Fear, Grace and Silver Linings in the Age of a Pandemic

I wanted to write a piece on having grace in this pandemic, but I’m literally the last person who should do that. I’ve lost track of how many times I’ve said, “I hate everyone” in the last month. Grace seems to be the one quality that eludes me. I’m swimming in the feelings of anger, betrayal, superiority and self righteousness. Those emotions have, over the last week, settled into their base components of fear, grief, disappointment and despair. At the bottom of it all, I am so sad. Sadness is my least favorite emotion. I never know quite what to do with sadness, but I feel compelled to sit with it for the moment. I feel like sadness may be the one emotion that can propel me in the right direction.

I am going to try to steer clear of politicizing this or fall into the trap of trying to debunk the myriad of conspiracy theories we’ve all seen on social media and YouTube. Greater minds than mine have offered analysis to those theories and if you don’t believe them, I can’t imagine anything I say will make a difference. However, I would like to introduce a presupposition for the rest of this blog. It’s simply that COVID is an actual disease, and that it is contagious and has a higher mortality rate than the flu. I know people are still debating the later part of that statement, because we don’t have our arms around how many people actually have been infected with COVID. But that problem is hardly unique to COVID. We never have a real number of people infected with the flu each year either. So hopefully we can at least agree on that. Additionally, context is important to perspective, and I’d like to give you a little insight into why I feel and believe the way I do. 

When I was 29 years old I contracted viral meningitis. I was in the best shape of my life. I was single and childless and I worked out like it was my second job. I was rocking. I was pretty sure nothing could knock me down, and then one day I got a headache that didn’t go away. The headache spread into a backache and I quickly found myself overcome with fatigue. Within days, I was having lapses in memory and trouble with word finding. The pain was like nothing I’d experienced. I would be on percocet round the clock for the next three months. I remember my brother talking to me and I kept asking him to repeat himself. Although I knew he was speaking English, I could not understand what he was saying. I cried in my neurologists office and asked if I’d be stupid forever. He assured me I would not be, but that it would be a long road. I couldn’t work full time again for almost three months. My first day back I remember trying to put things in alphabetical order seemed like a monumental and exhausting task. It was devastating and humbling and it was the first time I realized how quickly things can be taken from you. It was the first time I realized that you can only mind over matter until your mind doesn’t matter, and your body betrays you. 

I became a hospice nurse in 1999. I’ve spent the better part of the last two decades watching people die. I have a short list of diagnoses I don’t want to die of. I have a shorter list of diagnoses that might make me see suicide as a viable alternative to the disease process in front of me. COVID does not fall into the later, but it does fall into the former. When it is severe it is devastating. You know of the respiratory issues. We are learning about the associated hyper coagulation leading to strokes and blood clots in the lungs and extremities. Just as people begin to feel they are recovering their own immune system goes into hyper-drive between day 7 and day 10, leading to a number of inflammatory processes that are life altering if not deadly. People have ended up in burn units, because their skin seems to inflame and unravel off them. People have lost limbs. People have gone into multi system organ failure and end up on dialysis. People are on the vent for days, weeks, months. Multiple hospital systems have the same shared data that 30% of COVID patients that enter the ICU never leave. Those that do are not going home back to life as it was. They are looking at months or years of rehab and are likely forever altered. They will not be the same. Their family will not be the same.

