Thanksgiving morning: grateful for legs strong enough to carry me to the river’s edge, for the crisp air, for the blindingly bright sun.
I met with my neurologist this morning for a pre-scheduled checkup. I’m glad she has returned from maternity leave, but I almost welcomed her back with a kick to the face.
More on that later.
We went over the results from my most recent c-spine MRI. There are two new lesions, which I read about when the report was finally posted to the patient portal last week, neither active at the time of scanning. Dr. Z believes they are from before I began my treatment, and she also said I made the right choice with Ocrevus because they are evidence the disease was progressing quickly. We spent several minutes looking at the images and comparing them to my last ones from May. Those were taken in an open MRI, and the quality was terrible, so she wants me to do all closed MRIs from now on. Yikes. Another lesion that was previously visible has disappeared, a good sign. Unless I have new symptoms between now and then, I won’t have another set of MRIs until May.
I sometimes focus too much on what I can’t do, and Dr. Z wasn’t having it. When we talked about my walking not being back to where it was before my relapse despite it having been five long months, she said in her blunt way, “Of course it isn’t. It has only been five months.” She told me to keep pushing as much as I could and that she wouldn’t be surprised if I was mostly back to where I had been by the one-year mark. “Is there still hope for the vision in my left eye?” I asked, the one-year anniversary just a couple of months away. “Sure,” she replied, “but 20/40 is a good place to be. You have to understand that the cloudiness may not ever go away.” Sigh. When I asked about the Ocrevus my insurance is sure to deny me again when I’m due in February, she told me not to worry, that I would still qualify to get it for free.
Then it was time for the worst part of the appointment: the physical exam, including scraping the bottom of my feet. Saying that I can’t stand having my feet touched is an understatement. There’s a good chance it will be the reason I murder someone someday. Every doctor’s visit involves checking my nerve endings in my toes with a tuning fork before scratching the bottoms of my feet with a tongue depressor, and it makes me want to die.
A lifetime ago, I went on a terrible date with a guy who kept staring at the ground. I thought he was admiring my shoes, gorgeous high black heels with double buckles. Turns out, I was half right. I was talking about my job in response to a question he’d asked when he interrupted me: “Are your toenails painted under there?” he asked creepily, licking his lips. “Red, I hope.” Realizing he had a foot fetish, I said something about having to work early and got out of there as quickly as my alluring feet could carry me.
If you have a thing for feet, trust me, mine are not the ones. These feet have never had a pedicure or even a massage because I really cannot handle anyone touching them, and I don’t like wearing socks, so they are not the moisturized beauties of a foot model. Far from it. I scream if Alvaro accidentally makes contact with one on the couch or when we’re sleeping.
So I warned Dr. Z that as non-reactive as I sometimes am when my reflexes are being checked, my feet have a mind of their own. She waved her hand dismissively at me and got to work. I gritted my teeth through the tuning fork on my toes, but she gave no warning before running the tongue depressor over my foot. The kick was involuntary, surprising both of us. “You weren’t kidding,” she laughed, standing back when she did it to my other foot while I focused on stifling a yelp.
Foot torture behind me, I left feeling optimistic. All is well.
I woke up just after 5 this morning to find snow softly falling outside. After making a cup of tea to drink while enjoying it through the window, I checked the patient portal.
I love that we live in a time when online patient portals give us access to our healthcare information, where we can see it sometimes before our doctors do. But it also taps into all of my obsessive tendencies, so when I say I’ll be checking it at least 10 times a day until the results are in, I’m lying. It will be at least 20 times.
The results I’m waiting for are from a cervical spine MRI I had yesterday. My neurologist ordered it because I began having tingling and numbness on my left side a couple of weeks ago. And then I began experiencing similar tingling/numbness from my mid-shin to my knee on the right side a few days ago. This isn’t supposed to be happening while on Ocrevus.
