Friday, July 29, 2016

VIDEO: THANK YOU - 2 Years Blogging at Tonia Says!


I was pretty nervous making this video, you guys, but I wanted to let you know how much I appreciate you as readers and supporters of Tonia Says.  (A transcript of the video is available in the video description on YouTube if anyone needs it.)

Two years ago, I came across a post shared by a friend of mine on Facebook.  This post was from the point of view of a parent, giving other parents tips so that typical children would understand how to best interact with their disabled child.  Many of the tips were great, but a few really made me uneasy having been that disabled child, once upon a time.  So, I spoke to my friend privately and we had a great conversation about how she could best support disabled people in her family.

It was that conversation that led me to create Tonia Says.  I realize there are plenty of blog posts that pre-date July 29, 2014, but those were extras from another social media site that I didn't want to lose.  The actual original Tonia Says content started on that date.

I really want you all to know how much I appreciate and value you.  It means the world whether you have come here for community or to learn more.  I'm glad you're here.

Thank you so much for your support.

PS Check out K's post at Transcending CP, about why we want your questions.

***

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Monday, July 25, 2016

Let's Talk About Faith Part 8: Prayer

Previously on Let's Talk About Faith:  Introduction / Pre-Church / Confirmation / Saved / Jump / Healing / Mission /

Ever since I had gone to the healing and deliverance conference in 2001, people really wanted to pray for my physical healing.

It was mentioned beforehand, but it seemed to reach new heights.  I got approached in the halls of my university by a fellow classmate who wanted to pray for my healing.  I allowed it, not yet comfortable with saying no.  When this didn’t work, the student didn’t make me feel guilty or wrong, and in fact, we formed a small friendship and I went to church with him a few times.

Once I left college, though, things picked up again.  Being home meant being back at The Edge.  I was dealing with many personal issues at the time, and I often didn’t want to leave the house to go to church.  It was fall, and that meant the coming of winter, and my ever-present anniversary reaction to nearly losing my sister.  At the time I wrote:

Now I need prayer for a whole other set of issues - ones that, most likely, won’t be touched on.”

There was one night where Liam would not take no for an answer, back in 2003.  He gently prodded and prodded until I agreed to go to a prayer and intercession meeting at The Edge.

FAITH AND DISTRACTION:

The meeting itself was not particularly memorable for me, but it was the time afterward where we worshipped that stuck in my mind.  I had been seated at the end of a pew to one side of the sanctuary, and when the music started, I stood up. I’m short enough that had I remained seated, my view of the song lyrics would have been completely blocked by taller people.

I lost myself in singing and worshipping, feeling lighter and happier than I had in months when a voice interrupted me and someone grabbed my hand:

“I just wanted you to know that God told me that all your prayers are going to be answered.  You’re going to dance one day.”

She was happy.  Smiling.  Clearly well-meaning.  I had been raised to be polite.

“...Thank you…” I said hesitantly, just wanting her to go on her way.  I knew if God really was speaking to her, He would have likely shared with her the darkness that had existed over my life for the past months and years.  She might have said:

“All your prayers are going to be answered, and you won’t be afraid of losing those closest to you anymore.”

“All your prayers will be answered and you won’t feel horrible about yourself.”

“All your prayers will be answered because you will know you are enough just as you are.”

I tried to go back to worshipping, but I felt tense.  Watched.  And, frankly, more than a little offended.  It seemed that every time I attended an event like this, someone somewhere was convinced that all my hopes and dreams rode on being healed physically.

In spite of encountering people like this woman many times over the years, I had begun to nurture a small amount of respect for myself.  A small amount of love.  It was for all of me, CP included.  But it was hard to keep when so many who were older and held more authority said things that made me feel inferior.   So I moved.  I always felt more free in the open floor space at the front of the sanctuary, not confined to the area where pews blocked me.  So I walked up there, in an effort to hide in plain sight.  If she looked for me again in the pews, I wouldn’t be there.  I would be up front dancing.

I didn’t need that woman’s pity-prayers.  I could dance already, thanks very much.

It was what I was doing when I heard her voice again:

“Can you walk without your crutches?”

“No,” I said tersely, my body tense.

“Not at all?” she pressed, incredulous.  “Not even if I hold your hands?”

“No.”

I was done being nice.  And I was so relieved when she walked away.

Again, I tried to refocus.

Before I knew it she was back a third time.  I think she could see I had lost patience with her because she hurried to say what she had to say:

“I just wanted to tell you that God loves you just the way you are and that you don’t have to do anything.”

I wanted to scream at her, “I KNOW THAT.  WHY DON’T YOU?”

In turned out that after her second time harassing me about how mobile I was without my mobility aids, she had spoken to Liam.  Told him that she had been trying to pray for me, I guess, and that I seemed not to want it.  Liam, having been at the healing conference two years previously, and having seen its disastrous impacts on me, cautioned her.  He told her (you guessed it) that God loved me the way I was and I didn’t have to do anything to earn it.