Luckily, in most of the United States we have not exceeded our capacity to care for them. If we do, bedside providers and administrative staff will be tasked with navigating how to decide who receives the resources and who doesn’t. It’s a bio-ethical nightmare. The moral distress of those choices will never leave the healthcare workers involved. We will carry it with us always. Already healthcare systems are preparing for this. Policies and practice are being developed for when we may have to take someone who is benefiting from artificial ventilation off the vent, because the guy in the next bed has a better chance. It will be battlefield triage. It will be necessary and it will be reasonable, but it will be an avoidable death. In my mind it will never be right.  The time to do what is right will have passed us by then. You may find comfort knowing that you have a clean health history and you are young and strong, but it’s not that simple. If you are a police officer shot in the line of duty or a firefighter who falls off a roof and you need a vent, but the COVID patient next to you has a better chance, you will not get the vent. I think people fail to realize there won’t only be a shortage of resources for those unfortunate enough to have severe COVID. There will be a shortage for everyone. Trauma patients, cancer patients, postpartum moms who hemorrhage, everyone will lack resources. It will come down to who has the best chance of good outcome. We are not moral police and you don’t want us to be, that is a slippery slope for healthcare. We treat the drunk driver and their victim the same. If you need heroic medicine your chance of getting it relies on who is in the bed next to you. 

In the beginning it truly did feel like we were all in this together. I think it’s obvious to everyone that is no longer the case. There seems to be two factions with variations within them, but for the most part there are the Skywalkers and Yodas. I keep thinking of that scene in Empire Strikes Back where Luke wants to go save his friends and prepares to leave even as Yoda tells him he is not ready. Luke say’s “I am not afraid”. To which Yoda replies “You will be”. 

As a member of the Yoda faction let me be clear I hope to God I am wrong. I have never wanted to be wrong so badly in my life. I hope this is an overreaction. I hope it’s never as bad as I fear it could become. However in the face of nearly 100,000 deaths in four months and a skyrocketing unemployment rate I feel there is much to fear, for all of us. 

The paradox of these factions is that moving forward with the supposition that there really is little to fear in relaxing infection control measures, and we have a catastrophic outcome with an overloaded healthcare system and rolling shutdowns. Those who preached sustained early shutdown will claim they were right. Alternatively the supposition that there is much to fear, and acting on that notion by sustained masking and social distancing will likely lead to the health system not being overwhelmed, and there will be no second wave that shuts us down again. Those who believe it was all an overreaction can claim that they were right all along. Sometimes we become victims of our own success. I hope that those of us who error on the side of paranoia suffer that fate. 

Fear

Fear. We hate it. It’s weak. Losers are motivated by fear. It’s completely un-American. Or is it? Fear is instinctual. Fear keeps you alive. Fear keeps you from making some bad fucking decisions in life. I am admittedly terrified by COVID. I am so frightened for those who have already been affected either in health or economics. I am fearful that I or a loved one may suffer the same fate. Unless you’re delusional this is not a “buck up camper” moment. It’s been proposed by a particular news station that now is the time for courage. We should be brave and get back out there. I never understood how painfully dismissive it is to hear things like “it will be OK” or “don’t be afraid” until things weren’t OK and I had good reason to be afraid. Such easy words are most often spoken by someone who either has an agenda, lacks empathy, or has never known loss. They are the words of someone who leads from behind. It’s not necessarily from bad intentions. I know that. The intention is to push you forward, and keep you from getting stuck in fear. But when you put it in such simplistic terms you lead from behind, and no one is ever really following the person who leads from behind. So, when you are not afraid but your friend is. Please ask them why they are afraid. They may have very good reasons to fear. Then, if it isn’t already obvious how you can ease the fear, ask how you can help. It’s likely there is something you can do. That is how you lead from the front. 

I realize some people still see no reason to fear in this pandemic. Some people think it’s politically motivated and perhaps a hoax. I suspect they are the most afraid of all of us, or they wouldn’t resort to that level of denial and magical thinking. I’m not knocking it. I wish that is where I was right now. I have utilized both coping mechanisms as a respite in times when I needed an escape. If you are one of those people, I don’t blame you, but I’ve got nothing for you. I wish you were right, but all evidence points to the contrary. 

Grace

Grace has been so hard for me. I hate that grace eludes me, because I am so grateful for the grace others have given me. I try to pride myself on being liberal with grace when it comes to others. As we grow we see life through all of our experiences. It filters our perceptions, and when we are healthy we view others from a high place with no obstructions. We can pull in all of our experiences and knowledge to view those around us. When we are in crisis, it’s as if we fall into a hole or narrow canyon and our view is obstructed. We can only see others through that narrow view and sometimes that view does not include grace. 

