Cerebral fluid should be clear. Hers was orange. Orange or reddish tint indicates the presence of blood. Drugs (heparin, a sedative, others) that hung from the stainless steel drug trees were clear because they were diluted in saline. Her skin was pale. Her hair was brown, clumped and darkened in parts by the aforementioned cerebral fluid and blood. From the window in her room on the intensive care ward, I could see the snow outside was dirty and gray, this January (2010) had been more rain than snow, but a cold front had just moved in.
I have been in hospitals. Births. Surgeries. Visiting psych wards. Accompanying my mother to chemotherapy. In high school, I worked in a hospital where I would take food to addicts and the elderly. But never anything like this.
My friend was not moving. Not five days before she complained of a headache.
"Her brain," her husband said from behind me. "The clot took her brain."
Statistics vary, but it is estimated 100,000 a year die each year due to blood clots. 64,000 people die per year of colon cancer. 500 out of 1 billion will die from taking 2 aspirin tablets. These are not random events, there are reasons, even if we don't know what these things are. These things happen in a way that appears random because we do not know better. We call it not fair. A tragedy. A miracle. A blight. A gift. A curse. A blessing. Those words are only true as they describe our perception of the events more than the events themselves. Reality is different. Reality has reasons. Our perception of events is not how they are. As the saying goes: the map is not the territory. This is harder to remember than it appears.
Her name was Dusty. Her husband was Robert. She had kids edging into adolescence from a previous marriage, but he had been there long enough to have changed their diapers.
When Amanda, my wife, and I arrived at the hospital, Rob reiterated what happened for the sixth or seventh time.
I am not a neurologist, but I knew what that meant.
Dusty was in a coma. Rob said there was a solid chance of survival. But a clot in her brain. It meant even if she survived, there would be damage. Oh, sure, we have all heard of people waking up from these. But this isn’t TV. This is a hospital in Janesville, Wisconsin.
The cooling systems had frozen on the MRI machines, preventing more analysis. There was some talk of transferring her to the medical school in Madison, but no one wanted to take the risk of driving her in an ambulance. To test her responsiveness, they would turn off the sedative and wait. Eventually, she would move, but there was no purpose; her synapses firing off in cascades. In order to keep her from moving too much they put her back "under" and turned up the blood thinners.
Sometime the previous week, she posted on Facebook:
When her husband called for me, I had to check the date. It was January, not April Fools’ Day. It would have been a good joke.
I don’t remember meeting her. I just remember her dating my friend Rob. He met her at Perkins, a crappy restaurant where she worked.
After we did meet, she never really left, even when she moved to Arizona with her then-girlfriend. (The related vocabulary includes "bisexual" and "polyamorous".) She liked to argue, which was more fun for me than some others. She was...I will not belittle her whole by listing adjectives.
She was a friend, yes; a confidant, yes; and a collaborator. We wrote some music together in the past and were working on more. We were making some progress. At least I think so.
She fit in my small group of friends. Now there is a space. There is a missing part. If I could gesture through the words with my hands it would be her shape among all the others. Her shape just cut out. Gone. Just. Gone. Reader, you have friends. You understand. When you have a close friend it’s a type of love. I hate using that word but that is what it was. Platonic love.
We were not alone. Could I be strong for my wife, as well? Dusty was Amanda’s friend, too. We were with Dusty and Rob more than our families. It is not like I hate my relatives. But there is a contractual obligation to their attention. It gets you access, like being a friend of a friend of a famous person, but that’s all. In reality, who you are is only so important. What you choose tells me more about you than any bloodline, hereditary trait, cultural bias, or other adjective.
I realize this is a very white way to look at it.
With a friend, you choose to be near in the stressful moments. You choose to help them. And the choices you make are most important. You choose to be with your friends when they walk through the fire. You choose to be there as much as you can bear and then a little more. You choose to stay up late and talk with them and go to work the next day. You choose over and over again until even people who do not care for you are worried. You choose to create a network that seems omni-present and benevolent. Serious friendship is serious.
