The alarm is set for 8 o’clock. It’s just past midnight, and I am staring at the ceiling, my eyes glued wide open. For once, neither I nor the ceiling or spinning, but nobody has managed to get the gremlins in my head to stand down.
The last few weeks have been defined by bouts of Ménière’s-related vertigo that have forced me to use a wheelchair to keep from falling down at work and to depend on other people to get me from point a to point B. At home this translates into far too much time spent on the couch watching reruns while mindlessly doom scrolling through text and images that I’m far too nauseous to absorb beyond a headline here or there.
When the fog clears, I try to paint – especially when the gremlin are keeping sleep away. Sitting and scrolling are becoming far too habitual, however.
This morning – it’s morning now –– I’m out of thinner for my paint. I’m desperate so I get up and fill the tub, grab the first book I see in my office and sink into the bubbles.
It’s not a novel. It’s a book about the history of English which turns out to be great. I expect to be engaged, entertained, and sooth, when I read fiction, but I’m surprised how relaxing it is to learn something new at two in the morning. I’m having the age old problem of not being able to put the book down, but it’s a different sensation from scrolling through toxic pages of social media posts.
Scrolling is turns my body into a clenched fist.
Each turned page, however, slows my heart rate. Each new factoid relaxes another muscle.
The book may keep me up all night, but I’m not worried about being worn out in the morning. The clarity that comes only from calm has helped me make a new rule. The next time anxiety tempts me to pick up the phone and scroll, I’ll grab a book instead.
When Thing1 was diagnosed with ulcerative colitis six years ago, his doctor told us, “This is a permanent diagnosis.”
We thought we understood what that meant, but even after a year of unsuccessful treatment and the discovery that he would have to have surgery — not to cure but to manage his illness – we all had trouble wrapping our heads around the idea the concept of what a chronic illness really meant. Four years later, then one has changed his diet, his lifestyle. He’s learned to make his own appointments and monitor his own prescriptions, We think we understand what chronic means for him, but I don’t think I ever really got it until last Saturday.
For six days before, my Menieres had been remarkably inactive. I was still taking daily medication, still told myself that most of the “cure“ was due to the multiple injections in my ear. But for the last five or six days, I had so little vertigo that, the last Tuesday in February, I drove for the first time since just after Thanksgiving. I drove again on Wednesday , and then on Thursday. This was it. I was cured. I could plan for the next year of school at a district that requires a two hour daily commute. We can think about a vacation with a lot of walking.
And then a few days ago it happened, and I started to understand what Thing1 figured out the minute he learned that his UC wasn’t getting better and that he wouldn’t be going to college next week, that he would be dealing with it for a long time.
Saturday, I was watching the clouds roll in for another storm, feeling my ears pop and crack with the change in barometric pressure. I’d read other people with Menieres say the same thing and knew an “attack” was building. As the Big Guy and I made plans to go to breakfast while Thing2 was at his weekend job, I reluctantly handed him the keys, not knowing when I’ll be able to take them back again.
There’s very little good in what’s been happening, as far as I’m concerned, but the few only bright spots have illuminated the my way forward. That morning, as the world began to spin and rock again, I tried to focus on my memories of Thing1’s stalwart examples of acceptance and determination for the past six years. Those memories and the reminder that chronic often means permanent suddenly helped me truly understand my oldest son who, not for the first time, has often been my Northstar in learning how to navigate life challenges.
I’m starting to get used to the vertigo now. It’s been going on for all day for the last month, and it’s hard to remember a time when the world hasn’t seemed like I’m watching it from inside a dryer.
Chronic illness is nothing new around our house, and Thing1 set a really high bar for accepting fate with graceful determination when he got his ulcerative colitis diagnosis a few years ago. I watched his experience, and, I know that, no matter how you handle it, a chronic illness means chronic, not curable.
Last Tuesday I had an injection of steroid into my inner ear that hopefully well control the symptoms for a few months at a time, putting the disease into remission. Forty-eight hours later, there were breaks in the tumbling until I torpedoed my success with too much salt which led to a hangover on Thursday. When the hangover began to recede, my first sensation was exhaustion. After a 20 minute nap, however, I felt like a towel that had been pulled out of the dryer and hung on the line, fluttering with my second or third wind.
Somedays the wind is howling around the mountains. Other days, the sun is pointing out every new bud in the forest. Even when it’s grey and the back section of our trail is more pond than path, though, at four o’ clock, at least one kid and one adult will ask if we’re all ready to walk. Our walks have attained the ritual sacredness of communion, and, even though they are peppered with swear words when the boys argue about whose turn it is to chase the frisbee into the increasingly green rosy-bush, there is serious communing going on.