I am in that hole. I see the person and their offensive action and I see nothing else. When people advertise on social media that they are not wearing masks and are not social distancing, from my hole I translate it into a very personal “Fuck you, I don’t give a shit if my actions kill your husband. This is convenient for me, I think public health is stupid, and I do what I want.” I realize that I am the last thing on their mind when they do this. They certainly have no intention of putting Garry at risk. Some of these people have gone above and beyond to show love and support for us through Garry’s cancer, but now all I see is a person who seems to have forgotten that there are people like Garry out there, and I feel betrayed. As a wife, as a mother and as a nurse, I feel betrayed. It’s not reasonable. These are not people we are even going to see for probably months, and I love them. I respect them. I’m closely related to some of them. But I am so hurt by them because I’m so in the thick of it, and I feel forgotten. I feel like my plight has been abandoned.  

My New Years resolution was to rest. I didn’t want to be challenged or take on anything new. I am battle weary from cancer and grad school. I am so tired. I’m broken and altered and in many ways lost. But then COVID happened, and I feel I must battle on. I’m not even sure what or who I’m swinging at. I want to get out of the pandemic with relationships intact, and it’s really hard. So what do I do? Well, I started by going off social media. I’m not in a place to receive other people well. I’m doing all of us a favor by not looking. I’m not sure I am presenting well either (maybe not the best time to write a blog, but hey, I’m not on social media, so no one will ever read this). I also changed my voters registration. Sorry Dad, please don’t come back and haunt me but I’m officially unaffiliated. My previous political party hadn’t aligned with my faith or values for a long time. It actually feels amazing to be free of that yoke. I’m social distancing for real. I’m not just physical distancing. I’m really distancing myself, because I’m tender right now. I don’t trust myself to not cause hurt, and I don’t trust myself to not get hurt. It won’t last. I’m an extrovert and I love too many of you to not reengage sooner than later. But for the moment it feels safer. If my adulthood has taught me anything it’s that I crave safety above all else. I don’t function well if I don’t feel safe. I guess that even if I can’t find grace now, I’m doing my best to be able to salvage it in the near future. 

Silver Linings

When Garry got sick our lives hung on one word. Time. Would we ever have enough time. Time with each other time for him and our son. Time became the most precious commodity in our lives, and there was never enough. I told our son the other day, “I think we will all look back on this time with great fondness”. He looked at me like I had just grown an extra head and said, “I don’t think I will”. He’s ten and misses his friends, but I’m sure when he is grown he will think of it differently. This time is a gift. I don’t want to miss it because I’m angry and frightened. That would be tragically regrettable. 

Aside from time I have learned to lean on my husband again. I think when he got sick, I stopped. Survival told me I needed to be fully self sufficient sooner than later, because at any point I was one bad scan and weeks away from being a widow. So, I stopped letting myself need him, and I didn’t know how to reverse that once he got well. Then COVID showed up and handed me my very first existential crisis (good God I hope it’s my last). COVID dropped me and Garry caught me. The man is an oak. He always has been. He’s beyond fair. He’s so reasonable it’s irritating. He grounds me, and for some inexplicable reason he adores me. The English language lacks the words to explain how good it feels to lean on him again. I feel safe. It’s a beautiful silver lining. 

Who Is Setting Your Horizon Line

Recently I was nominated for a caregivers retreat with No Barriers. The No Barriers tagline is “What’s within you is stronger than what’s in your way”.  The retreat itself was amazing, but even more impactful was the story of it’s co founder Erik Weihenmayer. As a toddler his family learned Erik had a diagnosis that ensured he would become blind as a teenager. Erik learned to wrestle, a sport he could do with low vision. It was on the wrestling mat that Erik learned his mother had been killed in a car accident. Within a year he lost what was left of his sight and was plunged into darkness. 