After that, I was done.  I was angry.  I was hurt.  All I wanted was to be able to do what everyone else there was freely doing: praying and worshipping God in peace.  I wanted to be left alone.  I wanted to be respected.  But instead, I felt like I could not show my face at church events because I would be bombarded by people who wanted to make a spectacle of me, heal me or tell me how much I “inspired” them.

There was usually an open door in the sanctuary that led outside.  Though it was dark out, and not the warmest, I pressed my back against the outside of the building and looked up at the sky just trying to breathe.  Just trying to be.  To rekindle that little bit of self-love I had managed to ignite in the face of so many voices telling me the opposite.

FAITH AND REFUSAL:

Six months later, I was at another church where Liam’s Christian band was leading worship.  A sign greeted me when I got there, informing me that the elevator was out of order.  There was someone already aware and working to fix the problem.  However, the sanctuary was downstairs.  I didn’t know how long the repairs would take.  And so, I turned to the flight of stairs.

I was descending the steps more slowly than usual, because they were unfamiliar and I didn’t want to lose my footing and fall.  A friend was at my side, which was a nice bit of reassurance.  It just so happened that halfway down, on the landing between the two flights of stairs, there was a Bible study going on.

I tried to proceed as quietly as possible, not talking or drawing any extra attention to myself.  Just as I got to the landing between the two flights of stairs, the conversation completely stopped.  The guy leading the Bible study stared hard at me and said, in an accusatory tone, “You know, there’s an elevator.”

“I know.  It’s out of order.”

“Well, someone’s fixing it.”

“I know that.”

“Well, why don’t you wait for him to fix it?”

“Because I can go down the stairs.”

I kept my voice quiet, and my tone respectful of this stranger.  He stared at me until I started down the second flight of stairs.  The silence was obvious behind me, but once I was out of sight, I heard him clearly, telling his group:

“I’m sorry about that.”

I tried to put the instance out of my mind and instead focused on the worship that was starting.  I knew right away that I wanted to stand up and worship.  As long as there was a chair behind me, I could do it with no problems.  As long as I stood still, I could be on my feet, with no support from anything.  It was a challenge, but I could do it, and I loved doing it.  Being able to both stand and raise my hands during worship felt so freeing.  So, that’s what I was doing, second row from the front, so there was a chair to grab if I needed to catch my balance.  I was right by the aisle, so I could easily come and go, without disrupting many people.

Then, the pastor started talking about healing.

I panicked, remembering the healing and deliverance conference three years ago.  I kept standing, thinking this was the way I would seem the most unobtrusive.  I hoped no one would see my crutches lying by my feet or even remember that I had them.  Despite all of this, I felt that my being there at all was drawing unwanted attention.

I had not moved.  I had not gone forward.  I had not raised a hand to signal anyone over to me, but just like that, two women had materialized.  A younger woman on one side of me, and an older one on the other side.

I was trapped.

The older woman started praying for me.

“It actually really bothers me when people come to pray for me and automatically pray for the obvious...my legs.  There are other things going on in my life.  It’s frustrating that in church, I’m only something to fix.”  I told the younger woman sitting beside me.

“What else do you need prayer for?” she asked, seeming shocked.

But I held back.  She was a total stranger.  I had never met her before.  Not the time to admit to an array of mental health issues.

She led me through a rote prayer, asking me to repeat after her.  It all felt very weird.

At the same time, the older woman asked, “Can I pray for your legs?”

A man approached then, having overheard.  He whipped the chair in front of me out of the way, so that he would have better access to me and my legs.

I knew what was coming.  I knew they’d surround me.  People I didn’t know would touch my legs.  They’d pray and their prayers would get louder and louder, and then they’d give up.

And it would be on me.

[Image is: A black and white photo of my crutches on the ground and my legs and feet.  A hand is hovering above, ready to descend on my legs in prayer.  Photo credit: My sis.]


Before they could touch me, and for one of the first times in my life, I said, “No.  Not right now.”

They were totally shocked.

I picked up my crutches and walked away.

As this was an unfamiliar part of town, I didn’t feel comfortable standing outside, so I hid out in the bathroom for the rest of the message.  I knew the only reason I was not being accosted was that I locked myself in.  I felt angry and sad that again, I could not exist in a space that was supposed to feel safe.  I didn’t know why similar things just kept happening, no matter where I was.  It happened over and over, at The Edge and other churches.  People basically forcing themselves on me because they were so intent to see God heal me.

It felt beyond scary.  It made me panic.  Remove myself from situations.  Experiencing this one time would have been more than enough.  Would have been damaging enough.  I naively thought, though, if I didn’t “ask for it,” it would stop.  But it had been years, and it wasn’t stopping.

