Sunday, August 30, 2009

sailing against the wind

Not long ago, I wrote an email to Edward Kennedy. I was asking him not to forget "rare diseases" (in another word: sarcomas) in the language of the health care reform bill he introduced in Congress. I received an answer on August 17, on a day I could hardly lift my head due to nausea. In the email he explained to me that the details of the legislation have not been determined, however they were making progress and he was looking forward to working on the legislation with the new Congress. Since I was feeling so weak and sick my immediate thought was to wonder where did Ted Kennedy find the energy to continue fighting for his health care reform, which he called "the cause of my life", while fighting brain cancer. And now the lion of the senate is gone. His skills on negotiating and getting a bill through will be missed when Congress resumes after Labor Day. For us, in Massachusetts, after having him as our senator for forty seven years, it will feel strange .

On August 25th, cancer also claimed the life a friend of mine. Filipa lived less years than those that Kennedy was on the Senate. Like him she spent the last year sailing against the wind. When I am ready I want to write about the incredible 20 months she lived with lung cancer, how brave she was and how she chose where to die. But I am still in that phase when I just have a knot on my throat and no words are appropriate.

8 comments:

Kathy said...

Elsa,
I'm so so sorry about the loss of your friend. I don't have any words for that are appropriate either. I just know that it hurts.

tapioca said...

o tempo se encarregará de te tirar esse nó da garganta! Estás a viver dias difíceis com tanta dor (que se chama "luto")e depois vem a calma e as boas lembranças que a Filipa deixou no teu coração, onde ela vai viver para sempre. Nessa altura escreve sobre ela no teu blog. Todos queremos ler.
Um beijo e um xi muito grandes

Mary said...

Here is some hope for you. I met one of the people who has worked on the language of the ALERT Act and is also working to make sure that the "ultra-rare cancers" wording stays in the bill. Anyway, the guy I met is actually dealing with an ultra-rare cancer himself. He came to a reception with the Liddy Shriver Sarcoma Initiative during Team Sarcoma, and he had just had chemo that day! He is very committed to helping. :)

Anonymous said...

Though words are not sufficient, that is all I have and am sorry to hear about your friend. As for your earlier comment about R7112 not working for the VP... please don't assume that will then apply to you. I know it is so tempting, but for each similarity you see, there are so many differences. Keep your spirits up. There are many reasons to think positively...

Got Hope?I Do! said...

I am so, so sorry about your friend. My heart goes out to you and your friends family.

Sometimes when family or friends pass away .....it is hard for all to express their feelings in words.

We may say something inappropriate or the words just don't come out the way we plan.

Losing someone close to your heart is the hardest thing imaginable.

But time heals deep wounds and broken hearts and all the best memories of your friends and loved ones you carry forever in your heart.

Even thought I have only known you though the blogs and have never met you, I feel your lose.




A big hug your way......

CLARINHA said...

Sinto muito Elsa.
Não sei o que escrever
Adoro-te

Anonymous said...

Thanks for sharing your note from Ted Kennedy Elsa. Do not worry, your words and concerns will be heard. I am making sure of it...
Seeing the struggles of Maura's family during her battle and staying up with your blog has given me reason to push forward for research. I have passed along your site so you will be heard.

Elsa D. said...

Many hugs to all my friends.

To the person who wrote the last comment, thank you thank you thank you thank you thank you
from all of us with Sarcomas.