Life and Death

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.

06.01.14

by notesfromachair

Grief Counseling

Mourning is very personal, yet it is unflaggingly universal. Not how we mourn but the fact that we do. How we choose to do it is a whole different story. Well, actually, many different stories.

The HBO broadcast of The Normal Heart, coupled with the death of Maya Angelou and our seemingly bi-monthly mass murdering spree by a mentally ill young man with gargantuan firepower, made this past week feel like it was all about death. Which meant it was really all about life. Or, to be more accurate – how we all really feel about our own lives.

No, this is not a greeting card homily because Hallmark, American Greetings and the like do not specialize in those kinds of phrases or in short, tightly written sermons that speak to our true thoughts and issues. Can you imagine that?

Too bad they’re gone but you got to admit, someone like you was lucky that they even talked to you.

If they were so great – how come they’re dead and you’re not? Hmm, maybe you are better than you think.

OR my favorite —

Live it up because if someone as fantastic as her or him died, you clearly will not be living forever. In fact, obviously you are already dead – inside.

I could go on but I won’t. Or maybe you want to make up one of your own?

___________(fill in the blank)___________

Or you can always count on someecards for something wildly inappropriate.

As playwright Marsha Norman confided to me decades ago when I was working on the film version of her Pulitzer-Prize winning drama about suicide, night, Mother, there is nothing wrong with gallows humor when you spend day after day around death. In fact, it’s necessary.

Still, it’s easy to feel as if all of this stuff is happening just to you, isn’t it? Or at least more deeply to you. For instance, aside from all of the above indignities in the past week I also heard about the passing of a lovely young woman in her twenties who was the wife of one of my former students, the brain cancer diagnosis of an old friend, and various other serious illnesses involving both my parents. Add to this all the dredged up memories I have of all of the young men my age in the 1980s who literally disintegrated before my eyes from complications of AIDS that were, ironically, brought to life so accurately in The Normal Heart, and you could say I was leaning heavily in that direction and starting to lose it. In fact I did lose it – meaning broke down and cried from the grief – for about 10 minutes – out of the blue – the following afternoon. (Note: Don’t fret. I felt a lot better afterwards).

The Normal Heart hits close to home

Oddly, it was another death – that of the writer, poet, actress and activist Maya Angelou several days later – that really brought me out of this. It’s something different for all of us, right? The only thing you know for sure is that if you are really participating in life, something will indeed not only come to rip you back into the only rat race that we have but to make you feel inordinately lucky to once again retain your rodent status.

I was 14 years old the first time I saw and heard Maya Angelou speak and it was on The Mike Douglas Show, a nationally syndicated talk show out of Philadelphia that I promise you no other 14 year old boy in my neighborhood was watching at 3:00 on a weekday afternoon. Still, that’s what made Ms. Angelou so riveting to me – she was different. All 6 feet of her, dressed in some colorfully patterned dress from head to toe – her voice booming in full articulate sentences as she spoke about her loneliness as a child and the brutality she endured and held in – until she finally found her voice. She then read a passage from her book, I Know Why The Caged Bird Sings and all I remember thinking is, Wow – she wrote about her life and all the secrets she had that made her feel alone? Hmmm, maybe one day if I get up the nerve, which I probably never will, I can write about what’s happened to me and feel better about things and, well, get recognized too- or at least feel less alone.

Phenomenal Woman

Oh, of course all writers want attention and to get recognized. There’s nothing wrong with that. And no – I am not comparing my life to a woman as accomplished as Dr. Angelou, who was raped at the age of 7 by her mother’s boyfriend and who then did not speak for six years because she felt responsible for his murder by other family members who had found out from her what he had done. Or, perhaps, in some small way – I am.

What I began to realize – decades later – (and still have to remind myself of) is that this is, indeed, what life, and death, are all about. That small connection. Maybe only a tiny similarity but a connection nonetheless. It’s also what the creative arts – both great and small (Note: is there small?) is about.

You never, ever know who you will reach with your little story, do you? Yes, that means you. No doubt Dr. Angelou did not write Why The Caged Bird Sings thinking that some young, Jewish gay boy in Queens would be helped by it. Or perhaps she did.

Who are you reaching today?

Well, none of that really matters, does it? What’s important when we think of people like Dr. Angelou is not if they intended to speak to us but how they spoke to us – in what way – and what they left behind that to us makes the greatest sense This is also the case for our friends and loved ones. It’s how they live on and how we manage to go on.

How did they touch you? Help you to understand life? What did they inform you of? Enlighten you on? Entertain you with? Were they honest? Did they tell the truth in life and in art – or both? Or neither? Do you?

And finally, when all is said and done – what one thing did they leave behind with you? Not with the world but for you – yes you. For as lofty as it might sound, you are the world they leave behind.

If I learned early on about the power of speaking the truth from Dr. Angelou, I was taught the real value (actually, necessity) of speaking your own truth from the deaths of so many young, dear friends and colleagues I lost from AIDS in the period depicted during The Normal Heart.

And —

…that I would gladly agree to spend the rest of my days never speaking one ounce of my truth in return for being able to bring them all back and to have had that period of history erased is, of course, the ultimate paradox of life.

Alas, it’s not that easy

So here we all are – faced with a world where everyone’s actions and deeds and truth speaking do matter. Never has this been more clearly seen than in the recent events at the University of Santa Barbara, or at the Boston Marathon, or in Sandy Hook Elementary School – or at countless American locales each year before them.

One cannot pretend to have known what was truly in the heart of our most recent mass murderer in Santa Barbara – 22 year-old Elliot Rodger – despite the vast human wreckage, extensive written manifesto and plentiful You Tube postings he left behind. Perhaps that truth was a mystery even to him and is the very fact at the heart of his actions. On the other hand, it might be much more simple – something that brings to mind one of the most memorable quotes I can recall from Dr. Angelou:

When people show you who they are, believe them; the first time.

Be ready for the mask to come off.

If nothing else, this brings to mind the imperative of really listening. Not only to the people we care about or are paid to listen to but to each person with whom we come into contact. I usually learn the most from moments with people from whom I don’t anticipate learning anything at all. Just as I have often been hurt the most by those from whom I never would have expected such behavior.

Yet every so often you meet a person you adore and you get to spend time with them – and even love them for a period of time. Sometimes it’s a short time and sometimes it’s a lifetime. It can also be from afar, or even up-close but not personal enough. And then, suddenly, they’re gone.

No matter how many greeting cards you get, tears you shed or words of wisdom you read or hear from concerned relatives, friends or anonymous bloggers — It’s hard not to miss that. Or them.

Eating pizza helps. Though certainly ice cream or cookies are a good temporary fix, too. You do what you can. And then try to have some fun again.

notes from a chair

Tag Archives: AIDS

Life and Death

Grief Counseling