Outside the door, people I knew were getting prayer.  Friends were getting prayer.  And I wanted that for them.  I wanted to be free to go up to the front of the room and join in prayer for them.  Instead, I was paralyzed by anxiety.   I knew that by simply existing, I was an eyesore to be appraised and repaired.

FAITH TO BE A COMFORTER:

I still remember flipping through the Bible on my own time and stumbling upon Isaiah 40:1.  The moment I first read the passage, I knew it was my calling.  People at The Edge called such things their “life verse.”

Mine read: Comfort, comfort my people, says your God.

When I first came to The Edge, Liam had called me a prayer warrior.  It looked to him like I was drawn to pray for many people.  In reality, though, I had been drawn by their distress.  I laid a hand on their backs not to fix what was wrong but to let them know someone was behind them.  Someone was with them.  Someone saw their tears.  Someone knew they were hurting.  Someone cared.  I wanted to comfort them in their time of need.  I was too familiar with how it felt to go through dark times essentially alone and I wanted to extend that support to others.

Perhaps, this is why my experience with receiving prayer has nearly always felt like the opposite of love.  My mind and my heart always equated prayer with acts of comfort and support.

And frankly, there was nothing comforting in being told that I was a distraction, or that I was broken.

I was meant to exist the way God made me.  Disability included.

***

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Sunday, July 24, 2016

Like Looking in a Mirror, Part 2

It is beyond special to be able to spend time with "your people."  Whomever they are, it's a rare gift to be in the same space in a given moment.  To be able to feel unselfconscious about walking or crawling, about being in your chair, or out of your chair.  About being.

Perhaps, you remember back in December, that I posted for the first time about the novelty of this.  That it was like looking in a mirror to see my own features, hallmarks of CP, reflected back in the face of a young friend.

Tonight, they came back.

{Image is: My little friend and me, from behind, enjoying some poetry together.}


As with many things, it's not what we do that matters, just that we are together while doing it.  A highlight for me, this time, was sharing a favorite book from my childhood (Shel Silverstein's Where The Sidewalk Ends) and reading it aloud together.  Laughing and talking about the pictures, and repeated words and phrases.  About how we want to always make sure to take the garbage out, thanks to Sara Cynthia Sylvia Stout, who never took it out.  (The stench caused her neighbors to move away.)

We watched movies and TV.  There was coloring and piano-playing and exclaiming over the accessible shower, the kitchen, the apartment in general.  We wished they could stay longer.  (Read: forever.)

Oh, we wished.

But for a few hours we got the magic of these moments to hold close to us.  For a few hours, it was okay to say "My leg really hurts."  It was okay to crawl.  To get down on the floor.  To grab a chair for balance because you do "Whatever you have to do to survive."

Community is so important.  If you are lucky enough to have it close by, don't take it for granted.  It is the most precious thing to feel unencumbered.  To feel free just to be.  To offer suggestions, solutions.  To say, "Me, too."

Me, too, I used to sit just like that.

Me, too, I have balance issues.

I fall, too.

But also...

I love poetry, too.

I love being together.

I love just being with you.

I love being however I am, and knowing that's okay.

***

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Monday, July 18, 2016

Let's Talk About Faith Part 7: Mission

Previously on Let’s Talk About Faith:  Introduction / Pre-Church / Confirmation / Saved / Jump / Healing

I’m pretty sure I surprised everyone I loved when I told them my plans to go to Costa Rica with a small missions team just four months after the disastrous healing and deliverance conference.  But in the ensuing months, I threw myself into the goal of going on this trip.  I got a passport for the first time, wrote support letters to get the funding I needed, and went to planning meetings for months prior to the trip.  Our great-grandma was so opposed to Tara and me going on this trip that our great-grandpa had to sneak us a $20 bill to put toward the cost, without her knowing.

In truth, going on a trip like this was a necessary distraction for me.  In last few months, I had become depressed and more insecure than ever after I’d been blamed for my own lack of physical healing.  I felt like I had done nothing in my quest to live for God.  Costa Rica gave me something to focus on.  Costa Rica was someplace tangible that I could go, and maybe make a difference.

HAVE FAITH, WILL TRAVEL:

At first, the idea of going a mission trip was one that stopped me short.  I wondered if I would even be accepted for the trip, because of my CP.

Then, I met Mike.

I still don’t remember exactly when this was, but one night, months before going to Costa Rica was even a thought, Mike came with his wife and spoke to the youth group about the children’s home they ran.

Mike was in a wheelchair.

Seeing him, and knowing he worked there every day, and had for many years, made me sure I could go there too.  It was the first time I had ever seen an adult with a disability in such a distinguished position, actively helping people in another country.

It made me not have to ask the billions of questions that were usually required before I went anywhere, relating to accessibility.  If Mike could get around there, if Mike could help there, I could, too.  We both had manual chairs and enough upper body strength to propel ourselves.  This alone was such a relief.

