I’m a sucker for a good graphic representation. I use them all the time while teaching my classes. My PCP uses them when she describes medications and their efficacy, helping me understand quickly. Just over a year ago, I was at a doctor’s appointment for a family member where the doctor drew right on the wall, which had been painted with that dry-erase paint. It was thrilling in the dorkiest way.
My understanding of MS is primarily based on personal experience. But I do a lot of research also, mostly because it’s a good way to channel my anxiety into something useful. Other people aren’t as open to delving into thick scientific papers, so when they ask me about MS, I often refer them to the quirky-but-informative Dr. Aaron Boster’s YouTube series about the disease. Today’s short episode ticked all of my boxes with the charts and concepts they illustrated. Although I’d heard about PIRA (progression independent of relapse activity) and RAW (relapse-associated worsening) before, and even the Leaking Pool Theory, they came together in a magical way after watching the brief video embedded below. Please take a few minutes to view it.
Functional reserve refers to the central nervous system’s ability to withstand attacks from MS along with variables that have an effect upon it, including lack of sleep or physical exhaustion. We all have a functional reserve that declines as we age. Think about how slowly you get over a hangover once you’re middle-aged versus how quickly you could bounce back in your early 20s. People with MS face an accelerated loss of functional reserve, and some people discuss it as “spoon theory,” where you have a limited number of spoons each day, like 15; each task (taking a shower, putting gas into the car, picking up the kids from school, making dinner, etc.) takes a spoon away, and when you’re out of spoons, there is no reserve left to do anything else. The only way to get more spoons is to rest sufficiently. This reminds me to share the idea of spoon theory with Alvaro because he still doesn’t understand that when things are bad and I say, “I’ve got nothing left, nothing,” I mean it. If I try to push through, I’m borrowing spoons from the next day, and I’ll pay dearly for it.
The idea of functional reserve as water in my pool, water that is slowly leaking out, helps me better picture and understand all of the things that are happening lately. Although I haven’t had a clinically definitive relapse in more than two years, my disease is progressing in small ways as that water level drops. Among my new issues is an eye twitch that can last for days or even months, making everything feel so historic, like one of those jumpy, sepia-colored movie reels. Then there’s the slight tremor in my left hand, one that is only present in certain awkward positions (unfortunately, holding my phone is one of them) or when I’m over-caffeinated or particularly stressed. Thanks to a car crash a few weeks ago that has led to fighting with the at-fault driver’s insurance company and working with two different body shops because of an unreasonable assessor, stress has settled in for a good, long stay. On top of that, the crash led to the loss of a molar that I had to have extracted before a bone graft was placed. The graft has to heal before I can complete the dental implant in the next four to six months. So besides the claim for my car’s repairs and the resulting diminished resale/trade-in value claim, there’s a bodily injury claim to deal with, one that will take a long time to settle. It’s like someone did a belly flop into my pool, splashing out a lot of water all at one time.
The second chart perfectly describes my introduction to MS: optic neuritis that blinded me in my left eye before most of my vision slowly came back, though it was never fully restored. I have relapse-associated worsening following a major relapse on my right side that continues to limit me from standing or walking for more than 30-45 minutes at a time. My progression since has been independent of definitive relapse activity, but it’s still happening.
All the while, my pool is leaking, leaking. The deep end will become the shallow end at some point, so it’s important to make the most of these halcyon days when I’m mostly floating on top of the water, to focus not on the dropping level but on the brilliant azure sky above.
We learned on Monday that Alvaro’s mom was in the hospital because of a brain hemorrhage. His father, Risto, made it sound as if she’d be better in a week or two, maybe not all the way, but better.
On Tuesday, we were told she had 24-48 hours to live.
On Wednesday and Thursday, we held our breath. Waited. Talked with his father as often as possible.
Early Friday morning, she was gone.
Mothers-in-law get a bad rap for so often being pushy and overbearing, but Irene was neither of those things. She was generous and kind, supportive, loveliness personified. All heart.
Alvaro’s parents live in Chile, but they came to Nebraska several times to visit him and his sister, Bea. Much of our time together was spent around a table, usually ours, for dinner. Alvaro’s family eats like no group of people I’ve ever known before, but Irene usually saved most of her room for dessert. More than once, she playfully slapped Alvaro’s or Risto’s hand as they reached for the last of something she wanted more of. She would drink what she called tea, but it was just really hot water with a green tea bag dipped in it once or twice quickly. She rolled her eyes and laughed when Risto told long-winded stories, which was often. She was competitive about games and would even cheat a little to win. I remember a game of UNO when she threw a Draw Two down on a numeral 2 to change the color being played, feigning ignorance when she was called out for it, but not before I caught the smallest of mischievous smiles on her face. We watched football matches together when Chile played, where I was charmed by how much she loved Alexis Sánchez. “Alexis,” she would murmur quietly whenever he was on the screen. The only time I ever heard her swear was when someone fouled him or stopped him from scoring a goal.
Irene and baby Alvaro
Risto and Irene
Alvaro and his mother had a special connection. Both of them prefer to remain in the background, and they were often found there giggling together. He could be silly with her. When we celebrated his 39th birthday, I gave him a watch he wanted, and as he showed it off for the camera, she joined him with her Timex, laughing the whole time. She quietly pressed money into his hand after, telling him to use it for something he wanted, something impractical, and he used it to buy yet another watch, a gift he’ll always have from her.
This morning, Alvaro put that watch on, holding my hand as we attended her funeral over WhatsApp. WhatsApp—for his mother’s funeral. It was so far from enough, miles from the kind of closure he deserved. Because of COVID-19 restrictions, Chile is locked down to everyone except residents holding Chilean passports. Fortunately, his sister has maintained hers, so she was able to travel there to be with their father, a small comfort to us as we sat in our living room to say goodbye.
After, we went to my parents’ house to be comforted. We shared memories of Irene, including one of her thanking my parents for taking care of Alvaro the last time she saw them. She knew he was in good hands, and she was deeply grateful for it. I vividly remember the tears in her eyes, the hug she and my mom exchanged, so sweetly sincere and heartfelt for both of them.
