Gillian Shirreffs uses poetry, prose and white space to explore lived experience of a chronic neurological illness.
This is part three of an essay published in four parts this week.
I have a consultant now. When we meet he performs the familiar battery of tests on my numb body. I fail the heel, toe, heel, toe one with style. He orders an MRI.
When we meet again he shows me backlit pictures of my brain and spine. He uses the tip of a pen to point out white speckles and calls them lesions. He confirms I need to have a lumbar puncture. Later, in a room the size of a cupboard, a different doctor inserts a needle into my spine.
When we meet for the third time, there’s a file on his desk with my name on it. He tells me he is sorry. The evidence is conclusive. I have multiple sclerosis.
It’s RRMS. The relapsing remitting form of MS. I’m told most people start out this way. I’m told it’s characterised by attacks of new or increasing neurological symptoms. I’m told these attacks (relapses) are followed by periods of partial or complete recovery (remission). I’m told during remissions symptoms may disappear. I’m told during remissions some symptoms may continue and become permanent. I’m told in a matter of weeks my immune system should stop attacking my brain and spine. I’m told the body is clever. I’m told it’s quite possible the body will be able repair the damage that’s been done during a relapse. I’m told bed rest will help.
My body is clever.
My body will repair the damage.
Some of the things the internet teaches me:
dysphagia: difficulty swallowing. Some people may be completely unable to swallow or may have trouble safely swallowing liquids, foods, or saliva.
spasticity: a feature of altered skeletal muscle performance with a combination of paralysis, increased tendon reflex activity and hypertonia.
neuropathic pain: pain caused by damage or disease affecting the nervous system. May have continuous and/or episodic components.
dysesthesia: abnormal sensations. Impairment of sensation short of anaesthesia caused by lesions of the sensory pathways. Discomfort or pain caused by contact with normal stimuli, e.g. clothing.
I hate when things touch me. Bed clothes. Actual clothes. My mum buys me loose fitting leisure wear for when I have to leave the house: hospital appointments, physio appointments, visiting Uncle Charlie. Uncle Charlie has colon cancer. A specialist gave him three months to live fifteen months ago.
When friends come to visit me, I get out of bed and go downstairs. I prefer to have notice, but some people are spontaneous. Friends don’t know whether to hug me or not. I’m glad when they don’t. Friends are maniacally upbeat. ‘You would never know!’ they almost shout. ‘You look really well!’ they almost shout. As magical neurological spectacles have yet to be invented, the shards in my hands, the Tweedledum-ness of my form and the absence of floor under my feet are all invisible. Talk is mainly of the small variety.
you are huge
as you sit
on the Laura
I see brows knit
faces turn flint
if I even hint
to the recumbent
in the room
if you were
you would be
as you sit
on that chic
by Laura Ashley
Others don’t visit. They phone my husband. Or when they bump into him in the supermarket, they send their best regards. Others send cards. One lady, who’s a friend of a friend, drops off a bag of DVDs. They’re copies of foreign detective programmes I’ve never seen. I binge watch them on my laptop, in between long bouts of looking stuff up on google and playing solitaire.
I decide that when I’m better and someone else gets sick – with something I don’t know how to talk about or be around – I’ll drop off a stack of really good DVDs.
It’s a Saturday. It’s the last time I’ll talk to Uncle Charlie. It’s the last time I’ll see him before they increase the morphine. It’s a cold and clear morning. My husband is taking me for a drive. We drop in to see Uncle Charlie on our way. I tell him we’re heading down the Ayrshire coast. We talk about years back. Camping holidays. Day trips. Uncle Charlie says we should go to Croy Shore. That we should walk along the beach. I’m not sure I’m up to it. But we go. We walk along the beach.
And the tide turns.
I feel wet pebbles, cold and sharp under my feet.