Abundant Life

The best laid plans…

I sort of shuffle from one unexpected health crisis to the next.  I’ve had so many things happen with no warning in the last few years that it’s essentially impossible to get me excited.  I’ve woken up only to throw up twenty times a day, every day for three months until I had a feeding tube placed.  I’ve found my shirt and sheets stained with blood in the middle of the night.  Fevers, well, I’m quite used to the low-grade, long-and-slow push of an autonomic fever that stems from my body’s inability to maintain stability in its temperature, heart rate, blood pressure, digestion, and bladder–all that unconscious stuff.  But on the 23rd of September, I had a 12-hour fever from hell.  It only hit about 102, but the pain was horrific and toward the end, I was having trouble breathing.  I called home health in the wee hours and was told to give it another half hour and to call 911 if it didn’t come down.  An hour later, it was down to 101, and I crashed for the night.

It immediately made me think of last winter.  Five times in seven weeks, I had bad fevers, just like that one, except higher, up to 104.  The pain was horrific and I would get confused, even delirious at one point.  Since I have a central line, sepsis is a massive concern, but two sets of blood cultures (four bottles each) only resulted in one bottle growing bacteria.  The attending started IV antibiotics, but four days later, the infectious disease doctor stopped them, saying that I was not infected in any way.  Oddly, the fevers stopped….

Until last week.

A second one hit on the 30th.  I was supposed to leave the 31st to travel 12 hours via car to Atlanta to see a super-specialist in hopes of getting some majorly-needed direction on some persistent and critical issues… with any illness or prolonged fatigue, I keep going through periods of what appears to be a metabolic crisis, resulting in daily blood sugars of 300 and 400 and even higher.  This is not okay.  My local doctors are stumped, and we’re counting on the specialist to have a broad enough view to figure this out.  But, of course, Monday night into Tuesday morning, the fever struck.  Home health was set to come the next day to draw labs, including cultures, but the problem was that they would not be back in time to have a firm answer as to whether I was okay to go on to Atlanta.  I talked to my PCP at 5 AM and we agreed that 911 was my best option to get labs done quickly and have a sense of peace on my trip.

This is me as I waited for the ambulance.  A little flushed, but you would have no idea what my body was fighting… in fact, the fact that I ALWAYS “look good!” can mean that doctors don’t realize how sick I am.

septic

In the ambulance, I knew.  In the same second I saw my vitals… heart rate going over 160, blood pressure 80/40, temp 103.5, and O2 saturation right around 90.  I was having trouble breathing, and my arm kept falling off the stretcher but I couldn’t get it together to pick it back up.  The paramedic in the back with me picked it up every time.  I knew.

So, this was when I was hanging out at the local hospital ER waiting on labs:

passavant ER

That is not a face I make.
The local hospital wasn’t up for all the tricks my body likes to play, so I was taken to a bigger hospital downtown.  It’s the first time I’d been there, and I was really scared of having new doctors take over my care, especially as sick was I was.  I still don’t have an official mito diagnosis, and it was clear that I would not be making it to Atlanta.  I was on the PCU, or Progressive Care Unit, also known as “step down” from ICU.  I had the best care I have ever had.

My port made it known that it was obviously infected:

infected port

I had emergency surgery that night to have it removed.  Well, first, the big freak out was that I had absolutely no access.  It was impossible to place an IV.  That is why I had a port in the first place, even though doctors have tried to tell me I “didn’t need it” and that I was young, so I “must have good veins!”  I. do. not. have. access.  They were discussing a femoral (groin) or IJ (jugular, in the side of my neck) line but opted to place a PICC (like a super-hefty IV placed into the upper arm that has lines that go to the vein above the heart) in hopes that I did not have a particularly nasty bacteria that would require that PICC to be removed and another one placed for long-term antibiotics.  Central lines, like ports and PICCs, cannot be limitless over a lifetime, so it’s not a good idea to use them unless absolutely necessary.  Every point of access used today is one that cannot be used in the future.

PICC 1

My port grew gram positive cocci in clusters (surprise–the same bacteria that one bottle grew last winter), and then the peripheral cultures (taken from my wrist and arm) also grew.  I was septic.  I was having extreme pain when I breathed in and had to stay completely upright.  It turned out that I did have the aggressive bug (staph aureus).  It had grown in clots on my heart which got thrown into both lungs, and the bottom of the left one had collapsed.  I’m not sure why it took three days of on-and-off screaming to make that determination, but staying on oxygen really helped with the comfort level.  I’m a tough cookie when it comes to pain, as it’s sort of a never-ending thing, so if I’m ballistic and screaming with every exhale for three hours, um, I’d appreciate a little pain control.  But my dang blood pressure was really low a lot of the time and so they were afraid to give me a lot of pain meds.  That was rough.

