It begins with tingling in my lower thigh, spreading upward quickly and then down, all around my knee. Soon, I can’t feel my legs properly anymore, though they still respond to commands from my brain to keep moving. I then have to be conscious of something I did on autopilot most of my life: simply walking. My strides slow and go from kicking my legs out as I step confidently to something a bit more like riding a bicycle, lifting my leg at the knee in an upward motion before circling the knee forward to land on my foot. Repeat. Repeat. Repeat. Wake up when my foot drags because my thoughts have drifted elsewhere, focusing again on lifting my leg with each step.
Even when it is difficult, I am grateful for every day I’m able to walk.
Alvaro and I have been married for ten years, during which he has heard me tell him countless times, “Today we have everything,” when he moans about small problems. He is prone to feeling sorry for himself, and I like to remind him of how much we do have when that happens. “Today we have everything,” I tell him, pointing out that our parents are still here, our siblings, that we have a home and money in the bank and enough of what we need, that we have our dogs, that we have each other. I say it so much that he anticipates it now, rolling his eyes and trying to beat me to the punch: “I know, I KNOW—today we have everything, right?” Yes. Today we do.
I’m genuinely grateful for all we have but also keenly aware of how fleeting it is, how short lived these things we love are destined to be. If only being grateful were enough to keep them from slipping out of reach.
Although I suspected MS as soon as I lost my vision in January, hearing it uttered by a doctor for the first time was like being punched. It came from a retinal specialist I didn’t particularly like in a tiny room used to deliver bad news. My mother was with me to hear about the results of my initial testing, which confirmed optic neuritis. He told me I had an 80-90% chance of developing multiple sclerosis but not to quote him because it had been a while since he’d read the study he was referring to. He was wrong about the numbers, but that doesn’t matter now because I have MS anyway. His assistant helped me make an appointment for an MRI and another with my first neurologist, and then my mom and I headed out, both of us quiet as we tried to process the news. When we reached the stairs, she made eye contact, touching my shoulder gently, and I broke down, thinking about my husband. “He’s not going to be able to do this,” I sobbed. Tears fell down her cheeks also, understanding too well what I meant.
I am the problem-solver in our marriage, the one who handles the big picture, the crises. We work well together because Alvaro is so good about taking care of the tasks that make me unravel, things like grocery shopping, lawn work, cleaning up dog vomit. He talks me down when I need it and is incredibly supportive. He genuinely appreciates all of my good qualities and overlooks and/or forgives the bad ones. But he also shoves bad news under the rug, retreats from it, refuses to recognize it because to do so would be overwhelming. And although we’d talked before my appointment about the abstract possibility of my having multiple sclerosis, his response was always, “It’ll be okay. It’ll be fine.” Thinking anything other than that was something he simply couldn’t allow himself to do. I knew we’d both need support to help him understand the changes coming our way, so I asked him to meet us at my parents’ house.
There we were, my father and mother in the kitchen, all lost in our own thoughts. When Alvaro arrived, he sat at their dining room table with a heavy sigh like a rebellious teenager about to be punished. I stood off to the side, often feeling like an observer during what followed although I was participating. I told Alvaro about my meeting with the specialist and immediately recognized the panic setting in as he shook his head and asked what it meant. We talked about what we knew about MS, mostly from my aunt having had it, but also about other people and their challenges. Alvaro kept saying that it “could still maybe be okay,” that my diagnosis wasn’t definite. But I already knew it. I had all along.
When he finally understood—as much as any of us could at that time—we talked about how bad it could get, how uncertain we were, how much he was going to have to shoulder. He quickly became overwhelmed again. “Don’t you understand?” he said to my parents, frustrated, as they told him he’d have to step up. “This is my wife, my world, my everything. She’s my true north.” My father, who had mostly been quiet (as is his way), nodded, holding back tears: “Don’t you understand?” he asked Alvaro, gesturing toward my mother. “This is our baby.”
That was it for me. Helplessness is not a feeling I handle well, and I’ve never felt more helpless than I did in that moment. The understanding of how this was going to affect the people who loved me landed with something like a thud. I’ve always taken on other people’s problems, working to fix them as best I could, so being the problem for others was a new role. That shift in perspective came with another understanding as well; the person who has to be held up by her loved ones has a singular challenge: becoming a burden to the people she least wants to.
