She’s Electric

December 30, 2022 at 8:15 pm (Uncategorized)

I won’t start with mea culpas for it having been nearly two years since I posted here. But I’ve been busy—co-founding a non-profit that raised half a million dollars in 9 months; launching my son to college; surviving Covid; getting a few things published; staying married for 25 years.

I’ve also been wrangling with my health more than I’d like to. Andrew is turning 19. I know exactly how long I’ve had sarcoidosis because I was diagnosed when he was three months old.

I wrote before that I wasn’t built for long haul illness. I thought my spirit was like my former athletic abilities—more of a repeat sprinter than a marathoner. I thought the chronicity of this illness would kill me, the day in and day out sheer slog of it. But it turns out you adapt.

You adapt even when you think you can’t. To years of chronic pain. Months in the hospital. Complete loss of autonomy. Falling over from vertigo. Breaking bones when you walk. Not working . Not driving.

And then there was this magic pause. No more long hospitalizations for neurological issues. No more massive doses of steroids. I started on a wondrous journey, a return to myself—but a changed self. Hiking. Ice skating on frozen lakes. Writing. That whole non-profit thing.

Let’s be clear that I wasn’t wholly well. Perhaps I ran on 25 percent of my pre-sarcoidosis self. I thanked God for every percent. But I managed fatigue, ongoing gastrointestinal catastrophes. I still take lots of immunosuppressants.

But I wasn’t sick. I’m not sick. Not sick like before.

I have, however, discovered my inner electric being. Starting 11 months ago, my cardiac sarcoidosis has re-started. In the middle of my first ever speed skating event, I got shocked by my defibrillator for the first time ever in the 12 years I’ve had the thing. I was so surprised, and I’m so stubborn, I finished the 10K skate. Months of increasing fatigue, and then getting diagnosed with a second autoimmune disease in my guts (more immunosuppressants!) turned out to be a lull before the storm.

The storm is electric. Scarring from cardiac sarcoidosis or perhaps because of new cardiac inflammation—in Chronic Town your guess is as good as the best specialist’s—has caused crazy arrhythmias. A few of these have caused my defibrillator to unleash more “treatments,” which means I get the equivalent of the defibrillator paddles you see in medical dramas happen inside me. With no warning. Apparently my heart was going 280 beats per minute the last time my defibrillator set loose a surge of electricity to counter the misguided electricity coursing through my heart’s AV node or my left bundle branch. Or both. It’s hard to keep straight.

I’m now on handfuls of rhythm regulators. They make me more tired than even the usual chronic illness constant fatigue. I feel like I’m moving in concrete. Not zipping down internal transmission lines. I plod. Perhaps it’s better to get flattened by internal jolts than swim through this medicated cotton wool? It sure feels like it most days.

But as I said, we adapt. I’m adapting, with grumbling and grouchiness at being so tired and yet still feeling my heart skitter around my chest. I adapt. With less grace than I’d like.

If you’ve read this blog over the years, you’ll know I borrow song titles. It’s because I can’t think up my own. “Chronic Town” is an REM song (and it was Jay’s idea). “She’s Electric,” is by Oasis, a band Andrew loves.

It’s appropriate. I am electric. We all are. You may want to think of yourself as warm flesh and blood. But your heart beats, your nerves flash, from inner electricity. The stuff that runs your computer is what makes you human.

I am electric because I keep flickering on. I have faulty wiring, and so collapse in bed if I overdo it. But the surge is there, my inner pulse.

I wrote here long ago that I was done with hope. I stick to that statement. Hope is psychic cotton candy—fluffy and un-sustaining. And also dangerous. Hope makes your heart hurt and your brain want what it can’t have. Hope keeps you dreaming for better days, not putting one foot in front of the other, living the life you actually have.

I may be post-hope but I am definitely still electric.

It may scar, short out, even kill. But when you’re electric, you burn bright. You illuminate. You keep thrumming. I’ll take it.

May your new year be as bright as lightning cutting through the night sky. May it light your path. May it guide you to keep on ticking.

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Tunnels and Lights

February 3, 2021 at 11:05 pm (Uncategorized)

I have been living apart from Jay and Andrew since early June. The doctors who manage my sarcoidosis determined early on that my risk factors for Covid-19 were too high for me to be at home without both my husband and my teenager in total lockdown.

In six days I am planning to return home to them.

I’ve had the immense good fortune to get vaccinated. In late December I received a dose of the Moderna vaccine that would otherwise have gone to waste. Two weeks after getting my second dose, I should have as much immunity as this vaccine provides.

When I got the call to come in for my first shot, I was test driving a new car with Jay. We were both wearing N-95s because that’s the way we roll. I broke down that evening back in my apartment alone and finally maskless. I felt such relief. An end was in sight! I had followed the rules, kept myself alive, and now it felt like fate was smiling down on me. I imagined coming home with no anxiety.

Life is always more complicated than we want it to be. There is often light at the end of the tunnel, but we’re still trudging in that tunnel towards it. Since getting my first dose of the vaccine, frightening new Covid variants have emerged. These might make my vaccine less effective. I pestered my doctor by email about whether I’d really and truly be safe from Covid, two weeks after I had both vaccines on board. I kept getting the same answer. A resounding “probably.” Should a Covid variant elude the full protection of the vaccine, he thinks I will most likely get a less severe form of the disease.

That is enough for me. My lease on my apartment expires at the end of this month. I want to share a home with my husband and my son again. I want to sit at the same table and eat dinner with them. I want to walk through the door without making sure my mask is pinched down on the bridge of my nose. I want to see Andrew’s full face. I want to hug them, and not turn my head away as I do. I want to hold onto them and not let go.