In 2017, Irene and Risto made their last trip to Nebraska to visit their children. Their visits beforehand had been for other people’s big events: our wedding, a Masonic event for Risto, Bea’s 40th birthday. But on that final trip, we celebrated her for once, spending her 80th birthday together. After a beautiful, fancy dinner downtown, we went to our house for cake and tea. Irene was surprised, I think, by the fuss, the flowers and the balloons, but she allowed us to celebrate everything we loved about her.
My favorite picture of Irene is below, taken that evening, capturing her spirit completely. It’s the image I hold in my heart when I think of her, the delight on her face, the pure joy of having everything she wanted in that moment: her husband, her children, their partners, cake and celebration. I don’t know what she wished for when she blew out the candles, but I suspect it was for her children to remain happy and well. That’s all she ever wanted.
It’s infusion day again. Dr. Z allowed me to keep to the schedule, something I’m grateful for. I feel okay about wiping my immune system out anew even in the age of coronavirus because my college is offering all English classes remotely in the fall, so I don’t have to worry about going to campus. Teaching over Zoom is more difficult, less fulfilling, but it keeps us all safe. Unfortunately, it’s also going to keep me from teaching for the foreseeable future in one of my favorite places: prison. From December to February this year, I was able to teach a class to women incarcerated at the Community Corrections Center-Lincoln, a minimum-security facility designed to help people transition from prison back to the community.
Teaching in a correctional facility is teaching in a different world. It begins in the parking lot, where I check my e-mail and messages one last time before securing my phone in the console. I arrive early just in case there are any issues with the travel from Omaha to Lincoln, so I sit in the lot and listen to a podcast until it is time to enter. I laugh when I see the silver SUV parked a few spaces away. In it, a man and woman are often making out, filling their final minutes before the woman is required to report back to the facility at 3:30. Her boyfriend takes her to and from work, and they seem to make the most of that time together. After she has been checked in and returned to the unit one day, the corporal whispers to me, “That one doesn’t like me very much. I found her with an illegal cell phone and reported her.” I’m not sure how I’m supposed to respond, so I just say that I fear accidentally bringing my own phone in one day. “Not today, though, right?” he asks, eyeing my bag. I tell him no, definitely not today.
The hallway to get to the front desk looks deceptively plain at first. But I pass the lockers where incarcerated women can lock up approved items that are not allowed on the unit, tools for their jobs, for example, and then pass the visiting room that doubles as a room for all other purposes, including intake, classes and meetings. Across the hall is a holding cell, the final place where women who break the rules significantly enough are placed until their transfer back to the only other women’s prison in the state, the “real prison” in York, located several hours from most of their homes in Omaha and Lincoln. More often than not, the occupants of that holding cell are men as it serves as an overflow area for the much larger men’s side of community corrections on the same campus. There’s a window in the door, but it’s too high up to see in or out. Next to the holding cell is a series of framed posters with inspirational quotes. Featured are Alice Walker, Maya Angelou and Helen Keller. But there are also posters reminding visitors that “It is against the law for any person to give an unauthorized article to an inmate,” and “It is against the law to introduce an unauthorized cellphone/electronic device into an NDCS facility.” Another sign proclaims in a weird cursive font, one you might find on a sympathy card, “You’re Not Alone,” followed by a number for the NDCS suicide hotline and a reminder that “inmates must dial a zero (0) before Hotline number.” There are framed Prison Rape Elimination Act (PREA) posters in English and Spanish declaring a “ZERO TOLERANCE policy regarding prison rape, sexual misconduct and victimization. DON’T SUFFER IN SILENCE!” Pictured are distraught-looking women, many with their faces in their hands.
At the front desk, I check in with a corporal so my students can be called to class. There are usually two corporals on duty, and they are almost always incredibly young, so fresh-faced it hurts to look at them. Sometimes they are busy flirting with each other, looking inconvenienced when interrupted. Some are friendly, others pointedly not so. There is a large red button on the wall, kind of like the Staples Easy button, and staff and volunteers are supposed to hit it to see if they are on the hook to be randomly searched. Sometimes I am asked to press it, but more often I am not. Fortunately, I always land on green, so I don’t have to watch as my belongings are rummaged through before receiving a pat-down. Outside of community correctional facilities, the search and pat-down are not optional.
I usually teach in the visiting room, which is outside the unit, but there are a few nights when that room is needed for something else, so I teach in the tiny computer room that is inside the unit. I was excited to see computers at first, but I learned quickly that they were little more than props. The women weren’t authorized to use them; they weren’t even configured for use at all. In both spaces, there were instructor computers I couldn’t log on to, nice TVs I couldn’t connect to for projection. I knew ahead of time that internet access was out of the question, but I’d hoped we could watch a few videos, that I could project student work. So much of teaching in a correctional facility is about adjusting, including one night when a surprise fire drill and emergency lockdown count are announced, forcing my students back to their rooms, taking almost two hours of our class time away. Another night, we learn class is going to be cut short for a mandatory smoking cessation class. One student is angry because she has already taken the class voluntarily, though she’s not ready to give up cigarettes, and another is furious because she has never smoked in her life. “Why do I need to sit through this?” she asks, rolling her eyes.
Everything revolves around the count, which happens at 4. I’m allowed to submit an “out count” sheet to the corporal so the women don’t have to return to the unit. Because our class begins at 3:30, we are only just getting underway when I have to pause and turn my attention to the form. For the first few weeks, I am told about all of my mistakes by irritated corporals: writing in the wrong color, putting the women’s first names before their last names, forgetting to write the time as 1600 instead of 4 p.m., placing my signature on the wrong line. We get back on track shortly after four, but dinner follows count, so my students are hungry and watching the clock. Dinner is supposed to begin at 5, but there are days when they aren’t called until 5:30 or 5:45, when “Chow!” is broadcast over the intercom. The students grumble about certain corporals and their power trips, claiming that they drag count out on purpose. I don’t comment, but I do notice how different the corporals are after 5, when the unit managers and the warden are no longer in the building. One night when I’m teaching inside the unit, we hear a few of the women singing Happy Birthday to another in the commons area outside our door. They are halfway through before being admonished by a stern corporal over the intercom: “Be quiet!” she says. “You ladies need to keep it down.” The women lower their voices, but not enough for the corporal. Even though she’s only 15 feet away from them at the Central Control desk, she takes to the intercom again: “Ladies!” she says shortly. “Keep it down, or you’re going to your rooms for the rest of the night.” My students exchange weary looks before returning to their essays.