This is for friends. Not because they share some DNA but because they need and we love. And so I stayed Saturday night and Sunday in Janesville, running errands and simply being there. We cleaned her house because Dusty would want to come home to a clean house. Wouldn’t she?
But I wasn’t there Monday, I was at work. Rob sent a message to me. The MRI was back on-line. The scan of her brain wasn’t good news at all. All they could do was prep for organ transplant. I broke and cried in my office.
Before I could compose myself, I got a call from a client. I was working on a freelance job and they wanted to meet this week. I pushed them to Thursday, trying not to sound too sad.
Our daughters, seven and three years old then, had experienced death as many children do: through pets. The first death I remember at all was my great-grandmother. But she was distant and I don’t really remember her well. I do remember the way she undercooked eggs in lard and the tobacco drying outside her uncomfortably hot house. She had indoor plumbing installed in the mid 1980’s.
The first vivid death for me was a dog hit by a car. I went to him after he had died. I picked him up and brought him home over at least a half mile. I was in 8th grade, perhaps. He kept twitching; electrical signals were still getting through, I know. I was a kid then, so it freaked me out when I picked him up. Since then I’ve had several dogs and cats and fish, a father, distant relatives, grandparents, and acquaintances die. Last one was a year before, and I didn’t know her well. Drug overdose, I hear.
About the kids: it’s not what you think about when you get a pet, but part of having an animal is they die. We humanize them, give them names, share a place, and live with them as they grow old. We humanize them and compress a human life to something tangibly brief. The kids have had 3 cats we had to put down. They are dead and buried in their grandparent’s yard. The kids don’t believe in heaven. They’re happy kids, just the same.
So we told the kids what was happening to Dusty. That she might be dying. I told them to be nice to Dusty’s kids, and we all might be sad for a while and it’s OK if they are, too. She was a second mother, of sorts.
"Like Amy?" the youngest said. "I miss Amy. She was a good kitty."
They took the news well. The youngest probably won’t remember her. That makes me sadder than it rightly should.
After work Monday, Amanda and I went up to Janesville with a couple more friends. When we got there, even more of her friends were there. Dusty had made all these friends when she went out to sing karaoke. The doctors said she could hear, still. Maybe that was true. And so Amanda and the karaoke friends sang to her. Songs they used to sing together.
They sang in her room. I was in the waiting room, working. I preferred to be alone; I didn’t want to cry in front of them and I knew I would if I saw her there lying there, dying.
Just three months before she married Rob. I officiated. They wanted a secular ceremony. I obliged. Both Dusty and Rob were/are atheists, and Amanda and I were/are, as well. We agreed not only on religion’s falsity but on the dangers of (even disorganized) religion. So, while she was dying, some people prayed in her presence but there were no religious rituals involving her.
Rob’s father wanted to pray over her and anoint her. Part of the issue was the specific ritual desired involved touching her head. Given there was a blood clot in there that could be knocked loose made touching her seem unwise. Even if the prayer ended up as harmless, maybe it would have helped them. Maybe they would see a dying mother and wonder why their god would take her. There really is no point. They did not wonder. It’d be just part of The Plan®. Objection raised and refuted by cliché. The other part is she wouldn’t have wanted it, anyway. Of course I don’t know. She might have, but I have no evidence she would.
I do not often talk about my atheism, especially in mixed company. It is simply a fact about me. There are reasons, yes. The reasons are not without importance. But, until I lay those reasons out there, the fact I do not believe tells you more about me than it does about the existence of a deity or even my reasons for my lack of belief. Furthermore, it does not tell you as much as you might think. Some people have a hard time believing I am an atheist because I am devoted and loving to my friends and family. Such ideas tell you more about those people’s moral center than my own.
For her, and Rob, it was and is a matter of principle. To hear Rob recount the above story about the wanted prayer, "And [my] dad came in and said, ‘As soon as Don gets here we’re going to do the prayer.’ I told him absolutely not. And [Dusty’s Grandmother] said, ‘Well, her dad is on his way and we’ll see what he has to say.’ And I told her if she did not respect our wishes on this, she could leave."
