Why I’m So Happy

For the duration of my life, at least, the first quarter century of it, I felt a deep sense of discontentment.  I wasn’t happy– in fact, I was all the opposites: angry, depressed, and hopeless.  It came out in the way I related to myself, such as my decade-long battle with an eating disorder and my widely-swinging emotions.  It also came out in the way I related to others, even to the point that I was diagnosed with borderline personality disorder.

The diagnosis, and the stormy relationships that were behind it, came from the fact that I desperately sought a solution to my sense of discontentment.  Somewhere in me, I knew I had a problem and I knew I wanted a solution.  At times, I manipulated my eating and weight as I tried to gain control over my up-and-down emotional swings.  But, that didn’t work, and, in time, I began to turn to other people in search of a path to a peaceful spirit.  I pushed my friends away, knowing that I would hurt them, all while I clung to them and begged them to help me.  I wanted to save them, and I wanted to be saved from myself.  Of course, I never had the words to put any of this outright in a way that made sense either to other people or to myself.  I was hurting badly and incredibly confused.

On May 28, 2013, I experienced a radical healing.  I can close in on the moment in which God touched my heart from either side… it happened before this, after that, before this, after that… but never will I be able to pinpoint the infinitesimal moment in which my entire being and entire life were changed.

Since that date, I have learned that “my soul finds rest in God alone.”  Not only do I not have to look to other people to fix me… I quite frankly don’t give much of a darn at all as to what anyone else thinks!  I don’t care if they like my weight, my clothes, my choice of interests, or my beliefs.  In fact, I am very open about the fact that my healing came from God and not from anything I did, even though many people have been negative toward me for that admission… but, again, I don’t care what others thing.  The only One I seek to please is God, and, especially considering that no matter what I do, I will never please all the people in my life, the path to honoring God definitely is not the same path as pleasing other people.

I have come to peace with having a body… no, scratch that, an entire everything that is outside the mainstream.  I may not be thin, but I am still beautiful.  I may not even have a job, but I am still successful.  I may not be in a relationship, but I am still fulfilled.  I may rarely make it to church, but I am filled with peace and joy in Christ.  There is little about me that fits the world’s idea of “normal.”  I’m not sure there’s anything about me at all that is “normal!”  But, I can honestly say that I have found a way of living that honors what I feel called to do.

I don’t know that anyone will read a blog post and then find it in themselves to leave behind their aspirations for losing weight or proving their smarts or snagging a husband, or whatever other goals the world has dictated they seek to achieve.  I hope I can make someone think, even if it’s just the smallest amount, about maybe, just maybe, the secret to happiness comes down to ceasing to give a damn about what anyone else thinks.

 

Image

Elsa, girl– I GET IT.

Today goes down as the number one most complicatedly awesome days in my life.

I keep spiking fevers.  I’ve had five in the last eight weeks, all over 103 degrees.  The last one caused delusions.  I was terrified.  My doctor here, at the nursing home where I’ve lived for the last year and have spent much of that time learning to make peace with what I know is the best decision (and, BREATHE!  That was a long clause)… anyway, he came in to tell me, again, that it really comes down to expectation and mind over matter.  Think positively, and you’ll be fine.  Everything is fine.

Only, the same doc kept telling my family that my grandma wasn’t having mini-strokes.  She was fine.  Then, she had a massive one… and died.

I want to ask him if he blames his Alzheimer’s patients for their confusion, too.  “Just REMEMBER… just expect to remember, and you will.”

So, that’s what’s on my mind, and I was just raging last night.  Now, listen.  Since my crazy-miraculous healing experience from ALL mental health issues last May, I haven’t truly felt livid in almost a year.  I don’t do extreme emotions, other than joy.  I’m pretty dang even-keeled.  But, that being the third or fourth time this doc has made those comments, despite my requests for him to stop.  The situation totally called for livid.

I woke up early (that being 9 A.M.) and my mom took me to see Frozen.  Never have I been so invested in a Disney movie.  I twisted my body in my seat to keep from openly sobbing.