It also meant nobody from The Edge even questioned if I could go.  Mike was my good friend Sally’s uncle.  She, as the leader of Costa Rica team, had seen her uncle do all kinds of things and knew he (and therefore I) was plenty capable.

Once in Costa Rica, Mike shared his testimony with us and warned me about the steep sidewalks.  When I got too close to the edge and flipped off the sidewalk into the grass one day, when Mike was just ahead of me, he simply turned and asked over his shoulder, “You okay?” sounding perfectly confident that I was.

Contrary to making me feel like Mike didn’t care, his casual reaction made me sure that disability was normal in this place.  That he had likely flipped off this particular stretch of sidewalk himself before, and was none the worse for wear.  Someone helped me right my chair.  I got back in, and just kept going.

FAITH ON WHEELS:

Upon arriving at the children’s home, I discovered that Mike’s presence had an impact on the kids, too.  The minute I got off the bus and into my wheelchair, all the kids surrounded me and were impressed that I was “like Mike”.

Right away, one school-aged child asked me what was wrong with my legs.  While my Spanish language comprehension was such that I could understand most of what was said, my speaking ability was not up to par.  I had no idea how to explain to an eight year old in Spanish what Cerebral Palsy was and how it affected me.

I looked to Sally (more fluent after taking long-term trips to Costa Rica herself) for some help.  Approaching the little girl, Sally said honestly in Spanish, “I don’t know how to explain it well.  It just is.  But it’s not a problem for her,” which the child accepted and we moved on.

The first few days, I was given food preparation or household construction jobs, which I attempted, but was not great at.  Eventually, I found my niche with the kids.  My wheelchair was a child-magnet.  Some liked to push me in it.  Some liked to play peek-a-boo from behind it.  Some liked to stand on my foot pedals while I held onto them and someone else pushed us slowly around the room.  Once or twice, I got out of my chair in front of the kids to be on their level.

[Image is: Me, out and about in my teal wheelchair in Costa Rica.  I'm dressed in a tan hat, a navy blue tee shirt, tan capri pants, socks, tennis shoes and a black fanny pack.  I am smiling.  There was actually a child pushing me in the original picture, but I have cropped them out of the image for privacy reasons.]


I still remember vividly an afternoon like this, when I was playing on the floor with some kids.  Sally was nearby, and we both heard a boy use a Spanish word we were unfamiliar with, while looking at me.  I could tell by the expression on her face that she and I were both thinking the same thing: that this kid had just used some kind of Spanish ableist slur against me.

Sally pressed him to explain: “What is gatear?” she asked in Spanish, her tone serious.

He mimed crawling.

Ella gatea como Nico.”

“She crawls like Nico.”

Not a slur.  Not even close.  Because these kids grew up around disability.

In addition to Mike, there was also a five-year-old boy, Nico, who was disabled as well.  I had seen him from a distance working with therapists on walking and other physical activities.  Though it was evident that Nico needed adaptive equipment of some sort to move around more freely, he did not currently have any, so he was largely dependent on adults to help him move place to place.  Otherwise, as the previous child observed, Nico crawled.

It was one of my last days there, when I got the chance to connect with Nico.  Many of the other kids were outside playing active games on the grass, so I came inside one of the houses to see if there were any kids who had stayed indoors.

I spotted Nico, in a crib against one wall.  It was a startling thing to see: this tall, lanky five-year-old in a crib like a baby.  It was too small for him.  But I rationalized at the time that perhaps he was resting, and if so, he would not have been safe in a bed.

I could see he was not asleep, though, and he didn’t seem particularly tired, so I approached him and started talking.

“Hey,” I greeted in Spanish.  “How are you?”

Nico smiled.  It was definitely his best feature.  Broad and dimpled, complete with missing teeth.

“Do you want to see what I have?” I asked, trying in vain to think of what I could say to him vocabulary-wise.  I was not unsure of his comprehension, but again, of my own Spanish-speaking ability.  The other kids loved it when I showed them what I had with me in my fanny pack, especially the picture of my youngest brother, who was just Nico’s age.

We exhausted that option fast, but I recovered quickly.  “Do you like my hat?” I asked.

It was nothing special.  Just a tan baseball cap from Old Navy with an American flag in lieu of a sports logo.  I’d had it for around a year, and even though I had only been in Costa Rica for a week, the hat was already marked by reddish Costa Rican dirt and little fingerprints from the kids, who loved trying it on.

In response, Nico pulled himself up to stand, holding onto the crib railing.  Then, he grinned at me again.

He was dressed in a school uniform: a pale blue dress shirt with a collar, black dress shorts, socks and dress shoes.  In my hat, I felt sure, he would be even cuter.  So I took it off, and put it on his head, smiling.  “Do you like it?” I asked.  “You look very nice in it.”

Reaching up with one hand, still using the other to balance, Nico took my hat off his head, and threw it on the ground.

