The Silent Sentinel: The Unexpected Jewel In a Month of Ash

I was now 9 months into my Journey since my diagnosis. I had heard so many different opinions about MS, what the symptoms were, how I would feel, and what to expect. A creeping certainty began to settle in: every inexplicable ache, every fleeting weakness must be MS, because my body no longer spoke a language I understood. The ‘remitting’ part of Relapsing Remitting MS felt like a cruel joke. I’m not sure I had felt that. As April 2025 approached, bringing with it the looming decision about a more intense medication, even the simplest tasks felt monumental.

Waking up and putting my clothes on even felt hard these days. Part of that was because I live in a town home with 5 half floors. My bedroom is on the top floor, and the washer and dryer is in the basement. 28 stairs. That’s how far away I was from clean clothes in the morning. Or, the opposite, my dirty clothes and the machine to wash them were 28 stairs away. Even as I am writing this I recognize there is more to the struggle than the amount of stairs, it’s more about how I navigate them. Well… truthfully, I don’t navigate them well. Often I try to avoid stairs when possible. I over-plan my ascents and descents, almost in the way a coach might give a halftime speech to a team.

This is not a hard task, well, it didn’t used to be. My three year old nephew can go up and down the stairs. It’s not that there weren’t many people around that were helping me with everything I did. I am very lucky to have a very supportive, loving family. My husband was doing his best, and between working full time, taking care of the girls, and going to school online full time, he did a lot of laundry. The girls were getting better at doing their own laundry, although being 9 and 14 did not make it easy for them to remain focused on chores. My mom and my sister even came over many times and literally just cleaned our house for us. My sister-in-law even said in the kindest way that she would be upset if I didn’t come up with a chore for her to do. I feel very fortunate that I have such a robust support system to lift me up and care for me. I just never thought these were things I would need to ask them to do! My husband literally lifts me up the stairs. Days when I am tired, and my legs are shaking, I don’t think I would make it without him. And, those days happen pretty often. 

You know, laundry has always been one of my least favorite household jobs. It’s never ending, you know? No matter how on top of it I tried to be, there always seemed to be a mountain to climb. And that was before MS! How I longed for the illusive “remitting.” Things just seemed to get worse, and be more difficult. Every day was like a surprise to find out what else was going to be challenging for me to do. 

I don’t remember now what the new symptoms were that led to my email to my neurologist, but I remember I had them. I had seen him just two weeks before and he reviewed my last MRI with me from December. I had been taking my medication for 6 months, and ideally I would not have had any new lesions. I knew from reading the results before my appointment that I had two of them. In my spine. And I knew from my first appointment with him that the spine lesions were the worst kind. “It’s a one way road.” He had told me that lesions in my brain had more hope of adapting to the changes. Things would be different, but my brain could learn how to “go around” the lesion. Not so much with the spinal cord. That’s a one way in one way out system. 

I had prepared myself to advocate for a medication change, knowing that I only had one more option at this point. This one scared me. When I did the research before making my medication choice originally, I explicitly did not pick this one because it seemed a lot more intense, and there was a potentially link to breast cancer. I remembered thinking, “that’s all I need… MS and cancer?!” So, I didn’t choose it. After some blood tests I knew one of the three medications was automatically out because I was at higher risk for a deadly brain virus.  My MRI results came directly into my inbox pretty quickly, and I remember how I felt when I read there were two new lesions. My heart sank. I knew then what it meant. Maybe it’s ironic that around the same time through my work I met someone that also had MS, and was taking this medication. Sadly, she had also recently had a double mastectomy because she was diagnosed with breast cancer about a year after starting the medication. I knew that did not prove anything, and I also couldn’t get that out of my head. I had about a month between getting my MRI results and meeting with my neurologist. He didn’t know this, but I had been preparing myself for the “fight” I was going to have with him to start this medication. I had decided, even with the higher risk of cancer (even if that wasn’t proven) I wanted to make this change. 

