Monday, November 3, 2014

Brittany Maynard

I am irrationally angry about Brittany Maynard's death. As a theoretical debate, I have always been on the side of death with dignity... until now. She said a few things in her video that ignited a rage in me that I cannot explain. I should feel compassion, I should respect her right to choose in her home state, I should say I do not know her and that it is none of my business. But, it is... as the widow of someone who battled a fatal illness for years, it is very much my business. What set me off? Two comments... she complained that she had gained weight because of the medications she had to take and that her seizure activity was increasing. As I watched these remarks I could not help but think of my precious Sue... the years she spent fighting seizures of every kind. A woman who would bike 20-30 miles a day reduced to someone who could barely walk across the room. I think of Sue in her "bubble" after the fire and the precious times she would be lucid and wink at me. I think of the woman I loved who fought for every last breath. Sue knew she would die... even worse she thought she would be in a vegetative state for the better part of a decade as her father and all of his brothers and sisters were. These thoughts plagued her. Yet, she FOUGHT for every last experience, every last moment, for time with me and those she loved. Those who knew her can vouch for the power of her smile, the infectious properties of her laugh, the way the light in her eyes would dance when she was excited. Her stories were legendary. You knew that the majority of them were voiced in hyperbole, but the passion behind the story made you not care and choose to believe it. She could have sold you the Brooklyn Bridge. I think of everything that made up my angel... and I weep for those Brittany left behind. Knowing that we lived every second to the fullest and cherished time as it slipped away is a huge solace in her absence.

Sue was taking upwards of 30 pills a day and like Brittany gained weight because of them. This was not easy for her. She was once a vibrant, active person and that was not the physical state she was used to. There was a song out at the time, that ended up being sung at her memorial service, entitled Moments by Emerson Drive. It is a man reflecting on his glory days, the things he used to be able to do. The song hit home for Sue. She mourned what she could no longer accomplish, but her indestructible spirit would quickly bounce back and celebrate the things she could do... we found new things... When she could no longer do pottery, or paint, or draw she took up photography. She adapted. She allowed those around her to find new joys with her. Those struggles and experiences are precious gifts to those of us who loved her and were loved by her.

If Sue had asked for an out... of course I would have honored what she wanted. I would have driven her to the dr and picked up the rx myself. That is what a marriage is all about, putting the other person first. I will forever be grateful that she did not. Signing a DNR and pulling life support plagued me for a very long time. I knew it was her wish and the right thing to do... I will never regret it, but it weighed heavily on me. I cannot imagine the crushing weight of being on the other side of death with dignity. I would have done it for her, without blinking. She was my heart and her happiness was all I cared about. I so wish I could thank her for fighting... for the extra time we had when she could have given up. She had enough meds here to end it at any time. She could have easily made that choice. She was stronger than I.

Saturday was the anniversary of Sue and I meeting and Tues I will see some of my in-laws for the first time in a couple of years. She is definitely in the forefront of my mind right now... maybe that has made me overly sentimental. Perhaps I am simply being selfish, but this bleeding heart left wing liberal just changed her mind. Brittany's pleading of her case convinced me how precious every single second with a loved one can be.



5 comments:

Matt said...

Here's what I take from your post: you are upset but if Sue had asked to end her life you would have agreed with her, and yet she did not because she was "strong." Is it strength that keeps us going, or fear, or foolishness or any other number of adjectives? Why do we feel the need to create these stories in the first place and why do we hold them in such high esteem? Brittany chose to end her life and possibly the onslaught of symptoms was too much for her to think about--how far is too far? How long should you hold on before you held on too long? In his book, Heaven's Coast, Mark Doty states that in the end, his lover (Kevin?) needed to be administered morphine because, as the nurse told him, humans have an instinctual urge to cling to life. The nurse gently upbraided Doty for waiting so long. I write all of this to state that I don't know about Brittany because I'm not her and not knowing her story keeps me from commenting on her decision. There's something sacred about being born and there's something sacred in dying and when I write sacred I mean that it's beyond me, just out of reach. Your story (well, Sue's story) is the antithesis of Brittany's. I didn't know Sue, but she seems to have understood exactly what was going to happen to her, having witnessed it before. Maybe this knowing gave her the necessary courage to continue, or maybe she just saw things from a different angle. It seems like Brittany's decision opened up something in you and maybe this calls for some questioning on your part as opposed to reacting. It's like when my dad was dying. I wanted him around and I wanted more time and yet in the end he wasn't even really there. Maybe we are selfish creatures at heart and the urge to remain and to have someone remain is nestled somewhere in our subcortex and our higher functions place a moral value on it. I don't know. Maybe Brittany should not have gone gently into that good night, but maybe it's the night that really bothers us all.

Superduke1 said...

Is this reactionary or a thought process?

