Monday, April 13, 2009

Fighting the Good Fight

Yesterday my technical consultant used his chocolate-bunnies-for-breakfast buzz to post a web version of one of my essays on my website, "A Pill to Change Your Life," about my mother's death from the diabetes drug Rezulin. This was originally published in Fourth Genre, a well-regarded creative nonfiction journal.

The timing is good in light of Amazon's efforts to silence controversial voices because the essay talks about my family's fight to learn the truth about my mother's death. The drug company and the FDA had a lot to hide, but eventually much of the story did come out. The result of our struggle is not simple and not exactly happy, but I see now that we did help get the drug off the market in a very direct way, which saved many more people from our mother's fate. And we did something in spite of the tremendous resources of our corporate opponent.

Rezulin really did change my life, and I see its lingering side-effects in my reaction to the Amazon disaster as well as my decision to write erotica openly. I can't exactly say "I hope you enjoy this," but I do think this essay reveals something of me that I seldom show in my other work. If knowing the truth is in some sense a fundamental human "pleasure," then this piece will provide that at least.


Erobintica said...

Donna. Thank you for posting that. I am about half way through and really need to take a break. I'm so sorry. (not for having to take a break, but because that happened)

I was writing more but my daughter called - gotta go

Marina said...

Donna, thank you for posting this. Your essay really speaks to me on so many levels. I spent many years battling the medical community and social services regarding issues with my brother.

The search for the truth is very difficult and very frustrating. So many road blocks. It is so hard to understand why these things happen. And, the medical community and drug companies scare me. I'm so glad your family was able to find some level of truth out of all of this tragedy.

To see a loved one go through something like this, and to fight so desperately on their behalf, takes its toll. You start with a feeling of helplessness. But, as the fight gets going, small successes build strength and you realize you can change things - and then you're really just battling time.

This kind of fight stays with you always. It's the positive legacy you can take from all of the pain and it impacts all other areas of your life forever - at least, it has for mine. I never really knew what I was capable of until I went through things with my brother.

I, too, find myself taking up the good fight more quickly (as with Amazon), if not with a bit more realism after the long fight for my brother. This Amazon thing is deplorable. But, I think we can all make enough noise to make a difference.

Donna said...

Marina, thank YOU for sharing your story with me as well. I've found with all of the really awful things that have happened in my life that it also opens up doors and connections with other people--one of the good side-effects. In public we all have a relatively smooth facade and it's easy to imagine other people lead serene, untroubled lives. But the truth--and we all want that--is that most people have experienced similar tragedies and struggles. I don't know the details of your brother's situation, but I think I probably know the feelings all too well.

It certainly makes you appreciate the little victories and the power of just making the effort.

Again, thanks so much for reading the essay and for your comments!

Erobintica said...

Finished it. And I find I don't quite know what to say - or maybe it's that I don't quite know what I can say "aloud" that won't sound stupid. This touched me in ways I don't care to post in a blog comment - let's just say that.

Again, thank you Donna.

Jeremy Edwards said...

What a tragic story of greed, corruption, negligence, and incompetence on the part of the institutions we ought to be able to trust. I'm so sorry, Donna.

Emerald said...

What a beautiful picture (and preciously adorable baby).

How lovely of you to post that account on your blog, Donna. I teared up as I read this post remembering when I first read "A Pill to Change Your Life." It was one of the most mesmerizing things I had read in a long time.

Thank you for your comment, Marina.

"I've found with all of the really awful things that have happened in my life that it also opens up doors and connections with other people"

This is a core reason I have experienced you as an inspiration to the human experience, Donna.

And Robin, I understand the comment you made as well. I remember reeling in a way I felt I could hardly describe when I first finished "A Pill to Change Your Life."

Thank you, Donna. Again I feel a deep, unspeakable reverence for what you described. Namaste.

Donna said...

Robin, Jeremy and Emerald--I always feel very grateful to people who give of their time to read my work, but I know this essay is not an easy path to trudge. Thank you for sharing this with me and for your comments. I know it's not easy to respond--it took me years to come up with this response really.

Again, thank you!

Maryanne Stahl said...

I was riveted by this (a bit shamed that I hadn't read it before) and gut wrenched for you and your family.

What you did was courageous and passionate and wise and tells me a lot about why you are such a good mother. I am proud to call you my friend.

neve black said...

Oh Donna,
Like Emerald, and probably everyone that's already commented here, my eyes welled up with tears just reading your post. I haven't begun on the story yet. I need a minute to digest.

I saw a film recently factually stating the same CEO's running some of the big, nasty phaurmeutical drug companies are also the same individuals heading the FDA: The Federal Government. There's no check and balance system in place. It's outrageous! And it's all about greed.

My heart goes out to you and your family. Your mom is with you each and every day and she is so very proud of her daughter.

Big hug and big tears.

Donna said...

Thank you MA and Neve. Actually, Neve, the FDA and the drug companies are in bed together, sometimes literally. But such matters were not deemed appropriate for the trial....

Hopefully under Obama things will get a big better, but with drugs it really is buyer beware.

EllaRegina said...

So so so sorry, Donna.

EllaRegina said...

What Emerald said about reverence...

I am beyond words other than to say you are incredible, on so many levels.