“Oh no!” I exclaimed, with a smile.

Nico laughed uproariously, thrilled at the game he had created.

“Where did my hat go?  Here it is!” I said, picking it up and putting it back on myself.

The next thing I know, Nico was reaching for it.  I learned forward and ducked out of the hat.  Then, he tossed it on the floor again.  Laughed again.

Over and over, we did this.  Nico even started mimicking the way I said “Oh no!” when my hat would sail through the air.  It reminded me of something my own brother would have done.

Our disabilities were not something we ignored.  We obviously had them.  Mine meant I was not able to lift Nico out of the crib, for example, but had to wait for someone else to help us.  His disability meant that he had been at the children’s home for much longer than any of the other kids, because no Costa Rican family, as yet, was prepared to adopt him - and out of country adoptions were not an option there.   For both of us, they meant that we stayed inside while all the kids played soccer.

But if everyone in a room is disabled, then no one is.

We had so much fun.

Later, one of the aunts (as the house mothers were called) lifted Nico out of the crib and he crawled over to my wheelchair.  I put the brakes on so it would remain steady, and he used the wheel to pull himself up to stand, and smiled at me.

A few days after that, we had to leave.  We stopped by the houses to say goodbye to the kids, but Nico was not there.  He was often on a different schedule than the other children so it was not unheard of that he would not be where they were.  Still, my heart broke that I would not be able to say goodbye to him.

On the bus as we rode to the airport, I could not contain my sadness.  Most kids, I knew, were able to reunite with their birth families, or be adopted somewhere between six months and a year’s time.  Nico had already exceeded the average child’s stay by two and a half times.  I knew, being disabled, Nico would likely remain at the children’s home for a very long time.  I hated that Nico’s disability was the reason he’d been there for so long.  I hated that he was so largely separated from the other kids.  That he had to suffer the indignity of being in a crib too small for him in the middle of the day, when all the other children were outside playing.

He would be loved, I knew that.  But it would not be the same as having a family.

How fair was it that this great kid would probably never have a home?  Would never be wanted?

The truth was, I wanted him.  I wanted him very much, and though I was only nineteen years old, I naively felt that because I knew Spanish I could keep his culture alive for him.  In my heart, I knew that being disabled myself would not be a hindrance, it would be a help.  Because I could teach Nico how to adapt.  I could show him that being disabled was okay, even though the world still told me regularly that it was not okay.  I would make it so for this boy.

My desires and hopes to adopt Nico myself were futile and I knew that.  Costa Rican laws were very clear.  I had to leave, and leave Nico, but a piece of my heart remained behind.

FAITH FOR A FAMILY:

It’s been fifteen years since I have rolled on Costa Rican soil.  Since I have experienced the intense humidity, the rain every afternoon, the inky black nights, the breathtaking mountains and sunsets.  Since I have seen Nico.

But every so often, over the years, I have gotten an email from Mike and his wife, letting me know the latest news on their family, the children’s home, and the children who live there.  All of the ones I got to know moved on quickly after we left, but Nico remained.  And every so often we got an update on him:

At seven, he got a walker.

At thirteen, he had developed quite a work ethic and claimed cleaning one of the play houses as “his job.”

And two years ago, the best news yet, that I had dared not get my hopes up for but had not abandoned either: at eighteen, Nico had been adopted.  He had a family.

FAITH IN MY COMMUNITY:

It’s difficult to articulate just how powerful it is to have had the opportunity to not only travel overseas, but to serve alongside and spend time with people who were like me.  To not be the only one who was different.  For the kids and the adults to have a context for disability, to understand that it was not a bad thing, just something to consider.

There is something so amazing about having a role model.  Mike was that for me in Costa Rica.  His voice had just much weight as his wife’s voice.  We respected them equally.

And Nico’s presence was just as important.  To be able to be there and spend time with a child like I had once been.  To spend time with a kid who never even cared about the wheelchair or why I had it or admonished other kids to “be careful” when they pushed me.  He just wanted to play.

My time in Costa Rica remains one of a few shining examples of faith and disability existing in an easy, respectful harmony.

I loved my experience there so much.

***

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Monday, July 11, 2016

Let's Talk About Faith Part 6: Healing

Previously on Let's Talk About Faith:  Introduction / Pre-Church / Confirmation / Saved / Jump /

It started out a completely ordinary Friday.  I went to all my classes at the local community college, and before the day was done, Liam approached me:

“Do you want to go to this healing conference downtown with me?  It’s really cool.”

“This what?” I asked.  Less than a year after being saved, and immersing myself in church culture at The Edge, and there were still many things I was unfamiliar with.

“It’s basically people gathered together to pray and be prayed for.  For healing and deliverance.”

“From what?” I wondered.  What could be so bad?

Liam shrugged.  “Whatever they need prayer for.  So, will you come?  I think it’d be really good if you came.”