One thing I was extremely glad I did was have photo proof of some of my body’s quirks.  Like, when I say, “Dude, don’t come near me with that tape,” I tend to get blown off.  With a PICC line, you have to have a sterile dressing over it at all times, or you risk an infection just like the one I’m fighting.  Every single adhesive except one very strange one causes… well, much like this.  And those blisters burst, and that is a really huge infection risk.  Fighting doctors about tape reactions was not a thing I was up for doing, so I whipped out the photos I have documenting my reaction to every freaking tape under the sun, and, voila, “No tape on skin!” went on my board right off the bat.

Sorbaview 2

Even in the worst of it all, I remember that quirk and laughter only stops when I choose to leave it at the door and that, if I’m grumpy and miserable, I’m the one suffering the most.  So, I choose to bring my humor along with the spare Diet Mountain Dews in my suitcase.  I have to use many of my own supplies while inpatient, because I’m so sensitive and my body is so particular that I can often only tolerate one product.  I have to pack a medical suitcase to go to the hospital.  Long story short, I had to use my own feeding pump and tube feeds… but I didn’t have clamp to attach my pump to the IV pole, since I usually use a backpack.  Dragging my backpack AND a pole got old really fast, so I sort of jimmied the pump up on the pole using a box of hospital tissues, medical tape, and a cut piece of tubing.  I was seriously proud.joey pump

On Friday, I got my second PICC, which, unfortunately, had to go into my right arm.  This is the line I’m stuck with for six weeks, attached to IV antibiotics round the clock.

PICC 2

When they got my skin-safe dressing on, I looked at it and proclaimed, “it’s like the little black dress of line dressings… hugs all the right curves and just a little bit see-through!”

I’m also hooked up to continuous IV saline and my tube feeds and their hourly-flush.  If you’ve lost tracked, that makes a 2-liter bag of saline, 325 mL of antibiotics, 600 mL of tube feeds, 500 mL of potassium-infused flush, three pumps, and an extra charger, all in my backpack.

“Don’t lift more than ten pounds with your PICC line, except, here, take this!”  Uhhh huh.  It’s not ten pounds, trust me.  Closer to 30.

backpack

Also, I want to know—who’s this Rapunzel chick and why does she think she has dibs on being tangled?  All she has to worry about is having her hair pulled.  I have six lines to manage, plus two chargers to unplug and realign and re-plug every few hours when I get up in the dark to go pee at night, and I have to worry about pulling my line or my tube out.  Hand over the crown, Rapunzel.  I’m the real princess.

Strangers probably look at me and see a medical onslaught, and people who don’t know me well probably look at what they think they can see of my life and think it’s sad and small.   If you think my world is sad, I think your perspective is much sadder.  Some think that to really live is to go to parties and getting the next big promotion and getting a fancy new car… I don’t know anything about any of that.  What I do know is the joy of coming home to a kitty who has missed her mama for five days, and the overflowing heart of making it back to the autism center to find people who were waiting until I got there just so they could see me after a few weeks away, and the support of a family and greater community who go so far beyond tolerance or even acceptance to outright celebration of quirky me, and… and this… this little guy catching sight of his aunt, and getting to show him the sensory room and the train table… and laughing with my big sister while we (totally uncharacteristically) stuffed his face with raisin cookie…

This is life, abundantly.  It comes from the combination that is the peace and joy and hope and faith and trust and love of God in me.  In other words, it’s not anything that depends on the out-there of it all, on the circumstances.  It’s everything to do with the One who is within.  He goes everywhere I go, and that’s why his promise is true… because with him in my heart, there is no way to have a life outside of abundance, no matter how strong the storms around me.

zelie fall festival 2

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train table toto

“I came that they may have life, and have it abundantly” (John 10:10).

