Living with quality when faced with tragedy

Joe Neyer was driving home early one November morning in 2012. He had been having frequent headaches throughout the week but thought nothing of them. However, three blocks from home, he got completely lost and couldn’t remember where he was. Joe had a seizure and passed out.

An MRI discovered brain tumors, and he was diagnosed with glioblastoma multiforme, or GBM. It was a terminal diagnosis, and he was told that he would most likely have fourteen months to live. Joe then had a difficult decision to make — whether or not to go through chemotherapy. After the first round of chemotherapy, Joe decided that the loss of functionality resulting from the chemotherapy was not worth it. He decided to forego further treatments, despite the wishes of his family and friends. Joe decided instead to live out the rest of his life normally. He now spends his time meditating, feeding his fish, woodworking and, most importantly, following in the footsteps of the ancient Greeks with self-reflective learning.
Last spring, Brittany Maynard was diagnosed with GBM and was given an estimated six months to live. She was told that, due to her illness, her death would be long and painful.

She decided to go a different route and moved from California to Oregon in order to take advantage of “death with dignity,” an assisted suicide practice only allowed in five states. All Brittany would have to do is take a small pill, which would allow her to drift peacefully into her final slumber alongside her family and friends. Brittany posted a video to YouTube about her decision and became an advocate for death with dignity nationwide, promoting a controversial viewpoint that has made a huge impact on her and her loved ones.

Joe Neyer was one of many people to watch her video and be impacted by it. He decided to write her a letter from a unique perspective — that of someone dealing with the same diagnosis. He could sympathize with her choice, having been told by doctors that the surest way to extend his short life expectancy would be through intense chemotherapy. However, Joe approached the realization of his mortality in a different way. Joe believes that dying with dignity is just one choice for patients facing terminal diagnoses like him, while another is “living with quality”.

Joe realized that when facing a terminal diagnosis, most people do the same thing — they create a “bucket list” of things they would like to do before they die. For Brittany, that was getting married, having kids and visiting the Grand Canyon. The problem Joe has with this is that it focuses too much on the end — on death. He believes that when people are faced with terminal diagnoses, they focus on the fear of what is to come instead of living in the moment. He believes that by focusing on the inevitable, we succumb to its sickeningly sweet call. In his opinion, by focusing on the “expectations” of the doctors and their own assumptions, those facing terminal diagnoses may limit themselves and their lives. Joe says that by constantly fearing dying tomorrow, one cannot live well today. By fearing the future, the present is ignored.

Joe is no stranger to death, having lost his wife in 2003 due to breast cancer. He understands how difficult it is to lose someone close to you and to leave people you love behind. Most importantly, Joe knows how living with quality can help you. Joe has outlived his 14-month diagnosis by eight months and is actually showing improvements in different areas of functioning. He has exceeded the expectations of his doctors in all areas of life and lives life to the fullest each day.

At the same time, however, he is accepting of his fate. He knows he will die and could at any time due to his illness. He believes that Brittany is strong for what she has decided to do and that her choice brings up many important topics for discussion. Joe believes that dying with dignity is an important discussion for those living with a terminal illness and that it is important for it to be brought to national attention.

However, he also believes that living with quality is also an important concept for people to understand and discuss. Joe knows how much it has changed his life and wants to share his experience with the world. You do not need to have a terminal illness to live with quality, but instead just need to suffer from the terminal, “sexually transmitted disease called life,” as he puts it.

As one of Joe’s many nephews, I can understand how difficult it is not to live in fear of the unknown. Occasionally, when my mind starts to wander, I think about how little time he has left. I worry and fret over how I have wasted my time with him and how I have wasted my own time. Then, I try to take a deep breath and let those fears go. For if I live in fear of what is to come and what I could have done, then I cannot live in the present and cannot live with quality.

Note: Brittany decided to take her pill, ending her life on Nov. 1 at the age of 29. She died in her bed, surrounded by her loved ones, as was her desire.