The laptop perched on my legs, balanced in front of my swollen belly, I typed:
Dear Dave,
I’m so very sad. My thoughts had been on getting you stable enough to get you home to Chicago. Now that we’re here…now what? Now what are we working for? The uncertainty is the worst part. I miss you so much, and no one can tell me with any certainty if you will ever come back to me. This is the worst pain I could have possibly imagined. I just really miss you.
We hoped that pieces of Dave were still in there, perhaps rendered unavailable and temporarily misplaced due to the stroke but still somewhat intact, and so we did everything we could to stimulate his brain and trigger his memories. I covered the hospital room with photos—shots from our wedding day, the most recent ultrasound images of the baby, pictures of his brothers and nieces and nephews and of him playing sports. I played his favorite music. His friend Russell sent a digital picture frame loaded with images collected from many of our friends. Andy and Nelson spent hours copying old home videos onto a small handheld video player that Dave could watch in his hospital bed. I brought in banners and memorabilia from Dave’s summer camp, high school football team, and college lacrosse team. I had his co-residents send the video of a roast Dave had cowritten about a bunch of their fellow residents the year earlier.
In those first few days, the medical team was hard at work trying to identify why the stroke had happened. Through an endless series of cardiograms, MRIs, and other tests, we determined that Dave’s stroke was as improbable as we had initially thought in Fargo. Dave’s anatomy and a handful of unique situational circumstances had amounted to the world’s worst lottery ticket. To start with, Dave must have had a clot form in his leg. This alone was not entirely surprising; he had been sitting at his desk working on research literally all day for weeks. Or perhaps it was from sitting still on the plane.
This clot must have then traveled up from his leg to his heart. That, also, was not entirely shocking, as clots tend to travel in the bloodstream and will sometimes move toward the heart.
But there, something else happened. The doctors observed that Dave had what is known as a patent foramen ovale (PFO) in his heart. A relatively common condition believed to occur in approximately a quarter of all healthy adults, it’s a small hole between the two atria of the heart, something that all babies are born with. This hole exists in all of us in the womb so that nutrient-rich blood can flow freely through our heart chambers before our own lungs perform the job of moving that blood for us. The hole typically closes on its own after birth. But Dave’s PFO never closed. That is something he had not known about himself; it’s something he really had not needed to know, as is the case with the roughly 25 to 30 percent of adults who are walking around with the same condition unaware. A PFO is not something that, on its own, is going to cause a healthy adult to have a stroke or any other major health crisis.
And yet, Dave’s PFO likely led to the next nightmarish sequence of events. Without a PFO, a clot would normally go from the legs to the right atrium of the heart, then to the right ventricle and into the lungs, where, unless it was quite large, it would cause little harm. Unfortunately, at the instant that Dave’s clot reached the right atrium, he must have done something to increase the right atrial pressure (cough, or more likely, lift our suitcases overhead on the plane), so the clot traveled into the left atrium, then the left ventricle and into the aorta. From there it could then have gone into any artery, the blockage not posing a serious danger.
But then, something even more unlikely occurred. The MRI results revealed that Dave has a rare anatomic variant in his brain called an artery of Percheron. Think about this artery as a tree. Most of us have “trees” with hundreds of branches (small arteries) feeding oxygen to the thalamic portion of the brain. When you have an artery of Percheron, however, rather than having all of those little branches, you just have one big trunk. This clot in most people would not be a problem; oxygen would still feed to both the right and left thalami through the many other branches, or arteries. But if you have just the one trunk, the one artery, then a clot means the entire passage is blocked. The oxygen flow is obstructed, and the brain’s cells are starved of critical oxygen. This means a lot of dead and damaged neurons in the midbrain. So when Dave had turned to me on the plane to ask whether his eye looked weird, his brain had literally been in the process of suffocating.
If it sounds complicated and unlikely, it is because it’s extremely complicated and unlikely. It’s also very bad. It baffled the doctors and Nelson and Andy for days until they were able to cobble together the pieces of this complex and improbable puzzle—and the picture this finished puzzle formed was grim. That Dave had survived was—without a doubt—miraculous.
I tried my best to absorb this deluge of medical information, but rather than getting too far into the weeds with all of the science (I knew that his neurologist father and his cardiologist brother were poring over echocardiograms and MRIs and the medical literature), I focused on what Dave needed from me and what I was uniquely able to give him as his wife.
And I focused on my own grim truths. Dave would survive, but how would he live? His mind and body were decimated. Our world had fallen apart, and I had no idea how to piece it back together—or what it could even look like if and when I did piece it back together.
And so, though Dave hadn’t died, though I wasn’t a widow at the age of thirty, though I wasn’t planning a funeral and grieving the premature death of the love of my life, I was grieving. The Dave I had known and loved, the Dave I had married, the Dave I had planned to have a baby with—that man was no more. My Dave had looked at me on that plane with a dilated eye before slipping from consciousness; a different man had awoken in that hospital bed. A foreign man who looked at me with vacant, confused eyes. A man who could not remember his name, or the fact that we were having a baby together.