“Sure,” I smiled.

I had no idea what healing or deliverance entailed, but Liam had said the magic words:

Do you want to come to a healing and deliverance conference with me?”

I did.  I really did.

It wasn’t romantic.  It was just...he wanted me to come with him.  He wanted me, not someone else.  He sought me out.  People didn’t do that.  People, I had found, didn’t adapt.  They weren’t accepting.  No one sought out the girl who took more time than everyone else to walk places.  No one sought out the girl who meant they’d have to think about accessibility.  Entrances and exits.  Elevators.

But Liam was different.  He cared.  He cared to get to know me.  He cared about what mattered to me.  He cared when I was struggling.  He did something about it when I was struggling.

WALK BY FAITH:  

That night, as the events of the evening wrapped up, the pastor called up people who wanted prayer.  It was an auditorium-style room and full, to boot.  Many people wanted prayer.  Many got up and went forward.

Immediately, I heard noises.  Yelling.  Screaming.  Crying.  People fell.  It all sounded very intense to me.  Still, I was drawn to the front of the room, in the area between a large stage and the front row of auditorium seats.

On the way to the conference, Liam and I had talked more about it.  About the possibility of my own healing.  It sounded fantastical to be honest, but Liam really believed it could happen.  He seemed to want it to happen.

If I got healed and didn’t have CP anymore, I’d be more acceptable.

People would like me more if I was like them.

It was this thought that had me on my feet, and walking slowly down the long aisle toward the front.  I was so timid that my  journey took a long time.  I wanted people to like me but I was not so sure I wanted this.

I came closer and closer and eventually had a good line of sight to what was going on.  Being on the short side, I hadn’t been able to see what exactly was transpiring, as most in the audience were taller than me, and were standing up to get a good view of the action.  Now, though, no one was blocking my view.  People were falling.  And crying.  The pastor was praying out loud and touching them on their heads.

Well...I wasn’t planning on screaming.  I was pretty sure healing wasn’t physically painful.  And I definitely wasn’t planning to fall over...so I guessed it was okay if the pastor prayed out loud for me and touched my head…

I was inching my way forward, and looked onstage to see Liam, playing guitar as part of the worship team.  He wasn’t playing a song.  He wasn’t singing.  He was nodding at me.  Nodding and nodding.

He wanted this.  He said it was a good thing.  I wanted to be able to do more things with my friends at church.  Things where they didn’t have to carry me or piggyback me places.  Where they didn’t have to drive me everywhere.  I wanted them to value me as much as they valued each other.

FAITH AND BIRDS:

By the time I reached the pastor to receive prayer, I was the last one.  He said some words to me - I don’t remember what - and then took my crutches from me and propped them against one of the front row auditorium seats.  Then, he took my hands and began walking back and forth.

Heat flooded my cheeks and tension seized my legs.  This was embarrassing.  Why couldn’t he just touch me once like all those other people?  Then I could go home and maybe tomorrow when I woke up, my legs would work like everyone else’s.

But no.  This was the way.  And it was taking forever.

Back and forth we went.  I was nervous in front of the giant room full of people and at trying to keep pace with him.

At some point, a microphone was thrust in my face:

“Do you believe that God can heal you?” the pastor asked.

“I…” I hesitated.  This isn’t church but it might as well be!  God will know if I lie!  “I want to.”

 I had grown up knowing surgery as the only option in dealing with CP.  If God could just heal me, what were all those surgeries for?  What was all that pain I endured for, if God could just decide to heal me?

In truth, the idea of me being healed like this and in this exact moment was as outlandish as praying I would grow wings and fly around the room.  In fact, for those of you who are not disabled and can’t quite grasp the terror of what was going on, imagine that instead of pacing and praying that this man I had never met was lifting me higher and higher in the air, waiting for my wings to grow.  Waiting for me to flap them.

Eventually, I felt my hard grip on his hands was not as firm.  As we were walking, he was trying to pull his hands away from mine.  My legs got tighter and tighter.  He had let go of me altogether for a second here and there, so I had to split my already singular concentration dedicated to walking and use half of it to make sure he didn’t pull away completely and leave me to fall on my face.

I didn’t want this.

This was humiliating.

This needed to stop.

 But I had no extra focus or energy to put toward asking him to stop.  Every ounce of strength, stamina, and concentration I had was going into struggling to keep up with him.

I was grasping only at his fingertips by this time, and the only thing keeping me upright was not faith but a fear of face-planting in front of an auditorium full of strangers.  It went on.  And on.  And on.

People were leaving.

My metaphorical wings were not growing.  To encourage the process, it was as if, now, the pastor were attempting to toss me into the air.  I was hanging onto him for all I was worth.

I’m not a bird!  I’m a person!

I’m a person.

[Image is: Me, crouched on a folding chair.  My body posture is closed and my facial expression is serious and sad.]


