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Let me tell you a story.

When I was 17, I was living in a tiny rice farming village in rural Taiwan with my brother, his wife and new baby.

I was terribly, achingly lonely. There were not many people my age in the town at all – but those that there were, were in school, or preparing for university. They definitely did not speak English. My Chinese being shoddy, the only people I could really talk to were old people – who knew Japanese by virtue of Taiwan being a colony of Japan in World War II – or “mountain people”, the indigenous people who also knew Japanese (because they liked the Japanese better than the Chinese).

I was lonely. Very lonely.

So what I got to doing every day was bicycling over to a mountain I was fond of. I’d hike up to the pagoda on top, smoke a closet cigarette or three. Pray. Study holy writings (I’ve always loved religious studies).

I got to looking around and realized the mountain was even higher in the back, behind the pagoda. Full of tumbled bushes, weeds, trees. Taiwanese Jungle. I started to bring a cane knife (-machete) with me and began the process – one that would take me over 5 months – of whacking out a path all the way to very top of the mountain. The very top.

Sometimes as I struggled, whacking, pulling, cutting, heaving, I wondered why on earth I was doing this. Why I felt so bloody compelled to create this path. Why? When I’d be leaving Taiwan for sure, when it would go back to being bush. Who would use it, what was the point?

The only answer I could ever come to within my heart was that I wanted to. I wanted this path. I wanted to sit on the very top of that mountain and pray. That’s what I wanted. Waste or not, I reckoned, it was what I needed to do.

****

6 years later, when I was 24, I went back to Taiwan to see my brother. Out of old time’s sake, I wanted to visit my old mountain. I drove my scooter there (an upgrade from my bicycle!), Parked it at the base,hiked up to the pagoda. I thought that for sure my path would be gone – it had been 6 years, after all, but I wanted to check it out nonetheless.

And.

I found that someone – who? – had discovered it. That someone had carefully lined the sides of the path that I had spent so many hours creating with beautiful smooth white stones. I couldn’t believe it. Stunned, I raced on up to the next level – and the next – and the next – and the next (there were 5 levels that I had carved out) and they were all lined, all cared for.

When I reached the top that day, I threw myself on the ground and cried that something so unforeseen had happened. I had created something from love with no expectation that it would live beyond me – but it had. My heart was full and happy and the beauty and magic in the world shone clearly.

****

Yesterday a new member of a group that I’ve started asked me why I bother doing what I do. “What’s the point? Why bother with this anyway?

I thought of my path in Taiwan. I thought of Martin Luther King Jr’s words: Our lives begin to end the day we become silent about things that matter. Sometimes I can’t see the end in the beginning – sometimes it’s only recognizing that it matters to me and so it is important and should be acted upon. Sometimes it’s simply responding to a feeling that I am compelled to respond to. Create this , do that. It doesn’t always make sense. It doesn’t always have to.

“Why bother?” Indeed. Why. When we know we are facing an uphill climb anyway. 
“Why bother?” It hurts to be misunderstood.
“Why bother?” I should focus on myself, right.
“Why bother?” It’s going to die off anyway.
“Why bother?” I won’t be here forever.

*****

“Why bother?” Because I care
“Why bother?” Because I can do no less
“Why bother?” Because it matters to me

*****

The universe and God are mysteries. They operate in ways that I will never fathom. But I trust that good will come from a first step that is made with love, from care, because it matters. I know that it is only mine to act; not necessarily to see the end. To have vision, yes, but more importantly, to trust that it will all unfold as it should.

Because it matters.

_________

_________
Originally published on August 7, 2012

I wasn’t going to talk about my actual age anymore. It feels limiting and makes me feel boxed in a bit. Like, you are supposed to be or do x,y.z by the time you are 1,2,3. You are grown up and responsible at given set of numbers and you aren’t supposed to live boldly anymore (if you ever were). You are not supposed to do things that scare you.

I was thinking about that for a long while. Because, you see, when I was a kid, I was fascinated by a particular Baha’i writing – paraphrased, it is that if you are afraid of things or people, you will never be truly afraid of God, and if you are afraid of God, nothing but God will make you afraid.

I was on a quest for quite a while to do the things that made me afraid. Small stuff: like I took a volleyball class in college because I was scared of volleyballs (uh huh, really). I took care of old people because I was scared of sickness. I didn’t do things that scared me against my instincts (- like walk down a dark alley or jump off heights), but I pushed myself to do the small things that scared me.

And then – partially from necessity – I pushed myself to do the large things that scared me. Like having a child with Down syndrome. Like embracing my own disability. Like being absolutely honest with myself. Like changing my website to meriahnichols.com and laying claim to my own words in the most public way possible.