I know every bit what it feels like to fear your own power, to be terrified by the damage you know you will cause.  Having grown up with undiagnosed autism plus diagnosed borderline personality disorder, I wanted nothing more than to save my friends from the pain I knew I was causing them with my extreme emotions and attacks and rages.  I was different.  But, I also had intense mental illness.  I was ravaging my relationships.  I was a monster, and I just wanted to shut people out, shut myself away.  People loved me, and they fought their way in, and then I would ruin them, as I knew I would.  Cycle… cycle… cycle.

The snow glows white on the mountain tonight,
not a footprint to be seen.
A kingdom of isolation and it looks like I’m the queen.
The wind is howling like this swirling storm inside.
Couldn’t keep it in, Heaven knows I tried.
Don’t let them in, don’t let them see.
Be the good girl you always have to be.
Conceal, don’t feel, don’t let them know.
Well, now they know!

Since my experience on May 28, 2013, when I experienced a total healing of every drop of depression, anxiety, 12-year-old eating disorder battle, panic attacks, and borderline.  I am totally, utterly, gloriously free in the Lord.  Part of what came with that healing was the ability to recognize that my autism deeply routed in who I am, and that hiding it is akin to hiding the fact that I’m a woman.  In July of 2013, I attended my first major autism conference, and, through meeting other adults like me, I realized that not only can I be autistic… I can be myself, my autistic self, and be successful professional and personally.  n fact, I spent the day with a friend– a new friend, an AUTISTIC friend– and I had an absolutely delightful time in which my friend made me feel good about myself, joyful about my life, and close to my God.  That is friendship, and having found “my people,” I know how to move forward.

Let it go, let it go!
Can’t hold it back any more.
Let it go, let it go!
Turn away and slam the door.
I don’t care what they’re going to say.
Let the storm rage on.
The cold never bothered me anyway.

I dove into my studies in grad school.  I sought publication for my children’s book and started back up my burgeoning speaking career.  Autism is not my label.  It is my community.  I ceased all feelings of shame in shouting from the rooftops that God healed my heart.  I committed myself to writing my testimony so that others who have a past can learn to make peace with who they’ve been and the hurts they’ve caused.

It’s funny how some distance,
makes everything seem small.
And the fears that once controlled me, can’t get to me at all
It’s time to see what I can do,
to test the limits and break through.
No right, no wrong, no rules for me.
I’m free!

My years of living with a propensity toward breaking into sobs and rages at any moment have been replaced by totally relentless joy.

Let it go, let it go.
You’ll never see me cry.

Through writing my book, in my way of thinking and processing through my fingertips, I have come to make peace with who I was.  My heart was never evil.  I have to forgive myself for the hurts I caused.  I pray, daily, for “healing and wholeness” for the people I’ve hurt.  I smile and greet them when I see them, and silently pray.  I’m establishing new friendships, mostly within the ASD community.  I have gotten to a place where I not only feel peace with my past, but I thank God for it… for, it is only because of the incredible lows that God was able to demonstrate His power, bringing me to where I am today.

I’m never going back; the past is in the past!

‘I hear that people don’t always quite know what to make of me. I don’t know why that is… could it be because I’m a little bit artsy and more than a little bit in love with science? I’m full of spunk and gumption, unless I’m tired, then I’m fresh out of anything but whine. I’m conservative, except where I’m liberal. I’m sassy and creative but I can crunch numbers in a heartbeat. I have tattoos but I won’t wear high heels and makeup feels like I’ve just painted my face. I’m socially quirky and I like it that way. I believe in human rights, human kindness, and I believe in humanity. I’m 26, with a 65-year-old soul and a 14-year-old spirit. I believe in Jesus with ALL my heart and seek to live out His love with every word I speak and deed I do. I think kitties might be the pinnacle of perfection in the animal kingdom, pink that of the colors, and Diet Mountain Dew that of beverages. I don’t drink. I don’t smoke. I can never decide if I swear, as that seems to depend on the day. I am extremely stubborn but I change my mind frequently. Did I mention I love kitties?

Now, why on earth don’t they know what to make of me? “

Unapologetic about who I am in the One who makes me who I am.

Let it go, let it go.
And I’ll rise like the break of dawn.
Let it go, let it go
That perfect girl is gone
Here I stand, in the light of day.

Let the storm rage on!
The cold never bothered me anyway…

How can so many big emotions fit in such little drops out of my eyes?

The beginning of the end!

