donors. I also wrote about it in Project Quantum Leap's newsletter The Observer, both before and after Shiori's death. But I didn't get screened myself. Shame on me. I should have come up with the $60 or $100 or whatever it was, and registered with the NMDP. Perhaps some day I will do it.  But I didn't do it while Shiori was alive.  I put it off because of the money and the pain and the fear, and because I knew I couldn't save Shiori specifically. She died on Good Friday, 1996. Is there somebody who has died since then who would have lived if I'd paid the money and undergone the screening?  I'll never know.

The death of a local teenager from leukemia has been all over the local news for the past several days. He died despite efforts to get people registered as potential donors, despite media attention and donations and wellwishers. I'd never heard of the kid myself, but he was Hispanic, so I probably could not have saved him.  Maybe, though, there's still somebody out there I can save.  Maybe there's somebody you can save. And maybe the stuff I was good at in 1990 is still what my main contribution should be: writing about things I care about, and hoping that something I say inspires something good, or lightens the gloom a little.

Meanwhile, I think I'll make an appointment with the Red Cross for this weekend. It's the only thing I ever do that's actually likely to save a life.

Karen

Let 'Em In (my entry on the deaths in the desert)
World Hunger Year (organization supported by the late Harry Chapin)
No More Deaths (organization to stop the needless deaths of illegal immigrants)
National Marrow Donor Program
American Red Cross
American Society for Apheresis

2 comments:

doublel654 said...

Great journal! Congrats on being editors pick!
~Laura

alphawoman1 said...

Wow, that was very powerful.  I had hepititis when I was a kid...I have never been able to donate blood once I tell them.  But, this is very powerful.