Note: I’m still pushing through school as planned.  I have less than a month to go to finish, and I plan to keep going and to maintain my 4.00!  My professors and advisor have been awesome.  I did have to reschedule Atlanta for December, and I missed a big reception for a state art contest my stitching won, but I do plan to make it to OCALICON and speak!  I’m beyond grateful for the support… logistical, financial, emotional, and everything else imaginable… of my family and community to keep me afloat until I’m totally back in business, which is closer by the day.  I know I’m behind on my usual advocacy stuff; if you’ve messaged me or emailed me, please know that I’m only just out of the major scary woods and still only awake maybe eight hours a day.  Medical care is my number one goal, then school, and third will be getting some work hours added back in (from home at first).  I know there are a lot of exciting new projects and publications and movements and things going on, and I’m cheering you all on but cannot commit to participating like I normally would.  It won’t be long, so please hold me a spot and I’ll be back to spreading quirk-dom and writing for anyone who will have me very soon :-)

What words don’t say

I’m not a huge script-er.  I mean, okay, aside from kitty scripts, which probably do comprise half the total things I speak.  How be my baby tees?  Kitty meow?  Meow meow meow meow MEOW meow meow meow–who said that?  Is Tia fluffy? (Note: Tia is a Persian and has never been and will never be anything BUT fluffy).  Does Tia have mats?  Did Bob brush her?  Did he get them?  Are you sure?  Where did she sleep?  How did she sleep?  Where is she now?

When I finally entered this decade and got my first iPhone a few weeks ago, my mom FaceTimed me that evening.
Me: Hi, Mom!
Mom: Hi, Lyd!
Me: Mom, I see you!
Mom: I see you too, Lyd!
3…
2…
1…
Me: Can I FaceTime Tia?!
….
Can Goose FaceTime Tia?!

Come on.  Tell me no one saw that coming.  If you give a Lydia an iPhone, she WILL want to see any nearby kitties.

I actually texted my mom earlier, “meow meow kitty meow.”  What does it mean?  Well… it… I guess it’s sort of verbal repetitive stimminess making its way into my writing/typing.  It doesn’t happen that much.  I tend to be more purposeful with typed words.  Verbally, I get caught in cat scripts with my mom, especially, and especially-est in the car.  I also have some odd structuring of my words; I think the other day I asked something, “But why did we pick a big such a one?”  Or, the one that comes to mind is when my mom called my sister after a doctor appointment and I asked, “Mom, did you tell her that they would take off my butt?”  The meaning is totally there–if you have the context and know me–and my mom just about always understands the first time.  These communication quirks are sure quirky, but they don’t lead to frustration because I am mostly understood.

The frustrating part is directly related to overstimulation… which shuts down some pathway that must be integral to connecting my mind to my mouth.  I know EXACTLY what I want, but in stores or any socially chaotic environment, it’s pretty tough for me to get it out of my mouth.  The grocery store is the number one problem place.  I walk up and down the aisles, mildly stimmy hands, and stare at the shelves… walk… glazed over stare… and my mom will ask, “What are you looking for?”  I’ll respond, “I… the… Mom? MOM!… it… uh…”  I’m so totally visually overloaded that, first, my brain ceases to make sense of ANYTHING visual coming at me.  I no longer know if I’m seeing crackers on those shelves or monsters or hockey pucks.  I could be anywhere and looking at anything.  The problem is that I also cannot communicate what it is I want, so it’s hard for anyone to help me.  I know exactly in my mind, but I can’t get it out.  So, we stop, and I regroup and get exactly the thing in mind that I’m trying to find–match the mental image when the right thing is in front of me.  Simple enough.  Except that stores are quite adept at moving their stock, not to mention brands change packaging, price, package size… and if anything is not just the thing I had in mind, it takes some near-meltdown unhappiness until I can make a decision about the next-best product.  I do not decide well under sensory stress and a downward cycle ensues.  If you see a young adult losing it on aisle 17, please, give the girl some grace.  I don’t want to make a scene in the store.  I Just want MY crackers and MY fruit snacks and MY yogurt and to get the heck out of there!

But, let’s say everything is totally as it should be.  In these cases, I’m very verbal, and THAT is an understatement.  I’ll lecture anyone who will hear me about the genetic history of the quagga, or the false basis of certain political beliefs (and I don’t get very into politics), or almost anything to do with autism.  Information is my game and the key to… everything.  I can’t get enough.  I’m a junky for obscure and nerdy facts, even if I’m not really all that nerdy.  Quirky is more like it.