I’ve been really quiet here, but I’m less quiet on Facebook.  Find me there at Autistic Speaks.

Since my major healing experience on May 28th of last year, I’ve been writing my way through what it’s like to live a life free of mental illness, and more than that, free of most negativity.  I am TRULY happy, TRULY bursting with joy from every one of my seams.

Stuff still happens.  Right now, my attending (main) doctor believes that the reason I’m sick is because I’m too negative, which, number one, makes no sense because I’m NOT negative, and number two, simply MAKES NO SENSE.  In past years, that would have sent me reeling.  Now, it’s hardly a blip on my radar.  I am free from seeking fulfillment or contentment in anything anyone can do for me or provide for me, including things I can do or provide for myself.

Here is the first half of the last chapter of my new book, which may or may not ever become a real, published book… but I hope it does!

 

Today was just another day, but, more so than usual, my heart is bursting with gratitude.

 

My mom picked me up from the nursing home yesterday around noon.  The weather was foul and the roads fouler, and I couldn’t stop telling my mom how appreciative I was that she understood; we’d both been sick that week, so I hadn’t gotten out, at all, in 8 days, and for my always-want-to-do-well, anything,-as-long-as-it’s-new-and-different mind, eight full days in a ten by twelve foot space was mind-numbing.  She got that, and she made the drive out, forty-give minutes on snow and ice, to get me.  I am grateful.

 

First, we stopped at my sister and brother-in-law’s where I got to kiss the daylights out of my 8-month-old nephew.  He squealed, and he squealed.  And when we squealed back at him, he squealed again.  They moved back into town from New York City, where they’d both lived separately and then together, just two month before the baby was born.  It’s never far from my mind that I could be miss Mr. Baby (my nickname for him) because I hadn’t seen him in eighth months, instead of missing him now, after a separation of eight days.  I am grateful.

 

I have a lot of great loves in life… anything pink, Diet Mountain Dew, kitties, writing… another one is crafting.  I especially love to make things out of paper.  Knowing this, my mom and I stopped at the craft store to get a few things I needed to make my sister’s birthday gifts.  Money, I have not, so I make most of my gifts.  I was proud that I kept the supplies for this one to about $3.  We picked up a few clearance items as well.  I know money is sort of tight for my mom right now, so I was trying to get everything for under $15, as that’s all I have in my bank account for the rest of the month.  When we got to the register, they had Hello Kitty valentines.  I had my eye on them.  I didn’t have another $3.99 to spend.  I even commented how much fun it would be to hand them out to the other residents.  My mom said yes, but you can make them by hand.  We got to the register, and she had gotten me the much-coveted valentines!  The poor cashier heard more than she bargained for, as I chattered endlessly about how I’d hand them out and write that Jesus loves them on each and every one and oh, oh, I would use my new tiny little cat stamp to sign each one!  It’s a day and a half later, and I’m still so excited over the prospect of spreading the joy that is Hello Kitty (she is pink and she’s a kitty) to the other, elderly residents here.  I am grateful.

 

At home, I found out that my mom had dug up some pink, red, and white construction paper, ribbon, markers, and sequins.  Put together with the load of craft supplies I brought, we had the makings of dozens of valentines!  We spend today cutting, gluing, braiding, punching, poking, stringing, glittering and otherwise creating a bounty of paper love.  I have cards for my friends (with handmade envelopes!), my family, the staff here, all the residents (thanks to Hello Kitty!), and we even made decorations for my room.  As I said, crafting is one of my great joys in life (it’s a Mom phrase, which is a lot better than farting cross-ways, admittedly), and to know that my mom went to the trouble to spend a day crafting with me warms my heart right up in this frigid weather.  She told me that she was hoping to get together with my sister and I and do a different craft every month.  It’s such a joy to spend time with my favorite people doing one of my favorite things!  I am grateful.