You know those medication commercials that have a list of side effects that seems longer than what the drug is prescribed to help with? Yeah… this was one of those. I remember thinking, “why would anyone take that?” Not about this particular drug, but any of them that have such a long list of side effects. Especially cancer. But here I was, ready to literally throw down with my DOCTOR to prescribe me this “cancer causing” medication. I must have been nuts. I guess, as weird as it sounds, MS progressing was scarier to me than cancer. That was a heavy realization.

Surprisingly, I didn’t even have to fight. He brought it up first. I have come to learn that holding and validating my emotions is not something I can expect from him. However, I also know that I can trust medically he knows what he’s doing. I could tell by the way he said “a lot of patients…” or “I would recommend to someone…” that he may have thought he had to prepare to advocate pretty hard for me to change medications. I was almost awkward when I had to wait long enough for him to tell me all of the potential side effects again before telling him I wanted it, and I was ready. No, I don’t need time to think about it. I have been thinking about it, and that is what I want. Now, I was even more sure, because he was telling me it was a medically sound decision for my care.

He told me he was going to send me to an infusion center, and gave me a handout so I could look it up online. That was surprising to me. I thought I was going to have to go to the hospital, or a cancer center, and I was really not looking forward to that. When my husband and I looked it up, this place looked almost bougie! Like a spa… well… kinda. I mean, they were still an infusion center. But, they had private rooms, snacks, paid for your lunch. That was much more than I was expecting. He told me they would give me a call, and schedule one infusion that would be all day, and then another two weeks later. I appreciated that. My brain was so full of “to-dos” that I was looking forward to someone else holding that executive functioning task. That’s another thing I have learned my neurologist is great at. He works with a lot of patients with MS, and he has found the best places to send them to. The imaging center for my MRIs he sends me to, is not actually connected to where he works, but it has the best pictures. I trusted that this place he was sending me to was the best at what they do. I left that appointment feeling more hopeful than I expected. 

Then, it happened. Things were getting worse. I emailed my neurologist, and let him know what was going on. He gave me an option to schedule an MRI to confirm if I had more new lesions, or to skip that step, assume it’s a relapse, and go straight to steroids. MRIs are not much fun… and I didn’t feel like I had time, or wanted to wait, so I agreed to skip that step and go right for the steroids. He informed me of the next steps:  3 days of IV, high dose, steroids, then 6 days of oral steroids to wean off. When I got my diagnosis, I had 5 days of IV steroids in the hospital, and I knew the goal was to reduce inflammation, and help with the symptoms. I felt terrible in the hospital, but what I remembered about the steroids was there was a metallic taste. I knew I could manage that if it meant improving these new symptoms. I was also excited when he told me that the same infusion center would be able to do the steroids! I had already scheduled the new medication there, and now I was going to go in the week before that appointment. 

Similarly to when I took myself to the ER, I told my husband that he did not have to go with me, we had the girls with us, and he was busy with school. “The hell I don’t!” was his response. I remember him asking me if I was crazy and telling me he was not going to let me go alone. The problem was I didn’t have as much advance warning to schedule the steroids around our life. They called me on a Monday, said it was “stat” and asked if I could come in that day. I felt anxious about how to move everything in my life around for this. I felt hard to balance. We made it work though. 

The first day, I remember being nervous, not knowing where I was going, and feeling like I was doing it all wrong. I had to move a few of my clients around because I was going in the middle of the day, but I kept my 4pm client. I assumed that since the steroids were supposed to make me feel better and not take that long, I would be up for it. Man, I am glad that was the only day I did that, because it was not a good choice. I felt pretty miserable. My blood pressure, that is usually pretty normal/low was very high. (like 165/100+) My face and arms turned red, and my temperature went up. This lead to my symptoms getting worse, and the nurse keeping me for observation longer. Eventually she felt okay with me going “home.” I was dizzy, my vision was not normal, and the carpet pattern on the long skinny hallway to the elevator made me feel like I was going to fall over. It reminded me of the vertigo portion of a haunted corn maze I went to in college. Back then I literally froze. My legs were not able to even move. Now, I had motivation to get back to work to meet with my client, so I felt like I needed to hurry back. 