The thing is that no amount of prattling about the glory of facts and new information can communicate the complex emotional stuff that I really DO feel and understand.  Until recently, even my family thought I just didn’t get it, didn’t feel it.  At 26 with a diagnosis as a good many words at my disposal, if those closest to me believed this… then I have a deep fear for the millions of kids and adults who are younger, undiagnosed, and less verbal.  Behavioral therapy, at its core, disregards sensory and emotional circumstances.  So, you have a minimally-verbal five-year-old who hits his teacher and you want to address it with behavioral strategies?  Until the kid has a system in place with which he can communicate pain, upset, stress, fear, frustration, anger, sadness, and a downright I DON’T WANT TO–the issue is one of COMMUNICATION and not behavior.  It’s absolutely cruel to ignore that a child could be petrified that he’s being asked to do a task he doesn’t know how to do or scared because a kid is threatening him or calling him a freak or in pain because he has a migraine from the lighting… and approaching him with a strategy that essentially says, “None of that matters–you have to act this way regardless of any of that.”  Never teach a child his pain doesn’t matter.

In my final term of my grad program, I’m in a class that focuses on Place and Setting.  I’ve been using the assignments to explore the complexity of relationships with my family members.  I’m writing about them in real and honest ways, about the memories of childhood through the lens of what I know now.  And, often, what I knew then.  I read my mom the piece about my dad, and her response was, “SEE!  This is the SHIT you always had in you but you couldn’t tell us!”  Oh, Mom, but now you know that, and now you know that it IS in there.  We’re good, Mama.

This piece isn’t finalized, but it’s about my Nana, my dad’s mom.  Please read it, and then try to tell me I don’t understand complex emotion, experience, and relationships.  Tell me I’m not capable.  I dare you.  As sarcastic as that way, this isn’t: I dare you to presume competence in ALL of us–to believe that we DO understand even that which we cannot express.

The World’s Her Stage

The Nana I knew had been Mary Lou for so long that her given name was nothing more than a fascinating bit of trivia.  Her birth date was documented in her records as “two-twenty-eight-nineteen-fourteen,” which she always reported with a break in eye contact and an upward tilt of her chin.  World travels and brilliance be damned; those two years were the source of untold worth, if only to her.

I never knew Mary Virginia, born the 28th of February, 1912.  I imagine her as a child; dark-haired and small for her age, with an early surety that she did not belong in the back country hills and one-street town where people spoke of the holler and catchin’ a crawdad over yonder crick.  She must have been out one sun-kissed, late-summer morning, traipsing through the grass with a growing annoyance at each new dew drop affixed to her shoes.  Near some tree, unidentifiable to all but her—she would know just the tree and its every nuance—on hill among countless others in a place where the earth rolled like the wrinkles in a blanket, she buried Virginia and 1912 once and for all.  They did not suit her.

Somewhere in her later years, those details became lost, if not as bits of trivia considered amusing to her grandchildren, then at least as they informed any part of her identity and the woman we knew.  She’s one who seemed to have come into life in middle age and then grew wise—much like the rest of us—but never really old.  In her world travels, Mary Lou fulfilled what must have been a lifelong desire to see, to go, to be—that is, to become the person she always felt in the mirror.  That three-week trip to far-off places confirmed the diversity of the human experience and served to solidify her faith in the here and now.  The water in the ocean does not belong to a place but to everyplace, and as she looked out at the great blue expanse over the railing on a boat, her faith in the hereafter slipped from her fingers and fell deep into the waters.  Those waters were immediate, rocking and alive, and they were beautiful, and she was sure they were all anyone needed to see to believe that beautiful things were the purpose of it all.

Granddad Clarence was the love of her life, but I only know this from writings not really made known until they had both passed on.  Some years before I was born—I don’t even know just when, as that’s how often she talked of him—she lost him to cancer.  With his passing, so too did she lose some unspoken part of herself, probably one so deep that she could not bear to reach into it and carry the pain forward; she went onward alone, supporting herself against the trustworthy constant of beauty itself, chasing it as the thing to be sought.

Her poems were a testament to her love of nature’s perfect beauty, and yet she was very careful to make up her face just so and paint her nails and lift her chin as she looked away to say “two-twenty-eight-nineteen-fourteen.”  As I travel back to my dreams of her childhood, back to the expanse of the ocean, back to the hospital where Granddad passed… I think, perhaps, that she did not so much lose those parts of herself as she quietly but very decidedly left them there.  Her control on things was rarely loud and forceful and nasty; it was quiet with a grasp that was surprisingly firm.  Mary Lou would not lose a thing.  Even the hair on her head obeyed her demand for dignity; when she passed away at 89, she had not a single gray strand.

