Rhys
Relapsing-Remitting Multiple Sclerosis (RRMS) [ree-laps-ing / ree-mit-ing / muhl-tuh-puhl / skli-roh-sis] n—A disease characterized by clearly defined
attacks of worsening neurologic function; these attacks—often called relapses—are followed by partial or complete recovery periods (remissions), during
which symptoms improve partially or completely.
“Think you can handle cleaning all these by yourself?” The head janitor of the JFSB motions to the row of toilet stalls. “The other guy didn’t show.”
“No problem,” I say.
“I guess morning janitorial jobs aren’t for everyone.”
I don’t think they’re for anyone. Some people just need money more than others.
“You’ve got one hour before classes start.”
“I’ll get it done,” I say.
He nods, then leaves me in the men’s bathroom with a stocked cart.
I jam my headphones into my ears and turn the music up, trying to drive away thoughts of Emmy, who is forever dancing in my mind. Fifty minutes later, I’ve managed to clean every bathroom on the second floor. I pull the earbuds from my ears, stash them with my phone in my pocket, and then sign out at the front desk.
The sun is coming up when I walk outside. My phone buzzes in my pocket and buzzes and buzzes. I must not have had service inside.
I glance at the screen and see a long list of missed texts from Mom and just as many calls from Cami. I quickly scroll through Mom’s texts.
911.
I fell. Hit my head. Lots of blood.
My fingers fumble to dial Mom’s number as I sprint to my truck. She doesn’t answer so I call Cami in New York.
Cami answers right away. “Hello? Rhys?”
“What happened? Is Mom okay? She won’t answer.” I jam my keys into the ignition and peel out of the parking lot.
“I don’t know.” She sniffles. “A paramedic called me trying to find some family member to talk to when they couldn’t find you. They took her to the hospital.”
I pull an illegal U-turn, redirecting my course from Mom’s house in south Provo to the hospital southwest of campus.
Cami talks incoherently, switching between sobbing and shouting. Unable to make sense of anything she says, I cut her off. “Cam, are you okay?”
“I’ve been so scared, Rhys. Where were you?”
I pull into the hospital parking lot and take the first stall I see. “I was at work, earning money to pay for Mom’s meds.”
“Oh.”
“I’m at the hospital, so I’m going to go find Mom. You don’t have to worry anymore, okay? I’ll handle everything.”
She lets out a deep breath. “Call me as soon as you know anything. I can be on the next flight if you need me.”
We hang up, and I jog into the hospital. A receptionist directs me to Mom’s room on the third floor. She’s asleep when I walk in, a bandage on her forehead.
A doctor motions me into the hall and explains what happened: Mom fell and hit her head trying to go to the bathroom. Luckily she was using her cell phone as a flashlight, so she was able to call for help. The doctor recommends installing a hands-free lighting system as well as handrails so this doesn’t happen again. With such a fancy job, I’m sure he doesn’t realize all of that costs more money than I have.
Because Mom sustained a head injury, she has to have a CT scan to ensure her skull isn’t fractured. The CT reveals troubling results, so Mom also gets an MRI.
Several worry-filled hours later, the doctor walks into Mom’s room to discuss her test results. “Good news,” he says. “No internal bleeding and only minimal swelling. You have a urinary tract infection, but antibiotics will take care of that.” Dr. Williams sits at the end of the bed. Not a good sign. He’ll be staying awhile.
“And how are you holding up, young man?” he asks.
“Fine, thanks.”
“Glad to hear that,” Doctor Williams says, then turns to Mom. “I’ve reviewed your chart, and it appears you’ve had a decline in motor function over the last several years.”
“Yes,” Mom says.
Understatement of the century. Since moving to Utah, her health has taken a nosedive.
Dr. Williams laces his fingers in his lap. “Ms. Solario, your RRMS—relapsing-remitting multiple sclerosis—has developed into SPMS—secondary progressive multiple sclerosis.”
When Mom was first diagnosed, the doctors said there were four types of MS. I rack my brain, trying to remember which type Dr. Williams is talking about, but nothing comes.