FAITHLESS / FAITHFUL:

Eventually, the pastor gave up.

“Your healing, God has already done it.  It is your lack of faith that is keeping it from coming to pass.”

He let me sit down beside my crutches again, and walked away.

And me?  I was crushed.

The experience sent me into a serious depression and effectively stopped any further growing I could have done spiritually.  All I’d wanted since I’d first stepped foot into The Edge church a year earlier had been acceptance.  Had been love.  Still just 19 years old, I had been dealing with real life.  Real trauma.

Now, not only was I not healed, but it was my fault.

 For many years afterward, I tried to speak to other people about what happened that night.  Friends from church.  And they were sympathetic, but dismissive.

“That shouldn’t have happened.  He shouldn’t have said that to you.  But you know what?  Just forget about it.  He didn’t know what he was talking about.”

 Fifteen years later, it’s still painful to think about what happened that cold January night at a random downtown venue. It was painful because I had no idea what I was walking into. I felt completely blindsided.  It felt like abuse.

In fact, in talking to my sister about her memories of that night, watching from the audience, she echoed my own long-held feelings:

“The longer it went on, the more I started to question your consent to what was happening.  Does she still want this?  Because it felt like I was watching a violation.  You know, that feeling where your heart drops and you want to do something but you can’t?  I wanted to do something, but it was like I was frozen.”

Her words are like balm to an open wound.

***

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Monday, July 4, 2016

Let's Talk About Faith Part 5: Jump

Previously on Let’s Talk About Faith: Introduction / Pre-Church / Confirmation / Saved

It’s July.

I have been saved for four months, and I’m reveling in my new life.  The Edge is starting to feel more like my church and less like Liam’s.  His friends are starting to feel like mine, too.  As proof of this phenomenon, his sisters invite Tara and me on a camping trip with them.

There are 15 other girls and on the last day, Liam arrives with two of his guy friends.  We all drive out to a spot where they want to go cliff jumping.

“I want to go cliff jumping with you, Tonia!” he says.

“Oh, right…  How is that gonna work?  You know I can’t swim, right?” I laugh.

“Come on!” Liam urges, as if the inability to swim is a minor obstacle.

“No way,” I insist.

When we arrive at our destination, everyone scatters.  All the girls begin swimming to the middle of the lake….and climb up on...something...I can’t tell what...to sunbathe and talk.

Tara is back at the campsite, but I want to be here.  I want to join in.  And now here I am, stuck on shore while everybody else is being social in the middle of the lake.

I generally don’t mind my CP.  I don’t love it, but it is part of me whether I like it or not.  Times like this, though, when it is obvious I can’t do what everyone else is doing, I hate to stick out.  I pace the shore, feeling left out, sad, and frustrated.

“Hey, Tonia!” Liam greets happily.

“Hey,” I say, trying to smile.

“You wanna come out to the floating dock with me?” he invites, like anything is possible.

“I can’t swim,” I remind him.

“I know.  It’s fine.  Just get on my back and hang on.  I’ll take you out there.”

“Really?” I ask.  “Are you sure you can?  I mean, I’m kind of heavy…”

“Oh, you’re not heavy,” he scoffs, laughing.  He squats in front of me, so his back is toward my front.  “Just leave your crutches here.”

So, I put down my crutches, and I grab onto Liam.  He walks to the edge of the lake and wades in.  The water gets deeper and deeper, and he starts swimming, checking in with me every so often.

“You okay?”

“Yeah,” I respond, exhilarated.

This is the coolest thing I have ever done.

I imagine we’ll get out to the dock, say hey, and turn to swim back.  But as soon as we get there, Liam is thinking through a way for us to climb onto the dock.

This is getting better and better!  I think.  I can do everything they can!

LEAP OF FAITH:

We’ve barely been on the dock when people begin jumping off and into the water.

My self-doubt begins creeping in again:  Of course, the minute I get here, everybody wants to leave.  It figures.

“Oh, sweet!  That looks like fun!  Tonia, do you want to?” Liam asks, squinting at me in the bright sun.  It is the perfect day...but Liam clearly does not understand the reality of my situation.  Maybe he doesn’t have friends with disabilities.  He probably doesn’t, other than me.  None of my friends have disabilities, except for the ones I met at summer camp five years before.

“No,” I say.  “What do you mean?  How?”  There is no way.  He will see that, and then we’ll swim back to shore.

Wait.

How am I going to get back in the water?

“Just hang onto my back like before, and we’ll jump off.”

Oh!  Just hang onto my back like before and we’ll JUMP OFF?  Is he kidding?  
Somehow, we go from that comment, to him standing at the edge of the dock with me hanging onto his back.  He is almost ready to jump when a thought occurs to him:

“When we hit the water, you have to let go of me, okay?”

NOT OKAY!