Except that one time with the diamond.  Nana had a beautiful diamond ring.  “It’s a real one, one of my good ones.”  I spun it on her fingers, as when her fingers grew thin, she wore it around her neck for safekeeping.  Nana thought ever so highly of my other grandmother, her polar opposite in every way, and the two of them were the closest of friends long after my parents divorced.  One afternoon, the three of us pulled into a parking spot to get lunch at the local diner.  As we walked across the parking lot, Nana realized the diamond had fallen out of its setting.  I don’t remember the search, except for the drear and rain and chill in the air, but I do remember that the beautiful diamond was found in a puddle in the parking lot.  I’m not even sure who found it; I’m also not sure it matters.  She was not ready to leave it, and so it would not be lost.

“This is my good diamond, see?  I’ll leave it for you one day.  It’ll look just lovely on your finger, hm?”

Whoopsy-daisy; I forgot a title.

As I work on my thesis and also try to manage and mind the other writing obligations I’ve taken on, I’ve become well aware that my intros are always too long.  I have a point, but first, I have to lead into that point, and, well, I have to lead in to the lead in, too.  This is the third step removed from my point–in case you wondered.  

Now, this transition is acting as an extremely overt but also structurally sound and case-in-point connection between the first paragraph and what I’m about to say, which is that I’m not like other people.  I was thinking about it earlier, as I was telling my mom that my professor for my (final) thesis work this term seems to have a similar quirky sense of humor.  I hope that means she’ll get the zillions of funny points in my writing that, well, no one else seems to find funny.  I crack myself up all the time, like, um, the first sentence of my paragraph here.  I don’t think anyone else gets it, but I’ve learned to be okay with it, because I’m laughing, and laughing (as long as it isn’t at someone else’s expense) is pretty uniformly a good thing, no matter how weird the reason.

Listen, if I can deal with cleaning the litter box by pretending I’m digging for treasure, well, I might be weird but I’m also probably having a far better litter-box-cleaning experience than someone who is normal… and miserable.  I’ll take weird but happy, very happy.

I don’t just have interests and passions.  I am so wholly obsessed with cats that life without them isn’t a life at all.  Spending 15 months in nursing home, I lived for going home and seeing Lucy.  Every other moment of the week was in anticipation of that first little chirp she’d say as a greeting, and the thousand chirps that followed in the few hours we were together.  Now, after two months in our own, teeny-tiny studio, I don’t think either of us has forgotten, or will ever forget, the time apart.  She’s sleeping on the arm of my chair as I type.  Every time I touch her, she chirps the most pleasant little kitty noise.  It’s like a chirp button.  Every touch, every time.  I love it. 

I love her toes.  I love the soft spots behind her ears.  I love the pattern on her belly, and the downy fur on her chest.  I love her wide-open eyes.  I love when she sits like a loaf of bread, and I love when she sleeps in a circle, and I love when a little doze on the arm of the chair turns into a sleep just a bit too deep, and she begins to sprawl and then startles herself when she flops off the limited space.  I most especially love when she lays on her back, paws in the air, and looks at me with a cock-eyed expression that is so familiar but the meaning of which I cannot discern.  I love sleep eyes.  Most of all, I love that when I wake up over and over at night, or when I can’t sleep at all, she is snuggled up against me and always within arm’s reach.  She and I are we.  

I had a terrifying dream the other night.  I don’t want to go into detail, but it was cat-related, too.  I woke up almost panicked, and I reached for Lucy.  Chirp… the chirp.  I love the chirp.

I live hard.  Intense is the word I hear a lot.  When I do something–anything–study, write, work, learn, explain, love, dislike, try–I do it with everything I’ve got.  Saying that “I don’t like” some feeds doesn’t begin to cover the fact that I want to gag when they’re in the same room and have never put many very typical foods anywhere near my face.  “I don’t like loud noises” doesn’t describe my rigid arms and clenched fists at my sides when I’m in public places.  What if something beeps, or worse, what if something bumps me?  “I like words” doesn’t cover the all-encompassing need to write or the fact that I spend nearly every waking hour either reading or writing, because I’m not sure I exist if I’m not taking information in or wrestling with it as I put it back out.

