Treasure Award/ Blogging for Beck

This is long overdue, but I wanted to explain about the Treasure Award that has been on my blog for the past few weeks. A friend awarded it to me. What a shock because I treasure her blog more than she knows! Her "Blahg" is listed in my favorites to the right under "Melissa."


The idea was to pass it on, so I passed it on to Abbie of Chronicles of a Bionic Woman. She blogs with such intelligence and wit about her life with a cochlear implant. I always learn something new. Go there-- learn and laugh.



Next I wanted to mention a third blog in my side bar, Beck's Blog. Beck struggles with NF2 -- a rare debilitating condition that causes late-deafness due to tumors forming around nerve tissue. She hears NOTHING, so she learned ASL as an adult-- not easy when you grew up hearing. NF2 also affects the eyes and spinal cord. Additionally, Beck is a survivor of Hodgekin's Lymphoma, a rare cancer. She is one of the most inspirational people I know. Like the energizer bunny, she just keeps going and going. Currently she's training to climb up the tallest skyscraper west of the Mississippi, the Columbia Tower in Seattle. This is no small feat given all her challenges. She's hoping to raise money for the Leukemia and Lymphoma Society. If you would like to donate to the cause, here's a link http://www.active.com/donate/2008bigclimb/bc08RDufek and there's another link below. Contributions are tax deductible.



Her sister wrote this beautiful message about her that I can't top so I won't:
Every morning, the ritual starts from the top. Eye drops first, then a moment to collect herself before getting out of bed. When she does, it’s slow going, reaching out for bookcases, furniture, and door frames to stay upright on the long trek to the bathroom. Constantly growing brain tumors have plucked many things Rebecca Dufek (DeGrand) once took for granted: her tears, her hearing, and her balance, just to name a few. But this story isn’t about what was taken. It’s about what Rebecca is giving to and getting back from life. Even though every day for her brings a new set of obstacles, she’s taking on challenges most people never dream of. In the process, she’s changing countless lives one step at a time.


An avid diver and hiker, Rebecca and her then-fiancé packed up their things in a small trailer and headed west in 1996. From Escanaba, MI to Seattle, WA, they moved to a land of mountains and water to quench Rebecca’s thirst for the outdoors, but her dreams were about to be scaled back.


“I had wanted to be a mountain climber but I waited too long and lost my balance function before ever having a chance to do those things,” Rebecca said.
Rebecca lives with Neurofibromatosis Type II, or NF2, a disease where brain tumors attach themselves to vital parts of the brain and are difficult or impossible to remove. They continue growing and causing more problems as they crowd out things like the auditory nerves, causing deafness, facial nerves, causing paralysis, and in Rebecca’s case pinching her brainstem, causing a myriad of problems including a loss of equilibrium that makes common daily tasks like descending stairs daunting. Multiple brain surgeries are inevitable. She underwent her first open brain operation in September.


“It took 8 years to accept that [I couldn’t get out of having brain surgery] and prepare for it while the tumors grew,” she said. The way she prepared was by forcing her body to stay active and in shape, even as the tumors were making those activities harder and harder.
“All surgeons say that it is most ideal to go in [physically] strong to better your chances of getting through the surgery and having a successful recovery,” Rebecca said, “So that is how I get the best quality of life available to me; I train to be a survivor.”
Now, only 5 months after that surgery, she’s on a mission to climb Seattle’s highest skyscraper.


The Columbia Tower stands at 69 floors (that’s 1,311 steps) and Rebecca’s two-person team will climb the building on March 16th for the Leukemia and Lymphoma Society. The event is called the Big Climb, and attracts thousands who climb the skyscraper each spring, raising money to fight blood cancers. For Rebecca, it’s also a personal journey to help others like her; other cancer survivors, that is. She has also been in remission from Hodgkin’s Lymphoma for 15 years this May. She is among only a handful of people in the world to survive cancer and then be diagnosed with NF2.


But none of that has stopped her from her quest to make a difference for others however she can. Rebecca has already done numerous running events to benefit NF2 research, the American Cancer Society’s Relay for Life, and she walked the 2006 Seattle Marathon with the group Team in Training, raising almost $3,000 for blood cancers. She also climbed the Columbia Tower for the LLS last year, not long after her grandfather, Clarence DeGrand, passed away from a blood cancer called Myeloma.


“When I reached 49 floors and there was a sign for 20 floors left to go I started hooting and hollering,” she said, remembering the experience, “When I reached the top and the sunlight poured in from the picture windows in the tower it was a heavenly feeling. I felt closer to Grandpa and was overwhelmed with happiness.”


This year’s climb is also dedicated to her grandfather, and in part because of his spirit, Rebecca plans to continue her athletic and charitable ways as long as she can. However, she knows better than most how quickly the abilities you take for granted can disappear.


“With NF2 you don't know how long it is going to last, so I like to grab opportunities when they come and not let them slip by,” she said, “I am addicted to the highs of life. In all the things I have been through, cancer and brain tumors, it makes me feel alive and that I am living [life] to the fullest by doing such activities [as climbing and hiking].”


“At the same time I am also doing them for an important purpose,” she added, wondering aloud why anyone with the ability to help wouldn’t put forth an effort, “We all have a personal responsibility to contribute to the common good and to society… It is basic humanity.”
The morning ritual is now over, but the day ahead brings many more. Today is training day. Rebecca tells me that living with NF2 makes every day a training day of sorts, but knowing she’s training for others makes her more eager to get up and do it all over again the next day. She finally makes her way carefully down the stairs. That’s when our eyes first meet on this chilly, Seattle morning. Since she is deaf, I’ve been standing outside peering into her living room window, waiting to catch her attention. She greets me with a wave and an enthusiastic grin. It’s time for us, two sisters, to train for the Big Climb.


So far, we are the only members of a team Rebecca aptly named “High on Life.” Her experiences dealing with everything life has to offer, good and bad, have given her an amazing appreciation for the complex journey that it is. That spirit has rubbed off on me, too. Although our team is small, we both know we are a part of a much larger team of people making the effort to save lives.


“Thankfully there are others who feel the same way that I do and that is why I am here,” she says of those who came before her and allowed research into Hodgkin’s Disease to save her life, and keep a sister in mine.


“Now it is my turn to pick up the torch and carry it for someone else,” Rebecca added matter-of-factly.


I’m proud to be Rebecca’s sister, and even more proud to know that our efforts could allow others to survive and understand that high on life feeling. Who knows, our little team could spur someone to make their own contribution. That may not mean climbing mountains, or even skyscrapers, but just making a difference where and how you can. My sister Rebecca holds a wonderful quote by writer Sydney Smith close to her heart:


"It is the greatest of all mistakes to do nothing because you can do only a little. Do what you can."


In the end, it could mean everything. It has for my family.
If you’d like to donate to the 2008 Big Climb, the High on Life team page can be found at
www.active.com/donate/2008bigclimb/HighOnLife. Better yet, if you or someone you know lives in the Seattle area, feel free to join our team or create your own