Atheists in foxholes: they do exist.
But believers, they exist too. And they presume to know. They presume to know touching her head wouldn’t hurt; and if she was healthy it probably would not. They presume so much about how the world works and how others work; like all ideologues (even atheist ones), they presume more about it than is proper because they think they have special knowledge or a framework for the world. And people die because of it.
Tuesday Haiti went to hell. It was going to be bad, you could tell. Third-world infrastructure and slums are usually not earthquake-resistant.
Back to the above, what business would a god have answering a prayer for my friend and not the hundreds of thousands in Haiti? What deep arrogance it would be to assume a deity would?
Two-hundred thousand feared dead. I should feel more grief for them. But I don’t. And I understand if they did not feel much for me, either. They might say, "He has lost a dear friend and that is unfortunate but I need food, water, shelter, and medicine for me and my family to keep them from being lost as well."
Yes. Of course. Tragedy is common. Sri Lanka’s tsunami, typhoons in Myanmar, earthquakes in Iran and China, hurricanes in New Orleans. War. Famine. Death. Rape. Trans- and homophobia. Pol Pot in Cambodia. Anti-vaccine activists. Recession. Glenn Beck. Oppression. Jay Leno moving back to the Tonight Show. Genocide. Smoking. Large bonuses for Wall Street. We all know about these things. Even the most ignorant know they are not the only ones in the world and their sadness is not singular.
All of us read or hear about these things in stories. We see some of them in pictures and films and television. But these are maps, not the territories. These are not the true horrors of the world. We do not smell the stench and feel it as we were there.
That full feeling a given situation is what I call fidelity, as in a stereo’s fidelity; the fidelity between what really happens and what you experience and how you view the world. We should constantly strive so what we feel and believe accurately reflects reality.
No 5 dollar text-message donation will be the same as tending to the wounded. No story or television image will be the same as living in the tragedy. We should work towards feeling and experiencing things as they really are, towards having fidelity between the world and ourselves. Of course we know that. Of course. But being there in a tragedy is wrong, too. It would be far more effective to pay five dollars to an experienced and effective person than to be an incompetent on the ground. The best way to help is not always what it seems. Sometimes the best way is the easiest way.
Powerball jackpots are approximately 1 in 80 million. Dying in a domestic hijacking incident is a hair under 1 in 17 million. Dying by the US government’s hands is a little more likely at about 1 in 3-1/2 million. I wonder why we fear one more than another. 1 in 600 hurt themselves playing golf.
It was late Tuesday when I talked to her. All the other visitors had left, Amanda too. I was alone with Rob and Dusty.
I asked Rob for a moment alone with his wife. He said, "of course," and left the room only to sit in a chair in the hallway just on the other side of a glass wall. I almost laughed because it was like he didn’t leave at all.
I walked around the bed so I could not see him, to at least feel like I was alone with her. I wanted to talk to her. I wanted to say something to help her if she can hear me. What could I say? Should I have told her something important about me? Something I was going to say but never got to?
It would be wrong to use her as an unwilling confessor; she could not give permission or absolution. Dying doesn’t give anyone magic powers. The person who lies dying is not a therapist. How selfish it is to see counsel or ask for forgiveness here? To prattle away someone’s last hours with your concerns?
What would you say to make this moment poignant? What would you say, if she wakes up, she’ll remember and say, "Thank you. That helped me." Or even if she doesn’t...
When I tried to talk, random noises came out. No proper words. I slowed down. The tricks don’t work. All I have is words. I am not a doctor, I write for a living. All I have is words and I could not get any of them out. All I have are words and I don’t believe in writer’s block. Some syllables came out in spits, starts, and sobs. At the end, I uttered the only intelligible thing, "Goodbye."
It’s probably the only thing that matters.
Sometime in the night Dusty had a stroke. Was that Tuesday night? Monday? I cannot remember. Some night in the middle somewhere. That was the start of the decline. Friends and relatives came. Ex-friends came, made amends, realized the petty natures of their disagreements. They asked her for forgiveness. Her children said goodbye.