In my failed attempt to “hurry back” to work, I was 30 minutes late to meet with my client. I felt nauseous, my head was pounding, and I had the evidence that I had just had an IV. Luckily, I did not agree to “keep the IV in,” like they had offered because they knew I had to go back tomorrow. I don’t think my client noticed, well, I hope he didn’t. I apologized for being late, and thanked him for understanding. Usually I would try to stay a little after my last client to clean everything up, and prepare for the next day. I didn’t do that. I just went straight home.

I was exhausted when I got home, and I felt kind of like a zombie. Not that I actually know what a zombie feels like, but I felt like what they look like. Not able to think straight, my legs didn’t move in a way that made sense, and I was breathing heavier. Everything felt so hard, and heavy. I think I went to bed before our 9 year old that night. The next day, I woke up and did not feel much better than when I went to bed. Possibly worse, because I had a giant bruise from where the IV was. I worked all day, and then went back to the bougie infusion center. This time, I knew parking was going to be a struggle, and my husband was not able to go. Because he went the day before, and saw what I looked like after, he suggested I have one of my family members take me. He had watched me try to navigate walking, knew I was dizzy, and did not want me to drive. I felt really guilty to ask for help. Not only because it was hard, but also there was no time to prepare. It was all moving so quickly. 

Again, I am very lucky to have such a supportive family. I sent out a message explain the predicament and I was only sent love. Based on the timing being in the middle of the day, most of my family was not able to drive me. Not because they didn’t care, but because of their work schedule. My mom was generous enough and available enough that she volunteered to go with me. We navigated the terrible parking lot, and I told her about my last visit.

But, as Mom and I made our slow progress into the building, a figure in the periphery caught my eye – something I hadn’t registered during my previous, more frantic visit. A giant, brown, almost grungy looking, teddy bear. He was sitting under the stairs in the shared lobby of the building. He was not particularly inviting, and yet I couldn’t help but stare at him for a moment. The way the sunlight shone through the stairs was almost like a striped spotlight on him. “Was he here yesterday?” I thought to myself? “He must’ve been,” I answered myself. He looked like he could’ve been there as long as the building, and it was not a new building. 

I made my way down the dizzying hallway, with my mom, who has had both of her hips replaced. She coined herself a “poky puppy.” I remember telling her how much I appreciated that title because it sounded so cute, and telling her we could be “poky puppy partners.” So, as a pair of poky puppies, we made our way down to the bougie infusion center. Slow and steady… well, slow at least. The kind women at the front desk welcomed me back, noticed I had a new person with me, and walked me to my private room. They offered us endless snacks, which was not something I was interested in because I felt so nauseous since the last time I was there. When the nurse came in, I learned that I am a “hard stick,” and the she tried a few different spots before she was able to get the IV in. This time, it was in my wrist. That was a painful spot, but I knew it would only need to be an hour or so. 

The second day symptoms were worse than the first. I really did not feel well, my wrist hurt from the placement of the IV. My body was aching, my eyes were not focusing, and my left eyeball started switching. I remember hearing the beeping of the machine. It was almost like a count down of how much longer I had to endure this “helpful” medicine. My mom was peacefully sitting next to me, doing word puzzles on her phone, and asking me how I was doing. When I told her I was nauseous she went and got me my new favorite ginger ale. Finally, the nurse came in and took my vitals again, and told me I was good to go home. 

The poky puppies headed toward the elevator. I had my cane, and my mom was with me, and it still felt like every step I took, the hallway seemed to get longer. My mom asking, “you okay, honey?” made me assume I looked as miserable as I was feeling. There was something unsettling about that for me. Although the whole building was not spa-like, the part of it I was in sure looked that way. I had this unstated expectation of myself that I needed to look “good” to fit in. I didn’t feel “good,” but I needed to find a way to try to look the part when I was there. I knew my mom didn’t have this expectation of me, and the ladies at the infusion center were very kind, so they probably did not either. It felt like motivation to just keep going, keep moving. So I did. 

