Open Ended Death Sentence

A few people have asked me about my reaction to Brittany Maynard’s death. How do you feel about it? Does it upset you? Do you think it was ‘right’? Would you do the same thing? Do you think she gave up and should have gone through surgery and treatment? And so on. Brittany isn’t the first one to die of this disease, there are many others who fight the battle and lose. We lose people to GBMs every day. We also see survivors who inspire hope and promise.

Very few of us know what was really happening with Brittany. We can all make assumptions and quickly move into criticism, judgement or support for her choice to die with dignity. Some will quickly call her decision, her ‘suicide’, immoral and she shall be damned for eternity. Maybe some people don’t believe Brittany should have ended her life, some say she should have fought harder, and others called her brave for making that hard decision and bringing the ‘die with dignity’ discussion to the forefront.

No one but Brittany, her family and her doctors know her circumstances, the details behind her tumor, and her final decision. She was diagnosed in January and ultimately chose not to seek aggressive treatment. She chose to die her way. She chose to use her situation to bring attention to ‘Die with Dignity’ laws in the country.

The one thing that I AM bothered by is the fact that her story brought a lot of attention to the ‘Right to Die’ laws, but very little discussion about brain cancer. It was a lost opportunity to open a dialogue about the need for awareness and funding to find treatments and even a cure, making sure that no one suffers through this disease of has to choose how they die. But I’m stating that disappointment from the perspective of someone fighting the same deadly tumor, which gives me a little bit of a bias.

NBC was one of the only news outlets that seemed to focus on the issue of brain cancer.  The article is here.

In contrast, Lauren Hill – another terminal brain cancer patient – has chosen to spend her final days raising funds and awareness for Diffuse Intrinsic Pontine Glioma (DIPG). This pediatric brain cancer is as deadly as Glioblastoma Multiforme. Her community has rallied around her with support and love.

Both Brittany and Lauren had/have terminal illnesses. They both chose how to raise awareness for what was most important to them. Neither decision was right or wrong, it was their decision and we should respect that even if it’s not what we would choose to do ourselves.

Living with a terminal illness with an open-ended completion date can be a little stressful at times. Ok, very stressful. Knowing you’re going to die from a terminal illness, just not when, can lead you to become paralyzed with fear OR it can lead you to enjoy the beauty that each day offers. More realistically, however, it’s a combination of both – sometimes in the same day. It will cause you to plan for the inevitable, privately or publicly.

Many of us might not make the same decisions as Brittany OR Lauren. Does that make one of us ‘stronger’, ‘braver’ or ‘weaker’ than the other? No. It just means that we’re all individuals fighting a disease that we know will eventually take our lives…sooner or later…and how we each deal with that is going to be a very individual experience from diagnosis to treatment to death. Brittany and Lauren made their choices and so will we.

 

 

Want To Help?

Rant warning

We live in an age where women (and a few men) are famous just because they’re rich; where the ‘media’ follows them around just to get that one great photo; where ‘reality shows’ outnumber anything creative; where our sense of self-worth is based on our bank accounts or our ‘physical beauty’; where apathy outweighs empathy.

Why is it that ‘pop musicians’ get more attention for their bad decisions and are made millionaires because they perform songs written by other people? Why do media companies spend fortunes creating tv shows that follow families that have contributed little to better society or follow celebrity newlyweds as they navigate through their private relationships? Our priorities seem to have gotten jumbled along the way. Kindness and generosity seem to have waned. Our politicians seem to be working for the lobbyists rather than the people who elected them – afraid to make the hard decisions because it might risk their ability to be re-elected. Our obsession with celebrities has become more important than community engagement. Toddlers and Tiaras is a thing. Westboro ‘church’ selfishly pickets a family’s grief at a funeral for their loved one?! No one would consider that christian, it’s just plain hate.

Those people who are fighting for the less fortunate, for accountability of our largest corporations (Monsanto, for instance), for social programs that provide job training, safe havens for at-risk youth or victims of domestic violence, outreach programs to support the mentally ill or the aging populations seem to be fighting an unending uphill battle. Our schools are more focused on standardized testing than teaching life skills, problem solving abilities, recognizing individual interests and abilities. They remove enrichment programs like art and music which help provide the only experience and appreciation for the arts that some children will receive. Recess and physical education are being cut or dramatically reduced for the sake of classroom time when most children need to exercise and move their bodies to prepare their minds for learning and develop healthy habits.

Why are they called ‘Random acts of kindness’ rather than kindness just being a normal part of how we treat others in our communities?

Why aren’t we funding research to develop new treatment options to extend lives or cure diseases? Is it there that much apathy? Is it because it’s not important when it doesn’t impact you personally? Is it because these diseases kill so ‘few’ people that it’s not worth the money? Is it because it’s not profitable? Why are we and our families less important than the Kardashians or Honey Boo Boo?

This is the society that we live in. I think we can do better, how about you? Do you want to help improve our world? Helping others is a powerful, empowering, rewarding experience. So do something, anything to allow yourself that experience.

Pick a cause. Become an active participate. Become an advocate for change. Donate, fundraise to support an organization’s efforts. Talk about it, write about it, raise awareness. Volunteer your time. There are so many ways to help. Don’t make excuses for not participating in some way, any way.

Some options that are close to my heart (not a complete list):

National Brain Tumor Society

The Humane Society

Humane Farming Association

Sierra Club

National Psoriasis Foundation

National MS Society

 

Do something. Help. Give. Act.

Everydayleft, Right, Left…

As we near the one year anniversary of my Brain Surprise, my family has decided to show their support and love by helping to raise funds for National Brain Tumor Society in our local Silicon Valley Brain Tumor Walk on October 26th. My husband and brother-in-law have started a team: EveryDayLeft, Right, Left…  Get it?

ABOUT NATIONAL BRAIN TUMOR SOCIETY

National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and anyone who will be diagnosed tomorrow. This means effecting change in the system at all levels.

We have a rigorous and thoughtful agenda, integrating research and public policy to bridge critical gaps. Starting with discovery science, to clinical trial design and the development of new therapies, there are many opportunities to make improvements and speed the momentum of new findings.

National Brain Tumor Society is the largest brain tumor nonprofit organization in the country, hosting events, workshops, and scientific symposiums throughout the United States. Learn more at http://www.braintumor.org.

ABOUT BRAIN TUMORS
  • Each year over 210,000 people in the United States are diagnosed with a primary or metastatic brain tumor – that’s over 575 people every day.
  • Because brain tumors are located at the control center for thought, emotion, and movement, their effects on an individual’s physical and
    cognitive abilities can be devastating.
  • Among children under age 20, brain tumors are the most common form of solid tumor, and the second leading cause of cancer-related death, following leukemia.
  • Brain tumor research is underfunded. National Brain Tumor Society is the only organization that not only funds significant research, but also advocates for increased government funding.
  • No two brain tumors are alike. Prognosis, or expected outcome, is dependent on several factors including the type of tumor, location, response to treatment, an individual’s age, and overall health status.
  • There are more than 120 different types of brain tumors, making effective treatment very complicated.
If you’re local, consider joining us as we walk and raise awareness and desperately needed funding. If you’re not local, consider just spreading the word, helping us raise awareness and funding.   Just click here: EveryDayLeft Right Left 

Thank you for your support!

Karyn