The life for which we had planned and hoped and worked—the life we had lived prior to nine P.M. on June 9—was gone. Those versions of Alli and Dave, the two people who had loved and lived in that life, they, too, were gone.
Our future, along with our present, and even our past, had been snatched suddenly and ingloriously away. And so I was mourning, in my own way. I was mourning the husband who was no longer there. And I was mourning the old version of myself, too. The version of myself who had boarded that plane; the version of myself who had stared boldly and confidently at our future; the version of myself who had had her Dave beside her, who had been happy and lucky and innocent.
I noticed absentmindedly as I looked out the window that it rained a lot—we were having an unseasonably wet June. Good, I thought, I’m glad it is a bad June. At least it seemed like Mother Nature was acknowledging the way I felt and mirroring it back to me. Beautiful sunny days might make it all the more painful, might remind me that other people were out in the world, enjoying this favorite time of year. Just like I would have done, in a different life. In the life I might have had, had the stroke not happened.
Along those same lines of thinking, I flatly forbade myself from logging in to any sort of social media. As an author, one of the primary ways that I connect with readers and bloggers and fellow writers is via social media. I use it in my personal life as well. But I knew that, for the time being, it was a bad idea. It was summer, and people were bound to be enjoying vacations and barbecues, swimming in picturesque bodies of water, savoring the warm weather.
The last thing I needed was to log in to Instagram or Facebook and see a stream of glossy, edited photos of happy people eating lobster on a dock or drinking rosé in front of a beautiful sunset. Social media is bad enough for the mood and the self-esteem on a good day, when all we see is an endless sequence of people’s highlight reels. I certainly did not need to see that and compare it to my view from the ICU. Social media is a siren call, with its ability to numb and distract, to pull us out of our own present and into
the fabricated, filtered worlds of others. But as much as I did want to be pulled out of my world, as much as I did crave even just a few minutes of anything other than my reality—I had to forbid myself. I knew that, for the time being, I had to just remain still in that painful place, unpleasant as it was, as tempting as it was to seek some temporary diversion. I guessed that, in the end, the diversion would only make me feel worse. And the pain would remain. So I had to choose instead to stay in my painful present, where my focus and my energy were needed.
But man, was it difficult to be in that present. “This is especially hard for you because you like to have a plan. You like to feel in control,” my mom said to me in those early days. “But there’s nothing you can do here to plan or control the outcome. You just have to be with Dave. Just take it a day at a time, sweetie. Dave is strong, Alli, and he will fight as hard as he can. You just need to be here beside him right now.”
I learned from the neuro-ICU nurses and doctors how to best stimulate and orient Dave. I repeated every few minutes where we were and why we were there. I fed him his food and talked to him about our baby. Several times a day I would try to motivate Dave for a big “outing”—we would walk a lap around the hospital floor, eyes fixed forward, not turning to look from left to right into the many other hospital rooms where so many other families were quietly engaged in their own agonies, their own life-and-death battles. My strong, athletic husband would lean on a walker, slowly shuffling forward as I walked beside him and a nurse trailed behind, a harness wrapped around his hospital gown to catch him when he wobbled. I monitored his bathroom visits and made sure he was staying hydrated. I filled out paperwork and spoke with doctors and befriended nurses and learned about his meds.
Like the countless other spouses and family members who have kept vigil beside the hospital bed of a loved one, I put everything else out of my mind and made that hospital room my entire world.
Dear Dave,
Before your cardiac test you looked scared. I asked you if you were scared and you nodded, so I took your hand and told you where we were and that we were all here with you and that you were going to get better. I love you so much.
Dave may not have known where he was or why he was there, but I would do my best to make sure that he knew he was not alone.
Chapter 15
Dear Dave,
I will meet many guardian angels along this journey. I met one today.
I wrote that in my DearDave Word document on our first day at Rush. It was true; from the Fargo ICU to the Rush ICU, to rehab and beyond, strangers and loved ones emerged to walk beside us and help us forward through the crisis. One of the first angels we met was at Rush, and his name was Omar.
Dr. Omar Lateef was a specialist in pulmonary and critical care medicine, and now served as the chief medical officer at Rush University Medical Center. I remember, that first day, we kept hearing from our resident and attending physicians about some guy named Omar.
“Omar is on his way in.”
“Omar is at home with his family, but he’s driving in from the suburbs.”
“You have to meet Omar; he really wants to talk to you.”
So, our whole family sat down in a private conference room and we met Omar.
From that first day at Rush, Omar took Dave—and all of us—under his wing. We did not know it from Fargo, but Omar had had his hand in everything from facilitating the air ambulance ride to getting Dave a room at Rush on the neuro-ICU floor. Omar reserved the family conference room where we could congregate and where the young niece and nephews (who were not allowed onto the floor of the neuro-ICU) could gather and run around and nap. Omar had a tray of sandwiches waiting for us at dinnertime. When the national press began to sniff around the hospital, hoping for a photo from the ER, Omar added security and made sure that our privacy was protected. Omar ensured that all of Dave’s paperwork was done quickly and that all the parties from the Fargo ER to the Rush cardiology department to the insurance companies were working fluidly and efficiently together. As he does for each one of his patients, Omar worked to get Dave the best possible care and all the tests he needed as quickly as they were medically advisable.
