If you have been reading up to now, this will be a departure. This isn’t a theology or attempt at a coherent explanation of the universe. It is the ramblings I jotted down while struggling to find answers, reasons, justification, and comfort.
Today started well. Jane stayed up and administered the good stuff to Rod at about 2 AM. The nurse came in the morning and the pastor a little later. Rod was in and out of it. The coughing was back making it hard for him to breath and sleep. Outside of high blood sugar, his vitals were rock solid.
I went to the gym and got back with some yummies around 1:30. Jane caught me at the door wearing gloves and I made a quick right turn into the office. This was best for all of us. I ate my chicken peacefully oblivious to the business of the moment.
About two hours later, things got, well, bad. He claims he isn’t in pain, but something was clearly making him miserable. Laura was on the way out the door to the insurance agent and Rod didn’t want her to go. She stayed until he fell asleep and then ran the errand. Some time after she was back, Rod complained to Jane about chest pains which he thought was heart burn. Jane, being the sort of nurse that knows a thing or two about cardiac care, was clearly concerned.
Then bad went to worse. I could hear the badness from the office and emerged. It was about 4 PM and Rod was not only feeling terrible but actively calling for help. Laura stayed at his side holding his hand trying to comfort him. She called the hospice nurse and I took her place at his side during the call.
The nurse had a conversation with Laura and then Jane and the hospice nurse talked in nurse-speak for a few minutes. A new plan was hatched and Jane got cooking.
Over the next couple hours, someone was sitting within a few feet of Rod pretty much at all times. A couple times he seemed to be choking and couldn’t breath which he rightfully found very distressing. So did we. Other times, he hugged his chest like it hurt. His eyes were not focused at all. He didn’t see us even with his eyes open. He called for help but sometimes doesn’t seem to know he is doing it. He also calls out “Christmas” and a few other words that don’t make much sense in context or, well, at all. If he did try to speak, it is just slurred mumbles and gibberish.
Of course, we are praying for peace for Rod. For the first time today, he asked “why me?” It was, honestly, one of a dozen things he said today that we understood. Laura pointed out that this was the first time in the entire journey where he has felt even a little sorry for himself. Early this evening, he seemed to slip into a coma.
Curt came over this evening and we ate dinner that Jane cooked while sitting around Rod’s bed. As we talked around the bed, Rod seemed to calm and relax. I think our voices are soothing to him. His breathing is better now which I think is thanks in large part to Jane the chemist. She did “something” and about an hour later, he stopped choking. Now he breathes with difficulty for maybe 30 seconds and then not at all for 15 to 30 seconds.
Clearly something happened this afternoon. A resource we have contrasts the organ-by-organ shutdown typical of other cancers to brain cancer saying: “the brain, as a master circuit breaker, has the capacity to shut down the body in one swift motion, without taking it organ by organ.”
Sorry to end on a down note but I have no energy to put a positive spin on this. Frankly, we are preparing for a challenge. Thanks for reading (if you made it this far).
14 March (real time)
It is about 5 AM and I am alone with Rod. Jane stayed up to 2:15. Laura got up at 2:34 and just went back to sleep fifteen minutes ago or so. Rod’s breathing is slowed and more or less the reverse of what it was the night before. He breathes “normally” four or five times for about 10 seconds and then not at all for as long as 30 seconds. He calls out “help” in his sleep, scratches his head, and fidgets with the covers. He has called out the name of his brother, Theron, who passed two years ago, I think, after a relatively short stint with Alzheimer’s. Laura thought he was thirsty and tried to give him a sip. He bit down on the straw and wouldn’t let go but didn’t drink anything.
He doesn’t seem to know we are here. My experience volunteering at the hospice and as a chaplain has taught me differently. The person in the bed might not understand us, but they know that we are here and our presence can be a calming influence. People fear public speaking, being alone, and dying: in that order, I believe. I am happy that I don’t fear public speaking and I wish I didn’t fear the other two as well. I guess if I didn’t have these fears, I would be a superhero. I’m not a superhero and if I was, there are still those spiders that would be my Kryptonite.
