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!
What a fascinating man and this makes me tear up. Thank god for people like him who slug and slug and fight and fight because they know they are called/anointed to do so. I have the utmost respect for him. I'm sure the saddest part of the documentary is that he goes by Steve and not Stephen. Tragic. My mom made me go by Andrew until I was 17 and could correct people who called me Steve instead of Stephen.
ReplyDeleteLove Veep. get well and please graduate beyond hummus.
Thank you so much Dr. Cox for all of the work that you do so tirelessly. And thank you, Ellie, for this post and for always raising awareness...whether you are comfortable with it or not!
ReplyDeleteI learned recently that the tiny village that I where I used to live in Provence now has 4 people with ALS. This is in a population of only 1200 people! Yes, for me that definitely seems like a cluster and saddens me to no end. The village is in the heart of the Rhone Valley, right on the Rhone River and is surrounded by large fruit growing agricultural farms where pesticides come into play. There is still so much to learn and it is very hopeful that Dr. Cox and his team are tackling such crucial issues for all of us.
I am going to have to think about Albert Camus' statement that Sysyphus was happy. Hmmm. Thanks to Dr. Cox for this post and the research he is doing. As for you, Ellie, my heart hurts for you. I am sending love and encouragement and if I could tell a joke to make you laugh, I would. Unfortunately, I am not skilled in the humor department, so I will send a BIG hug instead.
ReplyDeleteAren't you just waiting to see how Kathryn's documentary efforts blow up??? I've been watching with my daughter -- AUP 2013 -- who interned at three federal offices and is always commenting on how the parody does imitate actual events.
ReplyDeleteDear Ms O'Connell, Dr Cox' theory is kind of amazing and elegant. I am curious ( if I may be) do you feel like bmaa toxin exposure resonates with your case? Specifically, do you feel like you may have had some increased level of bacterial exposure or do you feel like, as Dr Cox noted, these bacteria are really everywhere, and really everyone ( or anyone) can draw this wrenching short straw?
ReplyDeleteI wish for you continued (super human) strength.
Bravo to Dr. Cox for forging into different territory--after all, who knows where the answer will lie? Every stone has to be turned.
ReplyDeleteI've been reading your blog for a few years, thanks to either Lost in Arles or Habitually Chic. But over the past week, I've been re-reading your posts, going backward. I cannot tell you how many times I've drawn the ire of my husband for laughing out loud from your writing. Of course he doesn't see the humor--typical European guy--because you are SPOT ON. I am in awe of your talent and your productivity (typed while not working on my assignment).
Sending lots of love. I'm very sensitive to toxins and they are, indeed, every where. I haven't thought about Sysyphus and his stone; attitude is everything. xoxox Mary
ReplyDeleteDear Ellie, You are a marvel yourself. And Dr. Cox is as well, loved his profound thinking on you and ALS in his post. Albert Camus is also one of my favorite writers. And I love the vision that Sisyphus was lifting that gigantic boulder with his heart full. I do imagine him as happy.
ReplyDeleteYou are amazing - enjoy your hummus and your babaganush. I have minor ailments which I won't even list as they seem completely stupid - I say "My body now restores itself to its natural state of good health". I believe in affirmations and I am getting better. Suggest you keep on doing things that empower and uplift you as you uplift everyone else. Happy Tuesday to you!
Love.
Alexis
I listened to his Ted talk and it looks promising. I do hope the FDA speed things up for god's sake considering Coca Cola is allowed and pop tarts is legal. I hope you are resting once again and finally getting to enjoy your other choices of dip this week after your latest hospital outing...
ReplyDeleteDr. Cox, I have nothing but admiration for you. Words are inadequate, but THANK YOU for everything you've done and continue to do.
ReplyDeleteEllie,
ReplyDeleteOatmeal raisin with chocolate chips or chocolate chip? Today seems like a good day to bake.
Judy
What an amazing man. Thank you for sharing him with us. xo
ReplyDeleteI woke up this morning happy to learn to that you - and Dr. Cox - are making progress. I wonder how long you have been taking L-Serine; it sounds promising. After watching Dr. Cox's fasicinating TedX presentation, I understand why you once said that your ALS may have been caused by eating a bad piece of fruit (or something like that). I am very familiar with the arduous process of bringing a new drug to market, and I wish tenacious Dr. Cox much continued success with his brain-disorder research.
ReplyDeleteEllie--Dr. Cox was my undergraduate biology professor! He is amazing! You are truly in the best of care. So with your super powers and his super powers, you will very quickly be able to take your (rightful) place as Queen of the World (sorry Beyonce). Thank you for allowing me to make this connection; it's as if I've now met royalty!
ReplyDeleteSending you so much love,
Amanda
Love Dr. Cox and love love love love you. Sending that on to you. You're the best.
ReplyDeleteThank you, Dr. Cox for your profound efforts in the fight for a cure for ALS. Extraordinary Ellie, all of your friends on this blog cannot live without you...your humor, your strength, and your ability to keep on going is awe-inspiring. Sending much love and hugs, Gina from PA
ReplyDeleteEllie, This is the small miracle we have been wishing for....sending love and support across the miles.
ReplyDeleteProfound indeed, so glad you have him in your corner. #winning
ReplyDeleteI loved Kathryn's big reveal and Selena's response "Who?" She absolutely refuses to acknowlege her body double-HA!! Also, at the end when Kathryn and her new love are sitting on the bench-stoic but expounding on how giddy they feel-totally hilarious!! Such an irreverent look at everything.
Keep finding things to laugh at and that will definitely help as well. Soldier on, dear Ellie!
Great to hear from you, Dr. Cox is a Prince of a guy....gives me hope to be introduced to a wonderful Dr.
ReplyDeleteWe gotta fix this water supply, Flouride, and get rid of GMO foods out here, while Bayer is bidding on buying
that horrendous crook of a company Monsanto = Agent Orange and the list goes on and on and on.....souls
need to boycott 100% GMO foods in my opinion...hit um in the pocketbook.......XOXO
Where would we be without people like Dr Cox in this world, such a stark contrast to so many others.
ReplyDeleteJust a side note Ellie - I find that if you mix equal parts of hummus with greek yoghurt you get a wonderfully creamy hummus. Take care and thinking of you.
Love Cindy F
xx
I haven't written to you before,Ellie, but have been moved and touched and saddened and uplifted and horrified at my seemingly inappropriate laughter throughout. I've now decided that if I make my children's breakfast with a little flair and maybe some flowers on the table, or if your Dr. Cox sees your face every time he looks through a microscope, or maybe someday someone sees your Grace and smiles at her on a day she really needs it because they've read your words and have been changed by your life, wouldn't that be wonderful? I really just wanted to thank you and add my voice to the many that say you've changed them for the better.
ReplyDeleteEllie, you continue to leave me speechless! What a remarkable life you lead! You seem to have always been surrounded by amazing people, like you were a magnet for the extraordinary! As extraordinary as you are, it's still unbelievable that you have Dr Cox not just on your corner, but as your house Doctor!! You deserve it. You are truly the bravest person I've ever met and you fight like no one to keep going and to destroy this f..ing illness. I really have the hope that something is going to happen, something is going to click and work. You have a purpose beyond being pretty, smart, funny, uplifting and witty. You are a remarkable woman. Give Dr Cox a huge, virtual or verbal hug!! He is now, loved and revered by so many more, who are waiting for his genius to work !! Love you both, you one of a kind, magnificent people you!
ReplyDelete