It’s Your Birthday

“As flies to wanton boys are we to th’ gods; / They kill us for their sport.” (Act 4, Scene 1) 

                                                                                       Earl of Gloucester, King Lear

You’re turning 43 today, a surprise just a few weeks ago when you were certain you were turning 42 until you did the math. It has you thinking about aging, more with each passing year, bringing to mind your favorite Shakespeare play, King Lear, with its tragic characters, its grim messages about growing old. You had a professor once who said that no one could really understand King Lear until they were at least 35, and you were slightly offended because you thought you knew enough in your early 20s. You understand what he meant better now in this second stage of life, especially with a disease that afflicts you with issues usually reserved for senior citizens, aging you in fast-forward. It doesn’t fully hit you until middle age: you’re going to die. And first, you’ll get old, suffer countless indignities, feel yourself crumbling from the inside out. You’ll see it happening to your parents, aunts, uncles. And while you’re caring for them, it will begin happening to you, passing from one generation to the next, an inheritance of suffering because everyone must take their turn.

Before that, of course, you know that death is coming…someday. You are nine when your grandfather passes, the call coming from your mother in Rhode Island with him while you and your brother are in England with your father, carving pumpkins for Halloween. You understand that your grandfather is gone, but he was old and it was expected, and isn’t that the way? The future is so far off, a complete blur; you’re too busy living in the present, with your present worries, your present dreams, your present heartaches. There’s so much you want to do, so much you want to have, and it doesn’t seem like it will ever come. Beginning at 14, you spend your days around the dying while working your first job in a nursing home. They pay you $4.25 an hour, and it’s enough because you have time, so much time.

You pour milk over the residents’ cereal, spread jam on their toast, cut up their sausage, all while listening to their complaints. The coffee is too strong, makes them shaky; it’s decaf, you tell them, and then they complain about that. The food is cold, it’s bland, it’s always the same, it looks like shit. “If only it would actually make me shit,” Earl says, pushing his plate away and picking up his prune juice. “This shit tastes like shit,” he grumbles, grimacing, before wheeling himself away from the table, his plate almost untouched.

So much food is left behind. Entire meals, cold eggs, gravies that have solidified over pressed meats, oatmeal so congealed you can peel it from the bowl in one piece. You have to chart how much each person eats, a number from one (most of the food left uneaten) to four (most of the food eaten), counting the cubic centimeters of liquid consumed for the residents on I and O (input and output), 30 cubic centimeters per ounce. The nurses used to do this job, but then it became yours. You forget sometimes to write down a number before the plates have been cleared, so you guess. Two or three are safe enough, depending on what the person usually eats. What else do they expect from a teenager? Especially when there are dishes to wash and tables to reset before the second group of residents arrives, sticky spills that need cleaning.

Jack and Ron arrive together, Jack stooping a little to push Ron’s wheelchair from their shared room. Jack is incredibly hard of hearing, so Ron speaks for him, letting the aides know what Jack wants to drink, when he needs more of something. Despite being spent mostly in silence, their friendship is strong, their connection as familiar as a married couple’s, but you worry about what will happen to the other when one of them passes. Deaths happen often in the home, of course, as dying is what most of the residents come here to do. Yellow roses are left on their beds to mark their passing, and Jack’s arrives first; Ron’s follows shortly after.

You call the residents by their first names, which feels strange, as if they were children, and in so many ways, they are. Helen, a plucky resident whom you’ve heard was once in the army, carries a teddy bear named Bootsie with her everywhere she goes. She has a red foil bow outside her door so that she can find her way back to her room, and she really likes pulling the fire alarms; when the firefighters respond as they must, each time she points the finger at Bootsie and says how naughty he is. She tried to stop him.

At lunchtime, you see Vera’s willowy figure near the dining room’s entrance. She is tall and thin, takes great pride in her shoulder-length white hair, one of the only women who hasn’t given in to a shorter, easier cut. She scans the room before turning around, and you follow to see if you can persuade her to eat something, anything. Usually, she just sits at the table folding paper napkins like freshly ironed handkerchiefs, her skeletal hands patting the pile gently. Vera agrees to sit down for some coffee, and you walk her to her table. “Honey,” she says, pulling on your sleeve. “I can’t stay here.” When you ask her why not, she lowers her voice: “These people are all so…old.”

You and your friends joke about how you’ll all live there yourselves one day, imagining which residents you’ll be most like. Who will be like Joe, found once in the dining room shaking pepper down his pants, saying “hot stuff, hot stuff”? Who will be like sweet Gladys, who never says anything, just smiles beneath her too-large glasses, tapping her feet to music only she can hear? Who will be like Elvira and constantly scream, “Oh MY GOD, I’m tired!” even as the other residents tell her to shut up because they’re so tired of hearing it? Your friends agree that you will be the crankiest, the most difficult, and they’re probably not wrong.

Tim sits sideways in his chair, looking edgy and irritated. When you ask him what he’d like to drink, he says, “Gin!” and you both smile a little before he decides on the orange juice, which he mutters would be a lot better with gin. After the meal, he walks over to the table just outside of the dining area and picks up the phone. He resents having been left in the nursing home by his wife, and he calls several times a day to remind her of that. When she doesn’t answer, he slams the phone in its cradle, wild-eyed, before stomping off to his room. She is faithful about daily visits despite how mean he is to her, and you can’t help but wonder if she jumps every time the phone rings. Perhaps she has unplugged it for some peace.

The only kosher resident comes to dinner and takes her usual seat. The cook, too lazy to make a separate meal, has warmed up yet another bowl of canned soup accompanied by half a sandwich because only men get whole ones. You and the cook both know that the soup isn’t kosher, and the sandwich probably isn’t either, but she is above you in the hierarchy, so you serve it anyway. “How are you today, Bessie?” you ask as you set her food in front of her. She sighs and shakes her head, declaring, “Oh, I don’t know my ass from my elbow,” raising her eyebrows and hands like she always does, and you laugh like you always do.

As you’re sweeping the floor, ready to shut the dining room down for the night, Edgar wanders in, his hands in his pockets. One of the few residents who is still quite steady on his legs, Edgar walks and walks and walks around the building all day, making that awful sound as he pulls up phlegm from his throat. He usually stops to say hello, and when you ask how he’s doing, he tells you that he’s great because he went to Gorat’s earlier and had a big steak. He didn’t, of course, but you know he must have spent a lot of time there once because that is where his mind has him spending his final days. It’s a blessing, you think, that he believes he had a steak instead of the chicken a la king that had been on the menu that evening. You feel terrible serving it to people because it looks just as bad as a school lunch; you have no idea how it tastes because you’d never manage to get yourself to try something that looked so unappetizing.

You don’t know then that you’ll dream of this place and these people for the rest of your life. That in your sleep you’ll constantly be back slinging trays and washing dishes, forgetting to clock in, wondering why you’re there. “I’m a college teacher now,” you say, as you panic, having forgotten how to do this job, surprised that all of the people you knew are still there, somehow still alive. The residents laugh, all the ones you remember so well. “Then why are you here?” they say, pointing to empty coffee cups. You realize then that you haven’t made any coffee, and you panic once more.

And then you see Matthew, still in his thirties like he was when you were a teenager, the youngest resident you’d ever served by far, younger than most of the rest of the residents by more than thirty years. Mostly paralyzed from primary progressive multiple sclerosis, he is a favorite among the staff, who bring him special meals that he likes, paid for with their own money, usually a cheese Runza, his comfort food. You felt for him then, like everyone did, especially after your aunt was diagnosed with MS, not that you shared that information with him at the time. Somehow, you knew even then that saying you know someone else with the condition does nothing for the person you’re telling it to. What are they supposed to do with that knowledge? Comfort you? They have their own problems to handle. Instead, you talk about high school football rivalries, and he defends the school he attended and loved. You don’t talk about his wife or children because they so rarely visit.