There is a camera in the ceiling, a reminder of constant observation. I try to sit with my back to it most of the time so it feels more like a normal classroom.
The intercom goes off a lot during class time, and usually I’m able to tune it out. But there are moments when it is difficult. One night, a corporal threatens to send a group of women “Back to York,” referring to the women’s state prison. I doubt he would do such a thing if the higher-ups were in the building. Instead of simply announcing that the yard is closing for the night, another corporal seems to relish in saying, “MY YARD is CLOSED. Repeat, MY yard is closed.” Sometimes the women groan; not having had a heads up, they know they’ve missed their last chance for a cigarette until the next day. Smoking is one small pleasure the women have, and many indulge, even some who quit before being incarcerated. They have to take their freedom where they can, and those cigarettes are small reminders of their humanity.
Besides these differences, teaching in prison is much like teaching anywhere else. A few people joke with me about having a “captive audience,” but although incarcerated people tend to be more engaged in material than traditional students, persistence is still an issue. Lack of confidence is something I have to push back on from the beginning, but I’m used to that from teaching developmental writing courses. It is best addressed through a healthy blend of challenge and encouragement with strong support along the way.
Accountability is also higher in prison settings. When one student says she is planning to quit, her classmates call her out: “What are you going to do? Sit on the unit playing cards and wasting your time?” The student says she plans to do just that. Another night, a student struggles with her essay when we are reviewing each other’s work. She complains that it is too hard, and another student replies bluntly: “Maybe if you wrote your own story instead of asking other people to tell you theirs it would be better. This isn’t your work. That’s the problem, and you know it.” The author grins sheepishly and asks for help starting over again.
It is refreshing to teach in the absence of cell phones, but there are other distractions that get in the way. A class leader arrives one afternoon visibly frustrated, complaining about being written up for a watch she was wearing. Watches are allowed as long as they don’t have internet capabilities, but she says she was accused of looking too flashy. “What does that even mean?” she asks. Unable to concentrate on her work, she leaves class early. The next week, however, she is back and determined again. “I need to focus on what I can change,” she says. “And I can’t change what’s wrong in here.”
In the visiting room, where we meet most often, I often open the shades to let in natural light as soon as I arrive. There is a playset right in front of the window, the vibrant blue, yellow and green a stark contrast to a sea of gray, and I feel sad whenever I look at it, thinking of the children who visit their mothers here. The visiting room contains other things for them, too: two high chairs, brightly colored small plastic chairs, neatly organized crayons and markers, a cabinet that says there are board games inside. In early December, a small Christmas tree is placed in the corner with turquoise and silver decorations, the simplicity of it impersonal, less than festive. On the wall, there are large white sheets of paper from the Moral Reconation Therapy (MRT) class, written on in bright markers. One of them says, “I want to live. . .” and the women have each written in a different color to finish the idea. Among the answers are:
In another state
With my children
All of them break my heart.
Past the playset is the parking lot, and beyond that is an access road where large groups of men file by from work to their side of the building, two by two back to the ark. The bus stop is about a mile away, and they have to walk the distance each day, no matter the weather. Across the road is a large cornfield, fallow in winter, and the bare trees behind it look drab until the sun begins to set; then they come alive, glowing orange and red against the gray sky.
Above the trees, there is a view of the Nebraska State Capitol, its golden dome shining in the distance. “I never noticed that before,” one of my students says one evening when I point it out. “So that’s where they make all the bad decisions that affect us.” I hide a smile but pivot to talking about how overcrowding in NDCS is a hot topic with senators at the time; it’s something the students bring up often in class. Another student says it’s funny that it’s the only building we can see above the trees, the rest of the city hidden from view, and I laugh, a fact learned long ago suddenly returning to me, that municipal code has strict building height restrictions in the area so the capitol will always be the tallest building in Lincoln. A student snickers about men and their insecurity as the other women nod in agreement.
By the end of class, the trees in the distance are dreary brown again as the sun dips below the horizon, the fluorescent lighting outside garish as night falls. All is quiet, still, an appropriate moment marking the passing of another day in the students’ sentences, freedom closer for some than for others but still impossibly far away. We wish each other well and leave the classroom. They go left to return to the unit, while I turn right, heading out into the cold air, invigorated, ready to return home.
I’ve written before about how it’s difficult for me to recognize problems as I’m going through them. And although MS is the dark cloud constantly above me, I want to make sure that I don’t blame it for everything that goes wrong in my life, making it easier for the sneaky bugger to get past me.
I’ve had Achilles tendon issues for years. My left one was so bad right before my spinal tap in 2018 that I could only walk as if I had a peg leg on that side. But it was placed on the “handle later” list because, well, I had a spinal tap to get through. And an official diagnosis, which was promptly followed by a debilitating relapse on the other side of my body that left me unable to move. Because I had to spend weeks mostly off of my feet, the tendon went back to manageable pain.
I’ve mostly worked around the aching since. When it hurts too badly, I take a few days off from going for a walk. But earlier this summer, no amount of rest was helping. Reduced to hobbling, it was time to see the doctor, past time really, but that’s just my way. My PCP prescribed a strong anti-inflammatory, meloxicam, which allowed me to get back to exercising, and she referred me to an orthopedic surgeon. The ortho diagnosed me with Achilles tendinitis and plantar fasciitis, sending me for custom orthotic inserts and ordering physical therapy.
I’d never had physical therapy before and was unsure about what to expect five weeks ago when I started. The therapist who evaluated me, J, was friendly and reassuring. She asked questions and took measurements before doing a deep tissue massage. “Your calves are insanely tight!” she exclaimed as she ran her hands over what felt like golf balls in my muscles. That’s interesting, I said, but I’m here because of my tendons, not my calves. “No,” J said. “Your calves are the problem here—the muscles are so contracted that the tendons are being pulled up.”
