I’m sitting in my bedroom on holiday break, cozy in my blankets and watching yet another episode of Parks and Recreation. I hear my mom come home from work, opening the front door with her keys, stepping inside and taking off her jacket and shoes. She asks my step-dad what he wants to do for dinner, and suddenly I can’t stop crying. Why am I crying, why am I sad? I cover myself in all the blankets on my bed, turn up the volume on my laptop so I can hear Leslie Knope’s optimism, and remain there until I figure out why I got so upset by what seemed like nothing.
My mom is alive right now, but I’m grieving as if she’s not. When I heard her voice from my bedroom, I realized I’d be missing it someday. I know there will be a day when I won’t be able to be with her anymore, a day where I won’t be able to ask her questions when I can’t remember how to clean my oven or how to refill prescriptions or when I had a bad day and need a cheesy joke from her. That day is sooner than it should be.
My mom has Primary-Progressive Multiple Sclerosis, and it can be life-threatening. Her diagnosis means that not only does she have a disease that makes her immune system attack her nerve cells, but her specific MS, as it’s often called, is the type that never takes a break (or goes into remission). There is no medication for Primary-Progressive approved in the United States yet. As MS progresses, the few options for treatment are extreme. As of now, she’s going through chemotherapy to try to slow down the progress. The hope is that by killing her immune system, it won’t be able to hurt her anymore. It’s not working yet.
The first time she and I talked about her diagnoses was about a year ago in early 2016. She needed a ride home from her friend’s house after having a little too much to drink, it would be the first time I saw her drunk. I wonder what was going on that caused her to drink. I hopped in my car, turned on my favorite Passion Pit playlist thinking my mom might like it too, and headed over to her. I expected the ride back home to be fun. When I arrived to her friend's house and she made it to my car, she immediately started rambling on about bad phone calls from doctors. My brother, who has a history of hospital stays because of lung problems, was undergoing testing for genetic diseases. I wasn’t shocked by this. However, when she said, “The doctor said I have MS, and that’s scary,” I realized my brother wasn’t the only one who was sick.
Learning that my mom had Multiple Sclerosis in that way wasn’t ideal. I didn’t know what MS was and she wasn’t ready to explain it. There would never be a great way to hear it, though, and I wouldn't have comprehended an explanation right then anyway. My mom, the same woman who everyone reaches out to for help with anything from how to raise kids to how to re-tile floors, was sick. Is sick. Even now, after analyzing copious amounts of information on the disease, it baffles me how one’s body can start attacking itself, and how my mom had been living with it for years without us knowing. At this point, it’s not about understanding the disease as we don’t know if we have enough time to stop it. We’re learning how to be grateful for the time we do have, but I’ve been struggling with that.
I’m sitting in the passenger’s seat of my friend’s car, listening to Adele and looking at the way the traffic lights reflect on the cars ahead of us on the interstate. My friend skips the song playing, and suddenly I am so angry I can’t talk. My skin is hot to the touch, my hands feel fidgety and I have no idea what is happening. Why am I angry? I sat back and listened to the new song.
While many of us know what grief is, anticipatory grief is less understood. It’s self explanatory though — it’s grief one experiences while anticipating something devastating. It’s not uncommon for people who have loved ones with serious illness, but I hadn’t heard of it until I was experiencing it.
The first stage of grief I experienced was disbelief, but that was easy. I didn't realize I was experiencing it. The second stage, anger, hurt. The smallest of things left me volatile. I wanted to question everyone and everything, and I got angry at the slightest change in temperature. It got to the point where I signed up for an appointment with my college’s therapist and my learning community’s therapist. I didn’t want to live my life feeling like I was a pot ready to boil over.
Both therapists gave me grief pamphlets when I told them what was happening. I rejected them, though. There’s no way I could be experiencing grief, I thought to myself. I have nothing to be grieving over.
It wasn’t until I moved past the anger that I decided to look into the pamphlets and the websites they suggested, and it was then that I learned about anticipatory grief. There are actual support groups in person and online for people experiencing it, and even a summer camp for children in my area who are going through it. While those outlets weren’t for me, it’s important to know they’re there.
While going through grief, I’ve learned how important support systems are. I’ve explained my situation to everyone I trust, and let them know I’d be needing support in the coming months and years. I also learned how crucial it is to express yourself. When my grief led to writer’s block, I felt stuck in every aspect of my life. I’m writing now to make my life move again.
I’m sitting at the desk of my scholarship advisor, telling her the latest news about my mom. She leans over and gives me a hug, and we start going over ways in which I will get through whatever is coming at me next. Then we talk about how I can make the most of the time left with my mom, starting with telling her everything I think I should every day, especially the I love you’s.
Lead Image Credit: Em Brandon