Now that you’re in your forties, you especially want to catch up with Matthew in this dream, tell him that you, too, have MS, that you understand better now. But every time you move in his direction, an obstacle appears: another resident needing something, a tray of food waiting to be delivered, one of your old supervisors asking what the hell you’re doing there, saying that you haven’t worked there for more than twenty years, even though they haven’t either. Matthew doesn’t make eye contact; he has nothing to offer you, and you have absolutely nothing to offer him.

When you wake, you realize that Matthew has likely passed away by now. You look for him online and find his father’s obituary from just a few months ago. It mentions that he was preceded in death by his son, and several clicks later, you learn that Matthew died in 2002, just four years after you left that job, that he is buried nearby. He was 41. You were 23.

So many people say that MS is not terminal, that it won’t be the primary cause of death for the people who have it. But that paints an incomplete picture. Your aunt died because of complications she would not have had if it weren’t for MS. Matthew died because of the same. Someday, you are likely to as well. Of course, there could be gunfire, an unfortunate fall, a virus in a pandemic, a car crash, any number of other ways to pass from this world into the next, but just as this disease has changed the way you live, you know that it is also likely to affect the way you die. It’s as much a part of you now as your skin, your ghosts.

All the more reason to get out today for a walk, stand by the river and feel the sun and the breeze upon your face, move your sometimes stubborn but still-working legs. All the more reason to order one more fancy cocktail than you normally would with your dearest friend, to enjoy the beautiful cake she made. All the more reason to have dinner with your parents, to fall into your husband’s arms, to let go of small, silly resentments. To pretend that the inevitable is still far off for you and all of your beloveds, to be fully present in the time you spend with them. There are so many tomorrows before you, so much to experience, including losses, yes, but also great joys. All the more reason to embrace the celebration today of turning 43—the phone calls and cards, the flowers, the people you love—because it’s not yet time to become a ghost yourself.

COVID Descending

I put my mask on before delivering his breakfast to the top of the stairs leading to the basement: yogurt with oats and berries, passion fruit, water. “It’s here!” I yell down to him before hurrying back up the stairs.

“Thank you,” he says through his mask as he picks up the food. I see just the top of his head before it disappears. “Oh, and can I get a Gatorade, too?”

“Just a second,” I reply before putting a cold bottle in the delivery spot. “Leave the dishes here when you’re finished.”

Alvaro tested positive for COVID yesterday. He left me sometime during the night before, and I woke up to a text from him saying that he was in the basement with a bad fever, chills, and headache, maybe because of something he ate. Doubtful. I texted back that I’d be down in a minute for him to take a COVID test. I had him swab and then hand it over to my gloved hand to process. It took only two seconds for the positive line to darken, well before the control line. Ugh. Fortunately, my test was negative.

By that time, he was vomiting violently, so I called his doctor’s office about what to do next. No one in my immediate family has had COVID, so I had no idea. Because he’s otherwise healthy, the nurse recommended we just wait it out unless he developed breathing problems or an uncontrollable fever. He spent the day sleeping and hydrating, and I was able to get him to eat a little pasta that night before going to bed.

To receive COVID leave from his job, Alvaro had to get a PCR test at a CVS drive-through this morning. He was feeling much better and ate all of his breakfast after it was delivered to the top of the stairs for him. When he returned from his appointment, we chatted a bit with about 16 feet between us and with our masks on. He looked sad when he had to go back downstairs. Despite being in the same house, we’re missing each other and life as usual.

My test was negative again this morning, and I’ll keep testing over the next few days. I could still have/get COVID, so I’m quarantining until we’re both in the clear. It’s familiar ground after more than two years of living that way. I only began tentatively returning to the world a few months ago thanks to Evusheld, a combination of monoclonal antibodies that delivers synthesized COVID antibodies to people who cannot make their own through vaccinations because of suppressed immune systems.

After its long-anticipated release happened at the end of December, Evusheld was in such short supply that many hospitals began lottery-style drawings to determine who would receive it. Almost all health systems had to create categories of need so that the people most compromised would receive it first. The problem with that is the first priority group contained so many different kinds of patients: solid organ transplant recipients, people with HIV, people who received stem-cell treatments, and people compromised by medical treatment including chemotherapy and B-cell depleting therapies like the one I receive. At the medical center where I’m treated for my MS, the wait would have been 3-6 months. So I began calling everywhere I could think of trying to chase it down before making an appointment with my PCP in another health system to see if she could help me get it sooner. Their system received doses just the day before, and I met their guidelines, so I was able to receive Evusheld at the end of January. In March, the FDA doubled the dosage recommendation in response to the Omicron variant, so I had to go in for another round. I’ll need the treatment again in September and every six months after that as long as COVID presents a significant threat.

Receiving Evusheld has allowed me a few outings to restaurants and to visit friends, a road trip to North Carolina last week to visit my brother’s family, and even the ability to go to the grocery store again. I understand that grocery shopping doesn’t sound exciting to a lot of people, but after isolating for more than two years, it feels good to be out again, no matter where that is. I’m still cautious, of course, masking and distancing when I can, washing my hands, etc.

But that’s true for Alvaro, too. He is vaccinated and boosted and wears a mask everywhere he goes because he wants to protect me. He’s incredibly careful, and still, he got COVID. One-way masking is better than nothing, certainly, but these most recent variants are so easily transmissible that it’s not enough, and Alvaro is almost always the only one in a mask when he’s at work. So when I heard about the CDC relaxing its guidelines yesterday, I felt dismayed. I understand that much of the country is back to life as usual no matter what the CDC says and that it’s necessary to adjust as information changes, but it does make it harder for people like me to leave their homes.

At the beginning of the school year, our college has a number of faculty meeting days. Most of them are still being conducted over Zoom, but one of them asked for in-person attendance, recommending but not requiring masks. To Zoom into that meeting, faculty had to request a link from an Academic Affairs coordinator, likely to encourage people to come in person. I immediately requested and received the link. I’m not ready to be back in large groups where people only wear a mask if they feel like it. When we were building our yearly schedules in the spring, my dean and I decided that I would stay remote in the fall and winter quarters in case of a surge or a more deadly variant or my being unable to get another dose of Evusheld, a good thing because masks are no longer required at the college. I’m scheduled to return to campus in the spring quarter, which begins in March, and I know the transition is going to be difficult after three years away from the classroom, three very long years. Who knows what the COVID landscape will look like by then? Better, I hope.

In the meantime, COVID is an unwelcome visitor in my home. I’ve got a pot of soup simmering on the stove for Alvaro, which I hope will soothe him, especially after the nasty coughing fit I just heard from below. Earlier, when we were having our distanced chat, Alvaro said that he missed me and asked if we could FaceTime during dinner. So sweet.

I’d better go and get ready for our big date.

Service, Please

I texted “update” for the fourteenth time. My cable/internet company’s automated response said that they expected to have service restored by 8:40 p.m. That sounded promising at 7:40 p.m., just an hour more before I could stop reading on my Kindle like a pioneer. But I didn’t trust the estimation because earlier that afternoon, they estimated the problem would be fixed by 4:40 p.m., which of course it wasn’t; at that time they just updated it to 8:40 p.m. Perhaps at 8:40 they would adjust the expected time to 12:40 a.m. or actually be honest and say they had no earthly idea when I might be able to get online again, if ever.