At this point, I think of fear – and God – in ways different than I did when I was a child and wanting to understand the quote.

I feel the interconnectedness of us all more, which is a way to say that I feel the spirit of God in all of us. And “God” has never been the old man in the sky for me. It’s always been the Source – emanating energy, love.

I feel this Source.

As I stay on this planet and pass around the sun more times, I notice that the smaller stuff doesn’t scare me much anymore. Continually facing the volleyballs just makes me see that they really are just big, white, round balls. It’s not them I’m actually scared of; I’m scared of being hit.

I see that the smaller fears have deeper roots, and the deeper roots are sometimes tangled in the deeper fears.

It’s okay to feel fear. In fact, I think it’s very important to feel it.

Feeling it for me helps me acknowledge it. It allows me to think about the deeper places that the fear is coming from. Knowing where it is coming from lets me meet it head-first, address it and move on.

Coming back here scared me sick. It wasn’t the actual manual work that had to be done or the fairly rough living conditions or even the mice! It was the isolation. Feeling that – really feeling it, really getting to the core of what was making me so scared – was helpful for me because I could make a plan to catch myself when/if I needed it.

42.

I switch those numbers around and they are 24. When I was 24, I had arrived on a hill in Vermont from Guangzhou, China. I attended graduate school. I met some of my best friends in that year, people that are very much a part of my heart still. I didn’t realize at the time how incredibly lucky I was to have like-minded people all around me then, I didn’t know how much I would miss that later. All I could think about then was how much I wanted to be married and have kids. I didn’t see what was fantastic about the situation – the friendships! – because of what I thought was lacking.

42.

I’m again on a hill. I have the exact opposite of what I had on the hill when I was 24. I am married with kids, but I don’t have friends around. I mean, the irony is hilarious, right?!

This time I am not going to focus on what is lacking, because what is lacking will come in its own time. It always does. In the meantime, I have exactly what I wanted back when I was 24: 3 little kids and a pretty cool guy. I relish this opportunity to savor this moment.

42.

I think everyone has an abiding thread in their lives. Something that they face repeatedly, or some particular piece that they struggle to make sense of. Something they are passionate about and want to truly understand. I know that for me, it is fear. Living my life with courage and understanding the nature of fear, feeling the roots of it, moving on and through it is very important to me.

It’s the hardest thing I’ve ever done; it’s the best thing I have ever done. And ultimately, it’s what I feel will move me closer to God. God is still the point here for me – I suppose that is the simple result of my going through the windshield of a car when I was 4 years old. After that, God has always been the point.

42.

I look in the mirror and I see my face has new wrinkles. The texture of my skin is changing. My body is changing, responding to the gravity of time. I am not particularly relishing these changes. In fact, I am scared. I’m back to that fear – and I sit with it. What am I scared of? I’m not scared of dying.  So what is it? The change itself? Being considered ugly or irrelevant because I’m older? Yes, maybe. I’m not completely sure. I think I need to sit with this some more and breathe it in before I can figure it out and move on.

42.

It’s the oldest I’ve ever been and even while the changes scare me, the numbers please me. I like their symmetry.

42.

I’m glad I’m not 24. I’m glad this show of mine is moving forward and not back.

 

 

 

Mikey and I agreed that after my heavy solo-parenting gig of the summer and also solo-care of our chitlins during stretches when Mikey left the farm to buy a truck (or visit friends), I deserved a break, a Momcation. Like, a real momcation, without even one child with me, completely solo.

So I signed up for StoryCorps, bought tickets to Superfest, contacted some friends to interview for my Beyond Awareness Project, and headed south to the Bay Area.

It was so strange to be without the kids. It was the first time I’ve ever left them, all of them, overnight.

This was the first time in four years that I was well and truly alone.

I kept automatically doing things, like looking back in the rearview mirror to the kid’s seats, or thinking of what I had to feed them, thinking of re-filling their water bottles or snack traps or whatever. While driving down the 101, I passed through Willits and thought, ‘hmm, good place for a break and diaper change’ and then realized, d’oh! Don’t have to! HAHAHAHAA! Hope you are having fun, Mikey!

_______

I missed them terribly and yet I also terribly needed some time to recharge my batteries. I needed to reconnect with the disability community, I needed some SOUL POWER for my juju. I needed to hang out with Katherine and talk about Deaf education and what’s going on, I needed to hear ideas about disability awareness/acceptance, about our empowerment and what makes sense for those of us on the disability spectrum to focus our efforts on.

I needed to hear disabled jokes – here’s a good one,

how many disabled people does it take to change a light bulb?
– one.
then 5 able-bodied people to tell us what an inspiration we were to change it, and another able bodied person to take a picture of us doing it and exploit the hell out of it on social media!