 

I got back to my little nook in the world at the nursing home and began to put things away.  I have a hospital bed and two tray tables.  I also have something like five sets of plastic drawers, plus a built-in wardrobe; this is the totality of the storage space I have for my entire life.  I have a nightstand and a small refrigerator that works well enough to chill Diet Mountain Dew but certainly not well enough to keep real food cold.  All this, in a ten-by-twelve-foot half-a-room.  I’ve long had one tray table on the left side, where I keep odds and ends including drinks.  This is the side against the wall.  On the other side, open to the other side of the room and the door, I’ve had the other tray table, that holds my computer and cell phone (away from the drinks!).  Since I got here nearly a year ago, I have gotten in and out of bed on the wall side.  I decided to move both tray tables to that side, opening up the room-side of my space completely, which gives me a much easier way in and out of bed.  My roommate (who is 88 and sweet as can be) and I were laughing ourselves into stitches because my brain could not figure out how to get my body into bed on the other side!  I kept trying to get in backwards, since I always got in with my left side first.  I kept spinning in circles, tangling my many medical tubes and wires… oh, it was funny.  I did finally figure it out… finally!  Anyhow, as I was moving things around, I saw $3 and thought to myself that it must be a second $3, because I had just put the… oh, no.  It was the same $3 I didn’t just put in my bag.  So, I just had $3, not $6.  I then realized how in awe I had been in the fraction of a second during which I thought I had $6.  I though, I’m rich!  Then I praised God for the fact that I feel rich when I have $6.  It’s not that I don’t realize that, by not having money, I depend on my parents.  I get that.  But, by studying in school, I’m working toward the day that I will support myself.  I’m grateful for that, too, and I can’t wait to get to a point where I don’t have to ask my mom for every single thing I need.  But, I will forever be thankful for the perspective financial poverty has given to me.  I get $28 a month from the state and that it is, my friend.  But, by living through that, I am able to be grateful for every penny.  I see so much potential in $6 and what it can do, as, I think, billions around the world would also see.  I thank God that I know this.  I am grateful.  I’m also grateful that it’s so much easier to get in and out of my bed, now that I’ve finally figured it out!

 

I’ve had the same cell phone since 2008 or 2009, at least five years.  It’s been on its last legs for several months.  My dad doesn’t want to update the contract.  I’m okay with that, because I don’t like change, and my fingers certainly don’t appreciate having to acquaint themselves with new keys.  I’ve been perfectly content to keep my oldie-but-goodie, not-a-smartphone-in-its-wildest-dreams, stand-by phone, because it’s familiar.  But, five years into our shared journey together, I realized that I had to set it to rest.  My mom offered me her most recent phone.  She used it lightly for two years, but it’s in great shape.  I happily accepted it (although, my fingers weren’t quite so happy with me, as the set-up is totally different).  I’m as technologically-inclined as the next girl, but something’s been wrong with back-up assistant on my phone since I got it, and I don’t understand what the problem was or how to fix it, so my numbers aren’t backed up… not a problem, until now.  I spent ten or fifteen minutes and put them into my “new” phone manually.  I thought, wow–I’m a 26-year-old woman, and I have such few contacts in my phone that I can manually switch them over in no time at all.  Not to mention, quite a percentage of my contacts are doctors.  But, then, I thought that I should thank God that He has blessed me with quality of relationships over quantity.  How many people want exactly what I have?  I am grateful that I am the one who has it.

 

How many people are searching for happiness, for completion, for purpose?  How many people can say they know, deeply know, all three, at 26? 

 

I spent 25 years, five months, and 19 days in misery.  I was depressed, anxious, and unsettled in every way.  I had personality issues that made me look at everything from a selfish standpoint.  I couldn’t fix it, in small part because I had no idea what life could be.  I knew I was unhappy, and I sought desperately for a fix… I looked to other people, I looked to the never-ending search for physical beauty, and I looked to secular sources of “help.”  None of those things were ever going to change my heart.  I didn’t have the power.  No one else had the power.  Therapy and medication didn’t have the power.  I believe that meds (which, following surgery, I have not restarted except for a very small dose of one med– which I hope to come off when the time is right, and that time is not right now) and therapy are imperfect solutions.  They are the best the world has to change broken hearts, but they cannot reach into a heart and speak life, joy, and hope into it.  They can make depression manageable, sometimes very much so… but the only One who can speak into a heart is the One who created it.  It’s like a violin-maker– only the one who makes violins can truly repair a broken one.  The rest of us might be able to put the major pieces back together, but to get truly beautiful music out of it– and life, real life can be like truly beautiful music– the one who made it has to be the one to fix it.