Lower eyelid spasm, right side on video

Focusing too much on a screen or a book triggers my eye twitch, courtesy of a hemifacial spasm that began making itself known in March. For one month, my lower left eyelid twitched without stopping, although it wasn’t as noticeable when my eyes were closed. When it finally stopped, I wanted to shout my joy into the streets, but the absence of it felt wrong, and I knew better than to think it was over. Sure enough, two days later, it returned, and it has come and gone several times each day since. I wake up with it each morning, and certain things seem to make it worse, including caffeine and alcohol. Lying down is also a fairly reliable trigger, and that happens to be the position I most like to be in when I’m reading. In April, my left upper lip also started twitching intermittently, joined later by my left chin, cheek and eyebrow. Maddening doesn’t come close to describing what it does to me, and I’ve spent the past few months on edge when it’s happening. Alvaro acts like he’s the one suffering when he has to look at it because it makes him “uncomfortable.” You can probably imagine my response to that.

With time on my hands and needing a break from reading, I texted “agent” instead of “update” about my service outage and followed the cues until I reached a live person instead of the very unhelpful bot. I’d like to tell you that I didn’t spend the better part of an hour texting back and forth about how I would be compensated for a day without internet or cable because it reveals too well who I am at my petty, miserable core, but without an internet connection, it was at least a connection of a kind. The agent finally agreed to credit me for a full day of service, even though he was “certain” everything would be restored soon, that I was their “top priority,” and he sounded (as much as someone can sound over text) proud of himself when he let me know that the credit for a grand total of $7.42 had been applied to my account.

Then it was time to make dinner, so I got to work on making rice and salad to go along with roganjosh, and Indian dish I had ready in the freezer. Because Alvaro goes to work before the sun rises, he usually takes a nap in the afternoon, so when he got up for dinner and saw that we still had no internet or TV, he asked what we were supposed to do. I suggested we start with eating dinner, and he responded, “IN SILENCE???” Oh, I said, you’ll think of a way to entertain me.

He didn’t. Old married couples don’t have a lot to say to each other sometimes, and the noise of the TV can fill that void. Instead, all I heard were the sounds that drive me crazy during a normal dinner, but magnified: chewing with his mouth open, smacking lips, the occasional slurp. I put my fork down to prevent myself from using it as a weapon and gave Alvaro my frostiest glare. He looked up like a distracted student suddenly called upon in class, panicking. “Sorry,” he said sheepishly.  

Twitch, twitch, twitch, twitch, twitch, twitch, said my lower eyelid as I pulled it to the side for momentary relief. Just a couple of days before, I finally had an appointment with a doctor in Movement Disorders, neurologists who specialize mostly in treating Parkinson’s and similar diseases. After spending an hour getting a full neurological workup from a fellow and a resident (it is a teaching hospital after all), I finally met Dr. H, a lovely physician who said she’ll treat my hemifacial spasm with Botox, conservatively at first because it will have to be maintained every 3-4 months to stop my eye twitching.

I’m a month away from that Botox appointment and counting the days. There’s not much they can do about the lip twitching, unfortunately. The affected muscle, the orbicularis oris, is a complicated one, and treating it with Botox will cause mouth drooping over time, so I’ll have to learn to live with it. If my eyelid can be stilled, that will be enough. And with MS, enough really is sometimes, well, enough.

Hemifacial spasms are most often caused by a blood vessel touching a facial nerve, but in my case, it is more likely caused by my central nervous system being glitchy because of MS. We may see a new lesion on my brain stem responsible for it when I get my annual MRI next month, but chances are that we won’t.

My internet connection was restored by 8:30 a.m. the next morning, whatever hitch in the system that had caused it finally resolved. By the time I caught up with e-mails, my eye twitch had calmed, and the world was right once more. For a little while, anyway.  

Eulogy for Josephine

I knew as I packaged the cake I make at Christmas that it was likely the last time I’d be sending it to her. My grandmother, who had been telling us every year for at least a decade that this would be her last Christmas, birthday, etc., was experiencing more health challenges, becoming more confused. Her love for sweets remained constant, though, no matter what else was lost. Cake offered a way to hug across the miles that separated us.

Grandma and I had a special relationship. She quit smoking on the day I was born, though if she’d known it would have kept her alive into her 90s, perhaps she would have kept at it just a little longer.  Although we didn’t live near her for most of my life, she was there to celebrate my most important moments, from high school graduation to my wedding. It meant so much to have her there on those occasions, so after my diagnosis, I insisted that my grandmother not be told about my having MS. She didn’t need the heaviness of it. What she knew about the disease came from my aunt’s experience, and that was one of great suffering, taking her from us far too soon. It would have broken her heart to imagine that happening to her granddaughter, and no amount of assurance about better treatments being available now would have changed that.

In many ways, my grandmother was a woman bewildered by joy. Joy is our family’s last name, so you can appreciate the irony. She and my grandfather immigrated to America from Ireland, hoping for a better life. My grandfather went to work as a grave digger, followed by other menial jobs, but he had the refuge of playing his accordion in an Irish band with his brother at nights and on the weekends, leaving Grandma with the responsibilities of taking care of the children and the home after working full days herself. I used to laugh at her pessimism, but the reason for it was that life was always hard for her.

On the way to America

When my father struggled to find meaningful employment after retiring from the Air Force, she dismissed his concerns. “Where did people get the idea that they are supposed to enjoy their jobs?” she asked, mystified. When she was finally able to retire from working herself, I remember asking what she planned to do. Hearing no response, I said, “Maybe you could volunteer?” Her reply, as usual, cut right to the point: “Why would I stop working for money to start working for free?” I couldn’t help but laugh, and then she did too, a laugh I loved because it was so much like Scooby-Doo’s, six beats, rising on the third before falling back down. For her, retirement offered something she had never had the luxury to do before, and that was absolutely nothing.

My grandmother went to an Irish-speaking school in a time when most schools in Ireland spoke English only. I remember saying how fortunate she was once because I had a romanticized vision of what life in Ireland would have been like, feeling like I’d been robbed of this essential part of my identity, and she took the air right out of my balloon by saying, “WHY? I didn’t understand a thing they were saying, so I just slept when I got there. And that’s why I’m so stupid now.”

When she came to Nebraska for my high school graduation, she slept in my bedroom. Two things stay with me from that time: one, she hadn’t noticed in the daylight the glow-in-the-dark stars I had stuck to my ceiling, saying she’d woken at night and thought she’d “gone to heaven.” The second is that she looked at my collection of books about Irish history and pointed out the one about Michael Collins—my hero then—saying it was “his fault that the country broke apart.” She did an imitation of spitting when she said his name. In my teenage arrogance, I tried to argue with her that it was Eamon de Valera who split the country, that Collins was just doing his best to get what he could at the time, and she shot me down with a withering look and a shrug, no interest in having a debate.

I visited Rhode Island, where she lived, on a trip by myself soon after that, bringing flowers when I went to see her. “Aren’t they pretty?” she said before muttering, “But they’re just going to die.” I smiled, having anticipated such a response. Placing them on the kitchen table, I said cheerfully, “We’ll just enjoy them until then, Grams.” Her attention had already turned to the apple cake I’d also brought, the gift she truly appreciated.

A few days later, we drove to Newport and toured Hammersmith Farm, Jacqueline Kennedy’s childhood home and the place where the wedding reception was held after she married JFK. “Imagine growing up like this,” Grandma said as we filed into the dining room. Her entire home could have fit into it comfortably, twice at least. “A doll house come to life,” she whispered when we were in Jackie’s room with its sweet twin beds, beautiful vanity and desk, the kind of bedroom I had dreamed about when I was younger. I was inspecting the books on a shelf, wondering if they’d really been hers or if they were added later as props, almost ready to risk picking Black Beauty up to see if her name were written inside. “You should just take it,” Grandma said loudly, “with what these tickets cost.” The tour guide shot us a disapproving look, quickly moving the group on to the next room. When we returned to the car, Grandma found a wallet in the parking lot, and we went back to the house to turn it in. The employee asked if she’d like to leave her name and number in case the owner wanted to thank her, and she refused, but not out of humility, telling me on the way back to the car that she wasn’t “going to be blamed if the money goes missing.”