He turns to me. “Your mom has had a gradual worsening of at least one of her symptoms—in this case, mobility, over the last year.”
Mom glances at the wheelchair in the corner of the room.
“Was she diagnosed wrong before?” I ask.
Doctor Williams shakes his head. “No. About 85 percent of people diagnosed with RRMS later develop SPMS.”
Anger swells inside my chest. “Would this have happened if she had started taking her meds sooner?”
“It’s impossible to say. MS is an unpredictable disease.”
Frustration replaces my anger. There are never any answers. Only ambiguous facts. Mom deserves to know what to expect. To have medications that can offer her lasting relief.
Doctor Williams turns to Mom. “What we do know is that you’re in what we call an interim period.”
Mom adjusts the thin blue blanket covering her body. “An interim period?”
“Yes.” Doctor Williams shifts on the bed again. “You’ll still experience relapses, but the course of your disease has shifted. And you will have gradual worsening of your symptoms.”
Not good news. “So what do we do? Change Mom’s meds?”
“Unfortunately, no. With relapsing-remitting MS, we’re able to address relapses by combating inflammation with steroids. But with secondary progressive MS, there are no treatments available to slow or stop its progression.”
“What? No.” Mom sits up in bed. “They said we could control flare-ups with meds.” Mom curls and then uncurls her hands. “I thought . . . I mean, I’ve been taking my meds again; shouldn’t I get better?”
“Not exactly. Taking the medication will help alleviate the severity of your symptoms caused by the relapse, but they won’t prevent the disease from worsening over time.”
Mom slumps in her bed.
“It’s important to stay positive.” Dr. Williams encourages. “Remember, you have MS; MS doesn’t have you.”
When Mom was first diagnosed, she said a variation of this phrase a million different times to Cami and me. And early on, MS didn’t have Mom. But then she went off her meds, and over the last several years, it did get her.
Doctor Williams straightens a small stack of papers and then shuffles them into a large envelope. “I’m going to leave some material for you to read tonight, and we can talk about any questions you have tomorrow morning before you’re released.”
* * *
An hour before Mom is scheduled for release, a financial counselor appears at the door and leads me down the hall to her private office. My heart rate spikes as I sit at her desk.
She picks up a manila folder with Mom’s name on it and flips through the pages. “Correct me if I’m wrong, but it appears you and your mother have been paying for everything out of pocket?”
Didn’t see any other choice. I nod. So does the counselor. And then we both look at the bursting file of unpaid bills.
“You don’t have to take all this on yourself, you know. There are other options.”
Not with my schedule. I physically don’t have more hours in the day to change anything.
“I printed these off for you.” The counselor slides a file across the desk.
I pick it up and look inside. “What’s this?”
“Help.”
Call me cynical, but . . .
“Your mother is eligible to receive assistance.”
“More than Medicaid?”
“With the help of Medicaid, much more.”
Sounds good, but everything requires a price. “Go on.”
“There are several assisted-living homes in Utah.”
“I’m not going to drop my mom off at some home.” That’s what Dad would have done if he had stuck around. Put her in some dirty home with people who don’t care about her.
“I’m not saying you should drop her off and never look back,” the counselor says. “I’m only suggesting you help your mom search for a place where she’ll be comfortable, happy, and safe.”
Safe. Whether she means it or not, she’s implying that Mom isn’t safe living on her own with me as her live-out caretaker. Maybe she’s right. I should’ve insisted on moving in. But even then, I can’t be there all the time. “Even if she wanted to move into a home, I can’t pay for it, and neither can she.”
“Like I said. Help.” She nods at the file clenched in my hand. “You don’t have to make any decisions now. Just read the information and consider your options.” She pauses for a moment and then hands me a smaller stack of papers stapled together at the top left corner. The bill. “There’s help, Rhys. You just have to be willing to accept it.”
As I walk back to Mom’s room, the reality of the situation consumes me. Mom needs help. A lot of help. More help than I can give her.