When was the last time you experienced a strong emotion? I bet that intense feeling was tied to a person. You might agree that those closest to us – parents, partners, siblings, children – have the deepest impact on our emotions. That person for me is my sister.
We will call her Simi here. Simi inherited a chronic and persistent mental illness from our mother. She was diagnosed in her teens, and I have been her sole caregiver since I was a second-year undergrad student. I’m in my late 30s now (at least on paper – I’m still 20 in my mind). So it’s been a long journey.
The best way I can describe what it means to be a caregiver is by using a roller-coaster analogy. Imagine you’re on a roller-coaster ride even though you’re terrified of heights. The ride is fast and turbulent. You’re in constant panic, your stomach is in knots, you feel nauseous, anxious and worried all the time. Sometimes, the ride slows down, and you feel better but also uneasy as you know it won’t last and you’re in constant anticipation for another unpleasant trip. Your loved one is also on the same ride. Unlike yours, their seat is falling apart, their seatbelt is not working properly, and their fear of heights is even greater than yours. So, in addition to your own discomfort, you are concerned with the far worse situation your loved one is in. You so desperately want to help and to alleviate their fears, but most times you feel powerless. And the ride goes on and on …
As most caregivers, I have been and will continue to be, on this roller-coaster of emotions. I’ve had ups and I’ve had downs. I’ve felt sad, overwhelmed, alone, anxious, worried, frustrated and tired. I’ve wanted to get off the ride many times, but my conscience has prevented me from doing so. When I reach those moments of intense negative emotions, I strive to remember an Ojibwa saying: “Sometimes I go about in pity for myself, and all the while, a great wind carries me across the sky.” It reminds me that this moment in time shall pass. And it has. Simi (and I) are currently enjoying a pleasant ride thanks to the determination of her psychiatrist to find the right medication for her. We can feel the warm wind in our hair, the pleasant sun on our skin. We can be bored, gossip about people, nap. You know, “normal” things. Most of all, I can enjoy her: my beautiful sister. I can chuckle when her black curly hair freezes up in Edward Scissorhands fashion when she gets up from bed. I can laugh as she tells me she’ll have to charge the ants in her basement apartment rent if they don’t move along soon. I can appreciate my husband’s comments like, “Oh, the Ritz is open!” when he sees me preparing Simi’s meals in the morning. I can feel pride when Simi’s nurse calls her “cute as a button.”
Ever since the ride has slowed, though, something unexpected has happened. I’ve felt strange somehow. Not (as) needed. Lost. I’ve been Simi’s caregiver for so long that it has become my identity. That is how I see myself. My main job in life has been to ensure Simi’s illness is being managed. Doctor appointments, crisis management, hospital visits, medication changes. These have been my priorities. My calling. My reason for being. Only I haven’t realized it until recently. So what now? What do I do with all this free time? All this empty space in my brain? All this unused energy?
Now I can feel the joy of curating my own path. The possibilities. One thing that I have been able to do is volunteer more. I joined a hospital board and am chairing one of the committees this fall. I’m also part of a research team examining the experiences and needs of caregivers to loved ones with mental illness. Through this research, I’ve learned that I am definitely not alone. In fact, there are millions of us out there. Struggling with our own, all-consuming rides. The “aha” moment for me was finding that the caregiver’s well-being is closely tied to their loved one’s current state. When their person is well, the caregiver is well. When their person is not well, the caregiver is also not well. It’s frightening to consider that an illness has so much power over so many people.
I also realized that attempting to create meaning is a luxury. Most caregivers are just trying to survive. So, giving them a voice through the research has been rewarding. Receiving a “mental-health champion” award was also nice.
Still, something is missing. I still have a lot of unanswered questions and unresolved feelings. Do we choose who we are or do our circumstances dictate that? Would I have chosen to be a caregiver? A mental-health champion? Or would I have chosen something completely different?
As I attempt to construct my identity, a lingering thought persists: What if the ride starts up again? Then what?
Clementa Stan lives in Windsor, Ont.