Grandma made the trip to Nebraska again when I graduated from college, and she was so proud, perhaps prouder than anyone else. She marveled at my confidence, how sure I was about where I was heading with teaching. I know now, of course, that I still had much to learn, a lot growing up to do, but being able to choose my own path, create a career and a life for myself—not governed by the will of others—was something she didn’t have the opportunity to experience herself, something she could hardly imagine. I couldn’t have understood that then—such appreciation only comes with age—but I feel it deeply now. An emerald bracelet was her way of marking my passage into real adulthood. I treasure it still.

Grandma was a terrible cook, and she knew it. I loved watching her face when we ate Indian food or anything with garlic, the horror of it. She called salad and any vegetable that wasn’t cooked practically to mush “rabbit food.” I giggle every time my mom talks about when she went to dinner at my grandparents’ house while my father was away, where Grandma served roast “as tough as shoe leather,” which she had to politely suffer through. As a kid, I knew to stick to desserts and little cans of pineapple juice when we visited my grandparents, eating and drinking under the giant painting of The Last Supper that loomed above the tiny kitchen table. I don’t know if my grandmother saw the humor in that choice, but I certainly did. Why not have a piece of pound cake and a cup of tea while gazing upon Jesus’s final meal before his betrayal?

Her dedication to Catholicism was on display throughout her home; there was a scene with a hologram Jesus hanging in her bedroom, and the entryway was brightened by a Virgin Mary lamp, illuminating a dark corner in the wood-paneled living room. That devotion made me worry when my grandmother came for our wedding in 2008. We had our visiting family over to our apartment the night before, and though I’ve written about this in the past, it’s worth sharing again. I was so worried about Grandma being offended by Alvaro and I living together before getting married. When we had a moment alone together, she shocked me by saying, “I think it’s great that you’ve had a chance to live together first. Now you know exactly what you’re getting. More people should do that.” I was speechless. She was the last person I expected to hear that from, and it makes me smile to remember it.

Grandma and Dad

As we talked on the phone years later, when she asked if we were planning to have children, I told her no, that we didn’t want that for ourselves, bracing for the usual responses: Oh, you don’t know that for sure. Your feelings will change. Even if you don’t think you want children, you will regret it someday. But my grandma surprised me once more by saying that she thought it was wonderful that women have a “choice about these things” today, that they don’t feel forced into becoming mothers. I’ve wondered ever since about a life where she would have been able to make her own choices, what that might have looked like for her.

The pandemic was harder on her than it was for the rest of us. The facilities where she lived cut off family visits and outings, the isolation and boredom agonizing. But for her 90th birthday in March of 2020, she was able to leave to celebrate, all of her children in attendance. She had her hair done, something she always enjoyed, and then she gathered with the people who loved her most. I’m so glad she had that day.

Eileen, Grandma, Dad

The children gathered again and were with her yesterday as she passed peacefully from this world to the next. She will be buried next to my grandfather, who made that transition almost 27 years ago. I remember visiting his grave with her, bringing daffodils that I know she thought were unnecessary but felt right to me. We were silent for a while, each in our own thoughts, and then she pointed to their shared marker, where her name was already engraved along with her year of birth, just the year of her death to fill in when the time came. “My final resting place,” she said wryly. I laughed. She laughed.

That’s where I’ll see her next. But instead of flowers, I’ll bring cake.

Josephine Joy
March 1, 1930-January 14, 2022

Have Yourself an MSerry Little Christmas

I thought we’d agreed not to exchange gifts this year. But, as she is wont to do, MS went her own way.

I received my present early because she was so excited: a winter getaway! My destination was the Emergency Room long before the sun rose on Monday morning. After days of increasingly intense left abdominal pain, I knew I wasn’t going to make it to see my PCP, telling Alvaro through my tears that he needed to take me. At the ER, an aide who certainly wasn’t in the Christmas spirit reluctantly brought me back to a room and practically threw a gown and specimen cup at me, leaving without instructions. A friendlier nurse came in to do blood work and start an IV but clumsily blew through my vein, leaving me covered in blood before trying the other arm, saying if she did it again, she’d “get someone else.” All out of arms, she fortunately got it right before I was wheeled to a CT scan. Hours later, the doctor revealed the big surprise: acute diverticulitis, giving me an antibiotic prescription and instructions for a clear liquid diet as stocking stuffers.

MS, you shouldn’t have. It was far too generous.

I’d heard of diverticulosis and diverticulitis before, but I didn’t think it was a big deal. Something about not eating popcorn or seeds, right? Any infection is a problem with a suppressed immune system, and this one is particularly wicked, even worse than having C. diff two years ago over Thanksgiving and Christmas.

I took my first antibiotic when we got home and collapsed from exhaustion, only to wake later violently ill, vomiting for hours. I’d been too tired to notice that it contained amoxicillin, which I cannot tolerate. I was able to get in touch with my PCP, who prescribed a different antibiotic cocktail and anti-nausea medication.

In this year’s Christmas miracle, I am feeling slightly better, though it took five full days. I didn’t need pain medication this morning for the first time this week, and my nausea had dissipated. I’m at about 60%, which is a big improvement even from yesterday. There is a long road ahead, but it was gift enough to feel more like myself again.

We didn’t have elaborate Christmas plans. The extended family living in the area hasn’t gotten together for two years, which hurts my heart. But my favorite people to spend holidays with are Alvaro and my parents, and we were fortunately able to do that.

Alvaro and I don’t buy each other presents anymore because he is hopelessly bad at it, instead choosing something we want for ourselves. For me, it was wallpaper for my office; for him, a fancy cart for all of his car-washing products and accessories. He loves nothing more than spending ridiculous amounts of money on car-washing potions, using them to shine our vehicles to mirror-like perfection. That same attention does not extend to our house, but it’s Christmas, so we’ll set that aside.

Christmas morning was sweet and simple. We gave each other chocolates, which I’ll have to save for later because chocolate is on the “definitely not” list right now. I poached eggs for brunch, finally back to some solid food (however bland), one on half of an English muffin for me, four for him on four slices of whole grain toast with two avocados. Have I ever mentioned how much Alvaro eats? It’s truly something.

My mom has always created beautiful holidays. There’s nowhere I’d rather be for Christmas, and the house was bright with garland and lights, a beautifully set table, a delectable meal. Alcohol is out of the question at the moment, so I toasted with ginger ale, grateful not to be spending the holiday in the hospital. I had a few bites of the things I could but was really filled up by what mattered, what has always mattered: my mother’s caring attention, my father’s wit, Alvaro’s silliness, dogs begging for ever more treats, memories of Christmases past, so much laughter. Mom gave Alvaro an afghan crocheted from yarn left from afghans she has made for other family members, and he’s wrapped in it now, falling asleep in the chair next to me. I’m enjoying a cup of tea, soothed by it and the tree lights, finally feeling that Christmas magic that has eluded me so far this season.

It wasn’t quite the holiday I had imagined before MS decided to be my not-so-secret Santa, but it was enough. More than enough.

Road Trip to Rosaleen

Thirty years separate the birth of my sister’s first child and the birth of my brother’s first child, the last for our generation. I was 11 when I first held my nephew in my arms, and the memory that stays with me is how I could still feel him, his warmth, long after he’d been passed on to the next person. I was in love. Holding my new niece Rosaleen last week, only a few days after she’d been born, was just as joyful.

