Important note before reading this week’s entry:
Brittany Maynard, one of the two subjects of this blog, chose to end her life on Saturday at her home in Portland. Little did I know that the day I was writing this entry, she was taking the very action she had fought so publicly for. Rather than edit what I have written to focus on her death, I think the better way to honor Brittany’s bravery is to leave the words intact and focus on the positive examples both Brittany and Nurse Kaci Hickox, still alive and well in Maine, are providing to the world – not to mention our 24/7 news cycle.
Ok – now back to our regularly scheduled programming…
No one wants to get Ebola because no one wants to die. Well, most of us that is. But on the opposite ends of the country two very different yet quite similar young women this week helped lead the way in our continuing understanding of life, death and all of the messy stuff in between.
In Maine, we have a 32-year-old nurse named Kaci Hickox and in Portland, Oregon, at least for now, there is 29-year-old newlywed Brittany Maynard. Both want to continue their lives the way they choose. It’s just that in the case of Brittany, who has advanced Stage Four brain cancer, that means having the freedom to decide when to die. And with Kaci, who recently returned from West Africa after caring for a 10-year-old girl dying alone of Ebola, it’s simply about the freedom to ride her bike in the woods rather than endure quarantine in a makeshift New Jersey medical tent sans plumbing or at an undisclosed government chosen hospital somewhere inside the Pine Tree state.
I know a good place to hide away
I refer to each of these young women by their first names. Which only seems fair since they have also chosen to let us get to know them in unusually intimate ways. Also, since it makes them feel more like real people rather than merely names in the news, and being I admire them both greatly, well – I figured it’s the least I could do.
Ebola, ebola, ebola, ebola, ebola. Something about the way it sounds even feels dangerous, doesn’t it? Or at the very least exotic or unknown. Which most certainly makes it scary. Well, any disease that can kill you is frightening, especially when you didn’t ask for it or even put yourself at risk for it. Not that the latter matters. Or does it? I mean, no one made Kaci go to Eboland, right? Why should the rest of us have to suffer for her nobility?
Let’s get something straight about science – medical, environmental or otherwise. It is, all of it, based on facts as we know them at the time. For instance, I could have told you with all certainly that the world was flat several thousand years ago and pretty much you would have taken it for granted as true. However, all these centuries later it has been proven time and again that we live in a round world so what is true changed based on research. Is it then possible 500 years from now science will shift and prove the world is really shaped like a question mark? Well, of course anything is POSSIBLE but it hardly seems likely based on what we have learned over the last 2500 years. Although given the popularity of absolutist thinking lately, I do fear for the extinction of question marks of any kind.
The overwhelming consensus in the scientific community at the moment on Ebola is that it is a virus that is transmitted from one human to another through direct contact (broken skin/eyes, nose or mouth) with bloody or bodily fluids (urine, saliva, sweat, vomit, feces, breast milk, semen) with a person who is actively sick or through objects like syringes and needles. It is not airborne unless a current Ebola patient who is actively ill and who has a fever pries open your mouth and spits (or does worse) directly into it.
Ewwwww
Many Republican conservatives have voiced the perils of those with the Ebola virus riding the subway or bus systems and randomly infecting the rest of us innocents just because they were too careless to stay home. Certainly, that is even what the scared, poor old bleeding heart liberal me at first thought until I took off my hypochondria hat and considered – when was the last time anyone threw up, bled or deposited their semen directly into my nose or mouth on the bus or subway? I suppose they could sneeze into my mouth or nose if I didn’t watch myself but they’d have to be actively sick and sweating with a high fever and I don’t tend to sit or even stand directly next to those people in public places, given the kind of weirdo I am. Plus, there is always Purell.
I really don’t look good in yellow
Unfortunately, I remember this type of panic exactly three decades ago around a disease called AIDS. I also recall as if it were yesterday the now 20 plus years dead but then 13 year old boy named Ryan White who was thrown out of his school by alarmists for being HIV positive even as he lived six more years to infect no one. Not to mention Conservative icon William F. Buckley, Jr. going on TV at the time and suggesting young dying gay men and IV drug users in New York, and presumably very young boys like Ryan White elsewhere, be tattooed and quarantined – sort of the way they were in Nazi Germany 40 years before that. Lovely.
If that sounds as if I’m being unfair, I am not. Yes, of course I am biased. But in this case, I am simply reporting on the facts at that time. Just like you can’t un-infect yourself from a virus you can’t change the reality of the past three or ten decades later simply because it is embarrassing. Of course, you can cure a virus with knowledge the scientific community has uncovered. Much in the way you can re-educate yourself and change your way of thinking to something a bit more rational and factual. That is if you choose to do so.