“No!” I insist, clinging tighter to him, my only option.  “I can’t swim!  If I let go of you, I’ll sink!”

I had almost drowned at thirteen.  I knew this drill.

Tonia + water - life jacket = NEVER AGAIN.

Except here I am.  Surrounded by water, with no life jacket.

How else am I going to get back in the water?  A few seconds, and my resolve is already weakening.

“Tonia, you have to let go of me or we’ll both sink.  I won’t let anything happen to you.  All the girls are down there in the water to help, too.  We’ll get you, okay?  Trust me.  You just have to let go.”

“Okay,” I say eventually.  Warily.  Mostly, I agree because I don’t want Liam to drown because of me.  But I still am not 100% confident in my instincts once I am submerged in water and unable to get a breath of air.  (When a giant wave in the Gulf flipped my innertube, sending me underwater years before, I had fought with everything in me to be rescued.  Which meant all 74 pounds of my overstressed, high toned body of solid muscle was trying to pull my sister down with me.)

I have not thought this through.

We are here, and there is no other way back to shore but to get back in the water.  And apparently the only way to get back in the water is to jump.

I close my eyes as Liam’s feet leave the dock.

We hit the water, and to my shock, I let go of him on instinct.

This time, I try to swim, but it’s ineffective, even in the calm water of the lake.

This is it.  

I’m going to drown.  

This was really stupid.

Hands find me in the water.  Several pairs.  And I feel myself being brought to the surface.  Liam is there, and I hang onto his back again.

We swim back to shore.

I find my crutches and everyone gathers to hang out on the beach.  Tara is back, and I am sopping wet and giddy.

“Tonia jumped off the floating dock with me!” Liam tells her, so exuberant that he beats me to the punch.

She turns to me, her face a mixture of no-nonsense sternness and shock that’s earned her the nickname of “Mom” among our friends.  “You did what?” she accuses.

“Yeah,” I confirm, grinning from ear to ear.

“Oh, come on, it was fun!” Liam ribs her.

“I can’t believe you did that,” Tara insists angrily.

“Can you take a picture of us?” I ask obliviously, as everybody gathers for a photo op by the lake.

“You guys are so bad,” she says, snapping the picture.  “Seriously, you are in such big trouble.”

[Image is: The photo Tara took of me after I jumped.  It is sepia toned.  I'm inexplicably in both a hat and my bathing suit, standing with my crutches and a big smile is on my face.]


BLIND FAITH:

The truth is, I was lucky that day.  I was lucky my friends were strong enough to rescue me after my total desperation to fit in eclipsed my common sense to the point where it put my life in danger.  I was newly nineteen.  I was old enough not to do something I knew was dangerous.

So, the blame for this rests - first and foremost - on my own shoulders.  However, with several years of hindsight I can also say that my hesitations, and my outright no’s to Liam should have been respected and honored, and they weren’t.

Now, why did I choose to share this story?

It doesn’t have much to do with church, or faith...except it does…

The draw of church and of faith was the acceptance I found in the arms and the hearts of the people I met there.  I came to The Edge six months previously, hurting.  I was in need.  I needed support.  I needed people.  I needed love.

Salvation put me on the same spiritual level as my peers.  While I knew I was “younger” in my walk with the Lord, we were all headed for the same place, and they wanted me with them as we journeyed through life together.

They wanted me with them.

Liam wanted me with him, and he always seemed to know when I was feeling left out and found ways to include me.  At the time, I thought there was nothing greater anyone could do to show me they cared about me genuinely.

As an adult, I can tell you that what would have been great is for me to have felt confident enough in my place with my friends to feel happy making macaroni and cheese on the beach with Tara and another friend, not risking my life for a few minutes of ridiculous fun.

When I think of young loved ones with CP doing this or similar things just in the name of acceptance, it makes my blood run cold.  Because our lives don’t just have value if we can do what our able-bodied friends can do.

It is not worth it - it is never worth it - to risk your life in the name of fitting in.

Those friends I was so worried about impressing and keeping?  I am not in touch with a single one today.

You know who I live with and see every day?

Tara.  Who knows what it’s like to have CP.  Who knows what it’s like to feel left out.  And who valued my life enough to call me on out when I was incredibly irresponsible with it.

Friends are not really your friends if they push you to do risky things.  Friends are not really your friends if they do not hear and honor your hesitance.  Even friends you meet at church.  Even friends who are doing nice things by trying to include you.  If they don’t fully grasp or want to learn what it means to have a disability, but expect you to grasp what it means to be able-bodied, think twice.

Think twice before putting your life in their hands.

I trusted everyone else that hot summer day.  I trusted that Liam would not knowingly put me in danger.  I trusted that the other girls would be strong enough to save me.  I trusted God to protect me.  But I was reckless and irresponsible with my life, and because of my abysmal sense of self-worth, I did not listen to the one voice I should have honored:

My own.

***

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