R is scarred from her forehead down to her toes.
Some scars are barely noticeable, a flash of red or white against her skin tone. Some are raised and pink, with the hope that they will flatten and fade over time. Then there are the deeper scars. The burn scars like thick purple rope, curling round her legs. The bumpy scars that change colour, purple to red to white according to how much exercise she does. The ortho scars, violent marks across her skin caused by drills and hammers and pins. Massive dents that are now stuck to the bone and no amount of massage will free them.
Scarred skin looks hard and sturdy but it’s not and the fragility of it terrifies me. Every infection is an invitation for the skin to break down and disappear. The skin grafts and the skin graft donor sites are equally susceptible. She’s had so many infections. So many graft breakdowns and skin failures due to infections. Loads of infections that end in -monas. A few -coccusses. Some ending in -sis.
And because we have to look for the positive we celebrate that at least the infection leads to the best possible bed on a ward – isolation room. Ah, the joys of quiet and solitude.
Every rash that appears is examined closely. Is it a heat rash? Allergy? Eczema? Infection? Every eczema flare up has to be managed and monitored. What would normally be dismissed as a bit of dry skin is instead monitored and then moisturised until it’s under control. Anti-histamines are taken even day. She has flucloxicillin ready to take in case an infection flares up over the weekend or at night.
We have drawers full of creams and ointments, all called Latin and Greek compound words that mean sod all to me. One cream for her scalp. One for her face but not her eyes. One cream for her eyes. One for her neck. One for her body and limbs. And these also terrify me. She’s covered in paraffin creams and ointments and then sent out into the world. She knows not to go near anyone smoking, to stay away from the Bunsen burners in the school labs due to the fire risk, but you can’t guard against everyone.
Be aware. Stop, drop, and roll.
I throw away clothes after a month because of the paraffin build up. I change the bedding four times a week and boil wash it all.
Then there’s the reason for the creams. We decided early on to stay away from Doctor Google. She has access to the experts in their field. Her consultants answer emails and return phone calls and explain things to us as many times as we need until it sticks. Why use Doctor Google when we can talk to the best doctors in their field?
And yet …
When she wakes up crying in pain, unable to move because her skin opened in the night and then scabbed over again, that’s when I wonder. Whether the hour I spent last night creaming her and massaging her did any good. Whether all the blood tests and allergy tests were worth it. Whether the creams are the right ones. Whether the steroid creams are damaging her skin more than helping.
If there’s a better cream out there for her.
And that’s where all my resolve to heed the experts falls down. What if, what if. What if there’s a cream that will clear up her eczema, even out her skin tone, smooth out her scars, take away the pain. I want it for her.
Got any snake oil? I’m desperate, I’ll buy it. I’ll snatch your hand off.
The papers are full of miracle skin cures. Who am I kidding, it’s the Daily bastard Mail that’s full of miracle skin cures. The day they sang the praises of some baby moisturiser, I was straight down the chemist. I could have cried when I got there and saw a huddle of others round the shelf, all of us easy marks for these PR puffs disguised as news.
But what if it works and I didn’t try it?
Today I was at the Farmer’s Market. I had a tenner. I was going to buy some meat when I saw an olive oil stall. Front and centre was their cream. Natural olive oil, beeswax, rosemary. 7 quid for a tiny tub. Of course I bought it.
Because what if it worked and I didn’t try it?
Getting through the day pain-free is hard enough for R on a good day; but when her skin flares up she can’t even get out of bed. Between my desperation buys and the prescriptions, something has to work. All natural, organic, paraffin free, paraben free. Steroids, chemicals, perfected in the lab. I don’t care. Every square inch of pain-free skin is a victory.
When Rs skin is inflamed it’s not only the pain that keeps her in bed. She hates people seeing her when her facial scars are inflamed and wants to hide away. She does go out, but she sticks to the background and that is so hard to see. Being a teenager is hard enough, and this just adds another layer of hurt and awkwardness to it.
Rs skin will never be perfect. It will struggle to even be classed as good. The real battle, the battle she fights every day, is to love and accept the skin she’s in.