Which brings us to Brittany Maynard.
Happier times
Here is a vibrant young California woman who was just married and by all accounts smart, happy and active, diagnosed in the late stages of a lethal brain tumor that will end her life with a barrage of unrelenting headaches, a loss of motor skills and certain death in less than a year. Numerous doctors told her that her case is accelerating rapidly and that not only is there no cure but little respite they can promise her from an extremely painful and severely mentally debilitating decline.
After some thought and consultation with her doctors and loved ones, Brittany made the decision that was right for her and she and her husband moved to Oregon where euthanasia is legal. What that means is a doctor can legally prescribe Brittany a small lethal dose of pills and, if she choses to take them, can end her life in a manner of minutes privately and painlessly. Now that wouldn’t seem to be all that controversial, would it?
Well, it turns out that it is and that even with a debilitating brain tumor Brittany was smart enough to be one step ahead of all the protestors. So she decided to post an online video explaining her decision at some length, which, to her and everyone else’s surprise, quickly went viral and has now received over 6 million hits. Wow. That’s a lot of interest. Makes you even think some of those people actually realize that they too, like Brittany, just might be faced with a similar end of life decision at some point in their lives where they just might want to explore a similar option.
Well, that would be quite cowardly, or at least not brave, according to a 30 year-old man with a brain tumor named Phillip Johnson. A Catholic seminarian from the Diocese of Raleigh, N.C. who six years ago was diagnosed with a similar though not entirely identical brain tumor, Phillip came out quite vehemently and quite publicly against Brittany’s own end of life choices in a widely read though not quite as viral article 10 days ago. Here are just a few excerpts:
Suffering is not worthless, and our lives are not our own to take. As humans we are relational – we relate to one another and the actions of one person affects others. Sadly, the concept of “redemptive suffering” – that human suffering united to the suffering of Jesus on the Cross for our salvation can benefit others – has often been ignored or lost in modern times.
There is a card on Brittany’s website asking for signatures “to support her bravery in this very tough time.” I agree that her time is tough, but her decision is anything but brave. I do feel for her and understand her difficult situation, but no diagnosis warrants suicide.
I will continue to pray for Brittany as she deals with her illness, as I know exactly what she is going through.
Gee Phil, and I thought only God himself (or herself) can only really know all the true experiences of all the men, women and beasts in the world.
I try not to write much about religion unless it has to do with fundamentalists who are determined to bring their way of thinking into the mainstream and that is only because they leave no room for any dissenting thought. Whether it’s done for selfish dogmatic reasons or in the name of a loving God whose word you are determined to spread because part of your religion, you believe, makes it your mission, it’s never proper to order others to adhere to your way of life en masse or judge them harshly as long as they are not hurting anyone else. Still, it does puzzle me why anyone would go out of their way to so publicly object to how a terminally ill patient chooses to end their life and why that anyone would do it in the name of God. As a NY Jew who for 27 years has lived with an Italian Catholic who did quite well as a boy in Catholic school, I’m here to tell you that even God wouldn’t like it. To wit: here’s the one Bible passage my former altar boy taught me that I can actually remember.
John 8:7: Let he who is without sin cast the first stone.
In the name of Brittany, take that, Phil. Not that she needs my help – at least not on that score.
As for me, I choose to think about it this way. I’m not going to use Kaci for a blood transfusion or a bedmate but I would be happy to hug her in thanks for the selfless way she chose to fight a deadly virus at its source. Not to mention, if she were in town I’d happily invite her over to my home for dinner and an evening of crazy 8s. I’d do the same for Brittany if she were well enough to travel or had the strength to have me over. Though perhaps I would give her a blood transfusion if she needed it. Which might not happen since because of AIDS gay men are still forbidden from donating blood to non-family members and most certainly to those we don’t know. We are all, each and every one of us gay guys, in the high-risk category despite our HIV statuses. Yup, there are some things we as a society still just don’t grow from. But perhaps one day we will. In time. How fortunate for those of us who still have that luxury, and for those who decide to fight for it.
notes from a chair 
I’m sorry Steven, but I have to vehemently disagree with both you and Brittany, and I fully agree with Phillip Johnson here. Because Brittany’s choice DOES NOT only affect her, as evidenced by the 6million views on her video. She is a viral sensation. Her choice affects EVERYBODY. It affects future terminally ill patients. It affects other people who are suicidal for other reasons. It makes the idea of suicide brave. It makes the IDEA of avoiding any possible suffering “brave”.
