Good morning from Paris.
As we continue our Proust Questionnaire series, I thought I would
give you a little update regarding “my condition.” Baby steps, baby steps. I
finally ate some hummus and believe me, that is a miracle. Baba ganoush is
next. It is easy to get discouraged but I am trying everything in my power to
stay mentally strong so that my stupid body can get stronger. However, I just
want to kill everyone. I watched an ALS documentary over the weekend called,
Hope for Steve, and I don’t think I should have. It depressed me and I usually don’t
get depressed. I kept thinking as I watched the documentary, “How horrible
would it be if I got ALS.” And then I remembered that I do have ALS. So, needless
to say, I am a bit down… so it’s best if I don’t do a lot of writing because I
might inadvertently/purposely offend just about everyone.
So, let’s just talk about someone more positive (and smarter)
than I am… Dr. Paul Alan Cox. My ALS hero. In 1997, TIME magazine named Dr.
Cox one of 11 “Heroes of Medicine” for his work in ethnobotanical drug
discovery. This accolade is just the beginning for this gentleman. I am not
going to say another word until you go to his website HERE and read for
yourself the marvel of a man he is... I’ll wait…
See! Now this is the guy that you
want on your team! And, I am lucky enough to have him in my corner… And my
apartment for that matter. Yes, you heard me, Dr. Paul Alan Cox makes house calls…
to Paris.
A couple of years ago, Dr. Cox and
his brilliant friend, producer Bo Landin, started their endeavor to make a
documentary on ALS and asked yours truly to be a part of it. I was honored but
I was also worried that I would look like a fat fuck on screen so I had some
hesitations but I did it anyway… For the sake of ALS and because I would do
anything for Dr. Cox because he has made it his sole mission in life to cure
ALS…. And because he is adorable.
Dr. Cox believes that ALS stems
from a toxin… And I agree. You can read his whole theory HERE. If Dr. Cox cures
ALS it will also help those with Parkinson’s and Alzheimer’s so his research
will pretty much affect everyone. And this is why he is my hero.
Now, let’s listen to him for a while
because, trust me, he is far more interesting than I am.
Proust question for Dr. Cox: Which historical figure do you most identify with?
Dr. Cox‘s
Answer: French Philosopher Albert Camus
ALS
is a disease with no known cause, no known cure, and only one drug approved in
1994 that adds a few months of life to patients. People sometimes ask me why I
founded a non-for-profit research Institute whose aim is to discover new drugs
for ALS. Funding a research charity is often hard, and coming from a
very different research background (I am an ethnobotanist) and approach
(environmental triggers instead of genetic causes) often leads me and my small
team to be considered as outsiders in the broader ALS research community.
Raising
the funds necessary for laboratory rent, equipment maintenance, staff salaries,
clinical trials, etc. sometimes strikes me as like Sisyphean labor. In Greek
mythology, Sisyphus was sentenced to roll a large stone up the side of the
valley every day, only to watch it roll down at night. Albert Camus in his
essay The Myth of Sisyphus considered
his plight. He wrote “The struggle to the heights is enough to fill a man’s
heart. We must imagine Sisyphus as happy.”
That
certainly has been the case with me. We are making good progress in our
ALS research and have discovered an experimental drug, which Ellie is taking,
which promises to slow disease progression in ALS patients. It was wonderful
two weeks ago for my wife Barbara and I to visit Ellie, and to be cheered and
encouraged by her. Sisyphus is indeed happy.
Don’t you just love
Dr. Cox. I sure do!
Ellie’s question: What is your favorite charity?
Dr. Cox’s answer: Institute
for EthnoMedicine. http://ethnomedicine.org/make-a-difference/
*Something you don’t know about me? I am completely obsessed
with the HBO series, VEEP. Have you ever watched this? It is brilliant. The
writing… Genius. I am not sure if I am proud of this but I have a feeling that I
would be the same exact President as Julia Louis-Dryfus’s (who, FYI, was my
neighbor in Santa Barbara) character, Selena, would be… Judgmental with a lot
of F words and zero tolerance for BS but well dressed. My favorite are her
parenting skills or lack thereof. In the last episode, she looked at her
daughter, Kathryn, just before a big important meeting, and said to her, “Why
is that your hair.”
Love.
A toute!