I do not know that I would have agreed, but I would have bent to her wishes. She had glimpses of what was to come... it is a complicated situation. She was not with her father nor his family to see the decline and only knew what she read in medical reports. She was able to visit a couple of times so had snapshots of what life would be like. She knew enough to be petrified.

I did not say Sue was strong and Brittany was weak. I said Sue was stronger than I, as I attempted to end my own life after she passed away. I used the meds I had mentioned in the previous sentence. At the time I was not processing in a rational head space. I simply knew if i did (a) the reaction (b) would be seeing Sue again. The rest was an intangible blur. (not comparing dwd to what I did AT ALL)

I normally buy into the pc mindset that it is your right and speak softly to avoid offense. The irony is that softness tends to piss off a whole new sect. This "process," for me, is the first time I have landed on the non pc side of an issue. It is shocking and unnerving.I am still processing, but I can say I am forever grateful that Sue said a few more moments with me were worth the pain.

Matt said...

I don't know that your post is reactionary, but it does seem like a reaction of sorts based upon past experience and also based upon your reading of her last post. As you stated, watching her video hit you on a visceral level and yes, I would call that a reaction. I didn't read about the weight gain, but I read about her fear of losing control. Can you make one person a poster child for anything? I suppose that the answer is, yes, you can, but the issue shouldn't be tied to one person's act. What is the criteria for dying with dignity? Well, you cannot die just because you don't want to get fat and you cannot die just because you'll lose your hair and your "quality of life" will erode. You can die for these reasons, but that's not death with dignity, at least not death with dignity as its understood by the State of Oregon. Brittany felt relieved that she had the medication on hand to end her life. She knew that she could change her mind and feel good about that choice. She seems to have, from what I read, made a reasoned decision when considering the size of the tumor that resided in her skull. I don't imagine that any blog post could ever fully articulate the pain, sorrow and anguish that Brittany and her family were going through, I agree with your comment that it is a complicated situation and the more that you know, the more ambiguous that situation becomes. To be honest, I certainly never intended to imply that you were saying that Brittany was weak, but when we read about the struggles that Sue made, Brittany at least seems quite shallow, at least the way that your essay frames her--if you capitalize "fought" I'm guessing that you want to draw attention to the fact that unlike Sue, Brittany never fought. But there are different kinds of fighting to undertake when it comes to death.I don't know what the "pc mindset" is made up of--weak-kneed responses to situations that require the jerking up of bootstraps perhaps? Maybe it's enough to say that you were fortunate to have a lover that loved you more than life,or more than a quality of life? Maybe you were fortunate because Sue was stupid for you? Maybe Brittany was dealing with a whole set of other factors. Maybe she was selfish and struggled with the idea of continuing pain and debilitation. I don't know, but what I do know is that Brittany (or anyone else) shouldn't be the stand in for the entire debate.

Matt said...

Hey Superduke,

I also wanted to add something about how cancer patients die. My stepmom told me that my dad was pretty much unresponsive his last two weeks on earth. He was around, but he didn't know anybody and then, before he died, he just totally retreated into himself. I remember being surprised by this news, but my stepmom said, "well, we read the literature that the hospice house gave us and we knew that death by cancer looked nothing like it does on TV". Brittany seemed rather fearful that with her young body she could "hang on" for a long period of time and she probably would have. My dad didn't actually die from cancer because he had a heart attack--at least that is what the coroner wrote. His body just couldn't hold out and I'm thankful that it couldn't because I wouldn't have wanted to see him and to have him not know anyone. I also remember my stepmother telling me how the change happened. My dad went to bed one night, said goodnight to his wife, and the next day he just wasn't there. It happened that fast and I can understand the anxiety that Brittany might have been feeling with regard to losing control, or reverting into something more reptilian in nature. Ultimately, I think that we have a hard time with death in our society and our medical establishment bears that out in its inability to let someone die. The establishment has to confront a "do not resuscitate" order and even then it will sometimes bypass this. I think that we fear death. Actually, I'd argue that this is the biblical perspective. I'm reminded of Arthur McGill's book on America as a culture that worships death in all the many ways that it works so hard to escape it. We don't like decay, or decomposition, or anything that stinks of ruin and so we facelift, lipo, paint our houses, keep our cars shiny because it's a way of keeping death at bay. We should talk about all of this over a beer, sometime.

Superduke1 said...

My father had prostate cancer. I held his hand for three hours after we pulled life support and morphine and propofol were pushed to keep him unconscious. I crawled into a hopspital bed and held Sue after we pulled life support, her fingers intertwined with mine, as I felt her heart slow and beat its last. Also with the aid of propofol to keep her unconscious for the end. I could go on with stories of my grandmother and literally having to push the crash team out of her room beacuse they did not want to honor her dnr. I get death, I get end of life, i get there is a time to stand up for them and let go for their sake.

I whole heartedly agree that our society is afraid of death and puts it off at all costs.

Heading out... but yes, beer, talk, and hugs soon! :)

Weird/cool to see you calling me Superduke. Typically a Rochester thing.