 

One more note on medications and therapy, because I would be remiss if I didn’t say this: They absolutely have a place.  I believe that good counseling, which has to be Christ-centered, and openly so, can be a crucial part of getting well.  I was never able to find good counseling, and the worldly versions of make-your-dreams-come-true made me want to shout, “WHERE IS JESUS IN THIS?!”  I stuck with it for the first five or six months after feeling the change in my heart, because I wanted my family to be comforted, until they realized that the change was permanent.  If you’re  in good counseling, stay in it.  If you’re on meds, stay on them.  There may be a time when those things won’t be part of your life, but if they are right now, there is nothing wrong with that.  It doesn’t mean your heart isn’t or can’t be healed… it means that you’re on a journey.  As am I, as are all of us.

 

I wish I knew why hearts break.  The only thing I can say is another statement of gratitude.  Several times recently, while praying, my heart has poured forth with this: Thank you for my journey, Lord.  I immediately stopped and thought– what is this!  I am thanking God for all I went through!  Do I really mean that it was worth it all, all of the horrible nights, the self-harm, the starvation, the very broken heart… was it worth all that… so that I could be…

 

Here?

 

I’ll say it again.  Thank you, Lord, for my story… for every step along the way so that I could come to a place of knowing and loving You as I do today.  I pray for healing and wholeness for the people I’ve hurt along the way.  The only way I know to even try to right those wrongs is to seek to live out His love in every word, every deed, every day…

 

But as for me, I praise Him for the journey, yesterday, here and now, and whatever new joys come with tomorrow.

 

 

Old Made New

I doubt you’ll recognize this, but the title and the basic idea is from something I wrote a couple of years ago.  I’ve completely reworked it (it was prose, before) into a poem.  My assignment for my poetry class this week is to write something with a “complex tone.”  I hope this qualifies.

 

 

I love church, but it’s a lot of focusing.

So, I bring a bracelet with beads in my hands.

I rhythmically spin the beads to the pace of the sermon.

There is faith, hidden in my fingers.

 

I have autism,

So I can’t have empathy.

That’s what the “experts” say.

I say, why am I not the expert?

I live it.

My very human heart is hurting,

Smiling,

Fighting with you.

There is compassion, hidden in my fingers.

 

 

Try explaining how a girl who never shuts up

Can have a communication disorder.

What comes out might be right,

Or it might be anything but what I want to say.

Regardless, there are words, hidden in my fingers.

 

 

Sensory experiences can overwhelm

My ability to appear present.

The funny thing is that I am wholly present–

In the sensory experience,

I may look unaware, but looks deceive,

Because there is connection, intelligence, hidden in my fingers.

 

My face is crying. 

Am I sad?

I’m pounding my forehead with my fist.

Does my head hurt?

If I don’t have a keyboard,

How can I know?

There is ability, hidden in my fingers.

 

Though my voice

Does not have the words

To strike up a conversation,

My fingers hide friendship.

Though my ears

Do not hear,

So that I can make sense of the world,

My fingers listen so that I can understand.

Though my eyes dart back and forth

Rarely pausing to meet yours,

My fingers can see within,

And know a person’s heart.

Though I might never

Ask you how you’re doing today,

If you type to me,

My fingers will join you

In both the good and the bad.

Though you would not expect,

From such a quiet girl,

The hope and dreams

To change the world

I will do just that,

From behind my keyboard,

With my fingers.

I Pity You

Put this day in the record books!  The writing muse actually hit me BEFORE I was already in bed and half asleep tonight, so I’m actually here to put my thoughts to paper.  I have thoughts nearly every night, but I’m never awake enough to type them out.  I’m excited; are you?  I’m still beating the ticking clock until my meds kick in and knock me out, so I’m not not going to ramble on, but I’m truly excited to post.

I have health issues.  Just as a clinician came out and said that it really does look like it’s mitochondrial disease, which is a progressive, ultimately terminal condition, another clinician whose opinion is equally valid came out and said that she’s not positive… that my issues may be a cruel combination of 23 years of type I diabetes combined with a handful of other, seemingly unrelated issues.  At this point, what I deal with is a lack of gut motility that affects my GI tract from one end to the other.  I am fed by a GJ tube.  On Wednesday, I’m having surgery to remove my colon (which is nonfunctional) and place an ileostomy as well as a J tube.  So, I’ll have a G tube, J tube, ostomy, insulin pump, and port.  I’m in the process of getting fitted for a custom wheelchair, because my muscle pain, spasming, and weakness are getting in the way of me participating in things with my family as I’d like to.  I have generalized autonomic dysfunction, which affects not only my digestion but my bladder as well as my blood pressure, heart rate, and temperature stability.  I get migraines, often weekly, and I usually sleep 18 hours a day.