It was no small feat getting to her. My brother and his wife live in North Carolina, and we live in Nebraska. I don’t fly anymore, as little as possible since the invasions of Afghanistan and Iraq, the slog of it too much, and COVID-19 has further limited my inclination to take to the skies. Our dogs have never been boarded, and it’s too late to start that now, so my husband would have to be on vacation for me to leave for more than a couple of days. But his pre-scheduled vacation worked well with the due date, and I began to plan a road trip. My mom wanted to come, as did my niece Abby, and soon, we were on our way.

We looked like the Beverly Hillbillies as we pulled out of the driveway, loaded up with luggage and gifts. Because we were driving through several states that are currently hot spots for COVID infections, including Missouri, Kentucky, and Tennessee, I double masked at every stop for gas and food and booked Airbnbs to avoid contact with other people as much as possible. When booking, I couldn’t believe my luck in finding a beautiful home in Marion, NC, that was almost 200 years old and updated with luxurious amenities to stay in during our visit.

We drove through the winding roads of the Great Smoky Mountains, landing at the foot of the Blue Ridge Mountains. It was easy to get turned around in Marion, street signs turned the wrong way, so many private roads, but we finally found the drive where the house was supposed to be. Except all we saw were a few trailer homes and a couple of tidy little houses, the short gravel road looking unpromising. “This can’t be it,” I said, looking at my navigation system, pulling into a driveway near the top before seeing the friendly signs decorating the door, including such gems as “I shoot first and ask questions later,” and “If you can read this, you’re in my scope’s sight,” and “We don’t dial 911.” Past this property was a driveway that led into a field and one that seemed to lead into the forest. We chose forest, and sure enough, just as we turned the corner, there it was, a Greek Revival brick beauty from another time.

The house exceeded all expectations. The owner thought of everything, and unlike the other Airbnbs we rented to stop for a night on the way there and the way back that were full of dilapidated furniture and threadbare sheets, this one was immaculately clean and full of thoughtful touches: an espresso machine, high-end hand soaps, beautiful dishes, glasses and cutlery, quality linens, gorgeous furniture and art. The grounds were private and perfectly manicured, a hidden oasis. The historical integrity of the home had been preserved and restored by owners over time, including hand-carved wood molding and stair railings, original transom windows on the first and second floors, and original heart pine flooring.

Several months ago, I noticed a change on HGTV shows: calling the main bedroom in a home the “primary suite” instead of the “master suite.” I love language, and I understand how deeply words matter, so I appreciated the adjustment. “Master” implies dominion over something, sometimes people, and comes with a complicated history. It’s not necessary to describe the biggest, best room in a home. Some may balk and call it overly politically correct, but if they’re so attached to the term “master suite,” they should take a deep look inside to figure out why.

It was the first time I’d slept in a home that had once housed a master in the darkest sense of the word. That had been built by enslaved people, forced to work their lives out on its grounds. With the exception of the north wall, rebuilt in the early 2000s because of damage that took place in 1865 when General Stoneman’s Union forces fired at it with cannons, each brick for the house was painstakingly formed and fired on site by enslaved people, assembled by enslaved people. This included enslaved children, whose heartbreakingly tiny fingerprints can be found in many bricks from that time throughout the South as it was their job to turn them while they dried. These souls were heavy on my mind throughout the trip.

I found myself unpacking in what would have been the master’s room, a true master bedroom. I’m not easily spooked, but in the silent night, as pitch dark outside as it would have been in the early 1800s, I found myself looking for spirits, especially as might be reflected in the antique mirror with its wavy reflection.

There are few reminders left that the house was once part of a 1,500-acre plantation. The land, for example, was mostly sold off over the years, leaving just a few acres with the home. It is a historic landmark, noted by a sign at the front door with the name of the original owner, William Morris. His name lives on through that sign, as does the name of Powell Simmons, a Confederate soldier buried on the property. The names of the people they enslaved are lost to history; even if I’d had time to look up the number of slaves held in Census archives, the enslaved people would not have been named, just marked as male or female along with their ages.

William Morris had surely slept in the room where I was staying. I wanted to know more about the house and its occupants, so I did some research, finding an account from Morris about his time serving in the Revolutionary War, where he fought for freedom from England. Well, freedom for people who looked like him anyway. The land had been granted to him by the English king before the war in an area where he was one of the first settlers, and he retained possession after. He continued volunteering after the war in the Cherokee Nation, driving Native Americans back from what people like him saw as the frontier, and in an account recorded in 1833 as he sought a government pension, he described some of what took place: “We were only gone a few weeks, but killed a good many and took some prisoners and plunder. I killed one Indian warrior myself, and took another prisoner.” His last volunteer stint was under Major Joseph McDowell, for whom the county where the house stands is named.

Powell Henderson Simmons, too, rested while he lived in the room where I was trying to sleep, and he took to his permanent rest in the back yard. Simmons bought the plantation from the Morris family after the Civil War, but before that had been a school master, according to the 1850 Census. I was unable to learn much more about him other than that he was married around the age of 46 and had six children with his wife. He died at the age of 71, and a Mormon ancestry site says that this is his picture. His grave is marked by a headstone placed by the Sons of Confederate Veterans.

It was impossible to forget about the long shadow of the Confederacy for very long during our visit. We saw a disheartening number of Confederate flags displayed outside of homes in the area, and please don’t come at me with the whole “heritage, not hate” or Lost Cause arguments. That flag was and remains a shameful symbol of white supremacy. The 1860 Census shows that 48% of the population in North Carolina at that time was “colored,” the overwhelming majority of whom were enslaved. In fact, of the fifteen states where slavery was permitted at that time, only 251,000 black people were free compared to almost four million enslaved. The towns, counties, streets, and buildings are often named for people who built their wealth on the backs of the people they enslaved.

This is true throughout the country, of course, a living whitewashed history with a firm grip upon the national imagination, but my visit to North Carolina forced me to grapple with it in a more concrete way. Here, it said, look. Really look. And I did. I’ve kept looking, reading the narratives of enslaved people in the days since, newspaper articles pre-dating and written during the Civil War, including their frequent notices of runaway slaves. In an account published in the Tarbourough Press in 1850, it tells the story of an escaped enslaved man captured by a sheriff, who handcuffed and bound him to the buggy. The enslaved man managed to disconnect himself and ran quite a long way—still handcuffed— before the sheriff caught him again, and then they struggled. The enslaved man’s handcuffs broke during the fight, and he managed to get the sheriff’s pistol, which he used to shoot him in the leg before securing him to a tree using the sheriff’s own chains and padlock. He took off in the buggy. My heart lifted to finally read such a story. But there were few happy endings for enslaved people, and this was no exception. The enslaved man was recaptured shortly after that and returned to the place he had run from. What horrors he endured after that are all too easy to imagine.

In the census from that year, this question was asked: “What number of slaves do you own; their age, sex and color; the number of fugitives; number manumitted; the number of persons deaf and dumb, blind, insane, or idiotic, during the year ending the first of June, 1850?” Was that a slip, I wonder, using the word “persons” instead of “slaves” in the final part of the question? I couldn’t help but long for an outcome where the enslaved man in the story had gotten away and been counted among the fugitives. Were there any manumissions (freedom granted to enslaved people by their owners)? The laws in North Carolina did everything they could to prevent them. Before 1831, manumissions had to be approved by a court or the state legislature, were only approved for “meritorious service,” and required a payment of $1,000 per person to be freed, a staggering sum. Manumitted people had 90 days to leave the state, or they could be arrested and sold into slavery again. After 1831, the $1,000 fee still applied, though it was lowered to $500 if the enslaved person were over 50, and the manumitted person was allowed to stay in the state, which many did despite the risks because they had spouses (not legally recognized) and children who remained in bondage.