The walk around the house is about a tenth of a mile. Thing1 has a goal of getting his parents to do 30 laps walking and then running. I’m treating it as physical therapy for my ankle and, on days when my lungs allow it, have managed 10 laps with a few passes through the garden to talk to the peas and carrots. The Big Guy, waiting for a knee replacement, is less focused on the number of laps than on just walking with the boys.
The kids will do two laps for each of ours, deliberately tossing the frisbee into the woods or at each other’s heads. Thing1 and the Big Guy will talk car repairs. Thing2 will talk music and life.
We don’t see each other for most of the rest of the day. Thing1 is finishing up classes from college online until late at night. Thing2 has class in the morning and then has creative projects. I write and study, and the Big Guy reads. There’s an implicit understanding that, while we are locking down, we need to have our physical and mental separate corners.
Vermont’s governor is slowly relaxing restrictions that have helped keep our infection rate down, but, with high-risk people in the home, our family won’t relax the current routine until we see evidence of a prolonged absence of a second or third wave of infections. As the rest of the state returns to normal, I’m grateful for these organically grown rituals that keep us close but not constricted, knowing they’re about to become even more important.
Pneumonia benched me well before Covid-19 invaded neighboring New York State, but my son’s severely compromised immune function was already forcing considerations about whether and how to keep working at the residential school where I teach.
Our school immediately implemented Herculean measures to reduce the likelihood of infection. The experiences of other assisted living communities across the nation, however, suggested that any infection, once introduced, would spread rapidly. I love my school kids, but knew working during the pandemic might mean living away from my family. When my body turned on me, I was almost grateful to surrender the decision and took a leave of absence as our family settled into the stay home directives that, while not all that new for most Vermonters, felt like a different normal.
When I started considering family safety, the virus was sweeping through cruise ships. There were a handful infections in Washington state, and the media zeitgeist was proclaiming that the virus “only” endangered the elderly and people with chronic illnesses (about 157 million people in the US), as if that made it more tolerable.
One night early in March, however, I caught an interview with Yale physician, Nicholas Christakis, predicting the trajectory the infection would soon take. Identifying schools as disease vectors (as any parent or teacher weathering flu and strep season can attest), he advocated nationwide closures. “Flatten the Curve“ hadn’t been coined, but he was articulating the strategy: slow the spread, reduce the load on the healthcare system, and improve the odds.
As March and the pandemic progressed, Christakis seemed like Cassandra delivering disturbingly accurate warnings, heeded only when case numbers and fatalities began to skyrocket.
I remember marveling at extraordinary examples of solidarity by people from all walks of life filling my Facebook feed when Americans did adopt the social distancing guidelines already in place in Europe. There were some doubting the seriousness of the disease or disregarding how their continued mobility might endanger others, but videos of people making masks, entertaining each other, organizing school services and lunches for kids and families were brief testaments that we were all at least trying to be in this together.
Then the economy, already wobbling under volatile oil futures and markets, imploded. Poorly maintained government safety nets struggled to expand and accommodate millions of newly unemployed people. Suddenly the stay home directives were not just about flattening an abstract curve, they were about individual rights, paychecks, and haircuts.
I don’t have much sympathy for people screaming for haircuts, but at least 40% of adults in the United States don’t have $400 on hand to cover an emergency. That means a lost paycheck could easily translate to a lost roof or food. In regions that have not yet seen spikes in the numbers, the prevention can easily seem worse than the disease.
I had just started programming in 1996 when I first saw a program crash because an end-user had tried to enter the date ‘2001’ in a two-digit year field. We fixed that particular issue pretty quickly, but as we went through our other programs, we realized how many applications were vulnerable. Y2K work wasn’t just bread and butter for the next few years, it was steak and caviar.
That New Year’s Eve, I brought home a laptop to login to work and monitor for any SNAFUs. As midnight rolled around, I wondered if many programs would fail. Would the “major” systems around the world make the jump successfully?
The next morning, there had been a few hiccups but no apocalypse. Newscasters seemed almost disappointed that more things hadn’t gone wrong, glossing over the fact that the millions of programmers who had been updating systems for the previous three or four years had made that possible.
Right now, people are being asked to accept hardships to make sure that as much of our worrying as possible is for ‘nothing’. Some people, even offering themselves as sacrifices, are willing to play the lottery and advocate for reopening the country. With one journal, however, suggesting that school closures alone prevent “only” 2-4% of Covid-19 related fatalities (2000-10,000 lives depending on projections) and new reports of hospitalizations and fatalities among younger, healthier people, reopening the “country” is a lottery that will trade lives for paychecks.