There’s the autism, too, which I refuse to include in the same paragraph as my medical issues because I don’t view it as something broken or defective but rather a part of a whole person– me.  I am who I am because I have autism.  I am made in God’s image.  My autism is nothing something to be fought against but something that allows me a unique way to experience the world and then relate those experiences with others.  We cannot choose our neurologies… if we could, I would still choose the one God gave me.

That’s really just an obligatory autism disclosure that no post should go without, even though it’s not directly related to my point.  I include it because some people see fit to include my autism in a list of reasons why I should be pitied.  My life is “small,” I’ve heard.  I’m “too young to deal with all of this,” “too young to live in a nursing home.”  They “feel so sorry” for me.

Here’s a secret: I feel sorry for the people who pity me, because, apparently, their notions of what life is about are so narrow that they are unable to look at the person I am and the way I interact with the world and see that I live every day to the full.

I notice it more during the holidays, but I do see it year round.  I watch people drag and drudge.  They drudge through their shopping.  They drudge through their holiday meals.  They drudge through their errands and their family time and their jobs.  Me?  I can’t say that I spend more than a few minutes on any given day mindlessly drudging through anything.  I am fully engaged as I am at the post office, as I decide in which order I will eat my animal crackers, as I pet my kitties and turn 26 and greet my mom.

I’m nearly halfway to my Master’s of Fine Arts, and I just earned another 4.00.  I have a book contract.  I get to speak to groups about autism and travel to conferences.  I live out much of my life from behind my computer screen, but that works very well for me.  I have two kitties and get to be auntie to the cutest baby in the world and really, what does the location of my bed have anything to do with negating all the amazing reasons to be joyful each day?

There is good and bad to nearly every situation.  There are always trade offs.  In my case, a nursing home and an ostomy and two feeding tubes and all my darn “lines” as a I call them (the medical tubing that connects me to my pumps and such) may not be my first choice, but since they are my only choice, I never really stop to consider any of the alternatives.  I did “lose” anything, because the reality of which you speak never existed.  There is this reality, and I intend to celebrate every moment of it. 

Now, just stop drudging long enough to join me!

I had this crazy idea!

I have one smallish writing assignment to finish my homework for the week.  Once that’s finished, I can enjoy birthday festivities.  Tomorrow, I have Christmas creations to assemble, then Sunday is my party and Monday is my actual birthday, which I will mostly celebrate at a genetics appointment at Children’s, but, that’s the way it goes.  I’m nervous, because it’s a doctor I haven’t met before; hopefully she’s ready for Lydia-birthday-excitement, the likes of which she has never seen before!

Anyhow, I’m ignoring my homework because I had a realization that might actually make some sense.  

Some people on the spectrum like patterns, right?  That’s a fact.  I always thought of that as a reference to visual or numerical patterns which, well, I like as well as the next guy, I suppose, but I can’t say I have any massive affinity for them.  I do have a fascination with connections, though, such as when I hear a new word in one context, then, a week later, hear it in an entirely different context, and, BOOM!– I envision a 3-D web beginning to form in my mind.  When I think of a concept, word, experience, etc, I immediately begin to follow the web from one point to another, pausing at all the different times and avenues by which I’ve experienced whatever thing.

Now, as an Aspie, I can be a little… different… in the conversation department.  Sometimes, others don’t follow my train of thought, and the things I say sound random.  Okay… sometimes, they are random.  But a lot of times, they’re not.  I got to thinking that connections could help me form the basis for having conversations.  If someone makes a statement about Thing A, then, when it’s my turn to speak, I can say something that has a first order connection to Thing A, as in, something that has a direct connection to it: “I read about that in this book and it said…” or “my relative was a really great whatever-er…”  But, the key is to stick to first-order connections, because second- or third-order ones (connections to connections rather than to the thing itself) wound probably sound confusing to the listener.  Random, in other words.

