I have this stupid condition called ankylosing spondylitis. It’s an autoimmune disease, which means my body is at war with itself. In AS, you develop inflammatory arthritis in the spine, the sacroiliac joints, and sometimes in the hips and other joints. The inflammation can get into your rib cage, your eyes, your gut, and, in some cases, your kidneys and your heart. When the inflammation is bad, the pain gets intense, and the fatigue gets crippling. I have fallen asleep at my desk. I have felt like my blood and mind both are made of cooling amber. I have wept in pain that meds cannot always blunt.
My rheumatologist says I have a ‘heavy burden of disease’. I quite like the poetics of that phrase. I’m less thrilled with its meaning.
I’ve got some difficulties. My mobility is poor, so I need forearm crutches to get around. The pain can range from a deep nuisance to unspeakable: that is, the pain gets so severe that I cannot speak. The fevers are tiresome. Learning to ration my energy, which can be copious one day and nearly non-existent the next, is difficult.
I am a bloody-minded cuss who just wants to get things done. Increasingly, I cannot do things on my own — cook supper, for example, or buy the groceries in the first place, run the vacuum cleaner, wash the car, mow the lawn, shovel the snow.
The condition is leaving marks on me. My gait is the obvious one. My face is often distorted with either a pain-frown or with some bloat from one of my medications. My right eye sustained some nerve damage from another med and sometimes needs to be patched; the vision is variable. I cannot get out to most events, parties, readings, concerts, book launches, or plays, because I haven’t got the energy, or because I am in too much pain. My physical world is shrinking: home, dayjob, pharmacy, hospitals, doctors’ offices.
I’m not sure I have one.
Plenty of people get sick. Many of them die of their illness; an online acquaintance of mine with ankylosing spondylitis died last week. He was about my age. Maybe that’s the spike today, the need to consider not just death but meaning. I’ve been here 42 years, roughly half the lifespan a Canadian woman can reasonably expect. I also have some very long-lived relatives. I do not expect to die of my AS but instead to suffer it out and perhaps enjoy some sort of remission if and when new meds become available.
I didn’t expect to get sick in the first place, either. What we expect has little relevance here.
A friend gave me a book of Latin proverbs, translated into English. One that kept showing up in different Latin sentences but with the same English translation: It’s later than you think.
Another friend quoted Tolkien to me on my birthday:
“I wish it need not have happened in my time,” said Frodo.
“So do I,” said Gandalf, “and so do all who live to see such times But that is not for them to decide. All we have to decide is what to do with the time that is given us.”
Turn your nose up at Tolkien if you like. One thing Lord of the Rings is about is sickness: addictions, complicities, degenerations, sacrifices. The quotation, and the impulse behind it, is charged with meaning for me. My kind friend went on to say she thinks I’ve done good things so far with the time that’s been given to me.
I’m not sure I’ve done enough. No, I am sure: I have not done enough. I’ve been given a sickness, but I’ve also been given time. I think what I need to do now is distill more of what sickness is teaching me into my work – into raising my children and writing my books.
A worst-case scenario for ankylosing spondylitis is fusion of the spine. The body tries to wall off inflammation and diseased tissue by calcifying ligaments and setting off new bone growth. This is the “ankylosing” part. My spine’s pretty stiff but not fused. This possibility scares me, the fused spine business, but what scares me more is a different ankylosis: a walling-off of heart and mind. I am afraid of becoming some draughty fortress of despair. I am afraid of giving in.
So I won’t give in.