The only panic attack I’ve ever had was when I tried to do the thoracic spine in a closed MRI, and I came close on my last cervical spine in the closed machine. So my dread and panic built in the days leading up to it. Aside from my usual psychological terror about being in a tiny, blacker than black, stale-aired space (that always, always feels like being shut in a morgue drawer, but you’re paralyzed and no one knows you’re still alive), this MRI was in a hospital system and location I hadn’t been to before. I am a creature of habit, so that added to my anxiety greatly. What if the machine was even smaller than the other ones I’d been in? Would they give me scrubs to wear like they did in the other hospital, or would it be the dreaded gown? (Spoiler alert: it was the gown, of course.)
Yesterday morning, trying to calm myself, I went for my walk as usual. But this time I deviated from the trail and walked over to the river for the first time in months. Because of flooding in the summer, the park has been closed, but seeing no one around to stop me, I crossed the caution tape and made my way to the water, taking in the rusty old toll bridge and the rushing water. This is the place where I try to go in my imagination while getting MRIs, and I needed the lift of being back there in person first.
After teaching my afternoon class, I rushed home to take the Xanax prescribed to take the edge off. It doesn’t really help much, except with sleeping after it’s all over, but it is better than going in without anything. Clothed in a less-than-flattering, flimsy gown after having my line for contrast put in by a sweet, smiling nurse, I followed the technician to the MRI room, approaching the table slowly and beginning to tremble. After adjusting my body to where it needed to be, another technician put plugs in my ears and placed what can best be described as a cage over my face to keep my head from moving, locking it in with a thunk. Then it was time to be pushed inside, and the panic button was placed gently in my hand. My eyes were covered with a washcloth because it helps me not to see how enclosed I am, and once I was all the way inside, instead of the pitch black I’ve become accustomed to, it was bright. There was a light inside! What a difference that made. Also, instead of the stale air that makes it hard to breathe properly in the other closed machines I’ve experienced, cool air circulated freely, making my mental journey to the river’s edge so much easier. I emerged 40 minutes later to get dressed and meet my husband. We stopped for drive-through potato oles (I blame the Xanax as they would never appeal to me if I were sober) and then artisan ice cream before getting me home for a long, restful sleep.
Because MRIs are usually so difficult for me, I try to make sure I have something to look forward to after, and today that involves an overdue haircut and dinner at my favorite restaurant with my mom. But for now, I have a snuggly Maggie tucked in by my side on the couch sleeping, a rare pleasure, the sun rising behind us, the snow beginning to accumulate on the grass. Soon, I’ll bundle up and head out for an invigorating, cold walk. It’s a beautiful morning, and I plan to enjoy it.
Right after another visit to the patient portal.
The t-shirts are ubiquitous in MS forums, and I understand the attraction. In the style of Rosie the Riveter, the woman on the shirt shows off an “MS Warrior” tattoo on her bicep. People wear them to their infusion treatments and post pictures of themselves on social media, saying things like, “Let’s do this!” with a determined-faced emoji.
You may have guessed by now that I am not one of them. I sometimes wish I were the kind of person who would wear such a thing, see myself that way, believe in it, be buoyed by it. But I wasn’t before I had MS, and I’m certainly not now. Still, having MS has made me more aware of and grateful for all of the things I enjoy. So much so that I worried my new focus on the positive was causing me to lose my essence, which might best be described as Dorothy from the Golden Girls meets Andy Rooney. “Oh, no,” I texted my best friend one night. “Has MS made an optimist out of me?” Perish the thought.
“Never!” she replied perfectly. (Aside: no one gets you like your girlfriends.)
Another crowd favorite is the saying “I may have MS, but MS doesn’t have me.” I understand the sentiment, truly, but it’s the MS equivalent of the poster where the cat is dangling from a tree encouraging passersby to “Hang in there!” Ugh.
