June 14, 2012 12:05pm

One year since the death of a patient. His love and healing surround us daily. His family helped create and edit this post. His wife created the intuitive painting.

I’m out paddle boarding as one of my patients lies dying in the Neuro ICU. I have wanted to try boarding for a few years now and this recent experience with death and dying spurred me on. Now or never, huh?

A few months ago he was in Japan organizing technology infrastructure and writing software programs.  Specifics that my scientific background provides little capacity to understand. But he did. Understand. Up until spring when he got back from a trip and told his wife that he had a headache. “Ouch,” he said, “my head hurts.” So they went to the doctor. And the doctor accidentally ordered an MRI. Ever heard of that? They went to radiology with an accidental order and radiology proceeded. Any HMO would have preferred utilization review and Evidenced Based medicine. But all that stepped aside for this picture.

It came back, as we say positive. Strange medical term that we all get used to when we are sliding down the slippery slope of ill health. Positive brain scan in this case meant three tumors. Three. How about two or one and a half? We’d rather not have a positive brain scan. Can we start over and have a negative one? But of course the answer is always no. When a doctor gives you bad news about your brain it’s rarely reversible. In this case it was the first leg of a miserable ride down the holding room highway to the OR and now the ICU. Miserable.

The family came to me when they were having some transitional difficulties. Imagine. How do we love each other in the best way as our time together winds down. Loving each other while juggling endless trips to the doctor for surgery, radiation and chemotherapy. Lots of intrusive treatments even though they had been told, “Go home and meet with your attorney and financial manager.” “Stop,” they wanted to scream, “can’t we talk about treatment first?” You can of course but the location, size and extensiveness of the metastasis deems a poor prognosis. “And I” she wants to scream, “I deem this absolute madness!”

And that’s where I came in. Executive Director and Counselor in Charge of that. Actually, she was Executive Director. She came in like a well honed CEO and managed more appointments in one month than most folks attend in a lifetime. And she did it well and she did it with grace. I just talked about things like why do you get upset when someone leaves the house and it’s not on the schedule? And he said things like I don’t know. And I said how long are they gone? and he said not long. Not long really at all. I don’t know why I care so much if we don’t follow the schedule. And I said if they aren’t gone long and your don’t really care, why the upset feelings, the anger? And he said I don’t know. And then I said, how long is not long for you? and he said not long, not long at all. So then I could say do you think you get angry because you are afraid that you will die before they return and he said simply Yes. I do think that.

And I turned to his wife and said see, he’s not angry because you can’t keep the schedule, he is angry because he is afraid he will die before they return and he will not have time to say goodbye.

And that put the situation in a different light.

But it still didn’t make it easy to execute the schedule.  Keep up with teenagers running here and there, doctor’s appointments and when the next fall or seizure was going to happen. None of those things are strictly scheduled or adhere to a time table. Neither brains or teenagers. They just want to evolve naturally on their own. And usually do.

After he spoke that truth, it seemed natural to say, so if you die what are you afraid of missing, what frightens you? And he sat there and looked at me dead on in the eyes and calmly said their birthdays, missing my children’s birthdays. It nearly took my breath away, the honesty and the answer. I had expected, I want to see them graduate from high school or get married or I hope to hold my grandchildren. But he said, I want to celebrate their birthday. With them. With them and my wife. And their birthdays were less than a month away. And so then I knew that he knew. Really knew something that no one else in the family had been able to comprehend. No wonder he was trying to control the schedule, right?

Two months ago he was in charge of technology in Japan. An Engineer. A loving family waiting for him each time he returned home and a life. Now he could barely figure out how to go forward, literally forward through the hall without falling. Now he could not think like an engineer and had a brain that could barely remember appointments. But neither was he sure about going forward into another life. So treading water in limbo without his usual capacity to reason left him scared. And angry and not able to remember where his children were going without him.

Or where he would be going without them.

“All that I have seen teaches me to trust the Creator for all that I have not seen.” we said together with Ralph Waldo every time we met.

How is your faith life? I asked. And as he struggled to answer, “Rapidly advancing?” I joked. And we all laughed together. We laughed because it was funny and because we could. Laughing and loving together, they struggled to create special and unforgettable days.

He entered the Neuro ICU last week after a seizure started and wouldn’t stop. His wife called the hospital because it seemed such a violent way to end things and she wanted something better for all of them. “We need some time,” she told them. I visited him in the ICU. At first they weren’t going to let me in. The receptionist said, “Come back in an hour. They are doing report.” Well report this, I wanted to say, I’m Dr. Burns and I want to see my patient. But I didn’t. I just said may I see the charge nurse please? And they asked me to wait 15 minutes and then they let me in. Praise God and thank you.

Although he had been unconscious most of the day, he woke up just before I entered. He squeezed the nurse’s hand lightly and moved his foot on command. And then he squeezed mine. He looked pretty miserable as he opened his eyes and gazed up at me, pushing down hard with his right hand. Seeming to say something significant that I couldn’t understand but felt emphatic and urgent all the same.

So I gave him the only gift I could. I stood close, held his hand and touched his head and quoted scripture. My personal defense against losing my temper on the tennis court or suffering from dementia is to memorize scripture. I touched him and recited Psalm 121 “I lift up mine eyes,” Psalm 124,  “If the Lord had not been on our side let Israel now say”, and of course Psalm 23 “Yea though I walk through.” Then I sang the Song of Mary, “My soul proclaims the Greatness of the Lord, from this day on All generations will call me blessed,” and the  Lord’s Prayer and I closed with three Hail Mary’s.  It didn’t feel like much but with all my expertise and scientific training it was all I had. I visualized a stairway moving down from heaven and I lifted him up spiritually climbing those stairs with his family and loved ones. Fly away, I whispered. Just like I did to my Daddy, three years ago. We’ll be fine without you. I promise to do all I can for your family and I’ll pray for you everyday. Fly away.

Then I placed my hand on his head and blessed him and walked away.

Entering the elevator I was aware of every person riding with me. Bags filled with personal belongings can signify going home with a loved one to recuperate or the taking away of personal effects for the last time. Walking to the parking garage I was hyperaware of the surroundings; colors, sounds, and emotions of those walking towards and away from the hospital. Who is leaving and who is entering?

As I climb into my car, I turn on the radio wanting to listen to music. Hoping to sing, not cry. Wanting desperately to sing to him like I knew he had sung to the world. To let the music carry us away together, up the ladder to the stars. Just guess what song played? What lyrics came rocking into my car as I rolled around the parking garage ramps? Stairway to Heaven! Seriously, could I make that up? So I raced away from him and towards home, singing at the top of my voice with Led Zeplin. Singing because I could and he couldn’t anymore.  “And we’re buying a stairway to heaven” rang out in all its glory since I knew it to be true, once again.

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