Erik learned to climb. You can feel and climb a rock face without seeing it. Rock climbing lead to mountain climbing and on May 25, 2001 he became the first blind man to summit Everest. In 2014 Erik and fellow blind kayaker, Lonnie Bedwell, paddled the Colorado River through the Grand Canyon, and that is where my life first intersected with Erik’s although at a distance. 

My husband is a paddler. He can paddle a kayak but his love is rafting. The rafting community is funny to an outsider. There is a unique camaraderie to it, and all paddlers are pretty sure they are doing God’s work. There was a time when I would have argued that point, but I no longer disagree. There is no cathedral like a canyon. There is no finer incense than pine, sunblock and wet neoprene.  Water has always been symbolic for new life and redemption. Rivers are the arteries of God. 

A fellow paddler and friend of my husband’s was one of Lonnie’s guides down the Grand Canyon. His name is Chris Drew. He is a bit of a pure soul and really hard not to like. I don’t know him well, but I’ve always walked away feeling better for knowing him at all. It was my husband, Garry, that put together the No Barriers/ Chris Drew connection when I was on the trip. He told me Chris has been on the support team for the Grand Canyon trip Erik and Lonnie did. There was a documentary about the trip and he hoped Chris would be in it. We planned to watch it when I came home. The movie is called “The Weight of Water”. 

I returned home and life was busy. It was several weeks before we sat down to watch The Weight of Water. We had hoped for a glimpse or two of our friend Chris, but he was actually featured somewhat prominently. When Erik would paddle down the river he wore a headset in his helmet and another kayaker would guide him verbally through rapids. The guide would tell Erik what strokes to take and when. Lonnie’s system was a little more archaic. Chris would paddle ahead of him all the while calling “Lonnie, Lonnie, Lonnie” and Lonnie would deftly paddle towards the voice calling his name. 

From the very first time my husband took me out on a river he has been determined to teach me to read water. I have learned to read water although I am hopeless on an oar-frame. I do quite well on a paddle board or ducky. Now Garry is teaching our son to read water. He will point down river and say, “do you see that horizon line”. He will show him what to avoid and the best line to take. How to tell where the rocks are and where you may get into trouble. I can’t imagine going down a river blind. I would have to have great faith in the one who set my horizon line. 

Knowing what little I know about water and watching the dance of Chris leading Lonnie down the Grand left me asking myself “Who set’s my horizon line when I can’t see? Who’s voice do I follow? Who is calling my name?”.  

When Garry was sick he told almost no one at his crossfit gym. Even most of the coaches had no idea how sick he was. He would falter and they would tell him to keep going. He wanted them to set his horizon line according to what a healthy man could do. They did, and he followed. I am so grateful for the people who unwittingly set his horizon line for him. I am grateful for the voices that called his name and he was able to follow. He’s always been really smart about that sort of thing. He has always had a lot of discernment. I have not. 

I’m a bit of a sucker. My friend Laury and I joke about how we love everyone and two drinks in we also believe everything. I can think of many times that I have followed the wrong voice into potential ruin. I have trusted the wrong person to set my horizon line in a place that either wouldn’t challenge me or would potentially drown me. Then there is the voice that leads you to the rapid and falls silent halfway through. Worse still is the voice that calls you to them and then plunges you under water to save themselves. 

Who is setting my horizon line? Along with the bad I have amazing people set my line. They’ve given me grace and permission I wouldn’t give myself. They’ve seen my capabilities beyond what I believed and showed me how to accomplish things I didn’t know I could do. I’ve had people paddle upstream and pull me out of the water when I couldn’t reach my horizon line. Who do I trust to set my horizon line?

But maybe the more important question is who’s horizon line am I setting? What kind of job am I doing for them? It’s a big responsibility and sometimes we are doing it without even knowing.  You can change someone’s life with a timely word or a hug. 

I hope when I am setting a horizon line for someone else, I hope I am very much like Chris Drew. I hope when someone needs me they know they can make it through the dark by following a strong rhythmic consistent voice calling their name.