Christmas Lights

She was being very quiet and still as the car turned onto the highway. “Are you ok?” he asked, worried that this might have been a bad idea. “Yeah, I think so.” “Let me know if you want to turn back.” “I think I can do this.” “Ok.”

The night was very black, starless and oppressing. There wasn’t much to see in the dark except that there weren’t any other cars on the road. She imagined they were the only life left on the planet. Sometimes it felt like it, living so far out of metro in the woods.

She had asked for this ride. A year spent in failing health and pain had stopped nearly all her rides into town except to see doctors. The year before that they’d nearly lost a child in a hospital on Christmas. Who knew how long it would be until her own mother would die, laid up like a vegetable in a nursing home. It seemed like everything started getting hard and then harder and then tipped over an edge, like it could possibly never be easy again. Nothing was fun anymore. Nothing felt good or made her smile. She didn’t know how she could have any Christmas in the house without ruining it.

She used to love Christmas. She was the child that snuck out of bed every night to look at the lights on the tree, count the presents, and maybe steal a cookie. She was the adult who had stacks of cards ready to go by December 1st, sometimes even having them routed through a Christmas named town for special postmarks. She was the one who had all the goodies done up ahead and watched all the fun Christmas movies over and over. She even played Christmas music in the summertime and jumped on the Christmas in July sales, keeping carefully organized sacks in the closet for months.

Not this year. Not for several years. Ever again? Who could say.

“Why aren’t there any lights on?” she grumped as they passed lonely houses dotted across the hills and valleys of rural timber and farmland. “They were lit up last year.” “Maybe they’re not home,” he said. She could hear the quiet desperation behind his voice. He always tried to make everything ok. All they had to do was keep driving through the blackness. Just keep driving and hope the pain and nausea wouldn’t turn them back too quickly. Everything about riding in the car made her feel so sick nowadays.

“There’s one,” he pointed out. “Where? I missed it.” The house had been tucked back in the trees and disappeared as quickly as it had popped into view. “That’s ok. It wasn’t very good anyway. We’ll find better ones,” he said. She could tell that he could tell that she was already thinking that finding Christmas lights in the inky black countryside in the nasty cold with so much pain was a bad idea, but she was too depressed to go back home yet. She’d been stuck at home for so long, she needed to know fun and beautiful things were still going on outside of a television.

A few more minutes brought them to a smallish town that was sometimes described as a bedroom community to the city beyond because it had so much traffic with daily commuters. Oddly, there didn’t seem to be any Christmas lights here, either. “What’s going on? It’s after Thanksgiving, I thought there would be Christmas all over the place.” What she really wanted to say was ‘Maybe I’m in a parallel world or asleep and dreaming because it’s too surreal that we’re not finding any Christmas lights in a town all lit up with restaurants and pharmacies.’ “Let’s keep going,” he suggested. “We just need to find some houses. Do you think you can make it longer?” “Well, we’ve come this far, let’s go find a rich neighborhood, surely they’ll have some lights up.” But secretly she was turning her face away so he couldn’t see the tears already streaming down. She was hiding her pain and nausea with all her might, trying for once to give him a good experience back while he was trying so hard to help her have a good one herself.

But it was even worse in the rich neighborhood. Block after block of expensive homes looking so ordinary without any extra cheer was so dismal that she nearly gave up. “What happened to the lighting contests? Isn’t that the house I thought looked so cool because it was lit up like a gingerbread house when the kids were little?” She was so disgusted and angry now at all this fruitless effort, wasted time and miles, she nearly gave in to hatefulness and self pity that the pain was always nudging her toward, like a giant vat of nasty hot acid just waiting for her to splash into and corrode her soul into cold bitterness. She managed to veer away and quickly changed her next words to, “Let’s try that street where the guy you work with is.” “It’s someone in his family, it’s not him.” “Whatever. If he doesn’t have lights up, then something bad has happened and the world as we know it no longer knows what Christmas is or something. This is the weirdest Christmas light drive ever.”

In years past, they’d laughed about that guy being one of those obsessive people that spends thousands of dollars and works for months through the year getting his house and yard set up for Christmas. He even synced the lights to music and put a sign up to tune into a radio frequency as people drove by. It was quite annoying and clogged the street with traffic all night long, but he definitely knew how to make it feel like Christmas. On a night where it seemed like the entire world had forgotten to plug their lights in, he was their last hope.

“Is this the right street?” “Yes, see, there it is.” “Wait, THAT is his house? What happened?” She couldn’t believe it. The house and yard were lit up but there was no sign about the radio sync and the street was empty. It looked like he hadn’t finished yet, or perhaps had gotten tired and stopped after dragging half the boxes out. “Maybe something happened and he couldn’t get it all done.” They creeped by in silence, eyes wide, not laughing at how annoying it was, not saying a word. As they neared the end of the street he said, “That was weird.” “Yeah, no kidding.” She suddenly realized that being weirded out had distracted her so completely that she’d forgotten all about her pain, and started giggling. And he started laughing. And they couldn’t stop giggling and snickering through the rest of the drive all the way home, because how odd was it that the one night they chose to go see the lights, it was like the whole world missed a step and forgot to plug the lights in. “Oh, well,” he said as he turned off the highway onto their street, “there is always next year.”