Then the elevator ride, just one floor down, made me feel like I was going to vomit the snacks I didn’t even eat. Feeling the further away I was from the infusion center, the more “acceptable” it was for me to not feel or look “good.” Then the elevator opened, and I saw him. The bear. Sitting on a wooden bench, under the stairs, with the stripped spotlight making him stand out from the gray around him. There was something stoic about him now. He was peaceful, and genuine. Kind of slumped over, like his head was too heavy for him to hold up, yet he was still there. I remember thinking, “same, Bro.” I still didn’t know his name, but he made me feel like it was okay for me to look crummy. 

The drive home was not great. I have a tendency to get carsick when I’m not driving. I’m sure the blurry vision and steroid infusion didn’t exactly help this. I remember getting home, and walking up the seven stairs to the bathroom because I was sure I was going to throw up. When I saw myself in the mirror I almost didn’t recognize myself. As a baseline, I am a pale person, but when I saw myself now it was like I did not have any color to my face at all. The look of worry in my mom and husband’s faces when I left the bathroom told me I might not be crazy. My mom, trying to hide the worry in her voice said, “maybe you should sit down,” and my husband jumped into action. He brought over my rollator and helped me sit down. I did not like that I was feeling that way, and my family had to see it. At the same time, it was pretty validating for them to know just by looking at me that this was challenging for me. I also felt immense gratitude that they were willing to stop what they were doing to help me. 

On my way to drop off my step-daughter the next morning, I remember asking my husband if this seemed like I was getting better. He looked at me, didn’t answer right away, and tilted his head like dogs do when they are trying to make sense of what you’re saying. Then he asked me if I thought I was getting better. “No! This doesn’t feel better. I feel like shit!” I remember saying without thinking. Then, when I realized I couldn’t pull the words back into my mouth, I apologized and told him I wasn’t upset with him. I was just disappointed. I had not anticipated this being so hard. I thought this was going to be recovery time, and had not prepared to feel worse. He nodded in agreement, and we reflected about my time in the hospital. At the time, everything was new, and it was hard to make sense of anything. Maybe some of the challenges from the hospital were because of the steroids, and he reminded me that it didn’t last forever. 

On the third day it was much harder to force myself back to the infusion center. This time, my sister took me to the appointment, and my brother-in-law picked me up. On the way in I pointed out the bear to my sister. He was just sitting there as stoic as ever. She didn’t seem to know what to say, which I don’t blame her. I didn’t even notice him my first time in, but at this point, he felt like my buddy. At this point, noticing him was part of my routine. I would mentally let him know I’d see him soon as I got in the elevator to head upstairs. 

Walking down the long narrow hallway with dizzying carpet with my sister reminded me of a similar memory with her. When we were younger, my grandparents paid for the whole family to go on a cruise. Like 40 people! While we were there, one of my contacts tore, and the bag with my glasses didn’t make it to the ship. This walk felt similar to the walks I made then with only one eye in, and the rocking of the ocean making walking straight difficult. Clearly, this walk was not the same in many ways, there was not endless ice cream cones where I was headed, but there was a lot that was similar.  The women at the front desk and the nurses joked that they had met my whole family by now when they saw my sister brought me this time. “Not even close,” I thought to myself, and smiled through the overwhelming nausea created by the elevator ride and the ugly carpet and I nodded my head and expressed how lucky I felt to have them. My sister had to leave halfway through, and talked with her husband about coming to get me when he leaves work. I felt really lucky that I had so many people around me willing to make a change to help me out. I also felt pretty guilty and awkward, like I wanted to have something fun to tell them or something to make it “worth their time.” I didn’t. 

The only thing I had that was new in my life was that I made “friends” with an old slouched, grungy looking bear under the stairs. I was coming to find others may not resonate with that as much as I was. That was okay, they didn’t feel like they were a slouchy dirty bear like I did. 