I changed quickly when we got home, exhausted, asking Alvaro to hold me as we lay in bed. Shock settled in, my teeth chattering involuntarily, my body suddenly cold, trembling violently. No hold was tight enough as I cried. “Today we don’t have everything,” Alvaro said softly, almost to himself, and that is the last thing I remember hearing before finally surrendering to a fitful sleep.
There is nothing more cruel than false hope. I learned that lesson the hard way with my first neurologist, whom I met a few days later. After getting an MRI of my brain, he assured me that there were no lesions, that I would probably be okay. I trusted this silver-haired, comforting gentleman, thinking maybe everything had just been a scare. He sent me for a spinal MRI just to make sure there were no lesions there. There was a spot on one of the scans, so he sent me back for another to check that spot out. I obsessively checked the patient portal for the radiology results in the following days, and on a Sunday night, they were finally available. The radiologist said that the spot had probably been artifactual, meaning something unrelated had caused it to appear on my MRI, a piece of lint, for example. I called my parents first with the good news, choking up when my father answered as I tried to tell him it had all been a false alarm. We celebrated, relieved to finally be in the clear.
When that first neurologist told me he was retiring, I decided to go to the MS Clinic at UNMC to be seen there for what I thought was preventative care and cautious monitoring, multiple sclerosis just a possibility I might have to face several years down the road. Alvaro and I waited for an hour and a half at my first appointment in March because the doctor was busy with another patient. He complained as we waited, and we thought about what we were going to do with the weekend ahead, even snapping a photo in the exam room.
This is the last photo of us before MS became a permanent part of our lives. Soon after it was taken, the doctor came in and asked me if I wanted to see the lesions my first neurologist and the radiologist missed on my initial scans, and my darkest worries about MS were confirmed. Once the initial shock passed, I was sick about having to tell my family that we’d been wrong, taking away their hope and my own. Sorry, everyone, I do actually have MS. This thing we thought was years in the future is here now.
We’ve all had time since then to adjust to our new normal. It’s difficult for everyone, especially as I have a hard time communicating how much it has changed my body. The changes happened so quickly, limiting my energy and mobility, causing what people with MS call “brain fog.” I mostly look the same as I always did, so it’s easy for Alvaro and others to forget I’m wrestling with this disease every day; instead, they may wonder why I’m crabby or tired when my old self would not have been. Still, recognizing my own limitations remains the greatest challenge.
I returned to work at the community college last Monday for faculty meetings. Usually when this time of year rolls around, I go back to campus reluctantly, unwilling to let go of the freedom I enjoyed in the summer. This year, I was reluctant for another reason: my worry about how MS would make the tedious meetings more difficult than they already are. Believing we’d be in the same general area all day on Monday, I wore the wrong shoes, a pair of wedge sandals. After spending the morning in one building, there was a meeting in another building on the other side of campus. It’s not a terribly long walk, at least not for most people. It never used to be for me. But getting there and then back to where my car was parked later took such effort, especially as I’d exercised before going to work that morning. These are not things I had to take into consideration before, and they make me worry about the problems I’ll have in the years to come, planning each step carefully in advance.
At least I didn’t have to take the stairs. That didn’t come until the next day. The stairs in my building are made out of concrete, and even before my diagnosis I felt uncomfortable going up and down them, but now a fall would have consequences I’m not ready for. The elevator is a trek away from the stairs, so I stubbornly decided to take them anyway, waiting until no one else was in the stairwell to see me make my slow, careful ascent. Going up was easier than going down because my vision causes issues with depth perception and my balance is not what it used to be (which, for the record, wasn’t great). But I did it, a small Tuesday victory, a lesson in taking what MS throws at me day by day.
I can’t allow myself to be consumed by worry about all the ways my MS could get worse in the next five years, the next ten. Do I dare to hope for twenty relatively good ones? Although there are dark moments, the answer is yes, I do. I do. In the meantime, I just keep putting one tingly foot in front of the other, remembering that today I have everything. Mostly.