And I guess that’s because I understand that MS does indeed have me. It had me when it stole my vision in one eye, it had me when an incredibly long needle was thrust into my spine, it had me when I couldn’t walk without a cane and had to be hooked up to high-dose steroids, and it even has me when I’m in “remission,” which isn’t as nice as it sounds. It just means I’m not having a major crisis and get to live with the other everyday bothers of life with this unwanted passenger. I’ve been experiencing tingling and numbness on my left side for over a week now, something that’s not supposed to happen because of the treatment I’m on, so MS will definitely have me next week when I make my sixth trip this year into an MRI machine to hopefully help my neurologist figure out what is going on.
Of course, I’m fighting MS in the ways I can. But we encourage as an ideal in this country that if you just have enough will, you can beat anything with determination, a strong spirit, true grit. And that’s simply not true. I hate hearing about people “losing their battle” with (insert your favorite disease here), as if, alas, they didn’t try quite hard enough. Maybe that’s not what people mean when they say it, but it’s always what I hear. They didn’t lose the battle. Every day living with a chronic illness is a win. But you can’t win indefinitely, no matter how hard you fight. The house always wins, one way or the other.
Instead of Rosie, my t-shirt would show an exhausted woman without makeup, hair a mess, eye squinting because her vision never fully returned after the optic neuritis, face red and puffy from steroids. This is not the kind of person who commits to tattoos, so Sharpied on her arm might be something more realistic, if decidedly less inspiring, like “MS Coper.” Maybe I’ll have to Zazzle that up for this party of one.
MS Warrior, I am not. But I’m getting by anyway.
I haven’t walked a mile all at once since my last posting. It felt like such an accomplishment at the time, and it was, but somewhere inside I thought that if I just got there one time, it would keep coming to me. Not so. To complete that mile, I had to take the day before off from exercising, and I had to push past numb, unsteady legs at the end. But I went back the next day, and the day after that, and the day after that, and the day after that because I know that I need that daily exercise now more than ever. But on the following days, I could only do half a mile, three-quarters on the odd day I could manage, if only just. It doesn’t take me long to rally afterwards, and I’m able to go about my day just fine, fortunately. For now.
I want to be able to walk a mile all at once every day. And then to be able to go farther than that every day. But these legs! They have a different opinion on the matter. So on a few days last week, trying to do what I can with what I’ve got, I did a half mile in the morning by myself as usual and then a half mile after work in the afternoon/evening with Alvaro and Maggie. That was working well until Maggie started showing issues with one of her hind legs, carrying it from time to time and avoiding stairs and jumping on furniture. She normally zooms from one place to the next, so I knew something was wrong. And after going through ACL surgery this summer on her right leg, TWICE, her left leg may be next up to bat.
When a dog ruptures its ACL, it has a 50% chance of rupturing the other one within a year or two. I really hoped that the gods would decide we’d been through enough this year with my relapses and diagnosis and Maggie’s two surgeries keeping her in a cage for months, but no. Yesterday, we went back to the surgical vet. Her ACL may have a partial tear, he said, but he’s certain that her knee needs attention as it’s “loosely flopping” around instead of staying where it should be, and that is putting extra strain on her ligament. Did I mention that she had both knees supposedly surgically corrected several years ago? We’re trying anti-inflammatories for now, and Maggie keeps trying to convince us that she’s all better, but it’s probably just temporary relief, so she’s scheduled for surgery in a couple of weeks. Six to eight weeks of confinement for recovery will follow.
After the vet yesterday, I picked up my dearest friend for happy hour before going to a reading, part of the Creative Writing Forum hosted by the community college where I work. After weeks that were overwhelming for both of us, we needed that time together. It was restorative, seeing our colleagues—good friends, all—and listening to an incredible poet share her work. Still, I couldn’t help but note from the chair where I sat in the front row that only a year ago at the same event, I was able to stand the whole time without thinking about it. I miss those days when I could take being upright for granted.
Goal: Keep on walking. Stop focusing on distances.
Goal: Get through yet another surgery with Maggie.
Goal: More happy hours. More poetry.