I got my surge of connectivity that I needed, I got to sit in a space and look around and see every flavour of those of us on the disability spectrum represented: the autistics, blind, the chair users, the couple with CP, little people, people with any and every number of disabilities, visible and not. Sometimes I feel like no one has really experienced diversity unless and until you hang out with the disabled community because we take it to a whole new level.

I want to say that I did some other things like… I got a pedicure or went to the Berkeley Acupuncture Project for some relaxing needle work…or a massage or something. But I didn’t. I walked around with Kianna. I thought a lot. I enjoyed thinking and walking. I mean, I really enjoyed my walking and thinking, so I walked and thought some more. I also thought about how much I love Kianna, who was right there with me every step of the way.

Speaking of Kianna,we had her rec-certification test on the way home. I thought she might flunk it because she absolutely refused to go up the escalators we encountered in San Francisco, but it turns out that’s not a critical element. I was told to just take the stairs or elevators, because given that there is no way to practice walking up and down escalators where we are, it’s not fair to expect that of her. So, YAY! Kianna passed!

And with that, we were homebound.

I was laying money on Mikey being really glad to see me.

I was right.

Bee on my windshield while driving in San Francisco, Alice Wong and Story Corps, Kianna
Bee on my windshield while driving in San Francisco, Alice Wong and Story Corps, Kianna
meriah nichols_-4
at the ed roberts campus
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the beautiful hallways in the Ed Roberts Campus
meriah nichols_
My beloved Katherine (and I)

 

meriah nichols_-11
Crossing River Road in Cloverdale, CA – where I used to live when I was a very young child
meriah nichols_-10
right by where I got in my car accident when I was 4 years old (and went through the windshield)

 

meriah nichols_-3
Katherine, Corbett O’Toole, and I at Super Fest
meriah nichols_-2
My sister from another mister

 

meriah nichols_-9
on the way home: cows on the hills of the Lost Coast
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my little babies – xoxo

 

***********************************

WINNER:

random.org picked Comment #2, Diane S as the winner of the “Special  Joy” Down syndrome Doll giveaway.

Congratulations, Diane!

***********************************

Proud Flesh, “exuberant granulation tissue” – the first stage in the creation of scar tissue.
Proud flesh is for me, more aptly stated as an end rather than a beginning.

Proud flesh, my scars.

Proud flesh, my scars.

Proud flesh, my scars.
***
There comes to a point in life in which you see your Proud Flesh and wouldn’t – not for the world – change them.
I wouldn’t change mine.

I learned from them that the world is temporal. That our faces are facades. That our faces are frames. That are faces are flesh. That flesh changes and yet – our core never does. Our spirit, ever-eternal, will always be.

Whole.

I don’t often talk about my scars – not in the way that I do my deafness. There isn’t much to talk about. They are not something I struggle with (anymore). They are not something I’d change (if I could).

Proud flesh, proud of my flesh.

I learned too much from them to feel anything but gratitude.

***
I feel the small hands of my children on my scars, tracing the lines. “Mommy, what’s this?”
Proud flesh, honey.
It’s proud.

****
First published on Sept. 19, 2011.
Reposting in response to some questions about my scars.
A post on my car accident is Memories.

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Let me tell you a story.

When I was 17, I was living in a tiny rice farming village in rural Taiwan. I was terribly, achingly lonely. There were not many people my age in the town at all – but those that there were, were in school, or preparing for university. They definitely did not speak English. My Chinese being shoddy, the only people I could really talk to were old people – who knew Japanese by virtue of Taiwan being a colony of Japan in World War II – or "mountain people", the indigenous people who also knew Japanese (because they liked the Japanese better than the Chinese).

I was lonely. Very lonely.

So what I got to doing every day was bicycling over to a mountain I was fond of. I'd hike up to the pagoda on top, smoke a closet cigarette or three. Pray. Study holy writings.

I got to looking around and realized the mountain was even higher in the back, behind the pagoda. Full of tumbled bushes, weeds, trees. Taiwanese Jungle. I started to bring a cane knife (-machete) with me and began the process – one that would take me over 5 months – of whacking out a path all the way to very top of the mountain. The very top.

Sometimes as I struggled, whacking, pulling, cutting, heaving, I wondered why on earth I was doing this. Why I felt so bloody compelled to create this path. Why? When I'd be leaving Taiwan for sure, when it would go back to being bush. Who would use it, what was the point?

The only answer I could ever come to within my heart was that I wanted to. I wanted this path. I wanted to sit on the very top of that mountain and pray. That's what I wanted. Waste or not, I reckoned, it was what I needed to do.