But too many missed paychecks can also cost lives.
Some (including me) would argue in favor of securing the social and digital safety nets to enable as many people as possible to stay home longer and reduce illness and contagion. People advocating the alternative, however, do have valid concerns. Safety nets are expensive. Any vaccine could be at least a year away. There’s no confirmation, yet, that surviving the disease confirms permanent immunity, meaning that this could be a question of thinning the herd rather than building herd immunity. Stay home directives could be simply delaying the inevitable.
Less than a century ago “The Lottery”, by Shirley Jackson, depicted a modern version of a “brutal ancient rite” taking place in some version of Bennington, Vermont. Townspeople drew lots to determine who would be sacrificed by stoning to ensure a good harvest. The New Yorker and Jackson received mountains of complaints and abuse from shocked readers who could not countenance the idea of even fictional human sacrifice in a modern setting.
We aren’t choosing lots or stoning people to death, but in the end, we are being asked not just what we personally are willing to surrender for the economy or a flatter curve. We are being asked who we are willing to sacrifice to achieve either goal. How many and which people are disposable?
On our very micro level, I know I would give my life to keep my kids safe and fed. I also know it’s easier to be a martyr than a problem solver. At some point, the pandemic and the economy will force us to ask the tougher question of how to balance Thing1’s health (and life) against my need to work, against Thing2’s right to go to school and grow. When do we “reopen”? We’ll find some answers in logistics. Other answers will require making ethical choices far more difficult than drawing lots.
It started with a writing prompt a few days ago. Write a scene with no more than four characters that happens in one room. It was a good assignment, but at first it took me to some very dark places before I remember I was in control of this story. I don’t have to go there.
I’ve tried to treat the last month of Sparkling (and, at our house, often smudged) Solitude as a gift of time, but, as many people are finding, worrying about loved ones, finances, and the world of suffering happening beyond our driveway more than dulls the sparkle. As I wrote, I realized that, while my own respiratory issues have kept me off the frontlines but not terribly fearful, Thing1’s nearly fatal history with a chronic illness that makes him particularly vulnerable has caused more anxiety than I like to admit.
My prompt response grew into a story about a family cursed with endless time and a dark choice that might save their firstborn. The scene grew out the worst night of Thing1’s illness, but, in the story, the husband and wife debating their children’s fate begin to fall apart, and I couldn’t figure out how to put them back together. I had written myself into a corner, but, as I took a break to finish cleaning the pantry, I remembered that during that seemingly endless night, the Big Guy and I had not fallen apart.
We had pulled together.
We may have squabbled briefly about how fast the ambulance would arrive in a blizzard or if the emergency room would do anything we weren’t already doing or if we could even get there. We had nothing but bad options as our firstborn faded on the couch. In the end we did the only thing we could do. Pulling ourselves together as a team, we decided everything and every phone number until there was nothing else to try and Thing1 started to improve.
That night wasn’t a gift. Thing1’s illness hasn’t been a blessing in disguise. Those challenges were crucibles so hot we sometimes felt our resolve begin to melt, but when that heat abated, hope solidified around our family, forging an infinitely stronger bond.
So now I’m back to my made-up husband and wife, still at a terrible crossroads with endless time and a horrible illness and choice in front of them. There is a temptation — for the sake of art – to finish tearing them apart. There is the option to treat the endless time and choice as a curse.
A few weeks before exams, Thing1’s school sends around a mailer that lets parents fill out a greeting card and select an assortment of “healthy” candies and snack foods to get through the rigors of studying and testing. Most of the letters from Thing1’s college are pleas for money for one reason or another, but this one always gives me the giggles.
The first mailer instantly had me mentally grumbling, “When I was your age we used to walk 50 miles in the snow without any care packages to take our exams”. College these days seems a bit like summer camp but with amenities like all night cookie delivery and bubble tea joints on every corner (and, in the case of Massachusetts, actual joint joints on more than a few corners).
Care packages seem more than a little redundant.
But this week there’s something I didn’t have when I was his age. In addition to the suppressed immunity I never had at any age, Thing1, who has faced his mortality more than once in the last two years, is hearing all the same news we are about the new Corona virus going around.
The new virus which has people suddenly washing their hands (who were these people who weren’t buying hand soap before last week?) and giving Vulcan “Live long and prosper” greetings instead of handshakes is the next thing we’re worrying about for him.
Thing1 takes things in stride, but his school has decided to keep dorms open over spring break to encourage people not to travel. His hospital has reported cases and is discouraging scheduling of new surgeries, including the next one he needs, in anticipation of an increased case load. I know that, despite his ability to take life’s little challenges one day at a time, this virus and all its potential implications are at least in the back of his mind.