It’s hard to back down once you’ve taken extreme measures. I had to take extreme measures. But it’s time. At first I thought I’d step out of the tunnel into the hot sun of mid-day. On further reflection, I look around and see that even if I have reduced my risk, not everyone has been so lucky. I’m afraid for the world, as rich countries keep all vaccines for themselves and the richest in the rich countries get a disproportionate share of these vaccines. I know that Covid will do what viruses do—keep on mutating to stay alive. And after a year of watching, I’m confident the world is going to keep pretending Covid is done with us, again and again, despite all evidence to the contrary. What I’m heading towards seems more like a candle and less like the sun.

But there is light and I am moving towards it. One foot in front of the other. This is how I’ve lived with sarcoidosis for nearly 17 years now. Keep moving. It’s how I’ve spent the past 8 months apart from my family. I don’t go fast. I plod. But I move. It’s isn’t always pretty, but there can be a kind of grace in picking up your feet and shuffling ahead.

I oscillate between emotions. I am giddy like a kid coming home from a very long and lonely summer camp. I am anxious about letting my guard down. I am excited to catch up with Jay and Andrew. This separation has been more than twice the length of my longest hospitalization. I get to go home! I’m sad so many are not vaccinated and worry about all those who are vulnerable to these more contagious variants and haven’t lucked out like I did with the vaccine. I don’t have words to express the gratitude I feel. But I also worry about Covid variants and wonder if I’ll be back in my own apartment in the next few months if the vaccines can’t hold the line. But I can cook dinner and eat it with my family. I can fall asleep next to my husband. I zig and I zag like a pinball finding its way to the end of its run.

I remind myself that I can do this, that I have been doing this for so many years—live with uncertainty, live with risk, live on the precipice we are all perched on.

I’m keeping myself pointed at that light. It flickers. It flares. It dims. But I know where I’m headed.

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2020 Should Stay With Us

January 5, 2021 at 9:20 pm (Uncategorized) (, , , )

One of my friends ritualistically burned pages of a 2020 calendar this New Year’s Eve.  I’ve read about other people reciting everything that had gone wrong before the stroke of midnight or cursing 2020 on its way out the door.  The overall vibe was that 2020 was over—and with it all the sadness of the past months.  Out with old, and in the new!

I’m trying a different strategy.  I’m remembering 2020.

There’s no doubt that 2020 was a terrible year.  Over 350,000 Americans died of Covid-19.  1.85 million worldwide lost their lives to it.  The economic fallout has been disastrous too.  13 percent of Americans recently reported that they couldn’t put enough food on the table for their families, and 1 in 5 renters are behind on housing payments.  The pandemic acted like an x-ray machine, scanning our society and illuminating the fractures that were there all the time—the inequities of our healthcare system, the decades of undermining public health infrastructure, the precariousness of American workers, our political polarization.

2020 was a hard year for me personally.  I’m into my sixth long month of living separately from Jay and Andrew because of my Covid risks.  Even though my sarcoidosis was mercifully less vicious this past year, the Covid X-ray machine illuminated fault lines in my own life.  As much as I don’t like being perceived as such, the reality is that I am still fragile.  I try and remain grateful that my family has the resources to pay for extra housing for me.  While millions of others are in danger of losing their homes, I’ve been able to isolate myself.  I’ve been as physically safe as I can keep myself.  But I can’t put my thoughts and feelings into the equivalent of an N-95.  I’ve been lonely.  I’ve been scared.  I’ve spiraled into anxious dark places many nights, and haven’t been able to roll over and poke Jay awake as I once did to have him reassure me that the worst won’t come true.  I’ve been changed. 

I’m old enough to have lived through a thing or two.  I’ve learned that aggressively forgetting something never works as a long-term solution.  Believe me, I’ve tried.  I’ve spat at years as the calendar changed over, telling myself this would be the year that I would stop being sick, start losing weight, stay out of hospitals, etc., etc.  Sometimes, just weeks later, I’d be back in the hospital, gaining more weight, still sick.  Diseases don’t need paperwork to keep infecting in the New Year. 

As hard as 2020 was on me, I don’t want to forget it, even if I could.  I am a different woman than the one who moved into this apartment with two suitcases and eyes backed up with unshed tears in July.  I’ve learned that I believe my life is worth saving, even if it’s inconvenient and painful—and I’ve acted on it.  I’ve learned that I can pull myself out of what I once thought was infinite darkness.  It turns out that even darkness is finite.  I can’t wait to be back home, someday, hopefully soon.  But I won’t pretend that I never left.

I also won’t forget the mortal fear that I’ve lived with—fear made worse by selfish idiots from the President on down, who refused to wear masks or to abide by even the most basic public health precautions.  I will remember the businesses that flouted the laws and endangered their customers.  I’ve taken note of people on social media who have spread misinformation and dangerous lies. 

More importantly, I won’t forget the 350,000 who perished needlessly in 2020.  There were no national or statewide mourning rituals for them.  They died alone, and it feels like not many people beyond their family care to remember them.  We had no moments of silence or ringing of church bells, just a daily growing count of the dead that many didn’t bother even to look at.  I also want to remember the vision of our society that the Covid the X-ray machine showed us all.  People with less than $500 in savings suddenly without jobs.  Children without access to technology trying to “learn from home.”  Families going hungry.  Millions more Americans losing their healthcare because they lost their jobs.  Prisoners helpless as Covid ripped through their confinement.  The elderly left without hope or visitors for months, while contagion stalked their nursing homes.  Doctors and nurses working endless shifts while pleading for their neighbors to wear masks and stay home for the holidays.  And meanwhile, the billionaires got richer, Wall Street is doing great and it’s a new year.

We’ll be dealing with the fallout from 2020 for a generation.  I’m going to try and remember it all, even when it hurts and takes me back to a time I’d rather forget.  We owe it to those who died.  We owe it to those who are hungry.  We owe it to each other.   It’s not just memory for memory’s sake, though as a historian I think that’s important.  If we accept the transformative powers of this year, we can work—together—on repairing all those fractures. 