With three generations of our family under the roof of this historic home, I couldn’t help but think about all of the generations who had been in this space before us, including the enslaved people who never knew freedom and then their children who finally did—limited as it was after the war—and, yes, even the Morrises and the Simmons’ of the county, the generations it likely took to reach a sincere understanding of equality as a concept applying to all humans. Along with that comes the sad realization that we’re nowhere close to that understanding as a country yet, demonstrated by every Confederate flag, by every hysterical cry against the 1619 Project and Critical Race Theory, by a criminal justice system that upholds the white supremacist version of America it was built to serve, and on and on and on. It’s overwhelming, and it will continue to be so until we face the truth about our shared past and make meaningful changes to correct as best as we can the many missteps made along the way. Instead of denying that history, burying it, we are best served by facing it, discussing it, really seeing and understanding it.

It sounds impossible when you consider the scope of such an undertaking. We have to lean into the complexity of our country’s history instead of insisting on clinging to a watered-down, idealized version of it. We have to reflect upon the time it takes to reach our full human potential while understanding that we’ll never be all the way there. It often feels irresolvable.

And then a baby is born, and you hold hope in your hands, understanding how much you want better for her and all those who come after her. How much all the people before you wanted the same for their children, for your parents and grandparents and great grandparents, for you. Looking into Rosaleen’s blue eyes, hearing her mighty pterodactyl cries, my heart surged with love and optimism. We keep getting closer, and although it takes work that is difficult and uncomfortable, all things worth having require such effort. We laughed and chatted as we took turns with the baby, her older brother keeping an eye on us to make sure we were gentle with her, waiting patiently for his time to come again. Her mother Ashley, whom I admire for her quiet way of steering the family, her patience, resilience and unflappable nature. Her father, my little brother, transformed by this new charge, bewildered—as so many parents are—by the all-consuming devotion that tethered him to her immediately. Her cousin Abby, soon to turn 15, cradling her, no longer a child herself but a curious, determined, deeply compassionate young woman with a sweet, open heart. Her grandmother, who guided my siblings and me away from hateful, bigoted ideas, a woman who has always approached people with warmth and kindness, softly speaking her love into her granddaughter, holding that perfect little face close to her own.

Let these qualities be the legacy we leave to Rosaleen, to all of our children, and to our children’s children.

Haptic Fourth of July

“So things are going really well!” Dr. Z said at our six-month appointment early in June. I’d had MRIs of my brain and cervical spine the week before, and there were no new lesions, always something to be thankful for. When we talked about issues, I realized I hadn’t had any new ones since seeing her in December: no infections, no new symptoms, no worsening ones. We spent much of our appointment chatting, a rare pleasure with a busy neurologist and professor. We talked about teaching, about mentors who had made a difference in our lives, about education and medical care in prisons. It was delightful, especially once the neurological exam was behind us.

The overall exam isn’t too bad, involving checking reflexes and eye movements and my ability to walk on my tippy toes and heels, to touch my nose with my eyes closed, to walk heel-to-toe in a line, much like the DUI tests officers give people on the side of the road. (Also, while I may get a pass from Dr. Z, a police officer would not be as impressed, so should I ever find myself in that situation, I’ll insist on a breathalyzer; I barely drink, let alone drink and drive, so I’m not really worried about more than looking like a stumbling fool as traffic passes.) The worst part of the exam—as always—came when Dr. Z tested my feet for neuropathy. I’ve written before about how much I cannot stand to have my feet touched, and she remembered, promising to do it as quickly as possible. I focused on stifling screams while she ran the tongue depressor up and down the bottom of my foot.

I left feeling good, like I’d passed a test I hadn’t studied for with an exceptional grade. So, of course, MS decided to remind me about how in charge it was shortly after.

The two weeks that followed were difficult, likely caused by a pseudoexacerbation, also known as a pseudo flare. I loathe that term because we mostly use “pseudo” to describe something that is fake. When describing a medical condition, it makes it sound like something that’s all in your head, something you’ve created or welcomed in yourself, like you’ve falsified problems to garner sympathy. In MS, it means that you’re having significant symptoms, but they are not caused by new disease activity; instead, some other factor—stress, infection, environment—triggers old areas of damage. UTIs are a common cause, so they’re often the first thing neurologists test for when patients complain of relapse-like symptoms.

I’m also particularly sensitive to the “It’s all in your head” implications of a “pseudo flare” as a woman. That phrase has been used to dismiss real medical problems women have had for centuries, and it’s one of the reasons autoimmune disorders can take years to diagnose. To be fair, the problems I experienced were in my head, specifically the brain part of my head, more specifically the parts of my brain damaged by MS. Not my imagination.

Several things were noticeably worse: first, the tremor in my left forearm and hand. It was visible sometimes to outside observers, usually Alvaro since I’m still isolating at home, but even when it wasn’t visible, I could feel it in my arm constantly. It was relentless. Dr. Z believes it is dystonia, which she explained as one muscle doing what it should to achieve the movement you’re going for, but a muscle that’s supposed to relax for that to happen is also engaged, fighting against it. It only happens in certain positions/with certain movements for me usually, but for two weeks it was persistent. I cut down on caffeine and tried to minimize stress, but trying to reduce stress is an incredibly stressful mandate. There were home repairs not going right, three long days of intense curriculum work, Zoom teaching, medical appointments. I was exhausted by the afternoon, completely empty, and I didn’t wake up feeling recharged the next day before starting it all again.

I was also having a difficult time with my words. This is maddening for someone who loves reading and writing. My niece Abby came to stay for a few days, and she wanted to make Rice Krispie treats. We gathered all of the ingredients and set to work. “Can you get the mushrooms from the cabinet?” I asked, and she looked at me quizzically. You may be wearing a similar look now—mushrooms in Rice Krispie treats? Gross. “Marshmallows?” she asked helpfully. I nodded and laughed. She laughed, too, and then again when I asked her to open the mushrooms. “Marshmallows!” she said, giggling. “Augh!” I responded. “MARSHMALLOWS. Marshmallows.” And when I told her to add them to the melted butter, before I spoke, I said to myself sternly: say marshmallows. “Can you add the mushrooms?” Damn it!

I had the second part of my dental implant surgery a couple of days later, and my doctor called the next day to see how I was doing. “I’m sore but doing well,” I said. “Thank you for your—” and the word I had intended to say was gone. I began trying to find it desperately in the awkward silence. “Are you still there?” he asked. “Yes,” I said. “I really appreciate your . . . care!” Care. There it was, like keys suddenly discovered in my pocket after a frantic search of the house.

To top it all off, the fatigue was debilitating. I almost couldn’t get through my usual walk. I was shattered at the end of full work days, brain and body shutting down. My emotions were affected, too, patience taking the hardest hit. I’m not known for being patient to begin with, so that can be difficult for the people around me, especially Alvaro.

Being trapped in the house as other people get back to life as usual definitely feels worse in that head space. I began seeing commercials for Cox about immunocompromised people who continue to be separated from family, friends and activities because of their inability to be effectively vaccinated. Initially, I felt seen, but then the two people in the commercial receive haptic vests to simulate a hug. Wait, that’s the point of this commercial? I’m not a fan of haptics, honestly. When I finally upgraded to an iPhone 12 from an SE a few months ago, I didn’t like the sensation of it buzzing and vibrating where the old one hadn’t. It was too much like my tremor. The first time I saw one of those Cox commercials, I thought it would be about encouraging vaccination to help the immunocompromised return to their lives, too, so the haptic vest was a huge letdown.  Maybe it can make some people feel better about separation, but I only found it depressing. I’d rather have nothing than settle for something false, fake, pretend. A pseudo hug, if you will.