I’ve always known I’m not like other people, but I also had an inherent certainty that I was the one who wasn’t okay.  The autism community, well, we’re broken.  I’m not sure why anything thinks that a huge conglomeration of broken people–a church or a family or a group of people focused around a cause–would be anything BUT broken.  The sum of a whole bunch of brokenness sure ain’t perfection… but it IS completion.  We are not perfect, but together, our abilities make great things possible.  We don’t need to be perfect to be complete.  

Sometimes I think, at least these days, as things are forever in flux (and oh, how frustrating that is), that autism is less of a diagnosis and more of a way that I find my tribe.  I don’t need a diagnosis to know that I’m not like other people.  My strengths and loves and passions are too strong, and my weaknesses are just too weak.  Early on, I needed the word “autism” to give me access to reading that taught me about myself.  I had such a lack of knowing who I was that I had to read external accounts to realize that, why, yes, I do have major sensory issues.  I didn’t know until I read about common behavior that clued me in to the fact that I do those things and thus have a root cause of sensory dysregulation.  Autism was a word that opened up the knowledge of who I had been and who I will be.

But now, I know.  Learning that I wasn’t the only one gave me the all’s-well to discover myself and feel okay about my quirks.  I am well aware, now, that I absolutely love kids’ movies and hate to be surprised, that I can’t make decisions when I’m overstimulated (grocery stores are the bane of my existence), that I lecture far better than I communicate, and that cats are my world.  I no longer need to connect to the experiences of others to know what’s in me… or to be okay with it.  There’s no changing it, so, I figure I might as well accept the quirks as I seek God in everything I do.  As simple as as complicated as that.

Now, when I hear “autism,” I immediately think of other people… the kind of people I want to know.  I want to know people who don’t do masks, who don’t speak in sarcasm, who get past the chit-chat and talk about real things that matter.  Parents, grandparents, kids, adults, diagnosed, undiagnosed, verbal, nonverbal… this is my tribe.  These are the people who don’t blink an eye at my monologues, who text me with a request for a current picture of my cat (because the one from last week is now outdated), and who help me do my laundry while snuggling Lucy between loads.   They’re the toilet paper fairy, when they drop off toilet paper on my doorstep when I forgot to get it at the store.   They’re the mentors who boldly live out their faith, who remind me that sleepless nights (a common occurrence) are the perfect times to pray.  They’re the kids who trust me with their real selves… I hope because they know that, whatever and whoever they are, I’ll affirm their awesomeness.  

The constant flux of the world–relationships, understanding, and my very messed up body–is an overwhelming thing.  But I have an army… not behind me, but with me.  In step, alongside, we’re in this beautiful mess together.  

This Writer’s Life

I’m finishing my second-to-last term in my grad program this week; after a one-week break (ten days if I push and finish up faster) and then another ten-week term, I’ll be the grateful recipient of my Master’s of Fine Arts in English and creative writing with a nonfiction concentration.  

I. Am. Burned. Out.  I can’t describe it and I can’t explain why I wake up in the morning and open Blackboard (the platform for my online program) and feel nauseous.  I use Facebook for two reasons, and the main one is a chance to write and connect with people through that writing.  I get nearly buzzed at the chance to put words together on that screen, and yet, click over one tab, and the guttural disgust returns.  I put out 10,000-12,000 words a week in coursework alone, and that doesn’t take into account blog posts, Facebook posts, editing work, magazine articles, work at the nonprofit center, emails… 

I love to write, and it is the most natural form of communication I know.  My most natural form of understanding the world is synesthetic experience, but that isn’t communicative, so, writing it must be.

I put together a 30-page final project today, and tomorrows will be closer to 60 pages.  Then it’s ten weeks.  One term.  

I love it, but excuse me while I go throw up.

It’s a funny thing, and I’m not sure where in the cyclical process to start my explanation of what’s funny.  I wrote the bulk of my thesis in this term, and early in that course, we talked about the transition from “student” to “writer.”  I thought to myself that surely I had made that transition sometime around when I published my first book.  And then I thought that I actually did the whole thing bass-ackwards (what else is new?  Hi, I’m Lydia, and I don’t every do anything the normal way…).  I published books before I ever took a post-secondary writing class.  Leave it to Lydia, and I say that with both a bit of pride and a hefty dose of eye-rolling.  I appreciate the ways in which I’m different in terms of personality and education and talent and vocation and identity, but I wish my body would be a little less different and at least have a disease that made sense to someone.