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The Bearable Lightness of Being

December 22, 2020 at 7:25 pm (Uncategorized)

For years I’ve dragged my feet on sorting through all the toys, games, and books Andrew outgrew. They’ve piled up in the spare rooms in our basement, in the garage, and in every closet.

I don’t usually cling to things. I much prefer experiences like travel over possessions. So why have I been hanging on so tightly to old dinosaur floor puzzles, science kits for pre-schoolers, and a matchbox car collection?

For years I thought it was because I still hadn’t let go of the concept of having another child. The chance of this ever happening physically vanished in 2008, when I got the first of many rounds of Cytoxan, a chemotherapy that causes infertility. For a while after that, Jay and I talked about adoption. We even got the paperwork from the state adoption agency. But Jay and I both realized that the level of exhaustion we felt just looking at all that paperwork was a good indicator that we weren’t truly capable of raising another child then. A few months after I put the papers in the recycling bin, I spent several months in the hospital. Jay and Andrew (and everyone helping us) had more than enough to deal with. Bringing a new baby into our lives would have been catastrophic.

I spent many years telling myself to be grateful. I gave birth to a gorgeous and healthy baby. That is more than many couples have. Wanting another felt greedy. Still, my heart hurt a little as friends and family brought home their second or third kids. I never once begrudged them this joy. My heart just ached quietly.

About a year ago, I had the opportunity to help out new parents with their newborn daughter. The Mom was having some health issues and I was feeling well enough to lend a hand. It was a nice change for me to be able to offer help, instead of needing it. Since I am by nature a night owl, I took the night shifts with the baby girl. One night, torrential rain and wind storms shook the house. The baby woke. My dormant juggling skills got re-activated. I warmed the bottle, tested the milk on my wrist, changed her diaper, and sung a quiet song. Then I settled down with her in the dim living room, nestling her in my arms as she drank from her bottle. There is no gaze like that of a newborn contemplating you. Her dark eyes looked all-knowing and completely non-judgmental. In that gloomy 3 AM room, I stared back at her as the rain threw itself against the windows. Something in me released. Maybe the wisdom the baby brought with her from the place of creation is what did it. Maybe it was just time. But suddenly, I knew—not in my mind, but deep inside my body—that this was not to be my life again. I was ready for new experiences, for spending as much time as I could with Andrew, for launching him into the world, for learning how to live again in a house without a child, for (God willing) holding his child some day (but, as I tell Andrew, only when he is “emotionally and financially able to have a child—say when you’re 30.”) I love babies and children, and if I’d gotten a different playbook from the universe, I’m sure Jay and I would have had a larger family. But in that room, with that dark-eyed bundle of a baby in my arms, I let it all go.

The global pandemic stymied my plans to focus on spending as much time with Andrew as he’d tolerate before he leaves for college. As I’ve written before, I made the wrenching decision in July to live separately from Jay and Andrew. This allows me to stay safe from Covid and for Andrew to go to school two days a week. He’s an only child, and a social one at that. Locking him down for over a year would not be fair to him. But it’s been lonely living on my own. Jay and I decided to take on a significant remodel project to create a safe and separate apartment for me in the basement of our home. It won’t allow me to eat dinner inside with them or hang out without wearing masks. But I will be just a flight of stairs away from them. I can hear them and see them more easily. I need that.

Suddenly my full-time job has become emptying the basement, so it can be gutted and remade. I have no choice but to confront all of the physical manifestations of stages and ages Andrew left behind that have piled up down there. It didn’t take long for me to start crying, as I opened up shelves and found games I have clear memories of playing with my boy when he was two or three. We were blessed with many generous family and friends, so Andrew had a lot of toys. I also kept most of his artwork and school work.

It has become my new routine to descend into the basement, pull things out, and sort and pack them. Every time I cry. I truly have let go of the concept of another child. I am not sad because Andrew will never have siblings to play with these things. Now I am grieving all the time with Andrew that I did not have. I lost a lot to illness—months in the hospital, years of being too sick to get out of bed. I didn’t get to me the Mom I had planned to be. That’s been the hardest and most bitter part of living separately now. Ironically, just when I’m having the longest run of better health since Andrew was born, I am absent again.

I’m also staring down time in the basement with my boxes. I think most mothers feel it pulling at us from within. It seems that just a minute ago Andrew drew those dragons I am boxing up, or a week ago that he started kindergarten and wrote a poem about the color gold. Doesn’t every mother mourn the minutes she didn’t have with her child? I think being a parent is the hardest job ever. If you do it right, you are constantly letting go of the person you most care for, the one you want to hold onto the tightest. And still, we let go, and it sure hurts.

It’s not all gloom and doom in the basement. I’ve discovered great joy that comes with my daily tears. I love giving these things away. I keep the toys, drawings, books and games that I have visceral memories of using with Andrew, or those that I would love to play with his child (some day when he is emotionally and financially capable, you know, when he’s approximately 30.) Then Andrew masks up, and he sets aside the things he wants to keep. All of this I box up for storage until I can unpack it in our new space. The rest, I let go. The joy that comes with letting go has surprised me. I’ve single-handedly given the domestic violence shelter in town a new game room. Even better has been putting photos of stuff on Facebook for free. The memories I was afraid to face, that were crammed into closets and spilling out of drawers, are now easing a tiny bit of this year’s pain in others’ lives. A few of the parents who have come by to pick up Andrew’s microscope, collection of toy construction equipment, and other stuff have told me that I’ve made it possible for their little ones to open gifts on Christmas. Now that makes me cry again.