Brittany may no longer be alive, but ideas live forever. As a fellow writer, you should never take that for granted.
How many people have been diagnosed as 6months to live only to go on to live 6 years, or more even, to grow as people, to find new ways to find the beauty in life? That takes bravery. That takes guts.
My grandfather had a stroke recently, making him go from the head of security at a college campus to someone who mumbles when he speaks and can barely walk without someone at his side to lean on. You can barely understand him at times, and often he seems so weak. His heart is not in the best condition either, and yet he’s no longer strong enough to undergo minor operations. Yet when I last visited him, he and his wife seemed the happiest they’d been in years, even though he works his butt off to do even basic tasks, and she works her butt off to take care of him. It is HARD. But they love each other, and were reminiscing about the best times of their life. It was beautiful. It was one of the most beautiful things I’ve ever seen.
My Uncle meanwhile has schizophrenia. It will never go away. It will never be cured. He will never be the same person he was when he was my age. He has become obese and diabetic due to his meds. And he isn’t the best with his medication, making him frightening to be around at times. Yet none of us would want to see him take his own life to end his suffering. Because even through it all, even when he’s “off”, he can find a way to enjoy life. And if he fully put in the effort, got fully the care he needed, he could find more ways to enjoy life, even if it was hard, even if he was never better.
And, while non of them have had 6months to live or debilitating illnesses such as these, I do know several people who have been suicidal in the past, including myself. I know people who have tried and failed because someone else saved them (not me. But someone very close to me). It was always out of the same emotion: intense fear, and finally being calmly, numbly resolved to the “fact” that that fear was “never going away”. Their life was only going to be “hell”. The choice was never brave.
Life is what you make of it here and now, and choosing to end it is never the brave choice, no matter the circumstance. Life is beautiful, even in the face of the worst horrors, whether they be brain cancer, or a stroke, or mental illness, or debilitating depression, or I don’t care what. You can find the beauty in it. Everyone can do that.
This whole thing is about our values and our outlooks. Are we going to be a positive society that sees beauty, or are we going to be pessimistic, and only value the fully mentally and physically capable? What do we really value in life? Because those values matter. Which values we choose to pass down to others MATTER.
I do not agree with Brittany. I do not wish to judge her personally. I do not wish to shame her personally. I do not wish to mock her, or belittle her. I do not want to give her family any more pain or hardship to deal with. I wish Brittany, the individual, all the best, wherever she might be. Whether there is an afterlife or not, I don’t know. I wish her family, those individuals, all the best and all my love. I’m sure Phillip Johnson would agree with all of that.
But I will not support the idea that Brittany stood for, or the values she wished to pass on. Brittany may be gone, but an idea can live forever. it can affect millions upon millions. And I will be damned if that idea is praised and passed on as our new value set. THAT is why Phillip Johnson felt the need to post what he did. That’s why I feel the need to as well. And that’s why everyone who disagrees should too.
I think the issue here is choice. Everyone has the right to make their own end of life decisions – there is not a right or a wrong choice but only a choice. The idea that a man studying to be a priest will publicly state that a woman in Brittany’s condition who has decided for her very own personal reasons to end her life is not courageous – or worse yet, is doing something wrong and somehow against what he believes to be sacred biblical teachings that one should live their life by – is frankly quite offensive to me. Let him believe what he wants but how dare he condemn a woman with his words who is trying to be an example to a significant group of others who might be scared and afraid and agree with her – or even an example to people in their families. It doesn’t make the choices of life he or anyone in your family or anyone else has made less noble or less correct, for them, to also say that Brittany made the decision that was appropriate and right to her. I have been very close to terminally ill friends and relatives and have seen these choices go many ways. I know personally there are no rights and wrongs in these instances. But I am no longer going to sit back when religious writers or advocates quote biblical scripture in some sort of twisted moral justifications of what they consider their superior positions. As a writer and fellow human being I’m just not going to stay silent on any of these issues any longer. It’s offensive to me in so many ways and on so many levels.
He and anyone else has every right to raise these issues and argue about them. But the language and inferences are very clear – no one has the right to end their life and make these very personal choices for themselves and if they do they are certainly not to be emulated in any way. And re most definitely WRONG. Huh??? I’m not interested in what his religious teachings are. I’m interesting in every individual living and dying the way they choose for themselves and their loved ones as long as it does not hurt other people. And then let other people draw their own conclusions from the examples set. But spare me the holier than thou crap from churches, synagogues, mosques or anyone else choosing to decide what is right or wrong in terms of the deity and teachings they choose to worship for themselves.