I’ve had twelve sessions since that initial one, and although I’m working hard with the therapists and on my own at home, stretching like it’s my religion, my calves remain hopelessly tight. I went to therapy two days in a row last week, seeing J both times, and all the work she did massaging the knots out of my calves the day before was undone less than 24 hours later. “It’s like you weren’t even here yesterday,” she murmured. That was discouraging because I was doing everything they asked of me and more. I thought things were getting better, and in some ways they were: my balance was greatly improved, my feet had measurably better range of motion. On Sunday, I felt like I was ready to stop taking the anti-inflammatory and managed for two days through the resulting pain, only to wake up on Tuesday feeling like someone had beaten my tendons with a baseball bat. I immediately returned to the meloxicam and was finally frustrated enough to ask if MS might have something to do with what was happening. J said it definitely could, and when I worked with a different therapist later that week, T, she pushed against my foot and pointed out the resulting involuntary tremor. “This makes me think there’s a neurological element to what’s going on here,” she said, which got me thinking more. They know I have MS there, of course, but I don’t think any of the therapists I’ve worked with knows much about it.
Could spasticity from MS be the real problem? Just like I didn’t know for sure that I was having a relapse even though I was in a major one a few years ago because it was all new to me, I didn’t think about muscle spasticity playing a part until I was well into my journey with tendinitis. I sent a message to Dr. Z, who knew I’d previously had some issues with cramping in my left leg and that I was seeking help for my aching tendons. Her nurse called the next day and asked a series of questions. “Yes,” she said. “It sounds like spasticity, and let me check your medication list. . . oh, you’re not on baclofen yet?” When I said that I was not, she said that would be the next step.
Baclofen is a muscle relaxer, one that a majority of people in my MS groups seem to be on. I remember reading posts about spasticity and being grateful it hadn’t happened to me, still completely in the dark that it was happening to me. In the weeks to come, I hope the baclofen will work enough for me to quit the meloxicam as I continue with physical therapy and my own program at home.
So now I can add my baclofen badge to my imaginary MS sash, one inspired by the Girl Scouts. Though I desperately wanted to join when I was a kid, I was never in Girl Scouts because we lived too far from the Air Force Base to be shuttled back and forth for activities. I envied my classmates in their uniforms, their colorful insignia proudly displayed on their green vests. As an adult, I don’t want to keep adding MS milestones to mine, but they keep coming anyway.
I was relieved at first to have the puzzle pieces lining up after talking with my MS nurse about spasticity. Identifying the source of the problem is the first step to getting past it, right? But as I tried to fall asleep last night, I couldn’t help but feel sad about what this all means. Most people with MS who start baclofen end up taking it or escalating to something stronger for the rest of their lives. To be among them and taking yet another medication felt like failure.
Although I’m slow on the uptake, I get through despondency more quickly. This morning, I’m focused once more on all that I can do. I’ve done my stretches, my heel raises, my work on the balance board. Soon I’ll head to the community center to walk on the track. Although the views are uninspiring and it feels more like a chore walking inside, each lap is one I’m able to complete thanks to the help of medications, laps I wasn’t able to do a few weeks ago. Because MS will continue coming at me in unexpected ways, I’ll continue doing what I can in the realm of prevention, prepared to pivot when that is not enough.
* * * * *
While you’re here: I’ll be sharing a post about teaching in prison in the weeks to come. Please, please, please help the incredible re-entry program at my college win an additional $125,000 grant by voting for Metropolitan Community College in the Google Impact challenge before July 30th: https://impactchallenge.withgoogle.com/nebraska2019. The program has changed so many lives for the better, including mine.
I had an MRI of my brain a few weeks ago that showed no new lesions. This means I’ve gone almost two years—eight seasons, four solstices—with no evidence of disease progression that can be seen on scans.
If only that meant that nothing was changing in my body. Out of the blue on Sunday while I was just sitting and watching TV, the left side of my body began tingling before eventually going numb. It started in my toes and in my hand before slowly spreading from there, creeping like spilled ink on paper. By the time I went to bed, it reached my elbow and halfway to my knee. Although it had receded a bit by the next morning, I’m still dealing with a numb hand and foot five days later. The hand is hopelessly dropping everything, the foot dragging on my walks when I stop paying attention.
I deal with tingling and numbness often. Normally it comes and goes, sometimes for no reason at all, but I’ve learned to expect it when I’m tired, overheated, sick or stressed. That kind of numbness is irritating but not debilitating. What happened on Sunday was different, which makes me believe it was my first relapse since beginning Ocrevus. To definitively be called a relapse, symptoms have to last more than 24 hours and occur at least 30 days from the start of any prior relapse. Other possible explanations such as aggravation of old symptoms due to infection or overheating must be ruled out. Although a relapse can involve worsening of previous exacerbations (for example, if the optic neuritis in my left eye returns), usually it presents new symptoms. Instead of my usual tingling and numbness, on Sunday it felt more like pieces of my body were turning to stone as the numbness crawled upward, taking over more and more of the affected limbs.
I find it difficult to adequately communicate what I’m feeling because of MS; it’s easier to imagine discomfort we can relate to, and although I thought I had a good understanding of it before I was diagnosed, I don’t think anyone can fully fathom the effects of MS without going through them personally. This is true of many experiences (childbirth and chemotherapy spring to mind), but others are easier for the imagination to grasp. For example, I remember feeling deeply for individuals who’d had amputations talking about feeling pain in their lost limbs, pain that was inexplicably excruciating given that it was coming from the empty spaces where parts of their bodies used to be. The concept was something I could comprehend without experiencing it myself, my first glimmer of an idea I’ve since come to understand well: sometimes the brain and spinal cord mix up signals; in cases of amputation, they keep reaching out for and receiving messages from something that is no longer there. Crossed signals because of MS cause the immune system to aggressively attack a phantom invader, turning on the body it is supposed to protect. People in both of these groups are forever haunted by ghosts of what their bodies once were and never will be again.