Most of the time, COVID-19 news interests but doesn’t overly worry me. I’m mostly healthy. Thing2 is abundantly healthy, and the Big Guy is a rock.
The implications for Thing1, however, are on the top of my mind when I think too long about this new virus. So, even though I’m going to remind him that, back in the dark ages, we had to study for exams by candlelight and write our essays on bark using charcoal when we were his age, I’m sending him a a little care in the form of some hermetically sealed candy and snack food.
And there will be at least one giggle when I hit send.
It’s my second week of being bed or chair-bound as my foot recovers from a total overhaul. It’s been really inconvenient, but, ironically, it’s give me a chance to take a different kind of walk with one of the best people I know.
This time last year I was still writing mostly about Thing1’s journey with Ulcerative Colitis. We thought, at the time, that journey was almost over and that he was starting a newer, more adventurous one. Then his body recently reminded us that a diagnosis of a chronic illness is a permanent one.
His chronic illness is classified as a disability. It took me a little while to really understand why it’s classified that way, but as I watched his disease derail a year of his education and govern so many other major and minor life decisions, I gained a better understanding of how invisible illnesses can cause impairment. It wasn’t until the last two weeks, however, that I understood how that feels.
As someone diagnosed with bipolar disorder, I can sympathize and empathize with some of the impacts of invisible illness. Depression can impact your ability to function at work and your ability to parent effectively. It does not, however, turn the simplest activities, such as showering, into activities that need extra equipment or preparation. It doesn’t keep you from reaching the microwave. It does not have you planning your schedule when you might want to go to the bathroom next, let alone how to return to work.
Thing1 is less than half my age and wrestled with all of these issues and more in the last few years. These questions have determined where he would live and if he would go to school on any given day. They are determining if he may miss yet another year of school and when he will begin his adult life.
Spending a few weeks navigating the activities of daily living that are usually take for granted has been a pain in the neck, but it’s also given me a chance to walk with T1 in a whole new way.
I don’t tend to be a mourner. I shed a few tears, maybe a sob here and there, and then the person I love lives on in my memories and, if I’m lucky, in the lessons I’ve absorbed from them.
I’m blessed to have been born with a small army of Great Aunts. I don’t mean that they were a generation removed from mine. I mean that they were and truly are great – awesome. They adventure. They dive into learning. They are helpers and nurturers. They have always been what I want to be when I (eventually) grow up. Kind. Brave. Extraordinary.
One of my League of Extraordinary Women passed away on Sunday night. She was a prominent fixture in our lives when Thing1 was born, helping us navigate the German healthcare system (where he was born). A counselor and mother, she helped me learn to trust myself and my love of Thing1 when I was getting my parenting sea legs.
I am thinking of her even more intensely this evening as I take a break from writing IEPs to absorb Thing1’s news from his latest visit to Dartmouth Hitchcock where he spent a good part of his senior year and what should have been his freshman year of college. We are learning, yet again, that having a chronic illness means that he has, what his doctor once warned was, a permanent diagnosis, inspite of having had a colectomy. Now, instead of thinking about summer jobs, he is faced with another, riskier surgery or the very real possibility of cancer by the time he’s in his thirties.
He always seems to take the news in stride, but I know he’s frustrated and a little frightened. Hidden in my office where he can’t see me, I give into a few sobs before acting on the lessons my very awesome aunt taught me everyday.
I know if she were here, she would offer a hug and tell me to trust my love for Thing1 as we help him over this next hurdle. She would remind us that we have the strength to get through this together and that it’s okay to cry. And, as she showed us everyday of her life, even when her own child faced a debilitating illness, she would remind us to care for others around us. She would show us how not let fear steal the happiness we do have with each other.
I will sob for a few more minutes before I get back to writing IEPs, and then I’m going to remember her by living her lessons.
The big five-OMG is just around the corner. Friends and family began asking how I wanted to mark the beginning of the next half century almost a year before it was due, so I felt some obligation to not try to ignore this one birthday.
Just before Thanksgiving, I remembered Thing1’s birthday climb a year earlier to the top of Mount Equinox in Manchester, VT and decided that would be a fun activity (I swear I was completely sober). We thought about doing it as a fund-raiser for a charity that helps children with Ulcerative Colitis. As I investigated, though, I realized a mountain climb in April in Vermont could still involve snowshoes in some parts and would certainly exclude family members who can’t climb on a completely dry day. Finally, wanting to make health and family part of ‘my day’, I settled on running a fundraising 5K with Thing1 and Thing2 and extended family.
There was only one problem with the plan.