Something else happened this week, and the sadness of it keeps sneaking up on me in waves. My aunt Florence passed away on Sunday. She was my mother’s older sister, and for my whole life, she lived in a tenement building she owned in Rhode Island. There are three apartments there, and they’ve always been family-occupied; my sister used to call it the Walton house. When I was young, Auntie Floss and Uncle Henry lived on the first floor with their children. One, Kathy, lived on the third floor with her two daughters. That apartment had been occupied previously by my mom and sister. My grandparents lived on the second floor, Nana always good for a cookie, and Grandpa delighting in keeping his substantial candy collection all to himself, only offering his grandchildren “smells.” I stood there, stupidly hopeful, while my brother was smart enough to raid the stash in the bedroom. Although occupants changed over the years, that house was the heart of the family, the first stop when I’d return to visit (and usually the place where I stayed), always full of cousins and aunts and uncles, the gathering place for pool parties and barbecues. There were ten children in my mother’s family, and they would come by often, bearing donuts and coffee, visiting and laughing. It was the hub, and I still see my aunt in her living room, sewing quilting squares and drinking coffee, always ready for whomever might drop by next. That’s the picture of her I’ll hold onto.
High points this week involved spending the afternoon with my family on Sunday. My sister, my nieces, and I all gathered at my parents’ house to laugh and cry together. On Wednesday, I went by for dinner and made Halloween bags with my mom, a tradition started when the kids were young and one we love so much that we’re not ready to let it go now they’re grown. Tomorrow, Alvaro and I will go over for yet another dinner, where my mom is making her Boston baked beans, my favorite. We’ll bring Maggie, who hasn’t been in a long time because of recovering from the last surgery, and Gus, who stays by my father’s side, waiting faithfully for treats.
Goal: Love them in an active way while they’re here. Call. Write. Show up.
Goal: Learn again and again that letting go is hard. Lean into the grief without wallowing. Be the support system for others.
I woke up feeling determined. Today was the day, a day months in the making. I was going to do something I haven’t been able to since May. Arriving at the lake this morning, I wrapped up in my scarf to guard against the strong winds and took a deep breath before beginning. The mission: walking one mile, all at once.
* * * * *
I marvel when I read MS blogs where the writer is training for a marathon or a Cross Fit competition. How? I wonder. There was a time when I found reading about their accomplishments discouraging, but I also read blogs written by people with far greater MS challenges than the ones I’ve encountered so far. The point is, you can’t compare your progress with that of others; the only appropriate measure is against yourself.
Half a year ago, before my diagnosis, I was doing about 2 miles on my daily walk, longer on the weekends. After my spinal tap in May, I had my first major relapse that affected my physical ability, severely limiting my use of the right side of my body, my limbs suddenly leaden, useless. It took a long time to get back into my walking routine, and it required great effort just to complete half a mile because of leg numbness. One of my biggest fears is of falling, and that was true even before I had MS, though now it would be less of an accident and more a failure to be appropriately cautious. And I’d have to answer “yes” when the neurologist asks if I’ve fallen since my last visit, something I hope never to have to do, so I usually listen to my legs when they cry uncle.
For the past few weeks, I’ve been pushing to three-quarters of a mile on days when my legs feel steady enough to keep going. There are many other steps in my day at work and doing regular activities, but it’s important for me to get the most out of the time I dedicate to walking for exercise. I don’t even take Maggie anymore because she slows me down too much, so I have to endure her sad puppy eyes when I tie up my walking shoes and leave in the morning. Alvaro gives her a spin each afternoon so she doesn’t miss out. Sometimes I join them for a second walk, strolling this time for pleasure, taking in the day, talking with my husband.
* * * * *
I have the energy and endurance to walk several miles at a time. Since that last relapse, though, my legs just can’t keep up. They lose a little more feeling with each step, and when I fail to pay attention, my right foot will eventually drag, which threatens to trip me up. I have to think about bringing my toes up with each step out. There are benches scattered where I walk, fortunately, so if I need to rest, I can. I didn’t need to do that today, though, which made completing the first mile in months that much sweeter. The trail where I walk is just over a half of a mile around, and the first lap went as it usually does, my legs tingling and slightly unsteady at the end. Beginning the second lap took more courage and a leap of faith. What if I am only able to go halfway around before my legs give out? How will I get back to my car? I imagined it being like swimming out farther than I ever had before only to face the possibility of drowning with the shore in sight, just short of safety. Even though the last eighth of a mile was slow going, each step carefully, consciously taken, I finally made it.
