The journey back isn’t a Hollywood blockbuster. There are no explosions. No world-destroying earthquakes. Denzil Washington doesn’t turn up with a cartload of braille Bibles to point out the right way to go. There are no maps. No signs. You are entirely alone in the quiet, unassuming task of getting back on your feet, and the act is nothing spectacular. It doesn’t warrant any fanfares.
In Terry Pratchett’s Discworld, there is a Dark Desert, with miles and miles of “brilliantly-lit black sand, under a black sky studded with cold bright stars, stretching away to distant mountains (where judgement awaits).” Thousands of souls pass each other, all walking the same desert, but they never see each other. They just keep walking towards what they hope will happen, locked in their own time.
For a while now, I have been, metaphorically and physically, taking that long walk back home.
It began with Autumn arriving. Almost overnight, the leaves on the horse chestnut tree next door began to turn a bright, yellowy-orange, and the fir in the front garden began to turn blue in preparation for winter. Red berries briefly appeared on the bushes near the driveway before being eaten by fat woodpigeons, and the nights began smelling of leaves and bonfires; the sea air feeling chilly in the dead of night, a cat cuddling up to my dressing gown for warmth.
After a successful cortinsone injection into my ankle joint, walking has become much easier. This is the second one which has worked; and it’s worked miracles. Today, on the way to the back garden, I kicked through some leaves to entertain Stimpy. This time last year that wouldn’t have been even close to possible, and I’m very aware of the difference both cortisone and Methotrexate have made to my life.
I’m not running marathons; I still need the stick for balance and still struggle to pick things up. S still has to do most of the cooking, although I’m helping more and have cooked a few meals alone recently. I still have bad days. My health is currently compounded by Methotrexate doing the exact job it’s supposed to do; suppressing my immune system, reducing the white blood cells and calming the inflammatory response when my immune system attacks the joints.
That side of it has worked very well and I have far more movement in my fingers, neck and wrists than I did even a few months ago, however, lowered immunity means bacteria and infections have almost free reign and infection can be very difficult to treat. I’ve found this to be the case for a while now, with repeated infected cysts and tooth abcesses – which require constant antibiotics as the infection returns as soon as they’re stopped – as well as mouth ulcers, swollen gums, losing clumps of hair to the shower drain, and difficulty urinating.
It has increasingly been a case of weighing up the pros and cons of taking a disease-modifying anti-rheumatic drug, but so far the ability to walk and go outside (the wheelchair was causing me too much anxiety; I left it at my mother’s house) and have that small shred of indpendence back is more than worth dealing with anything Methotrexate can throw at me.
So. Slowly, the road is leading me back. It’s a little scary to know how long I’ve felt… muffled by life. With hindsight I can see how the combination of moving in with S after living with my mother – albeit with brief breaks – in the same house since I was born, the psoriatic arthritis symptoms becoming chronic, difficulty getting diagnosed again, so many tests and hospital appointments I lost count, all built up to set a sequence of events in place which, really, I should have seen coming. I have never dealt well with crisis.
Moving away from my mother was emotional in a few ways; my time at the quiet suburban semi was often fraught, she and I fought like cats, refusing to budge on any subject until I became uncontrollable and set to destroying whatever I could get my hands on (my early teens) or saying the worst things I could possibly think of (my later teens) and the majority of the time I lived there was spent sequestered in my bedroom like a hermit, refusing to come out except to go to the bathroom, binge, or, in the later years, smoke. Sneaking down at night to use the phone to call whoever I happened to be dating at the time, trying to break into my mother’s bedroom – she installed locks – to find my confiscated medication.
I slept all day and tiptoed around like a ghost at night, flicking through Teletext at 3am, smoking out of the window, eating everything I could get my hands on and purging silently in the garden.
Despite our lack of relationship, I was nevertheless hugely reliant on my mother even if I didn’t believe it at the time. Without me knowing, she steered me through the important parts of life; albeit in a way which wasn’t always right, but she always tried. A few years ago my mother stopped speaking to my brother, C, after he never repaid her a large debt despite being able to, and yet she has never given up on me despite the years of carting me to psychiatrists, sitting in the ambulance with me on the way to A&E after overdoses, the shouting, the ignoring, sitting up all night waiting for me to come home as the police helicopter passes over me, never stopping.
She says the difference is that I try to fix things.
I am back in therapy. Somewhere along the road was a stumbling block and I was too busy enjoying my new-found freedom to notice before walking straight into it. Overnight, agoraphbia strolled back in and set up camp without so much as a greeting and, as a result, I am back to sending S on small errands I could do myself and staying indoors for days if no appointments are due; however, I’m adoring being outside once I get through the front door. This is new for me, and I’m not sure how to make myself go outside even though there’s nothing I want more than to put my boots on and crunch through the piles of fallen leaves down the street into the village.
Despite this, the future looks bright. Or brighter, at least. For the first time since I can remember, thoughts of a possible future are beginning to creep in. Reading has become pleasurable again after being used as a distraction from unwanted thoughts and crippling boredom for a long time. S and I bought a new mattress and we’re back to sleeping in the same bed every night; he kisses me in the morning while putting his shirt on for work and I wonder how I didn’t go crazy sleeping in the spare room without him, with just the cats for company. I suppose I did in a way.
I had a meltdown. That’s why I’m back at therapy, really; my GP referred me after seeing the cuts I’d made on my right arm with a scalpel and hearing from my mother – I couldn’t find it in me to talk and needed somebody by my side – how I’d “spiralled downhill” since a difficult hospital appointment and overhearing an argument between S and a friend in which my so-called friend called me “lazy” for being unemployed; despite him having witnessed the illness at its worse on a number of occasions. There was more to it than that, but… I flipped. Took a scalpel and harmed myself for the first time in, well, a long time, and certainly the first time since moving in with S. I have never self-harmed with him around, and when he came inside and saw me sitting on the bed with a bloody towel inexpertly wrapped around my arm and mascara everywhere, he panicked and we argued. We both said terrible things.
We made up and the relationship actually feels even better, but ever since that day I’ve been struggling in a number of ways. Friendships are becoming difficult again; S and I are invited to a close friend’s wedding on Monday and I’m terrified of having to cope with, well, other people. Even those I know. I worried I won’t pull it off. It’s a long time since I did anything truly social and since I stayed away from home for the night (we’re staying in a hotel) and I suspect I may be more nervous than the bride.
I don’t know. I’m just trying to grab any shred of confidence and push along the road, because what’s the alternative? Another year in bed, on the sofa? Another year of sleeping through the day, seeing S only briefly in the hallway? That was never what I wanted, and nor was hiding inside my flat day after day, week after week, nervously emerging only for appointments and to see my mother once or twice a week.
It feels better to be on the road than off it.