The question I’ve been told never to try to answer is “why is he/she suffering now?” For me, the question is more about the purpose of this suffering. Rod is calling for help because he is in distress, right? It is the one word he seems to always get right. Ironically, I don’t think Rod ever called for help normally. He was the one we all looked to for help. He had the answers, the calm, the measured approach that no matter how complicated or emotional the problem, we could look to Rod for help.
But now he calls for help and there is nothing any of us in this house can do. We don’t even twitch anymore. Only Jane has the power of the chemicals to calm him. My powers are useless now. As a chaplain type, I provide spiritual, emotion, psychological, and sociological support and comfort. I have minimal power over the physical except when it relates to those aspects.
So, why suffering and why now? What purpose does this serve to Rod and to us? These are the questions we are never supposed to answer and, well, never say never.
The light has no meaning without the dark. The good isn’t good unless it is contrasted with evil. This isn’t punishment for Rod’s sins or even ours. This is the result of the human condition and that is all there is to it. It isn’t personal which is why we should never answer this question. It isn’t because the answer is wrong but because it is not satisfying. In our time of distress, we want a personal answer even if the answer is “because he sinned” or “because we did a terrible thing” or whatever else as long as our names are in the answer and tied to a specific action.
Rod Mulder is dying of brain cancer. It isn’t because of anything that this is happening to him except that we live in a fallen world. It is a philosophical and theological reality. Atheists can point to this time and say that this just proves that there is no master plan. I think people of all faiths can point to this time and say that exact opposite. There is a plan and even though we can’t understand the fullness of the plan, we can know that something went wrong. The fact that we know it went wrong means that we know that it should have gone right. Could it have gone right? I would say ‘no’ but that is a much uglier conversation.
No, I would suggest that without this time of trouble, we won’t value the time of peace. Without this specter of death, we won’t appreciate life. It is why young people allow themselves to be sent to war. They do not understand the value of their lives and they allow rich, old people to convince them to throw their lives away for causes that are always lies.
Death and the suffering that surrounds it must be. I really wish it were not so but I fear that it is. I obsess over my health and fitness partially because I wish to avoid a miserable and premature death. That is far from the only reason, but it is a little part. The buddhist idea that we can’t avoid suffering so we must rise above it–transcend suffering so that it doesn’t bother us–truly is the opiate of the masses that Marx warned against. No, we should not rise above it; we should be see suffering, evil, and death for what they are: wrong and difficult.
I am not saying that there isn’t beauty in this time or that it isn’t natural or sacred. It is, but it isn’t going to be pretty nor should it be. The writer of Ecclesiastes creates bookends for life in chapter three. He describes the edges as a time for peace and time for war, a time for life and a time for death, et cetera. We appreciate one because we know of the other. If death were peaceful, easy, completely without fear or suffering, we would not know the value of life.
The truth is that Rod’s suffering was short and even now as he calls out in his sleep, he isn’t suffering. I know this and even though it is disconcerting to us in the house, this is biological in every sense of the word. We were built by our creator to fight for our lives. This isn’t a choreographed Rocky fight or a WWF match or even the UFC style; this is a bar fight. It isn’t fair and it was over before it even really began. One guy had a knife, gun, bottle, or chair and the other guy never had a chance.
And just like a bar fight, it isn’t really personal. It feels personal, but it isn’t really. Maybe that is comforting in its own way or maybe not. There are two things in life that are not optional: birth and death. Every other aspect of life is entirely optional though most of us choose to do things like breath, eat, poop, walk, talk, et cetera. I find it interesting what people will choose to vicariously experience and what they want to experience first hand. Frankly, I think most people have those things exactly reversed. Having experienced a multi-course French meal and a meal from McDonalds, dude, why eat at McDonalds, right?