Rob, by all accounts, did a fantastic job keeping everyone informed via the Internet. It was simply the most efficient method to contact those who wanted or needed to know. It was either that or phone calls. When my dad died, how often did my mother repeat the same gory details to countless "supporters"? How often would you want to repeat the same horrible news?
In the waiting room, among friends, the obvious questions came up among those who could stomach the conversation. Most people said they want cremation of whatever remains of a well-donated body. This makes sense in a way, but I want to be frozen. It’s a long view, but I take it. I don’t know. I’m torn. How about not dying in the first place? How about no oblivion? Seems like magic, right? But there is no magic beyond what Penn and Teller practice. If there is some reason why a mind cannot be (re)constructed after freezinng it then we have learned something new about the world. Everything we know says minds are matter and if they are made right, they work. If they are made right and they don’t work, we learn there is some other property of minds make them what they are. It might be proof there is something else out there. Or it might be we're incompetent.
I hear people have gotten divorced over cryogenics, where one or the other spouse wants to be frozen and the other does not. Even if you would not want cryogenics for yourself, why would you not want to be possibly remembered and loved in the future? I don’t know. Seems rather selfish to make someone you love choose to die forever.
Even if it turns out such resurrection is impossible and my neurons have turned to a (very cold) soup, then what have I lost? How am I any worse off than I would be burnt or left to rot?
That argument echoes Pascal’s Wager, admittedly. Cryonics is a small chance but it is a chance and, given a long enough timeline, it looks possible to be a good one; at least compared to no chance at all. However, reality doesn’t give a damn if you believe in it or not. Whoever believes in The Secret can go eat shit out of their trousers; it’s not going to make the world perfect even if they believe it’ll help with their entire being.
Again, given the timeline, it has to be more likely than a blood clot in an otherwise healthy woman. And yet, here we are. Things do happen.
From what I’ve seen, there are several kind of health-care professionals. Primary categories, though, seem to be those who hold out hope and those more cynical. Some would say "realistic." Probably they are both wrong.
After the stroke, when they cut the sedatives she would move, but there was nothing purposeful. Nothing beyond instinct. She would shrug her shoulders, open her eyes. That’s the worst, emotionally. When they are looking at you. When they are empty when they used to be so full of wonder and wit. Her body was a puppet of a dying brain.
What is she feeling? Is she even in there? Even if she woke up, would it be OK? Just stop being in-between. Please!
Wednesday, another neurologist talked to Rob and the rest of her family. I was not there. "I’ve seen worse get better and walk out," he said, or something to that effect. Hope tore at me. At us. Rob had told everyone it was all over but for the dying, but now there was some possibility.
She might make it? Of course she might. There were still unknowns. Hoping for a miracle isn’t the way to make those happen, is it? What cruel person would tell someone that’s "come to terms" to go back, because it might, with a sliver of hope, come back.
Then he had to bring heaven into it. "She’ll go to heaven," he said and I saw the Christian privilege so clearly, just the inverse of the blurriness when it’s my own. Does that make sense?
It hurts. Even now. But it is not important. Is it?
If she lived, she might not be able to sing or speak. She could be the next person a member of Congress diagnoses through his television.
But the worst was not knowing. Not knowing what to do. Yes, she was clear about her wishes for such circumstances; yes they did talk about these things; and so he knew what her wishes would be. But it’s different, here. She might be in there. She could be listening right then.
Rob and I argued over Dusty’s sedative-enhanced reposed body. She could still be in there, yes, and if she is there are technologies that might let her communicate, I say. If she becomes non-verbal, she would still be able to communicate. If she’s still in there.
And I was wrong for arguing that. Not morally wrong, or even factually inaccurate, but the question was moot. The answer is irrelevant because the question was invalid. I wanted to argue because it helped me to distance myself from what was happening because she was not in there. There was no evidence she was; there was no proof.
I failed. I, too, let my hope cloud truth.
