Tuesday, September 1, 2009

Remembrance & inspiration


Nine years ago, I stood at the water’s edge in Manhattan Beach, waiting for a friend on a paddleboard who was competing to support people with sarcoma. He was racing across 32 miles in the Pacific Ocean for a small campaign called the Ocean of Hope for a small organization called the Sarcoma Alliance. He was paddling 32 miles from Catalina Island to Manhattan Beach, using only the strength of his arms and the will in his heart to make it to the finish line.

Sunday, I looked across the blue ocean under a very hot California sun, and I thought about that first race and those I know and love who are survivors of sarcoma. And I thought about those I have loved and lost to sarcoma. All of those people have been a source of inspiration and wonder to me.

I thought about all the people I know, myself included, who may not suffer from the disease directly but have been touched by it in some profound way. I have witnessed incredible strength and endurance under seemingly impossible circumstances. I reflected on what this race on this day and this organization and this disease has meant to me.

My friend Suzanne was the founder of the Sarcoma Alliance. Suzanne was diagnosed with synovial sarcoma at the age of 25. Her friend Wendy was dying of liposarcoma after a 15-year battle. Wendy asked Suzanne to carry on her work of supporting people with sarcoma after she was gone. The Sarcoma Alliance was born in 1999 in Wendy’s honor. I was asked to help make this dream a reality and have done what I could to help my friend and others with sarcoma.

My little friend wanted a place where people affected by sarcoma could find guidance, education and support. The mantra was: “You are not alone.” I have memories of her sitting at her small desk, answering emails, phone calls, and writing personal notes. She would do anything and everything to try and help others. I remember the many invitations to eat, drink, be merry and fold letters for the Ocean of Hope campaign. Eat, drink and be merry to stuff and stamp envelopes. Even as she faced recurrence, metastasis and the various treatments that followed, she maintained her focus and resolve that the Sarcoma Alliance needed to help as many people as possible.

When Suzanne decided to stop all treatment in 2002 and live the rest of her days as fully as she could, she continued to focus on the Sarcoma Alliance. She wanted the organization to survive even if she did not. How brave and wonderful she was. And selfless to the end. How proud she would be today to see how her little basement organization has survived and grown and continued to help others. She insisted that Ocean of Hope continue to exist and that it should be a time of celebration in spite of the sadness and heartache that sarcoma can bring.

I continue to support the Sarcoma Alliance and the Ocean of Hope to celebrate the lives of those lost to sarcoma. I celebrate the strength of those who live and survive and move forward in spite of the disease. How brave and wonderful all of you are.
-- board member Marites Tullius

ETA: Please read the comments for more thoughts. Also, we added a photo of Suzanne and Marites.

4 comments:

Marie M said...

I would like to thank you for all you do and the Sarcoma Alliance - Ocean of Hope organization has done since 1999.

When my husband was diagnosed in April of 2007. We didn't know what Sarcoma Cancer was, so we Googled Sarcoma and the Sarcoma Alliance came up.

This was an open door to information we needed to find a big hospital that could help us.

Your website offered us a list of hospital that specialized in Sarcoma in our area. That is how we found City of Hope.

Since then, I love to come to the website for updates and to make friends with others though the blogs on your site who may have similar stories.The daily struggles with cancer.
Here we feel that "We are not Alone" with this rare cancer.

I find inspiration and hope that there will be a cure for Sarcoma someday soon.

We attended the Ocean of Hope with all of our family this weekend at Manhattan Beach. It was a great experience, it brought tears to my eyes to hear others stories and to see the paddle boarders race.

You can't help but admire their strength and endurance to paddle with only their arms, back to shore, after 5-7 hours to complete those 32-36 miles from Catalina Island to Manhattan Beach.
We also had the pleasure of meeting Hilary, Suzanne's aunt who greeted us at the beach ...she is so sweet.

I applaud you, for all your hard work, time and attention to information needed to help others.

Your friends Wendy and Suzanne would be so very proud of you and everyone on your team.
Great Job! :)

Sarcoma Alliance said...

Marie, thanks so much for your comment! This is Suzie, a survivor of leiomyosarcoma. I didn't get to go to O2H but people's comments help me feel what it was like.

Anonymous said...

Marie,
Thank you so much for your comments! I am so very glad that we are able to be of service to you and I am sorry I missed you on the beach. Maybe next year? :) I will keep you and your husband in my thoughts for the strength you need. All the best!
Marites

Anonymous said...

Marites:

I love what you wrote and know that Sooz would too. You have been such an amazing friend to her (and her family!) and such a huge help to so many who have been touched by sarcoma. Thanks so much for everything you do and the wonderful, cheerful, insightful, compassionate way in which you always do it. You are simply the best!!

Stephanie Leider (Suzanne's sister)