My point is that from the perspective of how bad this could be, we did it right and up until yesterday afternoon, Rod was comfortable, and loved. The last thing he said before the turn was about how much he valued his family.
Thursday night, Jane and Laura were off watching a show and Rod was sort of awake and wanted a sip of Diet Coke. One thing led to another and I got him a “chewy cookie”. Sitting beside him, I decided to read to him the prayer written on the label of his quilt. It is a beautiful little prayer about how each knot in the quilt is itself a prayer for him. Then we talked. At one point, he tried to tell me a secret. I have no idea what he said so I hope it wasn’t where the gold is buried. We talked a little as men do when they want to share their feelings: poorly. I asked to pray for him and he let me.
It was the last conversation I had with Rod and I am incredibly blessed and honored that it happened. It was, I think, the longest he stayed awake all day. That probably had much more to do with the cookie than me. The conversation ended like all conversations like that end between men, just like the conversation between the rock star and the manager when the rock star confesses that the manager is the love of his life in Love Actually. There was grunting, eye contact was averted, and if he could have, we would have smacked each other on the back painfully.
One of my theological problems with Christianity through the ages has been this idea that we are just worthless sinners no matter where we are in our walk with our God. As much as I’ve read and studied the words of Jesus and the theology of the Bible, I’ve never gotten the impression that we are supposed to just wallow in our ineptitude. Certainly before we know Jesus or know our need for Jesus, we are ripe and bloated with sin. But then the saving nature of Christ’s crucification lances us as well and drains our sin away.
I am not proud of that picture I just painted. No, wait, I am. Sorry.
This isn’t to say that the infection isn’t still present (let’s just ride this train a little further, shall we). The sinful nature is still there and the work of sin in our lives continues to cause us problems and pain. The point that bothers me is that we never seem to progress or if we do, we aren’t allowed to mention that we have progressed. The work of Jesus is not a cure that we only realize when we die. It was supposed to be transformative in that we are supposed to actually and very really and tangibly transform. We are supposed to become more Christ-like.
I look at Rod Mulder and see a man that was transformed. His pastor asked him yesterday when he came to know Jesus and for a moment I was happy that Rod wasn’t speaking intelligibly and the question went unanswered. Rod never knew a world where Jesus wasn’t an option. Faith was like air and church was not optional. Contemporary evangelicalism forgets that prior to the 18th century, being outside of the community of faith was impossible in most of Christendom. I read a book by James Joyce (just one and it was enough for me) where the young man confessed that he was an atheist to his friend who was shocked (as was I at the time). There was a world were being born-again made no sense because there was never a time when you didn’t know Jesus.
Rod grew up in northwest Iowa where church are as ubiquitous as corn, cows, and barns. There was probably a time when he made the faith his own (edit: 14 years old, as it turns out) but it was likely much like my story: a progression over time rather than a light switch being flipped. As such, the faith permeated him. He didn’t know Jesus as a revolutionary diverging away from society but as society. After he left that world, my understanding is that he took that with him wherever he moved be it Iowa City, Chicago, California, or Boulder. Rod and Laura’s home is not riddled with Christian symbols but there is a sense here that Jesus simply is.
My point in this is that I don’t feel ashamed saying that Rod Mulder has shaped my understanding of God. He is a good father to not only his own children but their spouses as well. Funny that all three of the in-laws come from interesting family situations. Rod (& Laura) were delightfully normal and stable when perhaps all three of us needed to know that normal was possible. This isn’t to say that they were better or surrogate parents, but they were hope that normal was entirely possible.
Watching Rod especially was like watching the archetype of a Christian man. I should be clear that my father is a great man and I want to be just like him in every way but my father is different. He set his own course and paved his own roads. Rod colored inside the lines more often that not. He was methodical and calculating but also kind. Rod was an elder at the church for way more many years than he had to be. He was the very definition of “elder” and there are so few men that can fill that roll as perfectly as he could.