When I said, before, that I knew what it meant whe she had a clot in her brain, I was kind of lying. I knew, intellectually, of course. I hoped it would break up harmlessly. Or the blood thinners they were pumping into her like saline would help. I do hope. And I let hope cloud what I did and how I saw the situation. We cleaned her house so she wouldn’t have to deal with it. I fucking hoped. We argued, discussed, and cried. And I failed, still, because I didn’t have fidelity to reality.
I wanted to be hugged and comforted. When he cried, I never touched him. He didn’t want to be touched, but I wanted to comfort him and to take my own comfort by comforting him. But every time someone hugs him he winces. I don’t want that.
Starting Wednesday, he started to stutter. The prescription I picked up for him helped a little, but he was concerned about clouded judgment. His judgment was fine until it was fogged by the doctor. The doctor pushed us back to denial.
I needed to go home but I didn’t want to. I had work and a client to consider. And my family. But I wanted to be there with my friends, both the living and the dying. Amanda arrived to take me home. We were both sad.
An acquaintance, a guy named Allen, was at the hospital. He lived in Janesville and met Dusty at Karaoke. He promised to stay with Rob for the next couple days. He promised to be there and do what needed to be done when it needs to be.
Then I went home.
Dusty and I worked for a few months together. We assembled yearbooks, which was even less exciting than it sounds.
Driving home one day, a storm approached from the northwest. I wanted to watch the lightning spark across the silent dark sky. We found a hill overlooking part of the town and just sat there for 10 minutes, watching the lightning and listening for thunder.
I don’t think either of us said a word until we decided to go. Just silence. I didn’t tell her but then I was sure she was a friend.
Friday, Amanda picked me up from work and we head right up to Janesville. Allen spent Thursday and Friday during the day with Rob. When we get there, Rob dismisses all the family except Dusty’s mom, who stands watch over Dusty, waiting.
He said Saturday they would take the breathing tube out. Saturday she would probably die. The organ donation team was in place and ready to take whatever they could.
Just the friends, then. Just those chosen and who could be there.
The DJ for Rob and Dusty’s wedding asked us to come out to some bar where they do their thing. They were doing karaoke.
Rob came with us. Amanda and Allen and Naomi and other friends sang the songs Dusty liked. We cried. I didn’t ever want to see people sing karaoke again.
After we couldn’t stand it anymore, Amanda, Riley, Sara and I went back to the hospital and slept in the waiting room. Rob slept in her room, if he slept at all.
Saturday. About 11:00 AM. They took out the breathing tube and she kept breathing, snoring, as if this was a deep sleep. There were no sedatives.
Amanda combed Dusty’s hair. This was the most touching and terrible moment: watching my wife comb her dying friend’s hair, trying to clear out the clumps of blood and fluid.
The organ transplant team waited for her to die. But she wouldn’t. She kept moving. She opened her eyes, which hurt and was creepy at the same time. I wanted her to wake up and say, "Hey! How you doin’?" like she did. I wanted her to wake up and tell Rob she loved him and she missed him and everything was going to be OK. I wanted her to wake up and ask us what the hell were we all doing standing around her and she had a dream and we all were there. I just wanted her to wake up.
She wouldn’t do that, either. She just kept breathing.
There is a protocol that says after a certain amount of time off the ventilator certain organs are not viable. Those times went by and kept on and on. Hours. They could not take her liver. More time. Then her heart. Her other organs.
But given the choice, again, between nothing and something, what is the correct choice? I hope the protocol has more to do with science than fear of lawsuit. I am cynical enough to realize that might be an uncalled-for hope.
Amanda, Riley, Sara and I went to lunch and left Dusty with Rob and the rest of her family. Her kids were with their bio-dad.
While we were at lunch, she stopped breathing. I don’t read into this. Someone said later she wanted to be around just her family. I disagree. She wasn’t there to know what was going on or to choose when to stop breathing.
While we were at lunch, the alarms buzzed in the room like they do, but with more intensity. We got a phone call. It was over. She was done.