I had one week between my last steroid infusion and my first medication infusion. Honestly, it was a pretty bittersweet relief when I started to feel better after a few days of oral steroids. My vision had started to improve, I felt stronger, my eye now only twitched when I yawned or sneezed. I had a pretty good idea about how this medication was going to feel. Parly because of the research I did, and for what my neurologist had told me, but also the company that makes the medicine arranged for me to talk with a nurse case manager to go over all of this with me too. And if that wasn’t enough, my nurse at the infusion center also gave me a pamphlet with all of the “infusion reactions,” and talked to me about it as well. They all had the same information, which I suppose it good, but the information they had was to warn me about how I would feel. I think I nurse summed it up with, “you might feel like you were hit by a bus at first, but it will get better each time you do it.” 

The medication infusion was a whole day, so we had to get there early. My husband and my mom went with me, both times. By this time, I was purposely looking for the bear as my rock when I went into the building. The quiet, stable gem to give me strength before battle. Shining under the stairs. I didn’t say anything, and I felt like I didn’t have to. We now had an unspoken bond. It had only been a week, so nothing had really changed. The carpet in the long skinny hallway still sucked, but because of the taper off of the steroids, I was actually feeling pretty good. We went in, joked about how many times I had been in recently, and got settled in the room. You know, it didn’t bother me as much last week, but now I was annoyed with the AI fish on the TV. I knew it was meant to be comforting, and how could they know I was afraid of fish. So I turned the TV off. 

Before starting the medication, they gave me Tylenol, aspirin, more steroids, and Benadryl, through the IV to make the infusion feel less miserable. I noticed this made me feel loopy and dizzy, and wondered how bad it would be without the Benadryl? That was just an internal thought though. I assumed they knew what they were doing. The infusion was only half of a dose, that was why I needed to come in two weeks later for the rest, but it still took the whole day.  They even bought me lunch, which was a nice touch. I could tell they were doing everything they could to make this a better experience for me. I appreciated it a lot, and I tried to keep a positive attitude. Now, I think that might’ve been for their sake more than mine. I mean, I wanted to feel better of course, but I still had the little voice in the back of my head reminding me how nice this place was and my desire to fit in.

As bad as I thought the steroids were, this medication was definitely worse. My mom and husband insisted that I take the wheelchair back to the car after, which I appreciated. I got to close my eyes down the dizzy hall, and sit in the elevator ride. When the elevator opened, I was able to look to my friend, the bear, for the jewel in a month of ash. 

The day of my second medication infusion was May 1. To me this felt like a new start, and “Ashy April” would be done. I hoped it would be like opening a door to a new month, and a new me. All of the information I had received from all of the sources had told me that the second infusion would be easier. My body already got half a dose, and this was still only the second half. Turns out, this day was actually the hardest day yet. My body literally shook as I went from the car to the bathroom when I got home. I had to take three different breaks in the short walk, and my husband had to hold me up to keep me from falling. 

Despite the physical ordeal, that day holds a significant place in my memory, and one of the things I am most thankful for is that I finally took a picture of my silent buddy. I still don’t know his name, that stoic bear under the stairs, but I am so glad I have that image to remember him by. I hope he’s still there the next time I make my way into that building. Though my gratitude will remain unspoken in words, I hope, somehow, he hears my story – a story interwoven with his quiet strength. Thank you, silent sentinel, for being the unexpected jewel in a month filled with ash.

It’s ironic to me now that the grungy, dirty, old looking bear was the part of going to get my infusions that made me feel the safest. Not the fancy infusion center with endless snacks, expensive ginger ale, and comfy lazy boys. The bear was the most real. He didn’t try to give me a sugar-coated, “I should feel lucky,” or “it’s not that bad,” line. I didn’t have to pretend I wanted to eat, or didn’t feel that bad. He didn’t ask me anything, he didn’t expect anything of me. I didn’t have to pretend that I had a positive attitude for him to accept me. He was just there. Slumped over, heavy, and tired looking like I was.