How your brain feels at its darkest place
The challenge with mental health is telling your story. It’s easier with physical illness to describe what’s going on: “My leg is broken, I can’t walk on it and it hurts”. For pain, they have created that handy dandy emoji scale. But how do you explain anxiety, panic attacks, suicidal ideations? How do you explain how your brain feels? How do you explain how you felt last week compared to this week?
Over the course of my illness I’ve gone through three stages of analogies telling my mental health truth to my doctors, psychiatrist, therapist, insurance company: Lost in a cave, Adrift in the ocean, and Stuck on a rollercoaster. I use these to explain my good days and bad days and how I feel when suddenly I lose the foundation and go from fine to agony. In honor of mental health awareness month and for those families and friends who don’t understand what people are going through, I decided to share the inside of my brain.
At the beginning of my illness, I started with the analogy of being lost in a cave. Some days there’s a light in the distance and I feel like I’m following a rope. It’s not great but I have hope and I’m heading in the right direction. I can tell myself “if you just follow the light and the rope, you will get out — one step at a time.” But then all of a sudden, the rope is gone, the light is gone and its pitch black. You try to tell yourself “this won’t last”, but seconds feel like hours. You try to tell yourself, you are safe, but you don’t feel safe. You are hypersensitive to everything around you, all your senses are heightened and you feel everything. Maybe the light will come back, but maybe a crack opens up below you and you fall — all the foundation is gone, your sense of direction. You don’t know where or how to go from here. All you feel is despair. At that moment, I hold onto one thing with all of my heart and energy — my family. But even that doesn’t always work because your brain plays tricks on you. Your brain tells you — while falling down the hole — that your family is better off without you, that you are exhausting them, that you are making them depressed, that you are ruining their lives. Your brain screams out for you to let of the last bit of rope that you don’t even realize you are holding. Then all of a sudden for no reason, it passes and there’s a light, you feel steady and you start heading along — hopeful that this is the last time and you are going to make it out of the cave. Some days the lighter is bigger and brighter than others. Some days you are in the dark. You don’t know when it’s coming or what you are going to get one day to the next.
As my symptoms became more complex and chronic and as I started to get a handle on it, I shifted to an analogy of being lost at sea. My symptoms moved from acute all the time to coming and going. This made me think about the waves in the ocean coming and going. Some days I have a plan and I’m headed for shore. I can’t see the shore but I know I’m headed in the right direction. I feel confident I’m going to get there. Other days I falter, I question if I’m headed in the right direction, if I can make it, but I keep going. Then there are days where I’m treading water. I’m starting to panic. I’m not sure what to do. Life is overwhelming me. The waves are too big. It’s not about getting to shore or making progress, its about just holding steady. Finally there are days where I’m physically drowning- I’m taking in water, suddenly I have a backpack full of rocks and it takes everything I have to stay above the water. Just as I think its the end, a calm comes and I’m treading water again.
Are you starting to see a pattern here? For me, there’s no consistent mood, no tells. I don’t know what I am going to get from one day or one hour to the next. So I developed a new analogy of the rollercoaster. My psych nurse (assigned to me by the insurance company who calls me every week without fail to see how I’m doing) recently commented on how I seemed to be handling things better. So I hit her with the rollercoaster analogy.
When I first started, suddenly I was on a rollercoaster and I was gripping for dear life. I didn’t know which way it was going to turn and it just went. I didn’t know when I was getting dips, drops, corkscrews, upside downs, tunnels, water, sharp curves. I was whipped all over the place with no control and just hoped to god that my safety system held. It feels awful. It doesn’t matter whether you stay in bed, hide in the bath, go on a walk on the beach, the rollercoaster inside goes with you — all you can do is reduce as much stress from other areas of your life so that you can focus on the rollercoaster and distract yourself with whatever you can. But back to the psych nurse. The reason I appear to be doing better is that over the course of the year I have ridden every part of that rollercoaster and I know what it feels like to corkscrew or bank left. I don’t know when its coming but when I hit it, I have coping mechanisms now and I know my safety system will hold — no matter how bad it feels. I still am knocked for six and lose days at a time. The pain and fear is just as bad but I know I will survive. I know when I need to take a bath, play gin rummy, go for a walk, be left alone, or kept an eye on.
Fundamentally I want the cave, the water and the rollercoaster to end. I am sick of the ride. I don’t know what it is causing it and may never know. The latest theory is toxic mold. If someone told me 18 months ago that I’d still be on the ride- I don’t think I would have continued- my brain couldn’t cope with that. So here’s my final analogy that I use with myself.
A couple of weeks ago, I was struggling and needed a distraction so we just got in the car hoping that would help and decided to head to the tulip fields. We were driving along the highway and ahead the clouds got darker and darker. I started to panic — we didn’t bring rain coats, it was sunny where we came from, I thought that we made the wrong decision and should turn around and started to spiral. But we kept going. We were in the middle of a huge storm — so big that the wipers couldn’t keep up with the rain, the sky was black, it was thundering and it felt endless. But long story short, on the other side of the storm was the most amazing rainbow and an afternoon of glorious sun in the tulip fields. An afternoon that I couldn’t imagine while in the middle of the storm — an afternoon that we wouldn’t have had if we turned around or if I had never got in the car in the first place. Right now, I’m in the middle of the storm and I can’t see the other side.
Over the past year, I have learned so much about my self and found strength I didn’t know I had. I’m starting to realize that the light at the end of tunnel or the shore (my 2019 self that I keep trying to get back to), doesn’t exist anymore and that going back won’t help me. Accepting who I am and the life I’m living and finding the new me is the journey I need to be on. And maybe the end goal isn’t land, maybe there’s a hot air balloon in another direction, maybe I have to down further in the cave to get out. I don’t know but I continue to hope that a rainbow exists on the other side.