Chapter 19

Timing is so important in the recovery after a traumatic brain injury. On the one hand, every neurologist will tell you that “it is going to take time.” And yet, you want to work quickly, as it’s a race to recapture as much as you can as quickly as you can while the brain is still in a state of healing. Time becomes this shifty entity, at once both ally and enemy.

Once Dave was medically stable and the threat of a repeat event was ruled out, his team agreed that it was important to get him into an inpatient rehabilitation facility where he could get right to work on rebuilding and replacing and reconnecting those dead and damaged neurons. We considered a few options, but really the answer was clear to us all from the beginning—for recovery, Dave would go to the Rehabilitation Institute of Chicago, ranked the nation’s number one rehabilitation center for more than twenty consecutive years. It was incredibly fortuitous that such world-class rehabilitation existed in our city, ten minutes from our apartment.

As thrilled as I was to be getting out of the frenetic, sterile, nerve-addling ICU, I was anxious about the transition to a place where we would have a lot more autonomy; I was reluctant to be giving up the round-the-clock medical care and monitoring that made the hospital both a blessing and a curse. I worried that the care these expert ICU nurses had been providing would fall largely on my shoulders. I worried that I would forget when Dave had to take his medication or that I wouldn’t know what to do in case of an emergency. A task as simple as shaving confounded me—Dave was in no way capable of handling a razor, so who would shave his face?

Most intimidating to me was the daily monitoring of Dave’s heart. Since the stroke, Dave had been wearing a heart monitor. We suspected that the PFO (the hole in Dave’s heart) had played a part in the circumstances that led to the stroke, and Dave’s cardiologist wanted to be sure that there was not a larger problem like an arrhythmia (irregular heartbeat) or another possible congenital heart deformity. Dave was to wear the monitor for a month, and the electrodes had to be changed each night before bed. They were red and black and white and had to correspond to particular wires and particular places on Dave’s chest. The battery had to be charged each night and replaced each day. The monitor communicated with a recording device, much like a cellphone, that had to be within ten feet of Dave at all times. In the more mobile setting of rehab, where Dave was shuffling from room to room for various therapy treatments, this would mean the device would have to go everywhere with him. Dave was in no way capable of remembering something like this, so it fell on me. I brought a pouch from home that Dave could wear around his neck each day with this small heart monitor inside, much like a tourist would wear to keep money safe while traveling in a foreign country. I cannot tell you how many times I trailed behind him, waving that pouch like a mother brandishing her kid’s forgotten homework as the school bus pulls away: “You forgot your heart monitor! Put your pouch around your neck!”

Dave and I went together in the ambulance from Rush to RIC. He was still in a state of complete amnesia, and so even though I tried to explain the situation to him, he did not understand why we were in an ambulance. Strapped into a wheelchair, leg and arm restraints in place to ensure he would not get up, Dave panicked. He kept trying to break free from the straps, and, given his strength, he was coming perilously close to doing just that. He kept reaching for the door of the ambulance to open it.

“What are you doing?” I asked, my voice growing shrill. It was just Dave and me in the back of that ambulance, and I would not be able to restrain him if he managed to wriggle free.

“I don’t want to be here. I want to go home,” Dave told me, looking distrustfully around the inside of the ambulance.

“I know you do, and we will go home soon, I promise. But first we have to go to rehab. We are going together; I will be with you. It’s the best rehab facility in the country, and we will be in the best hands possible.”

Though I had told him this a dozen times, Dave looked at me now, trying to understand this information. He shook his head and began a fresh round of writhing and squirming, his hands working to undo the straps that were barely holding him in place. “No, I want to go home.”

Trust me, so do I, I thought. We were on the highway in rush-hour traffic. I was six months pregnant. What would I do if I had to physically restrain my husband, who weighed almost twice what I did? How would I keep him from opening the door and jumping out onto the highway?

“What do I do?” I asked the driver, my panic rising by the second as my husband thrashed and jerked around in the wheelchair. The driver was on his cellphone, speaking to a friend in colorful language about the physical attributes of a lady friend of his. He did not seem to hear my desperate entreaties. He kept chatting away as Dave kept writhing and fighting against his restraint straps. Please please please just let us get there, I thought. The whole situation was so absurd that I wanted to laugh and cry at the same time.

Finally, after contending with the traffic jams, we made it, pulling up in front of RIC with Dave still fastened in his wheelchair. I told him for the twentieth time where we were and why we were there. I told him he was at RIC to get the best rehab treatment in the world.

As we settled Dave into his room, I looked around at our new home base. As a nurse reviewed the inpatient information with us, a middle-aged woman, another inpatient, wandered into our room, clearly disoriented. A moment later a kind nurse came in and guided her out. “We don’t go into other people’s rooms,” the nurse said gently as they walked away. I slid the curtain across the room’s entrance, trying to gain some privacy for us. I looked back toward Dave, and around at our room.

As we sat there, the extent of Dave’s handicaps settled in my gut with a harsh new clarity. The bed restraints, the wheelchair that they were insisting Dave use anytime he left his room, the safeguards in the bathroom. How depressing would all of this be for Dave if and when he realized just how incapacitated he was? How would day after day in this sterile, hospital-like environment cause him to feel anything other than utter despair? He was supposed to be working as a doctor, operating on people at that very moment, living a full and vibrant life as a healthy thirty-year-old with a wife and a baby on the way, and, instead, he was the youngest person (by decades) on a floor filled with people who were either physically or mentally incapacitated. How damn unlucky was he?

This is something I have never shared—not even with my mother-in-law, or my mother, or even with Dave. In that moment, I looked around the space with even wider eyes; I looked with horror at the hooks on the ceiling, from which they secure safety straps for people who can’t walk. I had the horrific, blood-chilling thought: What if Dave tries to hang himself?

Unpacking there, though trying to remain outwardly upbeat for Dave, I had a feeling similar to the one I’d had when we first arrived at the Rush ICU. In Fargo, I had been looking ahead to getting Dave back to Chicago because it would mean he was stable enough to travel and it would mean getting home, back to loved ones and familiar territory and Rush’s world-class neurology ICU. Then at Rush I had been looking ahead to getting Dave to RIC because it would mean he was medically strong enough that we could stop worrying about him dying, and we could focus on his getting better. We could start the work of bringing his brain back online.

But here we were. Settled in at RIC. Now what? Dave’s amnesia and helplessness were still our reality. There was nowhere else to go, nowhere else to be but in that dreadful reality.