Dying with dignity includes living with quality.
Hello. My name is Joe Neyer. I was diagnosed with glioblastoma multiforme (GBM) in November 2012. I had to face a terminal diagnosis, so I can relate to what Brittany Maynard is facing. I was given 14 months to live. I had surgery and chemo, but the tumor returned, which made my prognosis even worse. Months at best, they said and more likely weeks. That was over a year ago now.
I was given options, but they all involved living as a glio patient on chemotherapy or other hospital trials and that was not really how I wanted to finish out my life experience.
I decided to include medical treatment with other alternatives.
I looked into what other ways I could approach the "baby" growing in my brain.
I realized that my right to die included my right to live, that I could accept my condition and still accept being alive and living as well as I could. And in that acceptance alone I began to see positive effects in my condition.
I noticed others were also looking into these same things, asking similar questions, and discovered more and more. It is not without ups and downs, but opening to the actuality of the condition does help shed understanding on the fear that can arise when given a terminal diagnosis. Now I am looking to understand it, not run from it, so I pour my heart into that, understanding as much as I can. Understanding unfolds like a lily on a pond, naturally opening up and revealing what seems hidden in the depths.
I am now almost two years out from that diagnosis and defying all expectations.
I am not bed-ridden, not incoherent -- actually seeing improvements in all areas of function.
It is not a miracle cure.
I am still a human dealing with glioblastoma.
I take some meds: anti-seizure, low dose steroids and pain meds, adjusting these as needed as time moves along. Also, I include all sorts of other practices that have been a part of my life for decades now.
So, it seems to me there are many ways to approach a terminal diagnosis.
Sometimes we are limited by our own assumptions or by what the doctors and charts tell us ‘will be.’
Medicine should not be ignored or neglected of course, but there are often other things we can include that will make a big difference, not only in quality of life, but in the extension of life as well. As a human with glioblastoma multiforme who is defying the odds and the expectations, I think it is important to share this aspect as well when we are talking about the right to die with dignity.
It was great to see this conversation brought into the open by Brittany and there is much more to explore, it seems. Those with glio who watched her story were given death with dignity as an option. That is one story to be told here.
I would like to add to it about living with quality while facing a terminal condition. It seems to me those same people afflicted with GBM who saw her story may benefit to know there are other options that they do not know. Not only on how to live, but potentially how to live well -- if we are open to possibility
The right to die with dignity involves the right to live with quality. We are beginning to find out just how much we can do in this regard when it concerns a terminal diagnosis such as GBM.
Thanks for your time.