I’ve said this before, so pardon my repetition. But during my 16 years in Chronic Town, I keep learning the same lessons over and over. One is that what matters most is the capacity to participate in your own daily life. Cooking and eating dinner with your family, folding your kid’s wash, having tea with a friend, talking to your Mom on the phone. This is your life. This is the scaffolding of your heart. The other lesson is to let go. There are no guarantees. None of us got a notarized document from God promising us anything. It’s hard to let go of health, wealth, a sense of what should be, could be. In this year of incalculable loss and pain, it’s easy for us all to cling more tenaciously to what we think is ours. I sure do. I wanted more time. I wanted to know Andrew a little more and for him to know this healthier me. I wanted it so badly that some nights when I drove back to my solo apartment after an evening with Jay and Andrew, I screamed as loudly as I could inside the car for the whole way back. I wanted it so badly that half the time I am ready to throw in the towel and just move back home and pretend there is no Covid. Give me the hands of time, and I would have pushed their sharp edges back to my advantage.

The more I let things go, the easier the letting go becomes. I’m sure I’ll cry when I’m down in the basement back to my sorting again. It seems to be part of my process of letting go. So does the feeling of lightness that comes later. I’d been holding onto what I thought I had lost so tightly that my hands hurt. I didn’t know how to open them. For now, I do.

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It’s the Economy, Stupid

December 17, 2020 at 7:27 pm (Uncategorized) (, )

One of my favorite writers about all things Covid-related, Zeynep Tufekci, has an article on Substack that stopped me in my tracks.

It’s about the order in which Americans will likely be vaccinated.  Once again, it looks like we will as a nation do things very differently than the rest of the world.  Because we’re likely to have limited vaccines for many more months, we must make difficult choices.  It’s too bad we’re in this situation caused by yet another unforced error—this one by making our vaccine scarcity worse than it had to be. But that’s another post in itself.

We are first vaccinating health care workers and nursing home residents and workers.  This is completely logical and I think every country is doing the same.  What happens next is where things get tricky. As Tufekci argues quite convincingly in her latest piece, age and underlying health conditions account for an overwhelmingly percentage of Covid deaths.  90 percent of Covid deaths in the US are from people aged 55 and over.  If the US were interested in saving the most lives, it would be a no-brainer to next vaccinate the elderly living outside of nursing homes and those like me with risk factors.  But it looks like this is not going to be the CDC’s recommendation.  Instead, the vaccine will likely be offered next to essential workers (an ill-defined and potentially huge portion of the country.)  There is some logic to this, if our country’s goal is to limit the spread of Covid and thus get life back to normal more quickly.  Vaccinating workers could help our stuttering economy.  The CDC has also noted that prioritizing essential workers would address inequalities since many are people of color.  

Obviously, I’ve got (white) skin in this game.  I’ve been told by every healthcare professional I’ve talked to since March not to get Covid because I probably wouldn’t fare too well if I did.  This is why I am living apart from my family.  I’d like to return to my home.  I also don’t want to die. I feel very alone and anxious. Last night I slept for just a couple of hours.

I am angry at how the US has handled nearly every aspect of this pandemic since the beginning.  I feel strongly that this country has chosen economic well-being and the stock market over the lives of its citizens.  I’ve read and heard elected officials and policy makers at all levels argue that economic health trumps physical health.  Some have said outright that the elderly should sacrifice themselves for the good of the economy. Twitter trolls have told me to stop complaining because “I’m just going to die anyway.”  This expected new decision on how to vaccinate Americans feels to me like yet another prioritization of the economy over human life and health.  Certainly vaccinated essential workers can keep stores open, poultry processed, and packages delivered. But even the CDC panel making this recommendation is explicit that more lives will be lost with this choice.  I understand that this is terribly complicated. I know that economic hardship is awful, that the ranks of those in poverty grow every day, and that too many small businesses have shut down.  I know that people are hungry and food banks are struggling to meet the demand.  I know that kids who are out of school aren’t learning.  I know that mental health issues are on the rise.  From my perspective, though, you can re-open a business; you can’t bring back a dead person.  We could choose to pump more money into our economy.  Billionaires have gotten even wealthier during the pandemic.  We make choices not to tax those billionaires and instead let families go hungry.  There is one choice we can’t ever undo, though.  And that is to raise the multitude of the dead.  Many have died without family or friends with them.  If they were lucky, a masked and goggled nurse held their hand at the end.  The current prediction is that 500,000 Americans will die of Covid by March, 2021.

Prioritizing essential workers over the elderly and the at-risk will kill even more.  It’s hard for me to imagine that we would make this choice.  As Tufekci wrote today, “[I]n Utah, a 30-year-old teacher may be vaccinated long before someone over 70 or even 80—even though the latter are at so much greater risk if infected. In fact, it looks like teachers, police and food and agriculture workers will all precede adults over 65 and people with high-risk medical conditions.”

Once again, the US is charting its own course with Covid.  You can add this vaccination protocol to our rabid anti-masking sentiments and lackluster public policy for what separates the US from countries that have managed Covid much more successfully (Vietnam, Taiwan, New Zealand, Norway, Denmark, Canada, etc.) Tufekci points out that prioritizing essential workers is  “not what other countries rolling out the same vaccine are doing. For comparison…the UK-wide vaccination prioritization…sensibly ranks by risk, which corresponds to age.”

In theory every state is free to establish its own vaccination priorities.  But states have always used CDC guidelines in the past. 

I know this probably isn’t what any of you want to read.  It’s noteworthy that hardly anyone besides Tufekci is writing about this.  (She has been eerily prescient about almost everything Covid-related, from the CDC’s early nonsense policy against masking to restaurants and bars being the most significant vectors for transmission.) The pandemic was so 2020, and 2020 is almost over, right?  We have hopeful headlines about nurses getting vaccinated, with photos showing their relief.  Having the vaccine promised to us—“soon”— is supposed to soothe our Covid-fatigued souls.  It’s time to get our holly jolly on and go shopping!  Play some Christmas music, and do your civic duty by buying stuff (preferably with a mask on, but don’t get too strident about that or you’ll be accused of hating freedom.) If we crank the holiday music loudly enough, we can drown out snarks like me who are pointing out that we are woefully short of vaccines for the near and mid-term.  We can focus on 2021 like it’s some magical line fairies have drawn in the sands of time.  Coronavirus cannot cross that line.  Right? 

