My daughter is an angry sleeper. After waking in her own bed and coming to us for comfort, she fights for stolen teddy bears with tiny fists and feet, offering anguished cries between my husband and I before finally settling back into a restful slumber. But by that point, I am awake, having taken the brunt of her sleepy battle. I lie in bed and think of my own struggles, which are enough to create restless sleep on their own.
I cannot fight battles of my own anymore, as I am struggling with a chronic illness that is turning me into someone I barely recognize. Though my condition defies easy diagnosis, it is most easily described as a severe form of hemiplegic migraine. That means constant headache interspersed with stroke-like episodes that make my left side go weak to the point of paralysis. Those episodes happen daily – often multiple times a day – and can result in lingering weakness for days at a time.
Bodies are mysterious, even to the people who inhabit them. We walk about every day in our bodies, feeling at once one with them and separate from them. Just look at our language: we say “my leg is killing me,” as though the body is somehow separate from the self and capable of attacking the self. When our bodies stop working, we search for a diagnosis to tell us what is wrong and how to treat it. We want certainty – we want our bodies to be like our washing machines.
But bodies are not washing machines, and for many of us, our illness remains mysterious. Neurologists will tell you that when it comes to migraines, medicine is still very much like throwing darts. Brains are so very unique, and our understanding and medicines so very nascent in many ways, that our treatments are rather blunt instruments that we are using somewhat clumsily. We borrow treatments from all fields – I am currently taking drugs meant for epilepsy and alzheimer’s – to see if they will work.
Increasingly, we are seeing the connections between diet, psychology, environment, and medicine. All of these things must be approached together to treat the whole person, for the body is, after all, not separate from the person, but integrated into a whole. When dealing with chronic illness, we must also consider the stresses of daily life. In addition to my health worries, I am overwhelmed with the crisis management of it all – I am faced with disability claims, the prospect of not being able to work, home finances, not being able to drive, and how to get the kids to and from school. And that doesn’t even touch the larger concerns of whether I’m managing to parent effectively, how all of this is playing out on my children, and whether my husband is getting enough support for himself.
Most days, I feel as though I’ve been thrown into an ocean and asked to cobble together a raft from pieces of shipwrecks and seaweed. Every piece of that raft – every good day, small success in diagnosis or treatment, trip outside the house – is hard won, and has a cost. Sometimes the raft feels as though it might sink, sometimes it threatens to fall apart, and so I spend most of my days tending to its weaknesses. Meanwhile it drifts with the currents, pulled by forces I can neither see nor control.
Someday, perhaps, I will manage to make a sail.