Because Steven, it wasn’t the right choice, and her value set was wrong. And it is a value set that should not be passed down to our current or future generations. NO ONE is condemning Brittany. We are condemning her value set, and saying yes she made the wrong choice. Just as someone who commits suicide makes the wrong choice. Just as someone who does drugs makes the wrong choice. Just as someone who lives in self pity makes the wrong choice, or someone who doesn’t go out and live life to their fullest potential, etc etc. These choices may not directly affect anyone else directly, but they are still choices that we value or do not, that are right or wrong. And it’s not because of some vague religious dogmatism that you reject, but rather just a matter of the human condition and of cultural values in general. Will we be optimists who value life or pessimists who do not? It really is that simple.
If you’ve ever known anyone who suffered from depression, or mental illness, or addiction, etc etc, then you should know that the vague idealistic notion that we should let anyone live and die however they see fit (as long as they don’t directly hurt others) is oversimplistic at best and destructive and dangerous at worst. Brittany is an extreme case of someone with a terminal illness, but this is also about all the less extreme cases. Someone who is spiraling into depression and is a shell of their former selves, should I not tell them their life outlook and choices are wrong and help them to get better? Someone who has lost their former life drive due to addiction or substance abuse, should a friend of them not hold an intervention to help them get back on the wagon? Clearly “CHOICE” is not the be all end all value in life, nor should it be. Because sometimes our own personal view of reality is skewed, due to hardship, due to illness, due to depression or substance addiction, etc etc. That’s part of why the religious always stand on that side of “Your choices can be wrong, and morality is higher”, because they have an idealogy that links in with the idea that there is an omniscient universe beyond our personal experiences, and we can’t always trust our personal emotional experience at any given moment. Sometimes our outlook is skewed and our choices are wrong. And Sometimes, we need to call people out on that, so that THEY THEMSELVES can live fuller and better lives. It’s why the first step in every single addiction program’s first step is to “submit to a higher power”, whatever that may be, a value Roger Ebert, an affirmed atheist and former AA member said was essential. And it’s why we need to stand up and say that Brittany’s value system was skewed. She was a good person. We’re not judging her. But her values should not be passed down onto so many others who will take them into potentially dangerous directions. Sometimes the religious can be overly dogmatic, or come off holier than thou, but let’s not be so quick to demonize the notion that sometimes we need to help save others from themselves so that they might live fuller lives. Even if that notion has been skewed, and really hurt the gay community, surely there is still value in it when it is taken the right way.
I don’t think any of us have the right to tell a person in the advanced stage of an extremely painful terminal illness what the right or wrong choice is to make. I’ve had numerous dying friends and those who chose to hasten their deaths were not any more right or wrong than those who stuck it out until the very, very bitter end. No one is advocating suicide in most life situations. These are extreme end of life choices. Clearly we won’t ever agree on this but I know if and when I or anyone in my family is in her situation I would want them to have the right to have that final freedom.
Wow, I laughed and had tears in my eyes from sorrow – well written, to say the least! I have had a very close friend die of cancer and I want to choose the way I leave this world without suffering and hurting others. The United States is so advanced and archaic in healthcare.
I hope Journalists and Media Executives will set the tone for reporting all sides of issues instead of sensational headlines. When was the last time you heard of an aids scare – why so much fear?
Shame on Phillip Johnson and others who judge and push their beliefs on the public every day – we all don’t have to agree but I will make sure me and my daughters have the choice to choose our own birth control choices (abstaining is a choice as well), our personal health and yes, death choices in this County as well. Well stated Steve, “..it’s never proper to order others to adhere to your way of life en masse or judge them harshly as long as they are not hurting anyone else.”
As I anticipate the ending these awful election commercials, I welcome us all to evolve stop throwing judgements and mud at each other. And seriously, no gay man and donate blood – come on, that can’t be legal.
Now I am shaking my head no…..
http://www.cbsnews.com/news/experts-urge-lifting-ban-on-blood-donations-by-gay-men/
Yeah, gay men still can’t donate blood. It’s finally being reviewed, but….
Still, that’s the least of the issues when you balance everything above. I’m not sure what is so threatening about each of us making our own end of life choices and determining in life how and when we want to reproduce. Religious beliefs of all kind are fine but — how secular thinking or even atheistic beliefs being equally acceptable and then let everyone do what they choose on these very personal issues?