Miles ahead

Last week, January 14th happened and I missed it completely. I’m shocked, pleased, all manner of things. Mostly happy. It got lost in the flurry of finding my gorgeous new apartment and planning the move.

Compared to 4 years ago, this is a miracle.

What are you talking about, Sarah?

January 14th, 2001 was the day my Chronic Fatigue Syndrome started. Went to bed that night feeling fine. Woke up three hours later feeling like death. It’s usually the hardest day of the year for me.

This year, I forgot about it. I knew it was January 14th, and yet my brain didn’t even register the connection until today.

It’s kind of a huge deal

For the first 5 years, January 14th was brutal. I usually didn’t even bother going to school. The sadness would just overwhelm me – one more year where I felt abnormal, broken, a freak. Sick, tired and in pain every single day. It was like living the death of myself over and over again. I hated that day.

January 14th 2006 was the worst. As far as statistics go, no one whose had CFS for 5 years or more ever makes a total recovery. There’s never been a single documented case. You might get better, feel better, but you’ll never return to your pre-diagnosis state of health. It’s permanent, baby.

So you can understand why 2006 was the worst year. It was also the best year. Sort of.

Liberation

There was something liberating about the diagnosis becoming permanent. I didn’t have to rush around trying to find a miracle cure anymore. This was it. This was my life. I just had to pick up the pieces and move on.

Okay, so picking up the pieces was a heartrendingly painful process and I think I cried every single day for 6 months at one point, but slowly I picked up the pieces. Slowly I made some kind of peace with myself.

A tiny little bit at a time, I moved on. I began to rediscover myself. I began to dream again.

Building a house from scratch

It was like my life was a house, and it had been thoroughly demolished. My sense of reality had been flipped upside down. Everything I’d ever taken for granted was gone. It was like I’d fallen through Alice’s mirror. I was in the looking glass.

So I had to rebuild. I needed a new house to live in, a new life to inhabit. What did I really want? What did I really dream about?

Art

It was that year I decided that I was going to be an artist. I’d said it before, but I really got it then. It was the only thing left that mattered. It was one of the few things that stayed even when everything else fell apart. It was one of the things that brought me through.

Masked, © Sarah Marie Lacy, 2006. 16"x20" acrylic on canvas, NFS

I painted this that year. I rarely show anyone this piece, and it’s not on my website. I took it down because it upset people to look at it. Since I didn’t paint it for anyone but myself, taking it down wasn’t an issue.

It really scares people. I get that. It’s not even anything awful – it’s just a sleep apnea test. But that feeling – tangled up in wires, stuck in a hospital, uncomfortable, in pain, masked – that’s what my life felt like. Trapped.

The catharsis from this piece was amazing. And she’s changed over the years, in ways I can’t explain. Her eyes used to be severe, judging, harsh. They’ve softened recently. I can see a gentle strength there that I couldn’t see before. She’s no longer a reminder of the bad times, but a reminder that I made it through them. That I learned a lot. That I’m on the path I’m supposed to be on because of all that stuff.

My experiences give my work heart, passion, emotion. I paint because I learned how crazy, unpredictable, painful, beautiful, precious, fragile, and exquisite life is. I have a physical need to express that.

So every day, I get up. I paint. I express. And now I don’t even remember the day that my life fell apart.

Now that’s progress.