The Mountain Range I Travel

I’ve been thinking about autism a lot lately – how its talked about, it’s symbols. Specifically, the puzzle piece comes to mind.

I remember when the puzzle pieces seemed meaningful. I remember when I thought this disease was like a puzzle.

In a lot of ways, the analogy fits. Everything we have tried to help ease the effects of autism claimed to be the missing piece – the one piece that would make the puzzle whole.

I’ve come to learn that autism isn’t like a puzzle and there is no missing piece. Autism is most like a series of mountains. You climb up one side only to slide at light speed down the other side.

Into the valley.

People, guides, come into your life for one mountain, but not another. No technique, no skill seems to work twice. Every hurtle is a mountain. There is no runner’s form to prepare you for each coming uphill battle.

Perhaps the only way to survive is to adopt a posture of serenity and responsiveness. I imagine myself centering after each bump in the road, not engaging with the battle, but stepping outside of it.

The truth is that I have the ability to press pause while the battle rages. I can climb the hill and overlook the scene. I don’t engage in every fight like it is my life on the line or at least I try.

Maybe this is a good thing. Maybe not.

It’s the way I’ve found to cope – to carry this grief. There is no missing piece for which to quest. This isn’t a puzzle that can be solved.

This is the mountain range I travel.

Candidly,

Ash

Honor the Girl Inside

I used to push through things. Difficult things. Easy things. Dwelling on problems or negatives didn’t solve anything. I had to keep going.

After my stay in the hospital that all changed. In therapy, I was able to recognize that part of the reason I wanted to end it all was that I had pushed through things too many times. I was living a life that I didn’t want.

For most of the time since then, going on four years, my goal has been to listen to myself and honor the things I feel. For several years, this meant waking up to suicidal thoughts, sharing them with my husband and him staying home or calling a friend to stay with me. It hasn’t been an easy road.

These days, I don’t wake with suicidal thoughts very often. I believe a steady practice of listening to myself has helped me create a life I want to live.

Like (probably) many people, I still have days when I wake up without motivation, not wanting to do the things the day requires of me. Today was one of those days. It has me walking around sad, consuming caffeine to feel strong and equipped for the next thing. It hurts to push myself, but maybe sometimes that is okay?

Harder than pushing myself is discovering what I need, because it feels incredibly like something is missing. So I go through the motions and I try to listen to the sway of my feelings, while still keeping up with the day. I find this to be infinitely harder than the pushing onward.

Honoring the girl inside.

THAT is the real struggle in these days.

The Sound of Anxiety

Breathe in. Breathe out. Relax. 

This has been my mantra of late. Anything that helps my foot stop tapping incessantly is kosher. Seriously, I’ll be sitting and reading to relax and my foot taps. It drives me nuts! 

I swear its like my leg has been possessed by some march written in cut time. Think “76 Trombones led the big parade…” from the music man. Except faster. 

I try anything to distract from the tapping, which means I’ve been doing lots of cleaning. (Yet, we are still being invaded by bugs seeking homes for the winter.) The incessant tapping has led to incessant doing and I feel no better. 

The funny thing is when I stop my toe from tapping my thigh and calf will begin clinching to the beat. 

 The beat is anxiety. 

It’s a crazed jazz mashup with a sousaphone march. This is how anxiety feels. 

I think the hardest part of anxiety is that it doesn’t really stop. Sure, there are times when I’m overly anxious about a circumstance or event. Then, there are also times when I’m twitching for no reason at all. My brain seems to think we are being chased by a bear or something. 

There is no bear! No catastrophe. 

Just the grating of radio static. Anxiety is noise when there is no sound. It’s desperately waiting for the world to end, but then discovering that the world will go on and on for thousands of years. Meanwhile, you are still waiting. 

Still tapping your foot to music that isn’t there.

 

Candidly,

Ash

Sepia-toned Rainbows

I worry that my medication affects my ability to write. It has me so stable that I don’t feel those highs and lows anymore. I miss them. I never thought I would miss those vicious swings, but I do.

The rational part of me says this stability is a good thing. I really can’t argue with her. She points out things like functioning well and making good decisions. She tries to remind me that I wanted to die so badly that a lot of times I needed someone with me. She has lots of good points.

