We went to the beach to blow away the cobwebs.
Blue sky and sunshine gave way to an ominous cluster of clouds, carrying rain.
Fortunately, the boys were already soaked through from leaping through rock pools.
I took some photos of the sun splintering through the darkening clouds and bouncing off sea.
When my brain hurts, taking photos helps me escape.
It lets in light when everything feels dark.
It shows me beautiful things when my thoughts are ugly.
I love my boys completely.
My children, my husband; they are my reason for existing.
But love is not enough when depression takes the steering wheel.
I’ve lived a lifetime wearing a heavy coat of anxiety, tied in knots by OCD, tormented by low mood that makes me irritable and angry.
With each wave of depression I withdraw into myself. I stop trusting others. I see danger all around. I am tortured by intrusive thoughts that I dare not share.
I become hypersensitive to noise; the shouting/teasing/arguing between my children feels like rock hammers slicing at my brain.
This is why I take photos. This is why I write. To escape from the clamor in my brain. These things connect with a part of me that I like, that I’m proud of. And trust me, there is very little I like about myself.
So why don’t I do it more? Why don’t I take more photos? Why can’t I commit to a regular blog?
Here’s what I think. I think that my current medication is smothering me. It has wrapped a cloak of fog around my brain. It makes me feel clumsy and confused. It’s slows my thoughts. It makes me forgetful. My medication stops me connecting with that creative part of me that I like. It suppresses my ideas. Suffocates my energy.
And it’s ironic because medication has kept me alive through the darkest times. Medication has helped me challenge my childhood trauma. It has enabled me to cope when my first marriage ended and when my first baby boy Pablo became an Angel. It kept me level whilst going through breast cancer treatment during pregnancy. It has helped me find my sanity all those times when I was deeply depressed FOR NO GOOD REASON except that’s what my brain does every few months. It folds in on itself. It is hateful and scared and angry. It is broken.
Do I have suicidal thoughts? Sometimes. But I don’t want to die. I just don’t want to live like this. I would never leave my boys. But I can’t bear to feel like I’m failing them. I can’t bear hearing me snap in irritation because H is having a meltdown over my failure to produce a Spider-Man suit that ‘really sticks to walls’ or because his strawberries are too seedy… meanwhile L is talking at me and over me at a million miles an hour about his special interest until I literally can’t think a single cohesive thought.
Will this ever end? I suspect not. I’ve been mad as a hatter since I was a child. You can’t fix what I am. I say that not to be negative, but because I’ve tried numerous psychotropic meds. I’ve had all sorts of talking therapies. I’ve slept through hypnotherapy and joined countless online support groups. I’ve stayed up all night reading and researching, hoping to stumble across the elusive cure for my poor mental health.
Is there a light at the end of the tunnel? Maybe. I’m waiting to see a new psychiatrist. I’m going to ask to come off my current meds. Maybe I’ll try some new cocktail of super drug that can help me stay happy for more than a few weeks at a time.
What I do know is, being Autistic is not what’s ‘wrong’ with me. Yes Autism makes me more prone to mental health issues but it also makes me passionate, committed, intelligent, creative. It enables me to hyper focus. It makes me honest. It makes me loyal. It makes me authentic.
What makes me mentally ill, is being an Autistic minority in a world designed to meet the needs of the neurotypical majority.
What makes me ill is the stress and exhaustion from masking, so I can pretend I fit in.
What makes me ill is that honesty and openness are frowned upon.
What makes me ill is feeling like I’m a disappointment because I don’t want to socialize in groups and I don’t want to host big family gatherings. I love my family and friends, I’m just not like them.
What makes me ill is knowing that my OCD upsets people and makes them feel uncomfortable in my home. If only you could understand my conflict in wanting to be a relaxed and friendly host with the burning compulsion to line up your shoes or wipe up your crumbs whilst you’re still eating.
I know that I am complicated and difficult by neurotypical standards, but I’m not neurotypical. I dance to my own clumsy beat. Right now my music is muffled and my brain has invented new and destructive ways to cope.
I’m eating, eating, always eating. It doesn’t even matter what. The sensation of chewing and swallowing is like an addiction.
I am also compelled to pick holes in my face, actual holes. I know this is stupid. It hurts. It makes me feel ugly. I stay inside rather than let people see my face.
The old me would have drunk vodka to cope and lots of it. But I’m 6 months sober and safer/saner for it.
So for now binge eating and skin picking help me block out the brain noise while I wait to see whether my new shrink will understand neurodiversity or whether they will be as ill prepared, inappropriate and ambiguous as the last one…
If you got this far, thank you. I appreciate you listening.
Please don’t worry about me.
I’m too stubborn to give up.
And I have so much to be grateful for.
A husband who is strong, patient and kind. Who persists in loving me even though I’m a pain in the arse (his words!)
We share two beautiful neurodiverse sons. They make me laugh and shower me with love every day whilst teaching me how to parent uniquely complicated and challenging personalities like my own..
We are enslaved to our Cornish Rex cats. They are equal parts clever and naughty, gentle and loving. We four are besotted with these thieves of small objects and makers of bad smells.
And of course we have friends and family who I care deeply about and want to stick around for (even if I don’t always want to see them in person)
We also have family who don’t understand or support us. The scientific term for them is ‘Skeksis’. For these Skeksis I remain devoted to staying alive, simply to piss them off.
So what can you do?
If you want to help #bekind. Don’t judge. You haven’t walked in my shoes so don’t tell me how to wear them.
Look around you for there are many, many more people like me (neurodiverse and neurotypical) who are held captive by poor mental health. Don’t hide behind your embarrassment. They rarely ask for help. In fact they’ll tell you they are ‘fine’ and don’t need anything because we all mask sometimes.
Please look into their eyes. See what’s really going on. Offer specific, practical help. Take them shopping. Cook them a meal. Put on the radio and have a cleaning party in their kitchen. Accompany them to appointments. DON’T buy them a drink (it won’t help, trust me). Drive them somewhere beautiful for a walk. Take photos together of what you see….
Hopefully next time we meet in real life or in the pages of this blog, I will be in a better place.
Regardless, I will still be here. Still breathing. Still putting one foot in front of the other. Still tripping up along the way….