The other element in the cycle is that the idea of connection and intersection and greater meaning was a huge theme in the last few months.  My thesis started with that very idea, precisely stated.  I only had two classmates (minimal enrollment course), and one of them is writing a memoir piece that aims to subtly show the ways in which every life experience contributes to a greater meaning.  My thesis ended up veering in a different direction, but it started with intersection and, with that note in its conception, it will always have ties… because everything does.

I thought I was a writer and that the thesis process was a formal recognition of that status by the academic community.  Yes, you write, and we can verify that you have sufficiently completed so many credits of graduate-level work and produced and defended a worthy thesis and, now, we proverbially knight you with this piece of paper and allow you to teach undergraduate students about writing.  I get it.  And I don’t.  My mom often says, “It’s the spectrum in you,” when explaining any one of my innumerable quirks.  And, in this case… it’s the spectrum in me that makes it difficult for me to recognize societal practices that don’t always make sense.  But, I acquiesce without any argument in this case, because I so enjoyed the coursework and thesis process.  I did the first year of it from the nursing home, and it gave me purpose and direction and hope that I had a future.  That’s pretty invaluable, and so, whether I objectively improved my writing ability or not, I am ultimately grateful for the journey.

But, now, here is the funny thing.  I’ve written countless (okay, not really, because there is no such thing is truly countless… but, in this case, I use it to mean “I’m too lazy to technically count”) times on this blog about the fact that I can only truly process my experiences and my world when my hands are on a keyboard.  Until I’ve sorted through it in black letters on a white screen, sufficiently enlarged so that my eyes can actually read the font, life feels a lot like chaos and overwhelming sensory and emotional input and relentless, anxious expectation of the other shoe dropping.  

In the last weeks, I’ve found myself thinking, but not in my usual sensory impressions… I think in language.  I think the way I write, in that, just as I sit down to type and my brain begins to make connections from various, unrelated experiences, now, in quiet moments, my brain has begun to see those connections but without a keyboard.  I always thought it would be akin to painting with no brush… but, to take the analogy further, it might be somewhat like finger-painting.  I don’t have fantastic control over the linguistic swatches that run through my brain, and I don’t yet have the ability to compose in my head and then transfer verbatim on a keyboard.  I feel a bit like I’m replaying pieces a conversation in my head, only, they’re totally novel ideas.

What this changes is that writing has essentially invaded every corner of my existence.  When I make the bed or take out the trash, I weave together this experience and that one and find that words, actual words and not just sensory recollections, are popping up in relation to the connection between the two.  The result is that everything I do, I do with an eye toward writing and understanding and connecting, and, well, where is the separation between those things anymore, anyway?  Without consciously thinking about it, I live with the questions of what the thing means, what it has to do with what I already know or have already experienced, how it fits into my worldview, and how taking in facts or nuances about the new thing might affect my overall perspective on other things.  

Because that–THAT is what I do when I write.  Connect.  Intersect. In short, process.  

There is nothing we do or know or see or experience that isn’t woven into everything else.  Personally, that immediately drives me to worship the God who has control over all of it, from the kings of ancient Babylon to my kitty’s sore ear (which, thankfully, is better), from the heart-breaking situations the world over to the number of hairs on my head.  

I wonder if, now, I’m really a writer, or whether–much more likely–my experience of being a writer will change over time.  It is both cause and effect, as my identity changes in response to my life, while my life changes in response to my identity.  The holiest of hands weaves it all together.

Go Big… or Go Home

This post would be the “go big” part of that statement… no-holds-barred, taking the issues head-on.  It’s posted in full on my Facebook page, too.

Over, and over, and over, I hear parents say that I don’t know what “real” autism is like (oh, I guess my 20-some years of outright suffering was just because I felt like it) and that I’m standing in the way of their kids getting what they need. They say that their kids have behavioral issues and can’t communicate, and I say, “I believe he can communicate, and I’m happy to help you in whatever way I can to make that happen.” No one has EVER taken me up on that… but many do go on to continue to throw attacks at me. The very last thing I want is for any child or family to suffer. Not only that, but I’ll do whatever I can to turn things around. People don’t just refuse the help, they continue to be accusatory… and you know, I’m starting to think that people want to suffer, that it’s become a martyrdom. I don’t want to believe that, and yet I don’t know what else to believe.

“Cure” has become such a dividing word. I realize that, when parents say they want a cure, they almost always mean something different than advocates like me hear in the same word. Parents mean that they want to minimize their children’s suffering. They don’t want a different child, but they don’t want the child to be in pain, without a way to communicate, and self-harming.