Having the visible map in my brain helps me to know what things I might say in a conversation.  I thought it would be an idea for teachers and parents to do with kids as sort of graphic organizers either for writing or possible conversation topics or whatever, since we tend to be visual learners.

Now it’s homework time!

 

 

Playing Catch-up

My mom and I went to OCALICON, which is a big autism conference in Columbus, a couple of weeks ago, and we had the best time.  I got to hang out with my friends, and we both got to learn tons about autism.  I went to sessions on alternative and augmentative communication, bullying, and even got to watch my two friends Chloe and Sondra speak about peer-to-peer mentoring.  The best part was spending time with all of my friends who totally get me and allow me to be whoever and however I am in that moment.  There are no requirements to engage in a certain way or to interact under certain rules.  It’s fun to hang out with my peers but also to be able to ask questions of the older generation who have been where I am now and found ways to get through it and not just survive but really thrive.  I learn a lot from the older Aspies… for example, when I listen to them, sometimes I learn the language I need to describe what I’m experiencing to my mom or whoever else I need to describe it to.  Or, I learn systems that might help me to become more independent with certain skills.  These conferences are autism-focused, but they allow me to be a person without having to comparmentalize myself.  I feel like a WHOLE person at conferences, and it’s a neat feeling.

My birthday is Monday, December 9th; I’ll be 26.  I am seriously gearing up!  I start to get excited sometime in about July (August this year, but I was distracted!).  We’re having a little family part on Sunday, and I have a Facebook “virtual party” with my friends.  The vast majority of my friends are online, but I really do know all of them.  Some, like Chloe, I’ve met in person, and she became one of my best friends.  I wanted a chance to have fun and hang out with my friends, so I made an event online :-)

Then, on the 18th, I’m having major surgery.  They’ll remove my colon (about 5 feet of bowel), create an ileostomy, give me a j-tube (this is in addition to turning my GJ tube into a G), and I already have a port and an insulin pump.  They may also do a muscle biopsy to try to get confirmation of mito, but I won’t know until I see genetics again, which is on my birthday.  I’ll be in the hospital for about a week, so I’m praying I can make it home for Christmas.  I know that, like many people, I have a tendency to slump into depression after major surgery, just from the trauma to my body… so, this time, I’m preparing myself.  I am loading my arsenal of fun things, surprises, and activities… things like new movies, sparkly slippers, and, my personal favorite, is that I’m collecting cards in the mail so that I can open them all at once after surgery and have a burst of joy!

I’m posting my address in case you would like to send a card.  Please feel free to share it!

Lydia Wayman
St. John’s Specialty Care Center
500 Wittenberg Way PO Box 928
Mars, PA 16046

I really appreciate all the mail.  I’m already super excited to open it with my mom.  It’s making the days leading up to my surgery a lot easier for me!  Thank you to each of you!  I’d love to thank people individually but I haven’t opened the cards yet and many don’t have return addresses, so I can’t tell who sent them yet!

There are a lot of ways that autism will make surgery and recovery more difficult.  One is that this is being done at a different hospital system, due to accusations of faking/intentionally creating my illnesses at the other major hospital system here.  I didn’t feel comfortable when those accusations remained in my records.  The new system may do things slightly differently low, and I am extremely routine-oriented.  I also don’t do well when doctors walk in and expect to talk to a 26-year-old, at least, not what they think a 26-year-old will be like.  Sometimes, I make social blunders, as in, hey, did you know doctors don’t like when you correct them about medical stuff?  Yeah, that.

Other than that, I’m enjoying my last two weeks of school… looks like another 4.00 this semester, so I’m glad about that.  The disabilities office is allowing me to use reading software and online text books next semester, because my eyes make it hard for me to read when I’m in energy crisis, and my muscles struggle to hold books up (if I have to read like 400 pages in 2 days or whatever).  I’m also getting ready for CHRISTMAS!  I adore Christmas, and I’m having a ton of fun making many of my gifts!

Please pray that my surgery and recovery go well and that my family is able to be together on Christmas!  I look forward to getting beyond this so that I can get back to school (my semester starts January 7th, so I am really hoping I am able to start on time), writing, speaking, and generally being awesome ;-)

Or something like that… ha.