Photo: Eva Wieners
I am lying on the bathroom floor. I can’t get up. I try to move my legs and push myself up from the floor, but my body just won’t budge. I can’t seem to talk either—my tongue just isn’t responding to my brain’s instructions anymore. I can hear my six-year-old daughter calling me. “Mum, are you OK? Mum?” The only thing I can think is, Don’t come in. Please, just don’t come in right now. The last thing I want is for her to see me helpless and vulnerable. But I still can’t move. “Mum?” She slowly opens the door and peeks in. I can see the panic in her eyes when she sees me. But I can’t control my face—I can’t even muster a smile. She comes in, hugs me and lies down beside me. “I’m here for you. It’s going to be OK!”
Unfortunately, this isn’t a freak occurrence. And, unfortunately, my daughter has become a master at helping me through these episodes. I suffer from severe migraines, which manifest themselves in a variety of unpleasant symptoms—from dizziness to nausea to partial paralysis—and can last from several hours to weeks. What started as a strange side effect during pregnancy didn’t end when my daughter was born. In a good month, I’ll have one or two attacks; in a bad month, I’ll have many more. During my worst episodes, I lose control of my body and my ability to speak; sometimes I pass out briefly. And that’s before the pain even begins.
Parenting in these situations is an immense challenge—a challenge I feel that I’m failing. Every time a migraine sets in, our roles switch—instead of me taking care of my daughter, she steps up and takes care of me—and this tears me up inside. She should not have to worry about me constantly—I should be tending to her scraped knee or nursing her through a bad cold. All too often, she is the one comforting me.
Migraines are a serious chronic disease that is still not completely understood by science. It’s a frustrating, shape-shifting pain that affects millions of us. According to the World Health Organization, about 15 percent of the world’s adult population has suffered from migraines at some point in their lives, those between the ages of 35 and 45 are particularly prone to them, and women are twice as likely as men to suffer from migraines. I am among the unlucky few who suffer from acute migraines. I don’t know what might bring one on or how to fully avoid them. Preventive medications cause new side effects, and countless changes to my diet and alternative-medicine therapies have done nothing to reduce the number of attacks either.
Over the years, I’ve learned one thing: I just need to endure them.
For me, the worst thing isn’t the pain itself; it’s the fear. It looms over my family’s daily life. Migraines set my family’s agenda. Every morning, I wake up and check for symptoms. Any dull pain? Any dizziness? Any pain around the eyes? If there are any symptoms, I try everything to stop them from getting worse, from drinking lots of fluids and forcing myself to sleep to taking painkillers and avoiding stress. On these days, there can be no loud noise, no wild playing and no outings. I can’t count the number of times that we’ve had to change plans or my daughter has had to spend a day amusing herself because I was too occupied with trying to avoid another attack.
My attacks usually last a couple of days, but once I had a migraine that lingered for three weeks. Of course, daily life can’t just stop when a migraine sets in and my daughter can’t put her needs on hold for such a long time, so we’ve had to find ways to muddle through. Watching a movie with the volume down instead of a story, having dinner at the neighbour’s house and spending long hours playing outside with her friends have been some of the strategies I’ve used to uphold the illusion of a normal life for her. But, of course, it’s not the same.
If I haven’t suffered an attack for a while, she makes sure that I don’t let my guard down, that I eat on time and that I always have my meds with me. Sometimes I feel like she is more mature than me. She asks the same big questions I ask myself every day: Why? Why do I have to go through this? Why did this happen to our family? I have no answers.
But on the good days, I try to spend as much fun time with her as I can. We are both quite active and love the outdoors and nature, so we are out and about whenever possible. Whether it’s long hikes, trips to the pool or visits with friends, we make sure that the good days are really good days. And when an episode begins, she deals with it with amazing sensitivity. Over the years, she has developed two strategies: If my partner or my mother is around and she sees that someone is there to take care of me, she’ll retreat to her room and play quietly. But if we are alone, she steps up and becomes my caregiver. She has found my emergency pills for me more times than I can remember and has brought me water and food. Sometimes she just sits with me and touches my forehead gently.
As sweet as this is, these are the moments that also worry me most, as this is not a role she should have to play. She should never have to pick up her mother from the floor. But this is our reality. We have no choice but to find a way to get through this together.