At one point Omar took me aside. “Do you have out-of-town family? Friends? I know that if my wife were in your situation, she would need her mom with her. There’s just something about her with her mom—it’s like some secret language I can’t understand. So you make sure you have whomever you need with you here. Does anyone need a hotel room?” Omar then pulled out his personal credit card, and I realized that he was offering to book the hotel room for us. The man’s generosity was automatic, unthinking. “Anything we can do for you guys, you are family. Dave is one of our own.”
Even just thinking about it now makes me want to cry all over again. Especially touching was how available Omar made himself as a friend and confidant, approachable in spite of his busy schedule and his demanding role as a leader at the hospital. His style was a special and rare blend of compassion and understanding mixed with irreverent humor and stubborn hope. A husband, a father of three, a doctor, and a significant figure in the hospital administration, Omar somehow knew every patient by name. Even more remarkable, he knew each patient’s family members by name. He commented on my brother-in-law Mike’s new haircut! I truly do not know when the guy slept or ate; he would check in at all hours. He would stop by the hospital room and pull me out and give me pep talks when he could read the fatigue and sadness and worry on my face after a long day.
Omar gave us hope when there was very little reason to cling to any. He believed that Dave’s brain could heal, and that Dave’s recovery could be nothing short of our wildest hopes. “This is all so new and shocking to you, but let me tell you: we see this all the time.” There was something deeply reassuring about hearing that from Omar. It was not some platitude or cliché coming from someone who, though well meaning, really did not know what they were talking about. Omar knew what he was talking about. It was all so new and shocking to me. I could not believe any of it was happening. But to hear that Omar and his doctors had seen other people go through experiences this earth-shattering—to hear that people could survive and even recover—that normalized it a bit.
“And when this is all over, you and Dave are going to take me and my wife out for dinner, OK? You’ll leave the baby at home, because it’s impossible to enjoy a restaurant with the kids, wait and you’ll see. So, no kids. How do cheeseburgers sound?” Omar smiled and I agreed. “It’s a deal.”
I remember something else Omar said in the very beginning. He was speaking to me as a friend rather than a doctor, and he told me: “Pray. Pray to whatever deity you believe in, or ask the universe, or meditate—however you think of prayer. I really believe it helps in ways we can’t explain.”
Once, when Omar went far out on a limb to help us in an insurance dispute that could have been catastrophic had it not gone our way, I asked him: “Why are you helping us so much? As busy as you are, how can you possibly devote this much time and energy and care to our one case like this?”
“Because I believe it’s the right thing to do, not only as a doctor, but as a human being,” Omar told me. “And I believe in God, so I want to do God’s work. I want to do the right thing for people.”
The topic of faith and prayer had come up in various ways in my conversations with Omar, and so finally one day I asked him the question that had been on my mind: “You talk about prayer and faith a lot, and I agree with you. What faith do you practice?” Whatever his faith walk was, I wanted to know, because I admired it. Omar was walking the walk of God’s love every single day of his life.
Omar told me that he had studied many different religions, and had even focused on theology as part of his schooling, but he himself identified as Muslim. So there we were, a Muslim and a Christian, sitting in the hospital room talking about faith and medicine, both of us pullin
g for Dave with the best resources we could bring to the difficult situation. I do not know if Omar was aware that he was treating not only Dave but Dave’s whole family.
All we could do at that point was fumble in the darkness of our fear and the unknown, but the support coming from Omar and others provided the shards of light that we needed in order to keep moving forward, one faltering step at a time.
So many of the words of comfort we would hear in those early days would come in the form of well-worn clichés:
“It’s a marathon, not a sprint.”
“Take it day by day.”
“It’ll be a long road.”
“It will be a roller coaster; you have to take the highs with the lows.”
“Two steps forward, one step backward.”
As tiresome as it could be to hear these pat turns of phrase, there was a certain wisdom in their age-old truths. It would be a long road. It would be a marathon—but I could not really understand any of that right then. At that point we were still very much in the “sprint” phase. I was not thinking about conserving energy or digging in for the long haul, bracing myself for the cruel roller coaster that is traumatic brain injury. I was thinking about spending every minute with Dave and putting every drop of energy I had into his treatment and recovery. Telling him, hour after hour, where he was and that he was going to get better.
Did I truly believe, in the private places of my own heart, that Dave would in fact get better? I didn’t know. I am an information junkie and I like to study and seek answers, but in this situation, perhaps the hardest part was that there were no answers. Control was an illusion that had been shattered into a million tiny pieces the moment Dave lost consciousness on that plane.
Beauty in the Broken Places Page 9