Then there is the side of me that feels things. I don’t want to call it the irrational side, because I don’t think feeling is irrational. She says to observe my life and see if I notice the beautiful things just as much as the difficult things. I don’t. I see glasses half empty all around. She says to pause and see if you can sit in silence doing nothing. I can’t. She says to whisper sweet nothings and play with the children. I can’t.

I believe this is the point where maybe someone who is bi-polar considers going off the medication or cutting back.

It’s so hard to live life in sepia tones when you’ve been full spectrum for so long.

Perhaps this is the hard part of being diagnosed at 34 years old. I have lived a good amount of life in the struggle and in the beautiful. What if stable isn’t what I want? What if I want the ups and downs?

What if I can’t have them?

Candidly,

Ash

Small Hurts, Big Lessons

I scratched my eye.

It hurts and waters and, in general, makes life miserable. Who would have thought that something so small could make such big waves in my life?

This reminds me that even our smallest hurts, pains and fears must be recognized and felt. Like the splinter that is never removed, they can become infected and an even larger pain.

I think this is part of what happened with me. I never attended to the small hurts and pains in life. I think of the disappointment I’ve often felt in myself, how I didn’t want to feel it. Instead I became angry with myself as a way to mask the pain, but this only made the pain greater.

My therapist once described it as hurting myself, then taking out a hammer and hitting myself again.

Pain on top of pain.

I think disappointment with myself has been the most difficult small pain in my life. The hardest thing to sit with and feel.

I’m still learning, but I need these reminders. Reminders not to belittle myself, to feel the pain and let it guide me.

Because pain can be a guide.

Pointing us toward change, showing us our sensitivities, teaching us what works and doesn’t work.

Yes, the scratch may hurt, but I’ve learned not to wear my contacts for months on end. I’ve learned to give my eye a break so it can be healthy.

Maybe I can feel the scratches to my heart, but learn to take care of myself in a greater way.

Candidly,

Ash

Around the Spiral Stair

Someone wise says that life is like a spiral staircase. We just keep coming around to the same problems, but each time we are closer to the destination.

That feels very real to me today.

Rhese was referred for speech services today. They truly do not think it is autism like Evan. Yet, we are playing catch up once again.

I remember when Evan was referred for speech. He had no words and he was much younger than Rhese is now. If you told me then that he would never speak, I would not have believed it. I was optimistic and felt like the therapy would help.

I feel that way again.

Except.

I’m also feeling the foreboding that is natural with doing something a second time. I feel like I should be worried. Perhaps, deep down, I am underneath. Perhaps I was worried deep down, underneath with Evan. Perhaps all of the optimism is just a sham. A way of coping? No. A way of not feeling? Probably.

How do I crawl beneath my façade? How do I find what’s really inside?

Inside I worry that Rhese has ADHD so badly that he is missing things already. I worry that maybe he won’t start kindergarten like a normal boy. I worry that he will be categorized as the ‘rambunctious’ or ‘bad’ boy. I worry.

I am sad.

I am sad that I have to worry again at all. That, for just this once, I could have smooth sailing. I’ve done all the worrying a soul can do.

And so all I have is low-grade fever of sadness and the words of The Beatles song to comfort me….

Let it be.

Candidly,

Ash

Mysteries of Sadness

The sky is cloudy today and that is how my heart feels. Clouds of sadness come and go.

Why am I even sad?

I wonder if I am the only one who experiences mysterious sadness. I don’t even know where it comes from until I sit with it for like ten hours. Perhaps that is how badly I had boxed in my sadness. I used packing tape on all sides of that box.

I wonder if there will ever come a time when all of my past sadness stops bubbling to the surface.

As I sit with this sadness today, I know it is about being enough. I have seen other children grow so that their autism doesn’t affect things as dramatically as Evan. I have stood next to moms and hashed out the problems. I have done the things they have done.

But he isn’t cured. He isn’t healed.

And I can’t help wondering if it was me.

Maybe I didn’t push hard enough, try enough.

Maybe it’s me.

Maybe I don’t have to buy into those thoughts.

But what would that even look like?

I cannot say.

Candidly,

Ash