****

6 years later, when I was 24, I visited that small town once more. Out of old time's sake, I wanted to visit my old mountain. I drove my scooter there (an upgrade from my bicycle!), Parked it at the base,hiked up to the pagoda. I thought that for sure my path would be gone – it had been 6 years, after all, but I wanted to check it out nonetheless.

And.

I found that someone – who? – had discovered it. That someone had carefully lined the sides of the path that I had spent so many hours creating with beautiful smooth white stones. I couldn't believe it. Stunned, I raced on up to the next level – and the next – and the next – and the next (there were 5 levels that I had carved out) and they were all lined, all cared for.

When I reached the top that day, I threw myself on the ground and cried with joy that something so unforeseen had happened – that though I had created something from love with no expectation that it would live beyond me – it had. I thanked God with my heart – full and happy.

****

Yesterday a new member of a group that I've started asked me why I bother with starting this – the group – when I will be leaving next year to uncertain places with uncertain internet access. A group that I am very prepared to hand over to anyone who is willing to champion it.

 

I thought of my path in Taiwan. I thought of Martin Luther King Jr's words: Our lives begin to end the day we become silent about things that matter. Sometimes I can't see the end in the beginning – sometimes it's only recognizing that it matters to me and so it is important and should be acted upon. Sometimes it's simply responding to a feeling that I am compelled to respond to. Create this , do that. It doesn't always make sense. It doesn't always have to.

 

"Why bother?" Indeed. Why. When we know we are facing an uphill climb anyway.

"Why bother?" It hurts to be misunderstood.

"Why bother?" I should focus on myself, right.

"Why bother?" It's going to die off anyway.

"Why bother?" I won't be here forever.

 

*****

 

"Why bother?" Because I care

"Why bother?" Because I can do no less

"Why bother?" Because it matters to me

 

*****

The universe and God are mysteries. Operate in ways that I will never fathom. But I trust that good will come from a first step that is made with love, from care, because it matters. I know that it is only mine to act; not necessarily to see the end. To have vision, yes, but more importantly, to trust that it will all unfold as it should.

 

Because it matters.

 

This is a difficult post for me to write. Mostly because it's so challenging for me to summon the words to articulate what I feel. But let me give it a shot…

One of the things that really struck me in Expecting Adam was how very free the mother was at the end. Instead of being tied down to a job, to whatever, she became freer than free. Like a bird that finally looked down and realized that its wings were for flying.

I wondered a lot about that.

It seemed to me that if you had a kid with Ds, you would need to be centered. Focused. More responsible than you ever were. Stable, with a capital 'S'.

But now… I get it. It's not that you don't care about stability anymore. Or responsibility. Or focus. It's that you trust the Universe more. You trust God. You face what you think you can't, what you are terrified of. When you make it through it, you see the stars alight in the sky and realize that you, too, are a part of that beauty. Like a birth – being held in, tight in a womb brimming with fear, then traveling down a passage so dark and awash with despair you thought you'd die. Then, OUT – free! And you see there was nothing, nothing at all to be afraid of.

Beauty surrounding and within. A universe that we were all meant to be a part of. Fear doesn't have much of a role in it.

****

What am I scared of? What people say? Think?

That can't be it.I rather think I'm more over that than not.

I started getting over that a long, long time ago – first when I was a kid with deep, red scars all over my face. And then the coke bottle glasses. Then the being white in a black country. Then the hearing aids…. it goes on and on. Culminating, of course, in my biggest fear regarding children: having one with an extra chromosome.

Now, that's gone. I faced that. I have a child with an extra chromosome and it's nothing like I thought it would be. She's all that is good and wondrous. So I'm left only with a fear of being poor. As poor as I've been in the past. I'm also afraid of going through hell again to find a job. 

That's it. Those two biggies, up against not a fear but a feeling – the depression that consumes me when I sit in the office, away from  my children. 

And the root of that is that I waited so many years for this day, the day that I have these beautiful children (and husband). I waited my whole life for this moment, and now this moment is holed up in an office? How can this be? I'm supposed to be with these people that I brought into the world. I'm supposed to be teaching, guiding, loving, disciplining and mothering them. They are my first priority.

Still, there are bills. So I've tried to cut back on hours, stay at my job, reach a compromise. And it's not working. It's either all or nothing for my boss. I can't do the all at the expense of my own happiness and sanity – and at the expense of what I truly feel is best for my babies.

The time has come for me to face my fear. Trust in the unknown, let the Universe catch me.  Know that it's going to be okay, really. It will. I'll leave the office, find something else that will let me be at home more. Or not, and just eat a whole lot more beans.

I've given notice. October 31st will be my last day.

I'm opening up, falling back, and know that I'm going to be caught. 

 

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