But here’s the thing.  I’m hurting.  I’m lonely.  I’m scared.  I’m confused why my country seems to value retail more than my life, my parents’ lives, and so many other lives.  And I don’t understand why this doesn’t feel important enough for people to talk about and worry over as a national community.  Don’t we all have someone like me—a grandparent, a friend with cancer, a cousin with diabetes?  Someone who has been following the rules and hunkering down because she believes her life has meaning.  I can’t live under a rock forever because my country doesn’t want to see me.  But I’m here, marking time until the rest of the country cares enough to put on a mask, stay out of restaurants, not have a Christmas party…and give me a vaccine. 

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20 Miles to Go in Hill Country

December 1, 2020 at 1:23 am (Uncategorized)

Andrew says I am too pessimistic about Covid-19.  I told him that I feel like I am realistic and at least 50 percent of this country is living in la-la land.   “You have to let the present unfold in good ways,” he said tonight as we ate dinner—in separate rooms with air filters making conversation difficult.  “You have to prepare yourself for what is coming,” I said.  And then we dug into the excellent mashed potatoes that are part of his cooking repertoire now.  

Andrew has a luxury a lot of the folks I accuse of being in Covid la-la land have.  He is young and fit without know risk factors.  Should he contract Covid, he will likely have a mild or even asymptotic case. The prognosis for me and the tens of millions of other American with risk factors is more grim. 

Everything I’ve read from Dr. Ashish Jha about this pandemic has been accurate.  Formerly of Harvard, Dr. Jha is one of our nation’s leading epidemiologists and public health officials and now heads up a team at Brown University.   

Andrew would definitely find Dr. Jha even more depressing than I am.  In today’s New York Times, Dr. Jha predicts 250,000 additional Covid deaths in the US by March.  Pause.  Re-read.  Yes, that’s the prediction and it is backed up with solid data. We could double the number of our Covid deaths in four months.  This assumes vaccines will be arriving, starting at the end of this month, and still half a million of us could be gone.  “The next three months are going to be just horrible,” Dr. Jha added.  He wasn’t talking only about the deaths, but also our nation’s overflowing ICU units and shortage of nurses and doctors.  He said this in the context of infections surging (on top of a surge) because of Thanksgiving and a Christmas gatherings.  In Wisconsin, one hospital is stashing Covid patients in its ambulance bay.  In El Paso, Covid wards are called pits.  Intensive care units there are now enormous open rooms.  Once a day, a Catholic priest comes and stands behind some plexiglass and administers a stripped down version of last rites to those in need.  And this is before the holiday surge of infections catches us.

I keep myself as educated as possible about Covid not because I want to wallow in gloom, though Andrew might think otherwise. I feel like my life depends on it.  Without much leadership at all levels of government, I’ve got to understand the benefits of air filtration systems or the likelihood one of the new vaccines will be effective in someone immunocompromised like me.  Without the healthy’s luxury of banking on a good outcome, I must be prepared. But even with my extra stake in all things Covid, I am so sick of it.  We’re all tired of Covid.  I sure am.  I want to set my masks on fire, never think about viruses in HVAC systems or living quietly in my son’s upper respiratory tract.  I want to run home NOW and fling myself into Jay’s arms. I want to wake up next to him, with the light casting shadows through the blinds in a pattern I memorized years ago. I want to fall asleep to the sound of Andrew listening to music.  And in between, I want to be unafraid around the people I love best, in the home we once shared.  I want to see their faces without masks.  I want to hug them both long and hard.   

As tired as we all are, it feels like we should be done.  Surely we’ve parsed 6 feet enough, done enough “digital learning” with our kids, worried enough over every cough to have earned finality.  Right? But we’re not there yet.  These next few months will define who we are, what our values are, and what we will do to protect others.  

For me, this feels like the psychological equivalent  of the Team USA Cycling Trials back in 1988.  It was a stage race consisting of 3 individual races: a  solo hill climb time trial, a fast and furious criterium around city streets in a giant pack, and a 65 mile road race through “rolling” hills in rural Wisconsin.  I did terribly in the hill climb, good in the criterium, and had a shot of making the national team if I performed well in the road race.  It was hot and humid.  “Rolling hills” felt like Tibet to this Louisiana girl.  I somehow missed 2 water bottle exchanges in a row, so had the last 20 miles with only half a bottle of plastic-tasting warm water to get me through.  I was with a small lead pack, but I got dropped by them on a climb about 20 miles from the finish. For the rest of the race, I had my warm water to ration, more hills than seemed reasonable to climb, silence cut only when I changed gears.  And myself.  I had to try and catch the front pack, but could definitely not get subsumed by the peloton behind me.  I hated every pedal stroke. I hated the sun shining on the green countryside.  I hated the cows everywhere.  I hated the sound of my breath rasping. I hated the pain in my legs and my mouth that felt like sand.   I hated standing out of the saddle to get more power,  and I hated sitting back down and just turning my legs over.  But that is what I did, half-heartedly hoping my chain would snap or my tire would explode or a horde of locusts would descend…that something would let me legitimately stop turning those pedals over and yet not be a quitter.  

I finished 5th in that road race.  It’s one of the races I am most proud of.  I didn’t get caught by the peloton behind me.  Nor did I catch the faster women ahead of me.  I even sprinted on my own up the last “rolling” hill to the finish line (and then promptly passed out from dehydration and exhaustion).  Most of all, I didn’t quit. Pedal over pedal over pedal. 

I didn’t win a shiny gold medal.  I didn’t get chosen to wear the Stars and Stripes jersey as part of the official Team USA.  But I dug deep and found a place within me that wouldn’t let me quit, even though part of me really wanted to.

