Someone is dying in a room down the hall. There are whispers, but I don’t catch the whole story, only that sometimes this nursing home is a hospice. Other times it’s a storage facility for the old and sick. I’m in one of the places that seem better, with an understaffed nurse-force constantly on the move. They take our vitals, give us medication in small plastic cups, and help us shower once a week, more if they have time. Cigarettes breaks are three times a day. This is where some of us come to get better. The rest of us are running out of time.
The days bleed into weeks. I think I’ve been here a month. My first outing off the property is a trip to my neurologist. With a straight face my doctor says he’s starting me on the only drug available for progressive MS. Progressive? That wasn’t what he was supposed to say. I packed a bag ready to be readmitted to the hospital. I had plasma floisis when steroids failed in the past. A previous doctor talked about straight chemo. I was prepared for these options. Stem cell treatment could make me worse, he says. It could make me better, he also says, like it’s an expensive coin toss. I don’t know how to ask the right questions. He’s still talking, but it’s all so clinical and matter of fact. I don’t cry until I leave his office.
It seemed like I was having a flare up, but several MRIs showed no new lesions in my brain or spine. Steroids did nothing. I can’t walk. I slur some of my words. The pain hasn’t eased up. These are signs that my disease is getting worse. I am 42 years old with progressive MS.
This isn’t how it’s supposed to go. I’m in the nursing home to get better, but the hope starts to disappear. It’s not a magic trick, it’s me who is starting to vanish. My driver is from Spain. On the way to my appointment we talked about Europe and how different life is over there. Four-hour lunch breaks. A little brandy in the morning. That’s how it was in the Balkans. I told him about stories I wrote as a journalist, and other adventures that were once regular parts of my life. He told me about trips to Greece and a daughter who’s the reason he stays in America. On the way back we said very little or nothing. The present eats the past in one bite, and the future is coming for me. I am sicker than I thought I was.
I understand the cries of the sick. They almost seem like a foreign language to doctors and nurses. Help me. Help. The chant is repeated by an older man in a wheelchair at the nurses’ station. Down the hallway a woman yells out a similar cry. She doesn’t know where she is. She wants to call a husband that I’ve never seen visit. She doesn’t know where she is, she says again. Why is no one helping? Her confusion scares her but doesn’t stop her from calling for help, even when there really isn’t any.
There are three nurses and a small staff of orderlies on the floor for a full house. There are medication schedules to keep track of. A doctor who makes short and occasional visits. She’s asked the nurses if I’m after pills. No one would come here just for painkillers. The nurses and my primary care doctor vouch for me. I look like I don’t belong here. The bigger problem is I don’t want to belong here. I live in a nursing home with no clear exit plan.
My neurologist said a lot of people have had luck with Ocrevus, the medication I start next month. Eventually it will all get worse, and there is little or nothing I can do. The plan is to watch me over the next year. There is a difference between primary and secondary progressive MS, but there’s no good news behind either curtain.
Everything my doctor said becomes blurred. Maybe I heard wrong or didn’t understand. Almost nine year ago I was diagnosed with relapsing remitting MS. My first neurologist said I would go through the five stages of grief. She said you have to grieve for yourself. You are losing yourself, she said with sympathy, wearing her perfectly pressed white coat and standing with ease at the foot of my bed. She left literature I never looked at. I’m back to denial and seeking out a second opinion.
My boyfriend Slim brings me the throw blanket from our living room and a pillow from our bed. His visits to the home are getting shorter. The next night he says he can’t come. He’s too tired and he says it’s depressing. We fight in a way we don’t usually fight. I don’t know if he can love the person I am becoming. I don’t think he knows either. Even when I leave here, it’s only a matter of time before I’m back someplace just like this, before I’m worse. I want more time. I want this fight to go on forever.
We’re caught in a cycle of holding on and letting go. The next time he comes to the nursing home he brings tacos from our favorite Mexican restaurant. He wheels me outside and sits on one of the benches. I face him, hold his hand, and we don’t talk. I smoke cigarettes from my wheelchair. We still don’t talk. He takes a sip of my Diet Pepsi. We search for normalcy in silence. I tell him he can leave, and I hate the look of relief that washes over him. We almost break up. It’s not his fault. He says he’ll come with me to get a second opinion. I’m not sure he knows what we’re up against. Like every visit, I’m waiting for him to leave, praying he won’t.
Back in my room he crawls into bed with me. He holds me tighter than I thought he would, and we make up intimately behind a thin curtain under the fluorescent lights. He leaves me with what feel like empty promises, and says to stop pushing him away. He waits until I stop crying. He says we’re in this together, but we’re not. Sickness is lonely. Sickness is all around me, destroying me. He won’t know what to do with the pieces that are left. We have a future filled with visits. I’ll go home. But not tonight. Not tomorrow. And not the same. Giving up will be the hardest thing he has ever done. We are in the waiting room of bad luck and unfair outcomes. Visiting hours are almost over. I hate the pity of his goodnight kisses, and I roll over so I don't have to watch him leave. Slim, I want to call out, to beg him for just a little more time. Instead I yell, Asshole, hoping he'll come back to my room, trying to give him something worth fighting for.