Sarcoid Years: A poem for your troubles
A bout of pneumonia 12 years ago was the start of my life with sarcoidosis
Sarcoidosis: my scan showed I had some scarring and what the consultant called nodules, near the base of both lungs. File photograph: Science Source/Getty
I had pneumonia in May 2005. It hit me in the lead-up to mine and Susan’s wedding. It wasn’t helped by the fact that, until a doctor told me to lie down and do nothing but take pills and drink water, I continued my creative-writing classes, despite coughing up the occasional burst of blood while teaching. I wasn’t one of those people who got sick. After two rounds of antibiotics the pneumonia receded, but as I retained a slight rattling in the lungs I was referred to University Hospital Galway for a scan.
It showed I had some scarring and what the consultant called nodules, near the base of both lungs. It was likely an autoimmune malfunction called sarcoidosis; my lungs were attacking themselves. Like most people, I had never heard of sarcoidosis, although the experts say it’s relatively common in Ireland. I was sent for a lung-function test that revealed I was now using only 77 per cent of the oxygen I take in. Nothing too serious. After a few other tests they put me on a corticosteroid inhaler and told me that nobody knows what causes sarcoidosis. In most people it burns out after about 18 months.
For the next nine years I used my inhaler twice a day. And although the cough persisted, always getting a little worse during heavy, close weather, sarcoidosis was not a major part of my life. These were the years when Susan and I built our writing careers, publishing first books and giving readings in the United States, the UK and Greece. We also built our business and became the largest provider of creative-writing classes in the west of Ireland.
During 2014 Susan noticed the cough was a bit worse; I was also tired a lot, although I put that down to dealing with the aftermath of my mom’s death. I made an appointment at the hospital. A test showed I was now using 61 per cent of my oxygen intake. A biopsy confirmed that what I had was sarcoidosis.
I was put on steroids, which didn’t work at all but do, I accidently discovered, combine in a most interesting way with champagne
Since then it has been a central character in my life drama. I was put on steroids, which didn’t work at all but do, I accidently discovered, combine in a most interesting way with champagne.
I am currently on hydroxychloroquine and methotrexate, which are both also prescribed for rheumatoid arthritis. Methotrexate is sometimes used, in much higher doses than I am on, in chemotherapy; it knocks me out when I take it every Saturday. I am on a range of other drugs to counteract side effects.
At last count I was using 46 per cent of my oxygen intake. I break into a sweat walking quickly up the stairs at home. I need a two-hour lie-down every day. Libido is greatly diminished. Anything that requires more than shallow breathing is a challenge. Some days I feel I never properly wake up at all, although this autumn I will again be teaching seven creative-writing and poetry classes, as well as organising, with Susan, the regular Over the Edge literary readings here in Galway.
Most of my recent poems have been satires on the crazy state of the world. I love all that. Just wish I had more energy for it. My next lung-function test is in October.
after Günter Eich
Sarcoid hours, the big blue dressing gown
your flag flapping about the town hall of you.
Your dream is a man running for a bus
and catching neither it nor his breath.
One o’clock is a book fallen open on your chest;
two is the cat nagging briefly at the door
then giving up.
Sarcoid days, twelve pills
on a Saturday. Last month’s calendar
on the wardrobe door,
here where it’s permanently before.
You clamber from the pit
of your weekly coma, coughing up chalk.
At the stethoscope your lungs are autumn
leaves under old brown slippers.
Sarcoid years, your alarm wakes
the tiny bird outside,
the one your cat’s been trying to assassinate.
White phlegm indiscreetly into a hanky.
Calcium depositing itself here, there.
You are a developing bald patch
that spends alcohol free weekends
avoiding direct sunlight.
A bitten finger nail over and over again
telling a room this story’s name.
As well as organising Over the Edge literary events, Kevin Higgins teaches poetry workshops at Galway Arts Centre and creative writing at Galway Technical Institute, and is creative-writing director for NUI Galway’s summer school