We picked up Rob from the hospital and took him home and he went into his room, alone, which is exactly what he had told us he wanted. We left him be in his room, but we didn’t leave the house. Some of us needed to be there, just in case he needed us.
We went back to her room to get some stuff, that we had left behind. Allen had materialized sometime in the last few hours, and he stayed at the house.
Her body was still in her room. Unmoved. Her leg poked out of the blanket. I think we all touched her and said goodbye one more time. She was cold. Did one of us cover her up? I hope one of us did. The symbols matter, I guess, for the living.
The hospital took some of her tissues, her hair for cancer patients’ wigs. What they didn’t use was burned up with the rest of her. Oblivion.
Fucking horrible.
Two months after she died, I ended up finding, under a seat in my car, a discarded box from her wedding garter. I cried.
"Until death do you part."
I had officiated their wedding. I don’t know if I will do another.
It’s fucked up--and I don’t know any other words other than those--her marriage to Rob is now considered a success. It lasted until death, even if that was only three months. Less than, technically. If both of them had lived until 62 or 93 rather than 31, the result is the same. Should death be considered the criteria for successful marriages?
We live longer now. Let us run out that trend some more and do a thought experiment: would you really want to live centuries with the same person? The same job? Perhaps a relationship, no matter the type or duration, is successful if it makes you a better person at the end of it.
The problem is "better" is a vague word of the worst sort.
But I can tell you one thing, if you just finished an amiable, peaceful divorce and say you and your ex- are both wiser and better people now, then I would consider that more of a success.
Not this. Not death. Death may be natural, but so is cyanide. We killed smallpox; why not kill death?
About 34,000 a year die in crashes in the US. 36,000 from the flu. 40,000 from breast cancer. 33,000 from suicide. 27,000 from accidental poisoning.
So. Why? If there are no miracles or plans, why did she die? The blood clot in her brain. Why did she have a blood clot in her brain? I don’t know. The doctors said was her only risk factor (as a 31-year old fanatical non-smoker in decent health) was her birth control pills. Her generic birth control pills had been on the market for decades. The pills with the known risk of blood clot listed on the insert everyone looks at and probably throws away.
And she took them. She’d even taken them before. Millions of others take these pills with no effect other than the intended. I am not saying those caused it, just that was the only known factor.
She didn’t even take them for the birth control function itself.
That’s scary. Viscerally scary, right? She didn’t take any pills involved with class-action lawsuits. She took them as directed. She took something had been around for decades. Then, something in her body reacted and caused the clot. I, or the doctors, don’t know tells you...well, you know. It tells you nothing about the clot. It tells you only about us and our imperfect knowledge instead of the thing itself. Someone is the 1 out of a million and there are reasons for it every time. When we do not know what the reasons are, we should not make up untestable reasons. That is something that can be known and should be, if only to prevent another death.
At Dusty’s wake, my wife said, "I don’t care if I’m a grandmother by 40. Our kids are not taking birth control."
Reader, I am sure by now you realize I disagree. Grief gives no insights on the world. It does not increase the fidelity of reality.
Except for the specific processes that occurred, there is no objective and independent lesson to be learned for me, for Rob, or for anyone. She didn’t die because her life had to mean something to me or anyone else. All her death can mean is what we say it does. It is only because this life is arbitrarily meaningless that it is so subjectively meaningful. We do not matter and that is terrifying and liberating. You can see pictures of the Earth from space and it is a speck in a dust beam or it is a bright-ish planet in the Martian sky. Our home is invisible to denizens around other stars. Even our galaxy can’t be seen to those far enough away.
But we are here. We are here and we have got to define "here" in the proper scope: to what we can define. That does not mean I don’t wish there was more but what I wish doesn’t make it so. Because I wish she would have called any given weekend since and yet the phone hasn’t rang.
I don’t think I was a good enough friend to her. She doubted herself and her standing among friends. Words would have helped, perhaps, but actions cement such things. I hope something like the care we give to her memory will be OK. She was a good friend and she is a good memory. That is good enough. Memory is all there is.