My grandfather had his left leg amputated before I was born. I only knew him with one pant leg pinned up, sitting in a chair in the kitchen, smoking and drinking coffee, teasing us with candy, his crutches close by. To get to the bathroom, I had to go through my grandparents’ bedroom, and I usually waited until I couldn’t possibly hold it anymore because it meant passing the leg. The prosthetic leg. It was propped up in the closet, a black sock and a black dress shoe left on it from the last time it had been worn, probably for a special occasion. I never saw him wearing it except in a picture that still hangs in my mother’s home: it is my Uncle Kevin’s wedding, all ten children, Nana and Grandpa captured at once, a rare moment in a family of their size. In the photo, the light reflects off of Grandpa’s prosthesis where the hem of his pants has lifted above the sock. When I was younger, I wondered why he didn’t wear his leg every day instead of hopping around or using his crutches, not yet understanding that the plastic limb was more ornamental than functional. Why present the illusion of a leg where one did not exist? Why wear a prosthesis that did not serve to help him move about? I admire his choice now that I am better able to appreciate it.
My recent relapse made it feel like parts of my limbs were being aggressively erased, bringing to mind the smudgy marks left behind by the erasers of my childhood. Erasing made my writing or drawing mistake go away but left in its place an ugly gray smear, shavings clinging to the page. Because of MS, the sensation in my feet and hands is wiped away just like that, white noise filling the voids, static crackling.
I had my six-month check-in with Dr. Z on Wednesday. We met over Zoom, and she joked about how we have all become “zoombies” from spending too much time on it. We discussed my episode on Sunday, and although she was not convinced that it was a relapse, she also doesn’t live in this body. I can feel the difference between the daily nuisances MS causes and when it is attacking me anew, but how we label it doesn’t really change things. The truth is that my MS is progressing. I’m fortunate that it has slowed down because of treatment, but there’s no stopping it. My next infusion is due in early August, and because of the coronavirus, Dr. Z wants me to put it off unless labs show that my B cells are regenerating. I’d rather proceed as scheduled, especially after this latest exacerbation, but we’ll deal with it when the time comes. Unless I have additional problems, she’ll scan my spine in November or December to see if there are new lesions before we meet again, perhaps a fresh white blip responsible for what I’m experiencing now.
When I talk about numbness with people who do not have MS, the closest they can come to understanding it is the idea of a foot falling asleep. And yes, that’s a start. But when you can’t wake it up, can’t shake it through the pins and needles to get it back to normal, numbness becomes something else. For me, it usually begins with tingling and sometimes burning before the numbness slithers in. Then all I can focus on is not feeling the affected parts of my body, the working pieces falling away from attention. Feeling and not feeling. Feeling more because I’m not feeling.
This happens to me a lot, though not as badly as it did this week. Because there’s nothing to be done about it, I keep most of it to myself, especially with Alvaro. When things are bad enough that I do share, I see the panic immediately in his eyes, and I know he’s not listening, not really hearing me. To talk about it speaks my MS back into existence, and the rest of the time he likes to pretend it isn’t there. That’s how he copes. My disease is the leg propped up in the corner of the room, something better hurried past and seldom acknowledged.
In some ways, that is good because it doesn’t allow me to dwell. But I realized this week that Alvaro isn’t the only one in this house who has been in denial about my MS. Going two years without a relapse had me so hopeful that another would never come or would at least be several years away, lulling me into a false sense of security. Sunday pushed me out of that, forcing me to recognize that much more is going on inside me than MRIs can account for.
As bleak as that sounds, as difficult as it is to admit (and to type with this clumsy hand), today was beautiful. I began with a walk by the water at sunrise, the park quiet and peaceful. Then I stopped for strong coffee before working over Zoom with some of my favorite colleagues. Later, my mom popped by for tea, and her visit turned into a spontaneous dinner together when we sent Alvaro out to pick up food from a favorite restaurant. Our meal bestowed upon us the last whispers of spring: risotto with ramps and morel mushrooms, green salad with radishes and carrots, red wine. We talked and laughed together, a celebration of nothing in particular and everything at once.
Tomorrow is the summer solstice, the longest day of the year in this hemisphere as it tilts maximally toward the sun. Solstice is Latin for “sun standing still,” and the summer solstice has been significant for civilizations throughout human history, probably because the season that follows is the most abundant. The beauty of our two solstices is in their balance; although the winter solstice plunges us into darkness, it also promises that the light will return, especially if we position ourselves to receive it.
It’s there, more than usual: the looming dread. Coronavirus news gets worse each day, hitting ever closer to home. The trepidation about it follows me into my sleep, stays with me in frenetic dreams.
I woke at 5 this morning, trying all of my tricks to get back to sleep in the hour that followed. None of them worked, so I reluctantly flung off the covers and got ready to go for a walk.
Sadly, walking hasn’t brought me much relief lately. So many more people than usual crowd the park to get their exercise, weekends especially bad as children careen dangerously around the water on their bikes or roller blades, whole families blocking the walkways as they meander, oblivious. Maintaining a six-foot distance is impossible. They don’t belong in this space—my space— and they certainly don’t respect it. Litter has become a noticeable issue even though there are garbage cans placed every quarter mile. Careless owners allow their dogs to run off leash, out of their control. Across the street, 16 young men play football together, ignoring the calls from our state and county to avoid such large groupings and personal contact. I wonder when the foolishness of their gathering will catch up to them, how high a price they or someone they love is going to pay for it.
The path to the river is still blocked off with cones and caution tape because it leads to a camping area that never recovered after years of flooding shut it down, perhaps for good. I move around the barricade to get away from the masses. Some of the interlopers have found their way past it, too, but there aren’t as many where the grass grows untamed around long unused, mud-covered playsets, rusting sorrowfully out of reach. Giant sinkholes threaten to swallow unsupervised children. There is wild beauty in the devastation, amid the toppled trees, the vine-covered, sagging benches, the crumbling walkways. But there is also danger for a woman with MS as she navigates uneven, cracked concrete on the debris-covered road.
This morning, I wanted to return to my usual routine of walking on the predictable, level trails around the lake. It was chilly, splendidly cool, as I set out. I was the only person in the park for the first time in a long time, and the sun was just beginning to rise.