“When are you going to be better?” Alvaro asked about a week in to my pseudoexacerbation. Worried after seeing the mess I had been for several days, he wanted his wife back. I wanted that version of myself back, too. That’s the thing about MS: you don’t know how long it’s going to toy with you during a flare, whether a symptom is going to go away or if it plans to settle in forever. Despite there being no new lesions, my left side has gotten glitchier in the past few years, including eyelid twitching that can last for weeks at a time, the tremor in my left forearm and hand, a calf in constant spasm.

Over the last week, I finally began feeling better. This was most noticeable when it came to the arm/hand tremor, settling back to usual, only reminding me of its existence in certain positions, corrected when I adjusted. It felt so good to be back to—well, not normal exactly, but where I’d been a few weeks before.

A couple of nights ago, I sat down with a cup of tea in the evening to unplug and watch stupid television, grateful for resting being a choice instead of a necessity for the first time in recent memory. And then my left foot twitched strangely, a fluttering on the bottom, right in the middle. I moved my foot, stretching the toes toward the ceiling, and it stopped. But before I could pick up my tea, it started again. It has been coming and going since, dozens of times each hour, especially when I’m resting. It’s like a vibrating phone, one I can’t unplug or turn off, crank calls at all hours.

Buzz, buzz, buzzzzzzzz.

Me: Hello?

MS: Ha, ha, ha, ha, ha, ha, ha!

Click.

As people in the neighborhood celebrate the Fourth with fireworks, legal and illegal, my nights have been spent trying to calm my poor dog Maggie. She quakes with terror, and we’ve tried everything over the years to help her, including the ThunderShirt, which is supposed to feel like a hug and calm the dog through storms and fireworks. It didn’t work for Maggs. We have also tried medication from the vet; at best, it just briefly takes the edge off, but it’s enough sometimes to get her to settle in behind my legs if I’m lying down on the couch. Last night before she joined me, my left foot twitched as it has been doing, then my arm started trembling, and soon, the whole left side of my body was experiencing tremors, imperceptible externally, but all too real inside this body. When Alvaro lifted Maggie up to the couch, she quivered against me before curling into a ball, vibrating against my twitching side.

Haptic dog meets haptic leg. Haptic booms outside the window. Haptic Fourth of July to all.

The Left Behind

Photo credit: Netflix

In Stranger Things, the Upside Down is an alternate dimension, one that mirrors our world—all the same buildings, for example—but it is a darker, foggier version, one devoid of human life. The Upside Down is hidden from sight, only visible once you’re in it yourself, and it’s ruled by scary monsters, the Mind Flayer and the Demogorgon. I’ve been thinking about it a lot lately. Unable to be effectively vaccinated, I’m left floating in this space I now call the Left Behind, the monster in control here COVID-19. Though the Left Behind isn’t as scary as the Upside Down, it can be just as lonely.

The world is moving on. That message gets clearer by the day as people return to life as usual.

A favorite restaurant that we supported throughout the pandemic began refusing takeout orders more than a month ago. I know others are going to follow, and I understand the need to focus their attention once more on customers dining inside the building. Still, it’s difficult not to take the rejection personally after so faithfully spending our money to keep them open during difficult times. I’d love to dine in, to enjoy a creative cocktail, to eat food right after it is made instead of figuring out how to best warm it up at home.

I want to go out to lunch with my mom. I want to meet friends for a drink. I even want to go to a faculty meeting in person, and that is really saying something. I want to walk by the water without wearing a mask when people are within 50 feet of me, and I certainly want to stop getting strange looks from them for having said mask on as I pass. Haven’t you heard? their expressions say, sometimes with a roll of their eyes. It’s over! You don’t need that silly mask anymore. It’s not their fault, though—people like me have largely been ignored in media coverage about vaccinations.

Immunocompromised people are not being talked about enough in this debate. “Get the vaccine if you want to go back to normal” seems to be the main message as our supply begins to exceed demand. On the other side are people refusing to get vaccinated, saying it’s their choice, that it’s no one else’s business because objectors can get the vaccine themselves if they’re so concerned.

I am deeply, deeply tired of this binary discussion.

When immunocompromised people are mentioned in news coverage, it is often as an afterthought, one skipped over quickly. If any time is spent on us at all, it is usually to say that our inability to protect ourselves is the kind of unavoidable collateral damage we must expect; it’s simply the price of getting back to “normal.”

I resent being reduced to acceptable collateral damage. Joining me in that pile are people taking other immunosuppressive drugs, people in chemotherapy, people with HIV. People. Human beings, parents, children, siblings, partners, friends, neighbors.

The New York Times published this article last month, bringing attention to the problem. I sent a copy of it to the HR director at my college when I checked back about my request to continue working from home until the end of the year, one supported by a letter from my neurologist. The request was eventually approved, but the recommended accommodation could have been denied and would have put me in an impossible bind.

Get the vaccine, don’t get the vaccine, trust the vaccine, don’t trust the vaccine, vaccine hesitation, wasted doses, mask on, mask off. The prospect of achieving herd immunity in this country is a joke. It’s not going to happen, and I’m weary of the will we or won’t we of daily stories about it. I’m angry that mask-wearing and vaccination were politicized early on and continue to be demonized. I’m angry that misinformation has a stranglehold on a significant part of the population, that it is fueled by people who benefit from stoking the flames. I’m angry about influential people and organizations adopting anti-vaccine or vaccine-neutral positions because they choose not to protect themselves or because they have already protected themselves and don’t care enough about people who don’t have the luxury of a choice.   

I’ve been trying so hard not to give in to that anger and frustration. Giving in is about surrender; it’s creating space where I believe none should exist. It is about failing. To give in is to accept powerlessness. And MS, frankly, has forced me into that corner often enough already.

I’m fortunate to have a job where I can continue to work from home. I’m fortunate to have a partner who can do all of the shopping. I’m fortunate to have friends and family and health care providers who look out for me and my safety. So many others do not have this kind of support, and I worry about them. I wish others would, too, instead of relegating them to the Left Behind.

Photo credit: Netflix

Because the two dimensions are connected, Will found a way to communicate from the Upside Down with his mom in the real world through her Christmas lights. In the Left Behind, we have handier tools—Zoom, phones, e-mail—but the physical separation and resulting isolation remain difficult for millions of Americans, including me.

Please get vaccinated for yourselves, for us, and encourage others to do the same.

Infusion Day and a Look Ahead

“Home free!” I heard a familiar voice yell from a couple of yards over. I could picture her hand touching the tree we used as home base and felt deeply the injustice of being in bed, the sun still shining brightly. Their bikes flung onto the grass, abandoned once they’d had their fill of riding after dinner, my friends had moved on hide-and-go-seek. I got out of bed as quietly as possible, tiptoeing over to the window to see as well as I could through the sheer curtain everything I was missing out on, wondering, as I often did, why it was my misfortune to have the world’s meanest mother.  

We laugh about it now, my brother and I, the excessively early bedtimes of our childhood, in our pajamas and tucked in for “reading time” by 7 p.m., even in the summer.  

Our mother remembers It differently. While I picture myself at the window, wide awake and forlorn, she likely recalls her children getting up early in the morning and spending all day outside. Children coming back inside tired in that way they don’t recognize, the kind of tired they are determined to fight, inevitably leading to increasing squabbles. She was firm about keeping to a routine and making sure we got enough sleep.  Summer days in England are long because of its high latitude, weeks with sixteen or more hours of daylight, so the sun would have still lingered even if we’d had a more reasonable bedtime of 8, or—gasp!—even 9 p.m. 

So for the poor, pitiful Joy kids, there was no going back outside after dinner on those bright summer days; instead, we had a winding-down routine of pajamas and reading time. I loved to read, but there was no concentrating on it when all I could think about was what I was missing outside, where my friends ran wild in all those ways I could only dream about. Not that dreaming was close to happening with the sun and my friends’ laughter reminding me of how unfair my life was. 

