By Kath Gifford
(after Dr Ginsburg)
Dr Karen Gallaty, CBT Professional Psychology Clinic
They don’t know exactly what causes Sarcoidosis, but they know stress exacerbates it, so the clue, showing real competence, is to avoid stressful situations.
We’re told we need the skills to face challenges but not how to deal with face challenges, when the cheek drops to jowl, eyelid droops, partial paralysis, like the numbness from the dentist’s anaesthetic, on the day soup was on the hospital menu.
You don’t know how debilitating it is, or quite how incompetent you feel, not being able to whistle, how much you suddenly want to whistle, instead blowing noiselessly like a child through a weakly shaped O.
This doesn’t work when your legs frequently give way. Resting equals seizing up. You jokingly mime winding a crank to stand up, but this is no longer a joke. Knowing if you fall, you’ll be lucky to get up within 10 minutes, the bruised knees taking several weeks to recover have nothing on the bruised ego. Humiliation does not equal confidence.
This was written pre-Covid, pre being diagnosed with Sarcoidosis, pre being orphaned at 51. Connection to reality – cut. Connection to normality – cut. Connection to your body – cut.
Unfortunately, steroids make you doubt who you are with their gift of mood swings and weight gain. As a character in your own life, you no longer have script control or editorial input.
When you can’t even contribute to your own home, you wonder if you will ever be able to travel, let alone impact on the wider world. So you write.
Sadly it is the condition that creates those challenges. Catch 22 or what doesn’t kill you makes you stronger.
Less elastic bounce, more memory foam, falling back into the indentations of your life. Control is accepting you have no control. The drugs attempt to control but there’s still the flare ups with their curved balls. Like humans believing they can control fire, warming, cleansing, destroying.
The 7C’s of Resilience – The Patient
This would place 1 through 7 if it were a competition.
I blame my father’s employment through my childhood for this addiction, when working for an American company of intergalactic aspirations (Mars, Milky Way, Galaxy), Friday was staff sales day.
Although my hormones long since abandoned this sinking ship, I still crave chocolate without monthly restrictions. Even as a vegan, there’s now no shortage of options, with many copies of traditional confectionary competing, if not improving on the original.
Cacao, cut with cayenne and cardamon (the drug reference intentional – one Belgian chocolate maker once created a device to snort cacao powder), is used in South American shamanistic rituals. I find Booja Booja truffles will suffice.
Other meditation apps are available, but with this one, Eva Green can read me a bedtime story. And although being goal driven is probably not conducive or compatible with calm, I like seeing how many days in a row I can go without forgetting to do my ‘Daily Calm’.
When you google ‘benefits of calm’, top of the suggestions is ‘benefits of clams’. As a vegan this isn’t much use, and first of the attributes is ‘great for male fertility’, but I am intrigued why this was a suggestion. Obviously the same programmer who works out the substitution options that supermarkets give you when your choice is unavailable (no grapefruits but perhaps you’d like some grapefruit shampoo, a bunch of roses instead of the chocolates?). I do like the line of research ‘Why being calm is a superpower’ but converting to an Avengers or Superhero name is still eluding me.
As I’ve mentioned, stress can kick start Sarcoidosis. The goal is definitely Keep Calm and Carry On, with of course, as above, Keep Calm and Eat Chocolate.
Other fabric softeners are available.
My brain lumps, in lay person’s language, are also pressing on my hypothalamus, the body’s smart temperature control centre (multitasking with releasing hormones, controlling appetite, regulating emotions etc.) which caused near melt down in the summer. This is now cold comfort, but I have moved in to my Oodie (a giant oversized furry hooded top come blanket), designed to control the desire to turn on the central heating before November.
Bonus C’s in this category are contentment, convenience, consolation, compassion, and cheer. But being told to ‘cheer-up love’ is a whole other rant.
Unfortunate in my childhood associations with the comedy brothers (who knew there were actually four of them). But many cliches are true, and laughter is a great medicine, and one contagion I don’t want to mask against.
Bouts of laughter have been proven to boost the immune system, relax muscles, aid circulation, and protect against heart disease, also lowering anxiety, helping mental health, improving mood, and increasing resilience. All down to the release of endorphins, which have a similar effect to narcotics, but much cheaper in many ways.
The study of laughter both physical and physiological is called gelotology which sounds more like the study of ice-cream, and a way to get it into a list of my C’s.
Contentiously a bit of a marmite subject, but I love both cats and dogs, and marmite and coriander.
I could not own one due to the danger of tripping over it, and the smell (and meatiness) of the food. But this does not stop me from knowing the names of all our neighbourhood cats and unable to resist a pop-up cat video. A quick search of this subject shows I’m not alone. According to research there are more than 2 million cat videos on YouTube, which have been watched more than 25 billion times. Three quarters of cat-related media observers do not actively seek out cat content but happened across it during their daily internet usage. So they say. It’s estimated that 15% of internet traffic is driven by cat videos. It might not be quite what Cerf, Kahn and Berners-Lee envisioned, but maybe there is some hope for humanity.
Watching human videos is fine for your cat but as they have three times the light receptors in their eyes, please turn down the brightness on the screen.
Not all conditions are curable, but we live in hope that a cure may be discovered (and tested and approved) in our reducing lifetime. We know there are ‘wonder’ drugs for our illness out there, with no guarantee of success, but are more expensive than the cheaper ones we are started on. It’s a trial-and-error process we are warned. A trial of both medicine, and location lottery.
As well as ‘curing’ a disease or condition, its homophone in the world of crafts is to harden with some additive or other agent, like epoxy resin going from a liquid to a solid. You are always advised to factor in longer curing times.
Varnishing, shining the surface that everything is okay, to vanishing and that elusive combination of drugs, or cure.
Creating a new world in which we can adapt, or it can adapt to us. Creating a new vision of our future in which we can live. Creating opportunities, not challenges.
Conquering cheerfully, converting cannily, changing consciously, constructing capably, chancing courageously, resiliently.