To me, he is a picture of the immovable rock that is the father God. That love that cannot be shaken. The sense of normal, calm, right, good, and proper that is a world without sin.
Today started very rough. Jane stayed up to 2 AM so that she could administer more medication. Rod wasn’t calm right away so Laura got up and sat with him. I woke up sometime and heard him calling out so I got up around 4 AM. Laura and I sat together until Laura started to fade and went back to bed. I stayed up writing my blog entry about all this until Laura re-emerged around 8.
During the night, Rod’s breathing was very uneven. He would breathe normally for about 4 breaths in ten seconds and then there would be a pause for about 30 seconds before he would gasp for another breath. During my watch, he would call out but the only intelligible word was “help”. During Laura’s time, he called out “Theron”. Theron is his brother that passed away a couple years ago from Alzheimer’s.
While Laura and I were discussing plans for the day, Rod turned toward me, and focused! I said, “you had a rough night Rod but we’ve been sitting with you the whole time.” He nodded, closed his eyes, and fell back asleep. He focused on Laura later but that is her story to tell.
Over the next eight hours, Rod slowly emerged from what I can only describe as a comatose state. I don’t know if that is really what happened, but he slowly emerged first motioning that he wanted a sip and then actually saying the word. He wanted food but he can’t swallow anymore.
Linda and Greg rolled in late this afternoon. Jane administered the medication that dries him up and seems to relieve the coughing. Once that kicked in, he was much more comfortable and interactive.
Still, the breathing is halting and he falls asleep with no warning. He asked for a cookie and fell back asleep before Laura got back with it. I got him a sip of Diet Coke one time and he said something to me that I couldn’t even pretend to understand. Rather than placate him, I thought I would try something else and just said, “Rod, I have no idea what you just said,” with a smile. To my delight, he looked away with the first smile I’d seen all day.
It feels like this last crisis is in the past. He is comfortable and stable though diminished from where he was Friday morning. Conversation is not possible and he can no longer eat.
It is good to have more help. Linda and Greg are up to speed on the “sip” protocol and I hope that many hands will make light work overnight. I am also happy that Rod is more or less medication free and comfortable at the moment as this gives us options should he become distressed again.
Still, this job is not done and though a momentary pause in the storm allows us to regroup, it also allows us to reflect on what we’ve experienced and dread what lies ahead. It feels ominous to me–like a weight on me that I can’t identify or move. There is nothing to do but wait for the next attack and pray that when the trouble comes, we will rise to the challenge yet again.
Sounds like a Psalm. Sounds like a bunch of them actually.
Last night was quiet which, rather than leaving me energized and optimistic, makes me think the other shoe is just about to fall. This is why I don’t go near Disney World; all I can think about are the high prices, sweaty people inside the costumes, the world beyond the facade and how all of it is there to distract us from the real horrors, beauty, and adventure of the real world so that we will slavishly pay for lies to be stuffed down our throats and broadcasted before our eyes. Sorry, I should really see someone about that.
Truth is that last night, Rod came back to us. We sat around the bed and he talked. He tried to tell jokes and even thought some things were a little funny. Hints of a smile at moments. Still, understanding him is challenging and it takes so much of his effort to construct and say a sentence. In the past, the effort to engage and communicate is exhausting to him which one would hope would simply put in to sleep and keep him there for the night. That hasn’t always been that case. It seems more like the effort robs from his ability to stay comfortable and merely breath. He goes from “normal” to distressed rather than to tired.
That said, the night was quiet. Frankly I was surprised when I came downstairs to find him still breathing. Laura was at his side as were both of his pillows: the one under his head and the one that keeps his heels off the bed. His breathing is very irregular. The four or five breaths are without rhythm and are followed by 30 seconds of total stillness. When this started Friday, the pauses involved facial twitches like his was preparing for a breath. Now, he is sometimes completely still. He still rubs his eyes and they are red and bloodshot.