I miss the simplicity of that kind of unfair. 

Today, I’m at the infusion center for my Ocrevus treatment. Ocrevus works its magic by depleting certain B cells that trigger MS attacks. In people with normal immune systems, B cells are responsible for creating antibodies that fight bacteria and viruses. That means I pay for slowed disease progression and reduced relapses by purposely weakening my immune system, making it more difficult for my body to recover from illness and infection. 

It also means that I cannot benefit from COVID vaccinations the way someone with a normal immune system can. Because B cells are necessary for creating the antibodies that make vaccines effective, I face a choice between relapses and vaccination, which isn’t really a choice at all. It’s not as simple as delaying an infusion, either. It takes 12-18 months after stopping treatment with Ocrevus for B cells to return to pre-infusion levels, and being on a therapy as strong as Ocrevus changes the way those cells come back.       

I still get a flu shot each year, though it probably doesn’t do anything for me other than ensure that Alvaro also gets his when I drag him along. In that same spirit, I’ll get a COVID vaccine, following the guidelines from the MS Society. That means I need to look at June for vaccination before my next infusion in August. We still don’t know how effective the vaccines will be for people with depleted B cells, if they will be effective at all. What is certain is that they won’t be anywhere near as effective for people like me as they will for people with normal immune systems. This is supported by discussions in my Ocrevus Facebook group, where most people report that they don’t have antibodies even after recovering from COVID; others who have since been vaccinated consistently report tests coming back negative for antibodies. The outlook is not good.  

I realize much is still unknown about the vaccines in general: how long they will protect against COVID, how effective they will be against variants, whether they will decrease transmission from vaccinated people to others, etc. Unable to protect myself with the vaccine, the transmission question is an especially important one.    

This leaves me in a tough position when it comes to work in the fall. The college where I teach is still delivering most classes remotely in the spring, fortunately, but it is beginning the transition back to campus in the summer. My colleagues and students are looking forward to being back on campus, even if it is a dramatically different one than we left last spring, one requiring more safety precautions and distancing. I would love to be back in a room with students, too, leaving teaching to black screens on Zoom behind. Returning to learning in 3-D won’t be safe for me, though, so I may need to put in for medical leave or accommodations. 

My mom called yesterday to let me know that there were extra shots available for people in her age group at the community center, and she went straight away to claim one. We had a phone celebration and laughed about how excited she was compared to the other people in the observation seating area, which may as well have been the DMV. I am so happy for her, as I will be for friends and family when their turns arrive, each shot bringing a bit more relief. These vaccines offer hope of returning to something closer to life as usual, and so many people are imagining summers that may hold family get-togethers, visits with friends, parties, playdates, restaurants, face-to-face work environments. 

I have no such expectations. Thanks to MS, I’ll soon find myself back behind a curtain, watching from the window as the world moves on around me, waiting for morning and the opportunity to be free once more.

Gratitude, Grief, Thanksgiving

Thanksgiving is my favorite holiday. I love the days of preparation, a beautifully set table, time with family. This year’s was different, smaller with just Alvaro and my parents, but sweet anyway.

It was my third Thanksgiving with MS. I spent the first struggling to be thankful, my diagnosis still raw. Last year, I hosted for the first time but couldn’t enjoy it because I was so unwell with what I didn’t know at the time was a dangerous C. diff infection that would take months to get over. This year, I was determined to reclaim my Thanksgiving joy. In the morning, I communed with the geese on my walk. When I’m by the water, I often think about all of the things I am grateful for, one being the simple pleasure of my legs moving the way I want them to, something I could not have fully appreciated without MS letting me know what life looks like on the other side. The air was chilly, the sun extraordinarily bright, and I left feeling invigorated, looking forward to the day to come.  

I stopped at Starbucks to pick up coffee for Alvaro and myself, joining an incredibly long and slow drive-through line. It is right next to a Sonic restaurant, and as I waited, I couldn’t help but look at the crime-taped scene, the memorial offerings, as if an answer might appear.

Last Saturday, there was a shooting in the restaurant. It’s about a mile from our house, and I heard the chaos as helicopters hovered and fire and police departments responded. I spent the rest of the night watching Facebook Live videos and news reports to see what had happened.  

Two young men were killed, and two other young people were injured critically. Details that have emerged since point to a single shooter. He was angry about being arrested for identity theft after Sonic employees reported him just a few days before for $57 of food purchases using someone else’s app. He was released after a $150 bond was posted, and on Saturday night, he drove to the restaurant in a U-Haul that he set on fire before going inside and shooting employees.

One of the people critically injured is a student at our college and only 18 years old.

The employees’ cars, parked side by side at the end of the lot, stayed there as part of the scene for days after. They had been moved by Thanksgiving morning, but the image of them was still on my mind, these cars the employees had parked before their shifts began, fully expecting to return to them at the end of the night. As I inched forward in the Starbucks line, I thought about the stories I’ve learned about the victims since and began to cry. I was grateful that my mask covered some evidence of that when I reached the window, where a chipper barista greeted me warmly. I don’t know if the person in front of me saw my tears or if she was just feeling giving in the spirit of the day, but she paid for our coffee, and the kindness of it made me cry a little more. I left a big tip and drove home to finish preparing for dinner.

There’s guilt in having things to celebrate and appreciate while others suffer and grieve. Gratitude can feel impossible when we are suffering ourselves, whether it is because of a loss, injustice or illness. It counts most when it takes effort; after all, it’s easy to be grateful for good fortune, more difficult to find the light in darker times. MS has made me understand that better, and one thing I’ve never asked—though others have on my behalf—is, “Why me?” I stopped believing in a “why” with good reason long before my diagnosis. Why not me? Why not you? Why not him? Tragedy is all around us, all the time: in war zones, in terminally ill children, in a pandemic out of control, in systemic racism, in a fast food restaurant close to home on a Saturday night. Not why me, why you, why them, just why. Why?

As I prepared the turkey and snacks for our gathering, I thought about the families of the victims and the Thanksgivings they were or were not having, my heart heavy. How can we find gratitude in something so violent, so senseless?  I found it in GoFundMe, where our community is stepping up to support victims and their families. I found it in the way the first responders answered the call. I even found it in the way the tragedy has stayed with me; I don’t want to be able to turn it off, to shake my head and move on.

Sometimes it’s difficult to focus on anything other than the many ways we break. Then we need to work on healing and helping others do the same. I don’t believe in God, not because I don’t want to, but just because I can’t. What I do believe in is the sacred power of our humanity, our ability to see what most people describe as divine in one another, in ourselves.

At the Thanksgiving table, I looked into the beautiful faces I love dearly and thought about all the things I’ve been more consciously grateful for since being diagnosed with MS. They include a fulfilling career and students and colleagues I love, the sanctuary of a happy home with my husband and dogs. My parents, siblings and nieces. Friends who are family. A treatment that has so far mostly preserved my quality of life. I’m thankful for all of these each day, the everything of them, and whether walking outside or spending time with my family and friends, I am intentionally grateful for these people and circumstances while I have them, understanding all the while, as Frost says, that “Nothing gold can stay.”

What is that if not a prayer?

* * * * *

Fundraisers for the victims and their families:
Nathan Pastrana memorial: https://www.facebook.com/donate/2892452907640267/
Ryan Helbert memorial: https://www.gofundme.com/f/bellevue-sonic-victim-memorial-fund
Zoey Reece Atalig Lujan: https://www.gofundme.com/f/support-for-zoey-reece-lujan
Kenneth Gerner: https://www.gofundme.com/f/mnrxwx-helping-kenny
Sonic employees: https://www.gofundme.com/f/bellevue-ne-sonic-drivein-tragedy