Chapter 12

Dear Dave,

I have been so non-responsive to the thousands of people who are reaching out. Prayers flooding in. So today I wrote a long email. I sat down at eight A.M. to write one email. But then the day happened. You surprised everyone. Nine hours later, when I sat back down to write the same email, it was a completely different note than the one I had thought I’d be writing this morning.

Friday marked our first full day in Chicago in the Rush ICU. Thinking that when I got into the hospital early that morning I would find Dave asleep, I planned to write a mass email to friends and family to let them know that he had been moved from Fargo back to Chicago and we were settling in with our team of excellent doctors. I had not so much as answered an email or phone call or text message since Dave’s stroke on Tuesday, and I knew that there were people around the world eager to hear how he was doing.

That morning before going into the hospital, I prayed that the day ahead would see Dave opening his eyes and displaying some acknowledgment of his loved ones. I wondered, in the taxi en route to Rush, if that might just be a way of setting myself up for disappointment. So far, he had been able to keep his eyes open for only very brief periods; he was still unconscious the vast majority of the time. No one knew when he would be really “awake,” when he would begin to show recognition of his loved ones or glimmers of his former self. Just remember, I told myself, stepping out of the taxi, I can hope for it, but it might not happen. Be prepared for that.

I rode the elevator up, made my way down the hall, and turned the corner into Dave’s hospital room. There, to my utter shock, I found Dave sitting upright in bed, his green eyes wide open. He looked at me intently, watched me as my face exploded into a smile. “Hello, my love!” I practically shouted.

I took his hand and gave it a squeeze. Then the nurse asked him who I was, and, to my complete amazement, Dave replied with a smile: “Alli.”

“And who is Alli?” the nurse asked.

He paused briefly, then answered: “My wife.”

“How long have you been married?”

“Four years.”

I was elated; I had not believed that speaking would be a possibility for weeks, frankly, if ever. I had not known whether he would remember me. I had not known what to expect. So this was a moment of pure and stunning exultation.

My conception of stroke patients, the common reality for many stroke patients, is one of partial or complete paralysis. I pictured Dave unable to walk or move his hand. I pictured half of his face drooping, his words slurred and jumbled.

But this was not the type of stroke that Dave had suffered. His stroke had not produced uncontrolled bleeding in his brain; his stroke had depleted oxygen to his thalamus, and he would be most plagued by cognitive, as opposed to physical, deficits.

Physically, Dave remained strong, and we were all thrilled as we saw evidence of his strength that day. He took a few steps with a walker that morning and stood up to brush his teeth. That afternoon he made a slow but full lap around the hospital floor. He answered questions on Chicago sports trivia, identified several loved ones in photos, and even read a couple of sentences off a paper.

Because of all of this, we were busy all day and I did not end up finishing the mass email until that evening, now an email in which I was able to recap the day’s triumphs. It closed with:

All of this just reaffirms in my mind that Dave is the strongest, most hardworking, most determined person I know, and I am so amazed by him. And that the prayers you’ve all been sending to Dave from around the world have been working miracles in conjunction with these brilliant medical professionals.

This is a marathon, not a sprint. There will be encouraging days and then there will be days that are tough and scary. Swelling for an injury such as Dave’s stroke usually peaks at about day 5, and swelling is inevitable, so it is likely that we will experience some setbacks as we hit days 4, 5, 6 in the next few days. So, please please continue to pray for Dave. Send all positive thoughts his way. Keep the love coming, because we truly feel it, and we cannot wait for Dave to be alert enough to share in all of your loving prayers and words.

In spite of the upbeat tenor of that email, there was still so much uncertainty. Dave’s father, being a neurologist and a self-avowed pessimist and, as he said, “someone who knows too much to know how bad it is,” reminded us that these early achievements, while encouraging, were not necessarily surprising. The part of the brain damaged by Dave’s stroke, the thalamus, did not regulate his motor skills, and so it made sense that Dave still had many physical capabilities and strengths.

What we should be worried about, Nelson warned, were the cognitive deficits. The thalamus can be thought of as the brain’s “Grand Central Station,” or the “quarterback,” as it plays a part in coordinating pretty much everything the brain does. All of the data moving in Dave’s brain, the “trains,” could still come and go, but without their Grand Central Station, there was no place for these trains to connect.

Andy explained it to us this way: think of Dave’s brain as a computer. The hard drive (the long-term memory, all of the information that had already been stored over Dave’s thirty years of life) was still in there, but the computer’s software that connects all of the data and allows it all to work together—the thalamus—had been wiped out. Data coming in and out did not make sense. His “hard drive” was suddenly stranded way back in his brain, unable to output all of the data that it had spent thirty years accumulating. That explained why, earlier that day, Dave had not been able to provide the word for “pen” when his doctor had asked him to name the object. But perhaps even more frightening: Dave could not hope to put in or store new data, either, without a healthy thalamus. Without his brain’s “software” up and running, my husband would not be making any new memories.

Losing the thalamus was a devastating blow. One of our doctors at Rush told us: “Pretty much any medical student knows that, when asked on a test ‘Which part of the brain controls x or y function?’ they can answer ‘Thalamus.’ It will pretty much always be correct. The thalamus is basically involved in everything.”

And there was something else: Dave’s type of stroke, and specifically the instance of it occurring in a patient of his age and profile, was so rare that there was scant medical literature on similar cases, and there was almost no established research on what the recovery or rehabilitation should look like.

Dave had survived, but his thalamus had two huge holes in it, two harrowing graveyards of dead neurons. And those neurons were, in large part, what had made Dave Dave. We did not yet know what of Dave remained, what through time and rehab could be regained, and what had been lost forever.