Quite a stormy week actually. The news of Robin Williams passing hit hard. Because he meant a lot to me growing up. Oh captain, my captain. He was a wild and wise teacher, forever Peter Pan (as in Hook) who encouraged us to forge our own path. Write our own verse. Carpe Diem.
For weeks now, I wanted to write about depression. But I couldn’t find the words. Because naming them gives them power. And yet, naming also takes the power away. Sharing stories is power too. I don’t know whether my journey with depression is part of who I am, or if it’s fallout of my neuropathy.
My chronic challenges lead to pain and stress. Which lead to chemical imbalances and fatigue. Which leads to depression.
I know the sharp edges of darkness. I know undercurrent tugging always deeper. I know the thief in the night who steals away bits of my soul. I know that bleak landscape. Where stormy seas stretch to all horizons. And I don’t even know which way to swim anymore…
It can last a day. Or a week. I have had episodes that drag on for months. It’s exhausting and scary.
When I heard about Robin Williams, I was sad and shook up. Sad for his loss. But also because I got it. I understood. And that was scary too.
Because I hear sometimes, “How is that possible? Don’t they know?”
And it’s not about knowing. It’s about feeling like “I can handle this.” Until you can’t. And medicine takes time. Medicine is its own crazy rough seas. I’ve tried some medicines that feel worse. Some medicines lead to further exhaustion or anger or migraines. Medicine is no quick fix. By the time I am willing to take that step, admit that I’m out of control, mistakes have been made. Damage done with friendships and family. Tension with work commitments or unanswered emails… Add to that aggravated CMT symptoms- clumsiness, fatigue, numbness, pain.
I heard that Robin Williams was in the early stages of Parkinson’s Disease. My heart ached for him and his family all over again.
A disease with no cure? A disease with no cure is the scariest beast, the sea serpent brushing against your toes in deep water. And you don’t have a miraculous escape. You don’t get a secret weapon. You don’t even get a battle. You just lose yourself. Day after day you lose abilities, skills, strength. And you know it won’t get better. It only gets worse.
It’s terrifying. It’s the truth that we face every morning. And we face our challenges with humor. With creativity. With support.
And we have good days. I’m not saying that days don’t have magic and blessings. We do ‘get better’ relative to tough days. We have moments of joy and celebration. My photography and storytelling is a quest to catch magic. But it’s hard. It can be the hardest thing. To feel spent. And keep moving forward. I admire us.
So many people have inspired me over the years. They make the monsters feel smaller, more manageable. They give me strength. Even when they don’t realize, with a smile. A kindness. An understanding comment. It can be as simple as, “Rock on” or “How can I help?”
The power of community lifts me.
I want to pay that forward. I’ve been in I’ve-got-this space. I can handle this. I got this so good, you don’t even know how hard I’m working…
And that’s awesome. Sort of. But the fierce defiance isn’t going to help anyone. Not even me, eventually.
So in the spirit of authenticity… Truth. I want to be real.
Taking care of ourselves is not a luxury. Not a sign of weakness or strength. Taking care of ourselves is a necessity.
Sending light to the world.
May we all find sheltering shores.
Many, many kind words have gone to Robin Williams and his family. Let me add mine to the collective. Thank you for your inspiration. Your creativity. Your laughter. You will be missed.
Second star to the right, and straight on til morning…