I love to swim in the ocean, especially alone and far from shore. I am a great swimmer. I am practically fearless in the ocean.

I don’t swim very often. Stroking is a big range of motion – too much wear and tear on the shoulders. Plus, my flimsy body needs weight and impact, movements that will encourage balance and coordination and strengthen bones and collagen. Water exercise is a poor choice.

When I got diagnosed at age 33 and finally understood this had been the problem and PS it is unsolvable, I looked into the future and saw I could not live decades more with pain, fatigue and sickness like this. I decided I would try for four years to get better. I would try everything I could find, and if I couldn’t get to a level of pain that was at least treatable, a quality of life that I could enjoy a little (not much to ask for, no?), then I would like to die swimming in the ocean. 

I imagined I would take a handful of pills and wade into the cold Pacific off Manhattan Beach in the darkness some summer evening, and start swimming due south toward Catalina Island. Alone, in the calm cold peace, with my friends the manta rays who I had swum with many times, I would eventually pass out and drown. The idea of this comforted me tremendously in the depths of my panic over my hopeless diagnosis. Lying in the dark in bed, not sleeping as usual, in pain you cannot imagine, there was a beautiful way out of this mess. The decision of how long I would endure was mine.

My father taught me to love the ocean. Really, he was just trying to scare us, as usual. Make us into permanently petrified zombies that he could easily manipulate. More on him later. 

When I was very young, maybe five, we were in Hawaii. My father was also a great swimmer. He loved to free dive—that’s going under with just a mask and fins—and spear fish. That day, Father insisted my sister and I come along. I remember not wanting to. He rowed us out from the shore in an inflatable raft. Then he left us, drifting alone, anchored to nothing. We couldn’t see him anymore. Time passed. My sister and I went into a sheer white-knuckled, stomach ache panic about how we would survive. We had no water and no shade. We were little girls, and way too far away from the shore to swim back. Where had he gone? Had he drowned? Had he forgotten us? 

Finally, his head appeared. We were crying. We screamed at him. He laughed at our terror. We cried to our mother later. She never cared what he did to us. More on her later. 

This was no isolated incident. 

With no one to comfort me ever, I learned to manage terror and see it through to the other side, where sometimes you don’t die like you thought you would.

When I was six, Father took us on long ocean swims while on vacation in the Caribbean. No turning back. No whining. He didn’t care. Completely terrifying. I learned to manage fear. The beautiful, colorful tropical fish, the likes of which I had never seen, distracted me. So magnificent. They helped me be calm, as did the emerald greeny blues of the clear tropical water. I had never seen color like that. Mesmerizing. I learned to trust the ocean. I learned to love color.

When I was seven, Father made us go swimming with him way off the shore of Lanai. Really far out there. It was a gray day. The sea was rough. Me scared, heart pounding, as usual. Me meekly protesting, as always. You didn’t get your way with him. The ocean was so cold. Then, far off from shore, we were surrounded by a huge pod of dolphins. There were 30 or 40. They enclosed us. I saw a pregnant one. They sang to each other. Time stopped. It was heaven. My body completely stopped hurting. Wait, was I in pain that young?

Another time, I think I was nine, playing around in the pool, again in the soft humid air and sweet tropical smells of plants and volcanic rock in Hawaii, my father held me underwater. I struggled and fought. I needed some air. He didn’t let go. He held me under, until I stopped squirming. Then he let me up. I must have been confused about what had just happened between us. Then he did the whole thing again. Gasping for air, I looked at him. He laughed. I got out of the pool. In a deep part of myself, I began to hate him, which was the most totally forbidden crime you could commit in our family.

I was on the YMCA swim team from age 6 until about 15, when my joints couldn’t take it anymore. Swimming in the ocean all summer, until at 15 or so, my joints couldn’t take it anymore. The waves slamming into my body hurt. Walking on the uneven sand hurt. I couldn’t manage this heavy world anymore. I couldn’t drag the weight of my body around anymore. Fatigue was my constant companion. What was happening? No one cared. No one noticed how sick I was.

I tried to learn to Scuba dive, because I would do anything to please Father, but with my Ehlers body, I could not manage the equipment. I failed the course. Father ridiculed me endlessly for that. He got my siblings to scoff and snicker at me, too. Oh wait, he did notice how sick I was.

Fast forward.

Looking back at this period of my life, when I was diagnosed hopeless, contemplating one last glorious ocean swim, but knowing how things turned out, what should I whisper in my own ear?
 
Sadistic Father. 
With his broken collagen. 
Wish he’d abandoned us sooner. 
But you got rid of him a long time ago. 
You will never go home again.
Phew!

Life of suffering suffering suffering suffering.
Don’t lose your mind.
You already know how.
It’s a skill.

Amazing Doctor is coming. 
Fate decided this. 
He’s a dreamer, with imagination. 
A cowboy. A gambler.
He will be a handful, but you will be ready for him. 
You will have an adventure like you never imagined. 
He will love you like you have never known. 
You will not be so sorry you were born.

Excellent Husband is already here. 
He’s a dreamer, with imagination.
An artist, who understands color.
He already loves you like you have never known.
Although sometimes he needs a good kick. 

Men!!!! So much work!!!!

“Les hommes!!!!!!!!” my French friend taught me to say, leaning into it with an exasperated huff, complete with a fantastic French eye roll and French shrug.

It’s good to be alive.