Small victory? Large victory? A victory either way. Tomorrow, I’ll try to do it again.
The seasons are about to change, and although I understood that when I returned to work for the fall quarter, my trees already losing leaves, I could finally feel it in the air yesterday morning. I was up early to go for a walk before an appointment with my MS nurse, Angela. It was incredibly windy and cool, cold even, and I regretted not wearing a jacket. Just the day before, it had been an uncomfortable 95 degrees, capturing the wild, swinging extremes of weather in Nebraska.
Angela and I talked about the weather before discussing how much more at risk I am for complicated infections because of my non-existent immune system. My B cells are well and truly dead, so the Ocrevus is doing its work, but that comes at the price of being less able to fight illness. This is a bit worrisome as the college where I work is constantly full of sick people, so I’m going to have to channel my inner Howard Hughes with the antibacterial wipes and hand sanitizer, especially when the cold weather brings its usual barrage of colds and flu. Winter is coming with its sneezes, sniffles and coughs.
Although I later grew to appreciate her natural beauty, Nebraska was an utter disappointment compared to my childhood home in England, where I came to love the gray, rainy days, the rolling hills dotted with cows and sheep, the wild blackberries growing amid otherwise carefully tended gardens. As a child, it seemed like everything exciting was happening back in the US, though, so I looked forward to visiting our family in Rhode Island. One summer trip was full of sun, frozen lemonade, ice cream, cousins and backyard barbecues on brown lawns, my aunts’ and uncles’ pools our oases. When we returned to England, I remember so clearly being struck by how green the grass was next to the runway where we landed, vibrant emerald streaks against a gloomy sky. I felt the serene sense of being truly home for the first time.
When it was time to return to America, we moved to Nebraska, and the changes were not welcome. Much of what I dislike about the state, aside from the Husker fanaticism and the overly conservative politics, has to do with the weather. Spring and fall get blurred–indeed, almost erased–by winter and summer, and although I love snowy winters, summer is the worst. The heat is one thing, but the humidity is oppressive, crushing. The temperatures were in the 90s and 100s when we arrived in 1991, the humidity like nothing we’d ever known before, heavy and punishing. My parents bought their first house here, something that was only made possible by living frugally, so my father refused to turn the air conditioning on. I had never been so miserable; our furniture hadn’t yet arrived, so we sat sweating, melting near the windows, praying for the faintest whisper of wind, panting like overheated dogs. I remember resolving to leave this horrible state as soon as possible. There was no home here for me.
Although I didn’t forget that wretched summer or the ones that followed, Nebraska has a way of charming people if given enough time. Sometimes, it’s absolutely beautiful. Today was one of those days. It was in the mid-50s for my walk this morning, brilliantly sunny without being warm. The breeze held the promise of fall, quickening my step, the cattails and river grasses swaying as I moved along. Days like these are rare, so they feel like magic when we’re graced by them. When Alvaro got home from work in the afternoon, I took a break from preparing dinner and went for a second walk with him and Maggie, a slower one this time, accompanied by butterflies all the way around the water.
I would not have believed it as a teen, but Nebraska is my heart’s home now. There are days when it’s difficult to remember that, when the humidity takes hold of the throat, choking, or when the fierce winter wind cuts right through layers of carefully bundled clothing. But then there are days like this one, walking hand in hand with my husband, watching Maggie delight in the long grass before returning home to a nap for Alvaro, dinner preparation for me. When he woke, we drank glasses of petite verdot with a mushroom, shallot, tarragon and potato gratin alongside a butter lettuce salad with scallions and lemon vinaigrette.
Where is home if not in the pleasure of such sunny, unhurried days?