Let me outline the core of the issue: One morning in late June, I was awoken by the sound of my wife Heather crashing to the bathroom floor, where I found her unresponsive with her eyes wide open, struggling to breathe and even stopping for a moment. I stayed on the line with 911, not knowing what had happened to her or if she would survive it, until paramedics arrive. I’m told she regained consciousness in the ambulance, and when I was finally able to see her in the emergency room, she was awake and appeared alert to her surroundings but could not speak coherently. A neurologist informed us she had expressive aphasia. When she was asked her name and the year she was born, she could only answer “Heather Heather” and “Twenty… twenty-twenty… twenty-twenty”. Everything else came out as a jumble of unrelated words and slurred syllables. A CT scan first revealed a small hemorrhagic stroke, and then a nearly complete blockage of her cerebral sinus veins with numerous blood clots, effectively preventing deoxygenated blood from draining out of her brain. This was considered to be enough of an emergency that she was flown rather than driven to a specialist interventional neuroradiology ward at a hospital in downtown Orlando.
Our children and I waited for nearly eight hours while she underwent a mechanical thrombectomy, where instruments were passed through the major vessels in her groin and up into her brain to clear her sinus veins of clots. I was informed after the fact that she had a 60% chance of surviving even with this procedure. While we waited, a nurse helpfully informed us that we could only sit in the waiting area for 30 minutes due to the coronavirus. After being told to leave, we sat near the gift shop, where a security guard later arrived and told us we could not wait there either. Late in the evening, we were told that she was out of surgery and recovering in the neuro ICU. I could not stay the night with her due to the coronavirus. I was able to visit her the next day, thankfully finding that she was conscious and able to speak almost entirely clearly, before being told I had to leave in the evening due to the coronavirus. The next morning, I received a call at home from her neurosurgeon informing me that she had again lost the ability to speak and was again being taken into surgery after she developed more clots. I later found out that she had been exhibiting symptoms for hours that morning before a nurse noticed anything was amiss, hours when I was not allowed to stay with her due to the coronavirus.
That day, and for several days until she was released, I stayed with her for each of the 11 hours a day I was permitted to be present. I operated in a state of constant emergency that I had never before experienced in my life, defaulting to a mode of pure functioning as a person I barely even recognized, some part of me automatically pushing every feeling to the side just so I could continue to care for Heather, care for our family, do what needed to be done. I became a conduit for communication between Heather and our children and our family and her nurses and her neurologists and her hematologists and her physical therapists and her occupational therapists. I made myself into a hub of information on the rare form of stroke she experienced, her newly diagnosed thrombophilia and atrial fibrillation and type 2 diabetes, the dozen new medications she was prescribed, every blood pressure and heart rate and blood sugar reading, every exercise she was taught to rebuild her strength as she learned to walk and use her hands again, every adaptation for activities of daily living now that she could barely use her right leg.
I have spent every waking and even sleeping moment since then on high alert for any head pain she reports however minor, any misplaced word, any numbness even if from laying on one arm, waking up compulsively through the night to make sure she is still breathing. We had no reason to expect any of this would happen the first time it did. Even with her conditions managed and a good prognosis from her specialists, we have no way of knowing it won’t happen again. All of this has been horrible. It is the worst thing we ever experienced. Yes, she survived, she’s regaining ability and mobility every day, and we’re all so grateful and relieved that she’s still here. I can’t imagine life without her.
The problem is that this happened this year, against a backdrop that’s going to continue into the next year for some time. In any other year, we wouldn’t be facing the litany of additional factors that we now have to consider. Despite the second wave of coronavirus hitting Florida in late June, what happened to Heather occurred in almost ideal circumstances, with a fire station down the block in one direction, an ER down the block in the other direction, and a specialist center ready to perform the necessary procedure as soon as it was clear she needed this immediately. Time is brain – this is a mantra of stroke treatment. The more time that passes before treatment, the more tissue is damaged and the more function is lost. And even under nearly-best-case conditions, Heather has been left with permanent numbness and neuropathic pain in her right leg, making it difficult for her even to take one step down from our doorway.
The third wave is different – it is everywhere and the healthcare system is quickly passing beyond its breaking point into being simply broken. Ambulances are being turned away from hospitals, many patients who should be hospitalized are instead being triaged under crisis protocols and sent home, others are being placed in hospital gift shops, and those who absolutely need to be in an ICU are sent on hours-long trips to out-of-state facilities that do have some availability. Time is brain. One Johns Hopkins doctor estimates that coronavirus cases may start to decline in the beginning of March. This is another way of saying that for the next two months, and maybe for some time after that, cases will either stay at levels that are already producing these conditions, or will rise even further. And for my family, this means that for the next two months, our plan is simply to hope that nothing else happens to Heather – but it’s not like we were planning for her to have multiple major strokes the first time, either.
I think about the State Department’s warnings on healthcare in North Korea:
If you have medical problems, do not travel to North Korea: Medical facilities in the DPRK lack resources and electricity. Medical personnel have inadequate or outdated skills. Hospitals in Pyongyang can perform basic examinations and lifesaving measures, but functioning x-ray facilities are not generally available. Avoid surgery. If you have an accident outside Pyongyang, transport back to the capital can be lengthy and without medical assistance.
And I think: I miss living in a country that had hospitals.
We know that a pandemic pregnancy is a more dangerous pregnancy. Similarly, a pandemic stroke is a more dangerous stroke. The acute threat to Heather’s life was beyond terrible on its own. The chronic threat of being surrounded by a potentially lethal virus that’s everywhere in this country is likewise terrifying in its own way. But together, they’ve combined and interacted to multiply into a situation facing my wife that is much worse than the sum of its parts. There is the ever-looming possibility that the same thing could happen to her again, and the crucial resources that could still only give her odds of 60% the first time around won’t be available this time. Moreover, she now has multiple risk factors that drastically increase her chances of severe or fatal COVID-19 illness. Her every interaction with the medical system, whether at a doctor’s office or a pharmacy or a hospital ward, comes with a risk of exposure. Even a precautionary ER visit, of which she’s now had several, means a certainty of being in the same building and sharing air with infected patients.
It is a nightmare within a nightmare. And the threat itself is such an immediate concern that apportioning blame is almost an afterthought. There’s more than enough to go around, from whoever was involved in the failure to contain this virus in the first place, to every member of the public who can’t make the right choices for the protection of their health and the health of their fellow citizens, to governments at every level who seemingly know the exact right thing to do just so they can instead choose to do the exact wrong thing.
But if everyone had done everything right and our world had still ended up in this situation, I would still be angry. The air is full of probabilities of death and even breathing, let alone seeking medical care, has become an unthinkable risk calculation. Every cough, every sneeze, carries the image of my family dying. I’m so angry all the time. That resentment is going to be there simmering, barely contained beneath the surface, for as long as it keeps being fed and fueled and left unremediated. It’s going to be there because of the wedge that’s been driven into the relationship between my family and the world, the world we thought we could count on even in our darkest moments, until this situation is finally addressed. That’s what resentment is. ■