The geese were thick in and around the water. They will be gone soon, relocating north as the weather warms up. Although they look graceful gliding in the water, that is where their elegance ends. There’s the awful honking, a ridiculous cacophony as they plod awkwardly over the muddy ground. When I approach, their squawking increases before they take flight, heavy-winged, looking as though they can barely stay aloft. Once I’ve moved far enough away, they return with a gentle, fluttering splash, one I hear because of leaving my headphones behind.
It was the kind of quiet I needed. That sounds strange, I know, given how much time we’re spending alone these days. But for a little while, I hushed my thoughts, listening only to my body as it moved, noticing how good it felt to stretch my legs despite an aching tendon and the inevitable numbness waiting in the wings. The silence was punctuated by the rat-tat-tat-tat of busy woodpeckers, the whooshing river water audible through the woods. I fell into an easy cadence, my eyes on the trees, the sky beyond sharply blue and clear.
Just before reaching my car, I spotted a cheerful, yellow-bellied meadowlark in the brush. I paused, standing still so it wouldn’t immediately fly away, appreciating its sweet song, a reminder of how crucial it is in distressing times to find moments of joy, however fleeting.
Hello, friends. I hope you’ve been taking good care of yourselves during this pandemic.
The past ten days have been rough. At this time last week, I was still frantically transforming my course materials for an e-learning platform that needed to be ready to roll the next day. And my focus since has been on helping my students make the transition, clumsy as it has been at times.
But in between, I’ve been cooking and cleaning. Walking to ward off cabin fever and have some time for myself. Playing with and petting my dogs, such good company as I work from home. We learned a few weeks ago that Gus is in the initial stages of heart failure with fluid in his lungs, so we’re giving him expensive medications that have him back to his usual self. He has more meals to conquer, that one.
I began teaching college English courses in 2001 as a graduate teaching assistant. In some ways, I was ready for it; in others, I was naively overconfident. I’d only just turned 22 and had students in one class who were old enough to be my parents, something I hadn’t expected. They were a good check on all the things I thought I knew about leading a class, so I learned a lot in the first few days.
And then September 11th happened. As is true for most people, I remember that day and what followed vividly. I didn’t teach on Tuesdays, but going to teach the next day, I had no idea what to do. No idea what to say. It was my first lesson in how an instructor’s silence can make way for students to guide themselves. They led a thoughtful discussion, talking about what they could do for each other, for their families, for the community. It was beautiful.
Those moments when we know that nothing will be the same again stay with us; there’s a palpable shifting in the soul. Whether shared with a nation or the world, like the attacks on September 11th, or whether more personal, like a loss or a life-changing diagnosis, we know that we are “changed, changed utterly” as Yeats says.
In the first edition of the New Yorker published after the attacks, authors wrote small pieces about their thoughts and experiences. I remember the black cover of the magazine, how appropriate it was, and then, as it caught the light from the kitchen window, I saw that it wasn’t simply a black cover: it was black on black, the silhouette of the Twin Towers barely visible, a spire rising into the header. I sat with that for a long time before opening the magazine to read. In his contribution, Jonathan Franzen talked about a new world following the attacks and the need to “reassert the ordinary, the trivial, and even the ridiculous in the face of instability and dread: to mourn the dead and then try to awaken to our small humanities and our pleasurable daily nothing-much.”
That phrase, “our pleasurable daily nothing-much,” has stayed with me ever since, both when I’m keenly aware of how fortunate I am to be enjoying the small things that make me happy, and when I’m missing them in times of crisis. One such time stands out: after my spinal tap and a major relapse that left me unable to move well, I most missed getting out for my daily walk. Practically, what I should have been missing most was the ability to simply move around my house without stumbling and falling, but what I truly longed for was the relief of walking by the water. I was trapped in my body, which was trapped in my home, where I was left alone with my fears, my despair. Paralyzed by depression, all I could think about was what I had lost, how much more MS was going to take from me.
People who aren’t feeling that way yet because of this pandemic will be feeling something like it soon. There is so much loss resulting from avoiding contact with others: lost social activities, office collaborations, big events like graduations and weddings and, sadly, funerals. Then there’s the problem of having too much time with the people you live with, people you love, yes, but people who are endlessly annoying because of their boredom or their panic. We are not our best selves when we feel cornered.
I am taking isolation seriously, though I do leave the house every day for a walk. Taking that time for myself has never been more important than this week. There were so many times I felt overwhelmed, my job three times more difficult than ever before. Besides teaching classes online that we have never offered online for good reason, there have been Zoom meetings and many panicked calls from students. By Thursday, I was exhausted, zapped. Before going to my home office for work, I needed to get outside, so I took my troubles to the river.
I’m worried about so much right now. Avoiding contracting COVID-19 is top of the list, of course, given my immunosuppression. I’m fortunate that Alvaro is able to do all of our shopping, but although he is unlikely to develop complications if he picks up this novel coronavirus, he can certainly bring it home to me. We’ve had countless conflicts this week about how careless he is about spreading germs; sadly, I think he won’t understand until it is too late, so I have to protect myself as best I can. I’m also worried about whether I’ll be able to get my next infusion in August. So many people in my Ocrevus Facebook group are being told not to get their infusions until this passes, which could be more than a year from now. I’d rather take the risk of keeping my system suppressed than risk relapse, but that may not be my choice to make when the time comes. I’m worried about people who don’t have job security, about beloved small businesses that may not make it through, about health care workers sure to burn out, systems that will be overburdened.
These thoughts were heavy in my mind as I set out on the trail. The afternoon before, my walking spot was overrun by families with their kids, everyone brought back to nature with nothing else to do. But this morning was gray and rainy, so I had the place back to myself. The fog hovered over the water, a smoldering, rolling haze, offering immediate calm, and as is often the case for me, clarity.
When we cannot take for granted the pleasurable daily nothing-much, we must create it, finding it in small moments: in walks, in cups of tea, in pets, in good books and movies, in comforting meals, in calls to family and friends. In caring for each other, in caring for ourselves.
