As many of you know five years ago at this exact time our family was enduring the greatest trial of our collective lives. The idea came to me yesterday to write of the memories and experiences that I had during those days over these next 6 plus weeks (corresponding to the number of days we spent in Rochester) in real time plus five years.
Karla suggested that I write blog posts that correspond to these days as well. I thought that was a splendid idea and so over these next weeks I plan to write regularly on the blog. I plan to use some of the text from these real time updates in the book I am currently writing. This does not mean that I will necessarily be blogging every day but I will be writing every day and I will pass some of that along to all of you, if you are interested. This self challenge, call it a gimmick if you will, provides me with great motivation to write as I relive each of the days anyway. I have asked Karla to write some of these posts because it was her attention to the details that allows me to…well, get it right.
February 15, 2014 (2009 Sunday)
I remember this day because of all the chaos I created in the Intensive Care Unit by simply uttering three words. Karla tells it like this in her first posting on that day:
“We did have a bit of excitement this morning. Mike indicated that his chest was hurting, which was immediately followed by a pulse of 160 for a few seconds. That brings everyone running in the ICU. He then said, “My heart hurts.” He did not mean his physical heart, but rather his heart is heavy with all we are going through. I told him to quit being poetic, and never say that your heart hurts in the ICU unless it is physical! Needless to say, he had an EKG anyway and some follow-up. I am assuming tonight that we will hear it was just one of those blips in the process. He is talking more, but still quite worn out. You might be amazed at the number of medications he has been on. He has steroids to reduce the swelling, insulin because the steroids affect blood sugar (although he’s off this now), something to keep the blood pressure low, iv’s, antibiotics, and morphine when he needs it for pain. Whew!””
Karla was correct on both counts. First, I should have stopped trying to be poetic. I should have been more careful in choosing my words…but those were the words that I was feeling at the time, and so those were the words I used. And second, she was correct that I was simply feeling overwhelmed at the sheer weight of this trial and the toll it had taken, was then taking, and would in the future take on our family. Moreover I knew there was still plenty that could go wrong. Yet this was my golden opportunity to put the theology (study of God) which I had preached all these years into practice in a major way.
Since I was still having trouble with word finding I didn’t have the ability to communicate what I had really intended by those words. Oops. My bad. Funny bad, but my bad nonetheless. I had also not slept well at all the previous night with all the IV’s and monitors making all kinds of noises. Regardless, my heart was genuinely aching over these things to the point that my pulse jumped to 160 for a few moments. Such was the genuine ache of my heart from the costly seat of my humble and helpless position.
Dean Osborne from the church was also there and took those three words “my heart hurts” in what would turn out to be eerily prophetic as you will come to see in just eleven more days.
He wrote, “Last week wore many of us out both physically and emotionally, plus the little excitement this morning when Pastor said his heart hurt which had the medical staff rushing around and just about put me over the edge. I feared Pastor had thrown a clot or had a major bleed. After the dust settled I’m not sure Karla was as excited as she was last night about Pastor being able to talk, but that’s just an observation on my part.
This morning we brought church to Pastor Mike. Scripture reading from Psalm 95, followed by a few comments and prayer. I thought about singing, but Pastor’s had enough trauma for the week. At 1 A.M. this morning I woke and began to reflect on the week and was reminded of Psalm 139: 13-14 “For you formed my inward parts: you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works: my soul knows it very well.”
For 44 years, Pastor Mike’s brain has managed to navigate around his AVM, which turned out to be the size of a peach. Pastor Mike excelled at sports in High School and College in addition to his sharp mind. His brain’s ability to literally rewire the neurological pathways all took place without his knowledge or help. We are truly “fearfully and wonderfully made.”
Saturday night is also when the tick tock sound began in my head. At first I thought it was literally a clock or a metronome making the sound as the rhythm was about one time per second. I asked Karla if she could hear it and she said that she could not. Over the next days and weeks, even into June (remember now this is the middle of February) this sound would continue intermittently. No one could tell me why I was hearing these tick tock sounds until a follow up visit in June when Dr. Meyer explained that it was just the titanium plates settling into their place. Ok. Whatever. At first the sounds were continuous day and night. Over time they lessened in intensity and could even go away by the position I laid in my bed. However, the thought did occur to me that if I had to live with this tick-tock sound long term it would drive me certifiably mad. I could not imagine life like this. It also made me think with genuine empathy of those who are forced to live with relentless annoyances and continuous pain.
By this time I was also beginning to be very hungry and thirsty. After all, I hadn’t eaten a real meal now since Wednesday evening and it was now Saturday evening…but broth was a possibility for tomorrow (Monday) if I could pass the swallow test. Keep in mind that my body was half out. So right down the center of my body was the dividing line between function and non function. Therefore half of my esophagus and throat muscles were not working. The docs were concerned that the liquids might go right to my lungs and cause me to aspirate…so they gave me little pink sponges with a few drops of water every hour. Even though I was well hydrated because of the IV fluids I was so very thirsty!
Karla posted again on that Sunday which I thought should be included just to show how much bigger things are than what we can even imagine at any given time.
Karla wrote: “ I have been hanging out in the Mary Brigh 8D Family Waiting room, I have observed and met many families. These people are very kind and interested in what is going on with each other. I have had an opportunity to talk with several families about health crises they are facing.
I met one family whose son came home from high school on Wednesday to find his mother on the floor. She had a brain hemorrhage and was basically in the same condition as Mike was following surgery. Her husband and children shared the same frustration as I did with the lack of communication. They were excited to hear that Mike was talking, as he knows what it is like to not be able to communicate. I will be able to follow their journey as they have started a Caring Bridge site.
Another woman is here from Montana with her son who suffers from uncontrolled seizures. He currently has a grid on his brain to determine exactly where the seizures are coming from. They will then take out the part of his brain that is the problem. I told his mom today that people in my family have had seizures for the past 30 years and this was the first time I had ever prayed for someone to have a seizure. He had one this morning.
It has been good to be able to pray for others when I wake up in the night. Every family here is in a crisis situation, and some are trusting in God and others aren’t. You can certainly see the difference. I hope to be able to pass along a word of hope as I talk to these people. Our situation has certainly given me greater compassion for other people.”
Yep I agree honey…and empathy.