It means running a 5K.
Now, I know what you’re thinking, but, even though I’m roughly the shape of a cream-filled donut (and, at the time of this writing may contain almost as much chocolate), I will not be rolling across the finish line in a wheelbarrow.
Which means running that 5K.
Enter Thing1 with his concerned but not reproachful fitness training approach.
Thing1, you may recall, had his entire colon removed at the end of October and then had everything reconfigured in December. You could say it involved a couple of big operations — so big they kept us in the hospital until our bill for 2018 finished its own 500k. He should, by all rights, be still recovering.
Somehow, however, Thing1 is in better shape than the rest of his family, a fact that made him the de-facto personal trainer for Team Barlow. He takes his duties seriously, mapping out a hiking route each day (lots of hills and huffing and puffing), telling us that by the end of March it will be a running route (lots of dubious looks from his team).
The first day, I had to stop in the middle of the first hill. I had to stop in the middle of the second hill. When I stopped in the middle of the third hill, Thing2 stopped with me.
Thing1 was always just a bit ahead, often at the top swell of the hill, waiting for us. He would make a lousy drill sergeant (he’s too nice), but, as he called, “You can do it,” to me/us for the umpteenth time, I thought for umpteenth time what a great superhero he is (his super power is inspiration).
The next day I didn’t have to stop until the third hill. Thing1 was running ahead and then running back to ‘keep it challenging” (yeah,he said it going up a hill). Thing2 was running ahead and then walking slowly to give me time to catch up.
By the third day, I had started running bits and pieces of the route (I still have to stop for a second on the last hill). Today, we’ll walk/run for the fourth time.
I know the race route will be on one of the flatter roads in Vermont, flat being a relative term here, but we are keeping this route until ‘my day’ at the end of April. We may not be running the entire route by then, but my team will be finishing it together.
It’s a good way to kick off the next half-century.
On his good days, Thing1 can still Demonstrate that he’s still stronger and faster than we are,and, after a transfusion or infusion, that he still has endurance for some of his favorite activities.
We do try to get him out to hit a few holes or drive a bit. They have minimal impact on his health one where the other, but they keep them connected to his old way of life and, or importantly, what he is determined will be his way of life in the future once again.
We’re always wary of denial on all our parts, but determination is not that. after all, whether it’s getting up a hill at the public golf course in the town nearby, getting over this next hurdle, determination is the only thing that will keep him putting 1 foot in front of the other.
T1 had to go to Dartmouth for labs today. We’re t-minus 2 weeks before college classes start, And the jury is still out as to whether or not he will be there.
We finished a less than optimistic appointment and blood draw, and as we were heading back and passed a car dealer we’ve past dozens of times before, T1 spotted a Dodge Challenger prominently displayed at the front of the lot. He’s wanted to test drive one since he got his license, but no self-respecting car dealer would let a kid with a junior license and no willing cosigner breathe on the car, let alone turn the key in the ignition.
Today, however, he’s 18 and seven days, and hearing the bad news that his inflammation is still in full gear had him spoiling for a fight with the summer that has been dull as dishwater for him.
He’s been severely anemic, and even regular iron infusions aren’t letting his body produce red blood cells. He’ll engage in activities one day and then needs to rest on the couch for the next two days and regain his energy. A birthday road trip with the Big Guy exhilarated him and left him we charging for the rest of last week.
He has been resting all week prior to the appointment, saving his small burst of energy for today, and when he asked if we could try to talk them into a test drive, I acquiesced and turned into the car lot.
We haven’t been letting him drive much this summer, and he hasn’t been fighting us on the subject. I knew he was asking for this one favor that he was going to happily exhaust himself with a 20 minute test drive.
The salesman got his information. He asked if T1 had a cosigner, and I had to suppress a giggle. He seemed to be aware that we were there to drive and not but today, but it was quiet in the dealership, and he seemed happy to show a fellow car enthusiast the ins and outs of the metallic red cop magnet just outside the show room.
he went through the motions of the paperwork and then lead T1 outside. I stayed behind to prevent any attempts to play on my sympathies. my phone battery had died, and I got my sketchbook out, letting my imagination and pen meander to a field in creek near our house, since nothing in the showroom begged to be preserved.
About 20 minutes later, they pulled back into the parking lot. T1 got out of the car, beaming for the first time all summer. If I could have, I would have bought the car right then and there just to thank the salesman for being so generous with his time and giving a gift so desperately needed.
It was a little joy in the summer that’s been quite bleak for my first born, And it seemed like such a silly place to find it. But one thing we learned over the last eight months is that no matter where those little bits of joy pop up, you have to grab them and be grateful when they do.