At work yesterday, we were updated on COVID-19 response plans. Some of the recommendations were common sense, including frequently washing hands, disinfecting “high touch” areas like shared computers and lab areas, staying home if we are ill, asking students to go home if they seem unwell. Masks and gloves can be picked up from specific areas for students who don’t want to go home, but the supply is limited because everyone in the world is trying to prepare for what’s to come, and hospitals have to be prioritized. Faculty are supposed to report our own illnesses and our students’ illnesses to the college representative so confirmed coronavirus cases can be tracked and hopefully contained.
People who know about my MS and B cell-depleting treatment have asked with great concern lately about how the coronavirus could affect me. I’ve been wondering that, too, and there is good reason to worry.
But serious concern about COVID-19 hasn’t taken across the country yet. One reason for that is our tendency to exaggerate the danger of other contagious illnesses during an outbreak. Such outbreaks make for great headlines: think H1N1 “swine flu” in 2009, Ebola in 2014. SARS in 2003 and MERS in 2012. And when these outbreaks are bad, they are very, very bad, and stories about them make for good ratings as we view other people’s tragedies from a distance, shaking our heads even as we feel sheltered from it ourselves.
All of those outbreaks were serious and deadly, but they weren’t as widespread as this novel coronavirus will be. We want to believe that this time will be like the others, that it’s going to hurt other people, not us and the people we love. Just like with prior outbreaks, people who insist on being above it all immediately made comparisons between COVID-19 and “real concerns,” dismissing the panic by saying that the flu kills more people, that the severity is exaggerated and never as bad as predicted, that it’s nothing more than cold-like symptoms for most people to suffer through. It’s the “You’re more likely to die from ______________” crowd, and it does nothing to calm people’s fear; worse, it encourages self-righteous ignorance. It also dismisses the experiences of people affected, including grieving families whose numbers are certain to grow as the virus spreads.
This pandemic feels different from others many ways, especially in how easily transmissible the virus seems to be. I’m more concerned, too, because of my body’s reduced ability to fight such an illness. It doesn’t help that people in the highest positions in government are dangerously politicizing the response and spreading disinformation. There is much to criticize about China’s response to the initial outbreak, but once containment became a priority, extreme measures were implemented toward that end that seem to be working. Here, the president believes more in his own hunches than scientific fact, and that should worry all of us, even his staunchest supporters.
Health officials point out that although none of us has immunity to COVID-19, many people who contract the virus recover because their immune systems find ways to effectively combat it. But people with compromised immune systems don’t have the same fighting chance that healthy people do. People with normal immune systems have a fire department at the ready; meanwhile, we immunosuppressed people are facing the flames with a garden hose.
If you don’t live in Nebraska, you may have heard of us on the news lately because of the Nebraska Biocontainment Unit, called back into service after being nationally recognized for its role in helping three patients with Ebola in 2014. The unit has 10 beds, its own ventilation system and an expertly trained staff. UNMC/Nebraska Medicine accepted passengers from the Diamond Princess in their 20-bed quarantine unit as well, and some have been cleared and released this week. Today, seven people remain under quarantine, and one person remains in the biocontainment unit.
There aren’t enough facilities like this in the country, and I fear that what is happening in Washington is just a preview of what lies ahead. I teared up listening to The Daily podcast yesterday. In the episode (also in this New York Timesstory), a woman talked about being separated from her mother, a resident in the locked-down Life Care Center in Seattle, where eight people have died because of COVID-19. She described dropping off a care package and walking around the outside of the building to her mother’s window to at least be able to see her face, letting her know that she was near. She and family members of other residents worry about their loved ones passing without being there to comfort them, a thought so heartbreaking it stayed with me all day.
So I’m definitely worried about elderly people in nursing homes and sick people in hospitals. But I’m worried about other institutionalized people, too: those in prisons, for example, a concern some incarcerated women voiced during our final class together, where one described the population as “sitting ducks waiting for coronavirus to hit.” A virus like COVID-19 could thrive in their shared close quarters, putting them and the staff at risk.
Because of my suppressed immune system, it is a brand new experience to include myself among those most at risk. But MS has taught me a lot about surrendering to the things I cannot change and working on the things I can. I’m not panic shopping for masks and hand sanitizer—there’s none to be had anyway. Instead, I’ll do all of the things the experts recommend, especially increasing my already obsessive hand-washing routines. And I’ll give my impaired immune system lots of pep talks. Said system didn’t do a great job initially with C. diff a few months ago, but it eventually got there, and hopefully it will step up if called upon in the weeks and months ahead.
Even if you’re not worried for yourself, please think about the vulnerable people around you and do your part in practicing good hygiene for prevention, staying informed about how to be part of the solution. Joking about scary things makes us feel better, and humor will help see us through this, but mocking people’s fear while simultaneously stoking it (I’m looking at you and your gas mask, Matt Gaetz) and spreading disinformation, contradicting scientific findings (hello, current administration), is going to make this worse, not better. Let’s take COVID-19 seriously without giving in to panic, look out for one another, and not wait for a personal connection to start caring about preparation and response.
It’s infusion day again. Alvaro stayed until I was all hooked up and then went home to wash the car, inexplicably his favorite activity. In what has become our day-before-infusion tradition, my mom and I went out to dinner last night, this time at the restaurant run by the students in the culinary program at the college. I tried gnudi for the first time and hated it, but that disappointment was made up for by a gorgeous deconstructed grapefruit meringue pie. Perhaps I should have skipped the wine and coffee, though, as my veins weren’t very cooperative this morning, two tries necessary before I was on my way.
This is the first time since beginning Ocrevus that my B cells have started to regenerate between infusions. My lab work showed that a couple of weeks ago, and I wonder if that is why I’ve been feeling off for the past month. Some people in my Ocrevus Facebook group call this “crap gap,” referring to a general feeling of blah while waiting for their next infusion. It hasn’t been bad enough to keep me from my day-to-day activities, but I’m endlessly tired and feeling physical changes. For example, I’m dropping everything lately: my phone, pens, remote controls, spoons, keys. I’ve been numb and tingly, especially in my right hand (hence dropping all the things), and while grading papers on Sunday, I lost feeling several times in that hand, which made giving feedback that much more challenging. I’m also experiencing noticeable changes in my thinking and recall, what MS people call “cog fog.” We really love our rhyming descriptions in MS world. I’ve been mixing up words, losing them while speaking, and I’m making countless mistakes while writing. This is especially frustrating when I’m teaching as what’s in my head comes out as a jumbled mess when I’m writing on the board. When I move to correct it, I drop the marker and have to start again. I wonder what my students think, hopefully just that I’m terribly clumsy.