With the excellent news from Pfizer and Moderna on vaccines, it feels like we are (hopefully) in the last 20 miles of a road race.  We are tired. We don’t have enough of what keeps us feeling vibrant and alive on hand. Every cell within us can feel like it’s whispering to forget about restrictions or that just this once it will be OK.  But we’re on a road with stakes much higher than who gets on what team.  We are defining who we are —who we strive to be, who we want to grow into being—in these winter months. 

Mental toughness transcends pessimism or optimism.  Mental toughness centers you in the here and now, focused solely on what it is you must do in that endless-seeming present.  It’s not about glory or accolades.  Mental toughness is reticent and fierce. 

Don’t let the perfect be the enemy of the good in this long, dark winter.  If you make a mistake, just refocus on being the kind of person you know you are: the one who saves lives, not through heroics, but by quietly taking this long, final leg one step at a time.  Imagine the quiet pride you will feel when you know you dug deep, stepped up and did what was needed.  

Keep on turning those pedals over.  The 250,000 of your fellow human beings Dr. Jha referred to are as yet uninfected.  We hold their fates.  We hold their lives and the pain of loss their loved ones will feel.

We know what to do.  We know we can do it.  I hope that we will.  

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Winter Deer

November 9, 2020 at 9:14 pm (Uncategorized)

Winter came early to Montana this year.  A foot and a half of snow fell before Halloween. 

Cold and snow make it harder for me to spend time with Jay and Andrew, now that I’m living separately from them because of Covid.  Our days of family dinners outside on the deck or hiking together during long twilights are over.  I still show up to cook or eat dinner with them, but we eat in separate rooms.  We can see each other, and mostly hear each other if we raise our voices over the air filters. 

Driving home after 9 PM on the night after the snow storm, I was feeling sorry for myself.  Wasn’t it just my luck to lose access to the outdoors during a pandemic?  Of all the years for a hard winter, it had to be in 2020, during a separation I do not want.  I was also angry.  Angry at the weather gods, angry at many people’s eagerness to behave as though nothing has changed.  If we could all just wear our damn masks inside and stop pretending a cataclysm isn’t happening, I would be able to move back home sooner. 

There was hardly anyone else driving out on Helena’s icy streets.  I inched my way down a steep hill that intersects our downtown.  The stark light of the nearly full moon reflecting off the snow forced me out of my head.  It was bright enough that trees cast shadows in the dark. Their bare branches swayed like they were in prayer at the synagogue. 

Suddenly, as if the brittle air had exhaled them into being, eighteen deer appeared in my headlights.  They were mothers and fawns.  Typically, our urban deer lurk in yards and dart into the street to cross.  Not that night.  This was a herd.  They loped, but did not bolt, down the empty road for well over a mile ahead of me.  They brought me home, to my not-home, and then carried on their way. 

I sat in the parked, dark car in my driveway, feeling the air grow colder.  I watched the moonlight.  I breathed.  The writer in me, always on the lookout for a metaphor, wanted to see these deer as a sign of goodness.  They had been fearless, these mothers and children.  They were beautiful and strange.  If not for the early winter and the pandemic, I would not have been out in the snow and the moonlight to encounter them.  I would have been at home with my family, warm and sealed off from winter’s wildness.

But these deer were living beings, not constructs for me comfort myself with.  They were huddled together in the middle of a city street because they were cold and tired.  The deep snow made it hard for them move, so they were forced from the shadows onto the center line.  I don’t know if they noticed the moon, and the sacred feel to the shadows.  Probably not. More likely, they were stressed and hungry because the grass they feed on was lost beneath the snow’s carapace. 

The deer have stayed with me.  When I remember them, tears well in my eyes.  I am sad for their hardship, for the cold they will live with for months now.  I am also grateful for the grace they brought me in bitterness.  I look for them now every night, slowing down on the same stretch of road.  I have not seen them again. 

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Code of the West

November 6, 2020 at 2:36 pm (Uncategorized)

It’s an odd thing not to trust my neighbors anymore.

I’ve lived in Montana for nearly a quarter of a century, with a couple of years spent away. I’ve always loved the “get-along go-along” ethos of my adopted state. As long as you aren’t hurting another, the general vibe has always been to leave you alone. Smaller communities pride themselves on living by the code of the West. You show up and help members of the community when they’re in need. If their truck is stuck in a snowdrift or their house has been burned to the ground in a fire or the river washed away the one café in town, it’s a duty to help. In a place so starkly defined by our harsh environment, we need to stick together. You show up and keep one another alive.

Apparently, the code of the West doesn’t apply for anything related to a pandemic. It’s one thing to wench a neighbor’s car out of a river, but quite another to wear a face mask so that this same neighbor doesn’t die of Covid. I’ve watched Montana’s number of cases, hospitalizations, and deaths rise with rage, helplessness, and a sense of inevitability. We’ve had nearly 38,000 cases and 409 deaths in state of less than 1 million. Hospitals in our few cities are at or beyond capacity. Billings made national news. I watched with horror as a nurse cried about how he had missed being with the first Covid patient who died in hospital. He vowed never to let another patient die alone, and so has come in on his days off or stayed late to hold the hands of those who would otherwise die alone. Meanwhile, this nurse has moved into his basement so he won’t infect his family. His hospital is full. This means small community hospitals, many of which don’t even have a doctor in charge, will be tasked with critical care patients. And, still, the cases continue to rise.

At the same time, some communities openly flout the statewide mask mandate. The man recently elected to be our new governor appeared at a “freedom rally,” where hundreds of people mobbed together without masks. Two weeks later, cases and hospitalizations surged in this county. After starting an online petition, parents marched on the first high school football game of the season to protest capping the size of the crowd and requiring masks. Our legislature is planning to convene in person in January, bringing along avowed “anti-maskers” who will inevitably infect other legislators and people in the community—and then all go home and infect people there. Where will the sick go?