‘If there is a next year,’ she thought. But she didn’t stop smiling the rest of the night because she’d gotten exactly what she needed- a really weird night of Christmas lights.

Note: Christmas hasn’t been normal since in my house. Every year we try to make it weirder than the year before, and we embrace the sadness that lurks through the dark looking for the lights.

When you feel grumpy about Christmas lights being out too early and ruining your day, please take a moment to think about the people who miss holidays because they are in hospitals, or stuck in their homes, and not everyone can time their lives to match the seasons. Look at the lights as if that’s the last time you’ll see them, and stamp them into your memory. We all take turns going through the dark, and you’ll need those memories when it’s your turn to miss seeing the lights.


winning the suck contest

This week Sept 9-15, 2013 is National Chronic Illness Awareness Week. Actually, I think it’s worldwide. And I think it’s being called Invisible Illness Awareness Week now –>

I have a special blog called spaz at for my ‘drag’ posts. I don’t write a whole lot of those for the public, but when I do, I make sure they don’t suck to read.

pill phobia at its finest –>

blinking in the light –>

walking in the air –>

I like it dark –>

I’m blue –>

aspie overload –>

I know it’s hard. Believe me, I KNOW.

There are two ways to look at life- selfish vs. selfless. The biggest challenge I ever had was figuring out how to cut through all the overwhelming pain, fatigue, and brain melts to be kind to other people. It’s so easy to fall into the dark pit where you think because it all sucks for you that the rest of the world owes you and has to excuse you. Um, no they don’t. No one owes you anything, and there is no excuse for treating other people badly, no matter how crap your own life is. I don’t care how unfair life is, if all you can do on this planet is whine and moan and treat other people badly, you suck.

I had to face this. I had to own the fact that I suck. I had to accept that life is unfair. You cannot truly go on until you take these things into yourself and digest them down into something you can turn inside out into being someone other people actually want to be around. (That sentence was a handful.) No one wants to be around you when you suck. And no matter who you are, life will always feel unfair. You don’t get context until you go through stuff yourself, and any time something doesn’t go the way you want it to, it sucks. Simple formula.

There is no contest. I’m not out to win My Life Sux Worse So You Have To Be Nice To Me More Than I Have To Be Nice To You. But some people ante up like it’s a contest. We each have a headache, mine sux more than yours, ok but mine is on top of this bad day I’m having, and we go on and on building up these monuments to our bad days. You know what? There is nothing more depressing than trying to win the worst day contest. Just everything sux, let’s move on to another subject, ok?

I’ve had 30 years of life altering suck. But I noticed some people have way worse suck than I have. I may live with pain levels that would have other people thinking suicide, but I’ve never been in a fire. I’ve never lost my own child. I’ve not yet had cancer. Yeah I’ve gone through stuff, but there is no comparison between me and someone who has been in a fire and had reconstructive surgeries and still all scarred up. They have their own suck, I have mine. Same with any other pain, grief, and despair. Sooner or later, I don’t care who you are, your life will suck in ways that you never dreamed would ever happen to you. The sucky stuff opens our eyes and hearts and challenges our souls.

I wrote a sorta lengthy post on my bluejacky blog a few years ago called “Synchronicity, Suicide, and the Eyes” –> There comes a point where we ask ourselves if being here on this planet is more about us being worth the air we breathe. It’s important that we get past that yawning black cavern of self pity and see the light around us. Even with full blown suck, I’m so glad I got the chance to be here.

Chronic Illness or Invisible Illness Awareness Week, whatever you want to call it, I’m glad another group is ganging up on the public because there really does need to be more thought out there about stuff all around us that we might shrug off or take for granted. For instance, I have difficulty pulling or pushing doors open in public buildings, so I need the little handicap button thingy. One year I had a lot of difficulty moving quickly and got smashed in a door in a big beautiful bank because the button was so far away from the door that even an able bodied person without pain would have to walk quickly. It hurt real bad and I cried. It was mortifying and embarrassing and brought all the wrong kinds of attention. There is no dignity in being bruised up by an automatic door on a day you can barely keep it together in the first place to run your errands. So yes, I think Awareness Week is fab and helpful and whatever.

But I’m just saying that we’ll get more awareness if we aren’t hateful and crabby and snotty about it. It’s important to remember that we are ALL human, and that we ALL need to be kind and good at communicating. Maybe it’s not fair that some of us have to do it through a fuzzy static of crap, but other people will listen better if we can be cool about it.

It’s very hard sometimes to be nice when everything sux and it’s overwhelming your brain. I know other people can find me a little shocking on bad days. So my contribution to Invisible Illness Awareness Week is to beg the public to please not take me personally, please blow my crabbiness off when the suckiness is taking me down, please forgive me for seeming like a jerk when I react to something minor, please understand that underneath my reaction is my horrified recoil when I look at myself and then the overwhelming depression that I’m ugly when I suck. I want very much to be wonderful and sweet and for you to like me, but some days that feels almost impossible. So please love me anyway, even when I suck.