I’m not the only one in our household who has been feeling under the weather lately. Our shih tzu, Gus, had to go to the vet last week after a few incidents of incontinence over the past couple of months. It has been terrifying to see: he cries and yelps in anguish as he lies helplessly on his bed, paralyzed, wetting it. He bounces back afterwards, but when it happened for a third and fourth time, I began to worry about his kidneys. The blood work showed elevated red blood cells, indicative of a problem, and very low white blood cells, which he would need to fight whatever is going on. More worrisome, his heart murmur has gone from a 2 to a 4 (6 is the worst), so once we figure out what is going on with his kidneys, we have heart failure to think about. Poor creature. He’s on antibiotics right now, but they’re unlikely to change things because if it were a bladder infection, it would be happening more consistently.
We adopted Gus just over nine years ago. He was taken in by a local rescue because the shelter where he went after his puppy mill days was going to put him down. Another family adopted him before we did and then gave him back. They were probably hoping for a playful, active puppy, and Gus is not that. He is uninterested in toys or physical activity of any kind. When we visit my parents, he has to be walked to go to the bathroom, and he’ll plant himself stubbornly when he feels like he has moved enough, thank you. Although he only weighs 20 pounds, it’s a dense 20 that feels more like 60 most of the time. His main love in life is food, his all-consuming passion. Once, he had 17 teeth pulled out, and our vet said he might not want to eat for a day or two, and I laughed and laughed. Still dazed and woozy from sedation, he ran straight to his bowl when we got home, expecting a double dose since he’d missed breakfast.
We adopted him on December 23rd. His “birthday” being on Festivus could not have been more appropriate—he’s the Costanza of dogs. Originally, we named him Pepper. It didn’t fit, though, as my brother Patrick pointed out when he came to see him on Christmas Eve. “You’re not a Pepper,” he said. “You’re a Gloomy Gus.” And damn if he wasn’t right. Gustivus, Gusito, Colonel Gustard, DisGUSting, and Gussy are other names he goes by. Also, Creature, Tank, Funky Monkey, Reek. My goodness, does he smell bad sometimes. Most of the time.
About a year ago, I noticed that Gus was starting to lose his hearing. He didn’t run at the sound of a rustling bag being opened, didn’t come when called, even for a treat. He would wake up from a dead sleep startled and disoriented, so we’ve learned to walk more gingerly around him, to softly pet him to get his attention.
Gus is pushy and demanding, honestly kind of a jerk most of the time. If he feels like his meals aren’t coming quickly enough, he’ll hurl his body around the house, flinging himself into walls and doors and furniture, huffing to express his outrage. When I come home from work, he paces at the top of the stairs, barking loudly and shuffling from side to side, trying to look menacing, troll-like. He jumps in front of us when we’re walking, tripping us up, cutting us off to get to his food, something that has become exponentially more annoying since my diagnosis. If I don’t pick up the food left in my other dog’s bowl, Gus will wait until I start running the hairdryer or leave for work to run over and get it for himself. He has never once left a morsel in his own bowl; in fact, when he’s finished eating, he moves water from the other bowl into his food bowl to clean it, making sure there is no trace of flavor left.
His favorite things are cuddling with Alvaro or my dad or my brother (a real man’s man, that one), sleeping in the chair he knows he’s not supposed to be on when he thinks no one is looking, and, of course, feeding. That’s the extent of his programming. Pancake day is his favorite. He knows when he sees the box of Bisquick and a bowl and a whisk that he has extra snacks coming his way. He gets the first batch of small pancakes and a large one at the end made from leftover batter.
Although we make fun of him a lot, people love Gus because he’s such an unapologetic lump. One of my favorite things to say about him is, “He’s useless, but not worthless.” He’s good for exactly one thing, and that is wearing costumes for my amusement.
What I’ve learned from this creature is how easy it is to love a soul not despite his flaws, but actually because of them. Our sweet boy, our Festivus miracle. No matter what time we have left—months, maybe a year or two—it won’t be enough.
Fortunately, Gus is fairly oblivious about his declining health as long as his meals keep coming. The writing is on the wall, so Alvaro and I have talked about plans for putting him down when the time comes, and we’ve decided we’ll do it at home after a delectable final meal. Like a goldfish, Gus doesn’t stop eating until the food is gone, so it might be the longest last supper in history. We’ll hold him and pet him and talk to him even if he can’t hear us well, shepherding him to the other side, letting go even though it’s the very last thing we want to do. Until then, we’ll love him up with lots of extra treats.
Alvaro and I took Maggs for a walk outside yesterday, where I envied his ability to walk over ice without falling. I struggled even wearing my Yaktrax, which is why I was back at the community center today. Sundays at the center are rough: it doesn’t open until noon, and there are almost always league events, which means hundreds of people crowd what is usually a peaceful space.
As I pushed through the packed lobby to check in, the nauseating smell of artificially buttered popcorn from the concession stand took over. Today, the center hosted basketball leagues, all four courts constantly in use, families milling around as they waited for their turns. Even above all of the chaos on the track, I couldn’t hear my podcast because of the buzzers, the whistles, the yelling, especially from red-faced fathers, often over the coaches. Unsupervised younger siblings ran wild around the courts playing spontaneous games of tag that often ended with their crashing into chairs or people on the sidelines, once toppling someone’s nachos and splattering cheese over the floor.
Baggy Wranglers was there, too, this time in better-fitting but still too-large Levi’s. His church jeans, perhaps? Today, he wore a plaid button-up shirt, clicker in hand. And he lapped me again, twice. Sigh. The “Your only limit is your mind” sign remained uninspiring.
I picked up coffees to have with Alvaro after, and we spent the rest of our Sunday getting ready for tomorrow, making dinner, watching television. There’s a busy week ahead, including several labs that will hopefully give me the all-clear for my next infusion on February 12th.