What has happened to our society? When did it become negotiable that it’s OK to infect someone with a potentially lethal virus because… What is the rationale? I’m still trying to understand. That it’s so burdensome to wear a mask? That a small discomfort outweighs the life of those around you? I can’t make any sense of it.

I need to let go of this constant rage burning in my gut. It’s not changing anyone’s behavior. I’ve got to accept that a basic compact of society has been broken. I must learn that my neighbors won’t help me stay alive.

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November 6, 2020 at 12:28 am (Uncategorized)

I am trying to follow through on a resolution. Rather than write less formal material in my Facebook posts and save my blog for more put-together pieces (that I never write), I’d like to start using my blog as a place to share thoughts, develop ideas, and hopefully have a dialogue. (Plus, it will keep me off Facebook more.)

Since I last updated my blog, a lot has changed in my life. I know Covid has brought all sorts of unwanted changes to so many of us. After consulting with my sarcoidosis experts, I made the gut-wrenching decision to move out of my family home. Since August I’ve been in an apartment that’s a ten-minute drive from Jay and Andrew. Given my underlying illness and immunosuppression, it was too risky for me to be around my husband and teenager without locking them down totally. If you’re interested, you can read about this decision in an essay I recently published in Montana Parent You’ll need to scroll through the digital version of the magazine to find my piece.

Although I am sad and angry to be on my own, I am trying every day to be grateful. I still get to see Jay and Andrew, though it’s getting more difficult to go for walks or eat dinner outside together now that winter has arrived in Montana. I remind myself that I have good health insurance and (for now) protections for my pre-existing conditions. I don’t have to show up for a job that could literally kill me. I am fortunate that we have the resources to keep me physically safe. Millions of other Americans like me with additional risk factors for Covid don’t. Jay still has good work. I live in a place where I can easily access natural beauty without running into a lot of people. I have good friends who check in with me and help keep me steady.

I think it is possible to be grateful and to grieve at the same time. I can count my blessings and still mourn losing time with my son in the last couple of years before he leaves home. I’ve already lost too much time, with all those long hospitalizations and years of sickness. I worry what will happen to my marriage. It was wonderful to be able to hike again this summer with Jay. But now what? I come over and we watch TV some evenings, across the room from one another, each wearing masks. We FaceTime before we go to sleep in our separate beds across town. Sure we talk. But marriage is rooted in casual physical intimacy. It is about standing shoulder to shoulder in the kitchen doing dishes or reading next to one another in bed, as much as it is about thoughts and feelings. I miss the specific smell of Jay’s skin. I miss the sense of his warm protection next to me in the night. What if we get out of the habit of one another and fall into a weird formality?

Like all Americans of good conscience (sorry anti-maskers, you’re officially uninvited from this community), there’s nothing I can do but keep moving forward as best I can amid this chaos, fear and loss, holding onto my gratitude as tightly as I can in one hand and letting my grief and fear be exposed to light in the other.

I’ve said a few times over the many years that I’ve posted here that “we all live in Chronic Town.” Covid has proved me right. Over one-third of all Americans are at greater risk from this disease. We all know someone who is vulnerable, who we don’t want to lose to Covid. Many of the topics I’ve explored since 2006 now seem relevant to all of us who care to recognize the reality of this pandemic. How do we keep moving forward when pieces of our identity have fallen away? How do we cope with loneliness? How do we maintain relationships when we can’t actually see or touch those we love? How do we live as fully as possible even though we are missing so much? How do we recalibrate to a new normal when we don’t want to? During my 16 years with systemic sarcoidosis, I was forced to accept realities I chafed against. My life had changed irrevocably. My future looked different than the one I had planned and worked for. I had to live with a new normal I resented. I wanted the old me in my old world back. Don’t we all.

My residency in Chronic Town hasn’t conferred me with special wisdom—perhaps more practice, but only to keep learning the same lessons over and over again. What saved me repeatedly was love—for and from my husband and son, for and from my family and Jay’s, for and from friends. They gave me a reason to keep trying to make sense and do my best in a strange world I resisted inhabiting. They gave me courage to try after making mistakes.

And now it’s 2020 and they’re doing it again for me. I’m in a new configuration because of Covid, but the same lessons apply. One step follows another. We’ll all get through this if we care enough and try enough. I am sure we can. But will we do it? Will we as a society and a nation care enough to see us all through?

Let’s talk about that next time.

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Back in Chronic Town

May 18, 2020 at 3:11 pm (Uncategorized)

It’s been nearly three years since I’ve posted something here.

There are a few reasons I stopped posting.  Looking back now, I can see that I felt like I ran out of things to say about my chosen blog topic—trying to live, love and parent as fully as possible with a chronic illness.  My life during the first year of my silence online would seem familiar to anyone who was a loyal reader.  Pain, sickness, time in the hospital, time out of the hospital, time back in the hospital.  Sometimes I struggled to feel at home within my family, feeling like my illness was an impassable boundary that kept my husband, Jay, and my son, Andrew, from ever fully reaching me.  Sometimes I was able to put these fears aside and enjoy a funny story at the dinner table, a cup of tea with a good friend, an evening watching TV with Jay.  I’d written about all this before, and every time the cycle of my health and my emotions turned over, I started to feel like a failure.  Back in 935 BCE, the writer of Ecclesiastes got it right. “What has been will be again, what has been done will be done again; there is nothing new under the sun.”  I couldn’t bear it anymore.  Writing about it made it extra oppressive.

I hit one of my lowest lows in the summer of 2018.  I spent another three months in the hospital.  Instead of the usual vertigo and head-splitting pain that had characterized my neurosarcoidosis for years, I began to have debilitating gastrointestinal issues.  To be blunt, I puked all the time.  I couldn’t even keep pills down.  Maybe because I was more aware of this hospitalization (because I didn’t need high-dose narcotics to manage the pain in my head); maybe because my local doctors were overwhelmed at having me back in the hospital with more inexplicable symptoms they couldn’t help me with and my insurance company breathing down their necks to fix me and stop spending so much money on me; maybe the cumulative toll of fourteen years of serious illness hit me in one giant wave.  Maybe it was all of these or none of these, but I simply could not cope with thinking about sickness—much less writing about it—anymore.  I found new doctors who worked with old doctors who helped figure out what was happening to me.  The disease was attacking the nerves that controlled my digestive tract.  I was also diagnosed with medical PTSD.  I decided to put all of my thoughts and energy into my family and getting as well as I could.  I would only think about sarcoidosis when sarcoidosis made me think about it.  I stopped writing for the blog and set aside my goal of writing a book-length memoir version of it.  I was officially sick of being sick and decided never to write about being sick again.  When I was sick, I would deal with it; when I was feeling less sick, I would put it out of my mind.

Something miraculous happened after that last hospitalization.  I don’t like to write about it or talk about it, for fear that I will somehow jinx myself.  (I just knocked on my old wooden teacher’s desk.)  Here it is in a nutshell: I’ve gotten a lot better.  I am not well.  I still operate with about 60 percent of my old energy on my best days.  I still need handfuls of pills, needles filled with medications, and monthly infusions of other people’s immunoglobulin to keep me going.  I still have days when I have to retreat to bed.  But no hospitalizations, no periods of illness that stretch indefinitely into the future.

All of that puking started me on a path of weight loss.  I continue to struggle with nausea, and that, combined with feeling well enough to exercise some days, has helped me lose 105 LB.  I went from a size 24 to a 12.  Even better, I’ve been able to go hiking with Jay and Andrew.  The other day on a walk, Andrew said, “You’re going kind of fast, Mom.”  This is from the 16-year old who usually strides ahead of me a few feet.  My greatest joy in feeling better, though, has nothing to do with the clothes I can wear or the possibility of seeing an abdominal muscle.  I have been able to be in my son’s life in ways I had always hoped and planned to be, but never could be in any consistent way.  He is a teenager, so it’s not like we’re spending all our time together.  I see his closed bedroom door more than his lovely face, which I know is as it should be.  But I have noticed that he laughs more with me, that he gets mad at me again, instead of tiptoeing around me.  He relies on me when Jay travels for work, and gets annoyed when I don’t live up to his expectations.  This is thrilling.  My relationship with Jay has changed too.  He in no longer primarily my caregiver.  His work life has blossomed, in part because he can count on me to run things when he is gone.

I continue to work through the trauma that so many years of hospitalizations, surgeries, rounds of chemo, invasive tests, and gruff doctors who told me things like “You could drop dead at any moment” created.  I am more anxious that I used to be.  Perhaps this is partly physiological.  I am off so many of the narcotics that numbed me emotionally, as well as helped with pain.  But, as anyone with a chronic illness knows, I also live with an acute awareness that the other shoe could drop at any time.  In years past, I had better times too, and they always ended without fanfare and delivered me right back into a narrow hospital bed.  One time, I went literally from being on a hiking trail with a friend to the hospital the next morning.  I try very hard to live in the moment I have and not worry about tomorrow.  But this does not come easily to me.  I think this is my life’s work—to accept who and how I am now.

Like the rest of you, my life took a sudden turn with the arrival of the coronavirus.  I doubt I would be writing this if it weren’t for the pandemic.  I have been concerned about my health.  I am both immunocompromised and have an underlying chronic respiratory disease.  My sarcoidosis specialist has been clear that I would likely have a “bad outcome” should I get Covid-19.  I’ve been reading and thinking a lot about this pandemic and realized that, along with everyone else in Chronic Town, I have a unique perspective on this chaotic time.  Years ago, I learned to do what we now call sheltering in place.  All the immunosuppressants thrown at my sarcoidosis made me too vulnerable to venture out into the world.  I’ve watched on Facebook as people chafe or accept realities that seemed normal to me years ago.  On a deeper level, though, I think my time in Chronic Town has prepared me to accept that all of the “givens” we humans rely on to be able to sleep at night—that our work will be there in the morning, that our lungs won’t dissolve because of a virus, that our children are gliding towards an acceptable future—are illusions that can vanish in a moment.  I look back on my sixteen years in Chronic Town and see the losses tailing behind me like a boat’s wake: my work, my health, my relationships, my future, my independence, my physical strength, my dignity.  I see many Americans quite rightly struggling with similar losses now.  I also understand their desperate flailing, almost a petulance, that they deserve their “normal” back right freaking now.  No more lockdowns.  No masks that remind them of their fragility.  No extra measures.  I’ve been there in my own ways before, sticking my head so deeply in the sand to maintain an illusion of a reality that is gone.  This doesn’t mean these flippant virus-deniers don’t make me angry enough that I can’t breathe sometimes.  Their insistence that it’s all about what they want in this moment make my life and the lives of anyone with an underlying health condition exponentially harder.  I want them to grasp that all of these losses need to be grieved, and that eventually we can rebuild.

Using the lens that chronic illness has given me to think about our new Covid world, has prompted me to start writing again about health issues.  I’ve been trying to use my personal story as an entrance into broader topics that affect us all.  I have a couple of essays that I’ve submitted to different national publications.  But they had the audacity to turn them down!  Rather than let them collect metaphorical dust on my hard drive, I have decided to post them here, and to take up musing in this space again.  Maybe having the New York Times repeatedly reject everything I produce is a new opportunity–to rebuild community, to circulate some old ideas in new ways that could be helpful to others.

Perhaps there is something new under the sun. Or, at least, a new way to think about the same old stuff.

Be well.

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