I don’t know any advocate who DOES want children to be in those situations. The problem is that the one and only way we are anywhere, remotely, even on track to think about finding a cause, let alone a cure, is by way of genetic testing and a prenatal test. Essentially, the idea is that an unborn baby could be tested for his genetic risk toward developing autism, and parents would have the choice to abort. We have this ability with Down Syndrome, and the reality is that over 90% of fetuses known to have DS are aborted. Why are we kidding ourselves into thinking we’d see anything different with autism? I very well may have never had the chance at life. I very well may not know some of my amazing friends, some of whom can speak and others of whom cannot.

The thing is that, had such a test been available in 1987, my parents might have learned that I would grow up to need a feeding tube, IV support, have an ostomy, and an insulin pump. They might hear that I would be in constant, intense pain, that I would spend a lot of time in the hospital, and that I would need multiple surgeries and deal with severe fatigue, autonomic issues, fragile skin, joint pain, and be almost unable to eat. But, no prenatal test has the ability to tell my parents that I would love kitties to the extreme, write books, speak at national conference, earn my Master’s, or find a way, despite it all, to live independently. They would not know that I would have a deep, abiding faith and uncrushable joy. The tests can tell you all the bad, but they cannot and will never tell you anything about the good–the person.

I don’t for a second stand in the way of easing suffering, but my faith and my belief that my life is worthwhile, even with all the crap my body throws at me, mean that I will not stand in support of a test like that. Please don’t throw accusations of “not knowing what real autism is like” or being a “quirky genius” at me, as if I don’t know pain, rejection, and isolation. I don’t want anybody to suffer, and it breaks my heart when I see kids in crisis. I’ll do whatever I can to make good on my promise to help anyone who asks. Know that when you support a cure, in its current realistic possibility, and the organizations who are working toward it, by default, you’re supporting a prenatal test. I hope that, in the future, we have a way to ease suffering without undoing life. Until then, I’m glad we don’t, because no pain makes the joy not worth it.

 

Tests could tell you that all of this would be a part of my life...

Tests could tell you that all of this would be a part of my life…

... but not about the joy of having the cutest nephew in the world!

… but not about the joy of having the cutest nephew in the world!

...and not about writing my own books!

…and not about writing my own books!

... and not about friendship like this, or the Disney trips it would involve!

… and not about friendship like this, or the Disney trips it would involve!

... and not about autistic community like this!

… and not about autistic community like this!

... and not about faith like this.

… and not about faith like this.

I’m Not Your Inspiration

Early in my public appearances in relation to autism and my work in the field, I heard one message repeatedly: You’re so inspiring!

Inside, I cringed.  When you meet someone with a disability and tell them that you’re inspired by their very existence, it sends some pretty gut-wrenching messages.  You’re telling that person that when you imagine being in their shoes, you probably wouldn’t find it worth getting out of bed in the morning.  You’re saying, “You really have it so bad that you’re a brave soul just for getting dressed and leaving the house.”  You’re insinuating that the person is somehow remarkable for doing very everyday things.

Listen, when I write or get up and speak, I’m just doing what I do.  Your work might be in an office or a school.  Mine is behind my computer and interacting with people.  I’m doing what I do best in a way that I hope will benefit others with the mind I’ve always had and the only body I’ve ever known… just like you do.  How would you feel if someone said that they’re inspired that you have the gumption to live a public being as short as you are, or that they’re inspired by your willpower to walk from here to there?  You’re just doing what you do with what you’ve got.

When you post a meme of a person with Down Syndrome accompanied by the text “the only disability is a bad attitude,” you undo all the work I do every day.  Disability doesn’t mean that anything is wrong with anybody.  It means that a person has a mind or body that works differently than the majority of minds and bodies in his society.  So, in this world, autism is a disability mostly by way of the fact that approximately 98% of people are not autistic.  But, if the “only disability is a bad attitude,” then why should a boss provide accommodations for a blind employee?  Just think more positively, Pete, and you’ll be able to do your work!  Why should a school have IEP plans?  A hip-hip-hooray or two is all that’s needed for any student to succeed!  And, to paraphrase the awesome disability advocate Stella Young, when a wheelchair user approaches a staircase, a big smile is totally going to turn it into a ramp.  Right?  

No.  Disability is a cultural construct, but that doesn’t make it less real.  Accommodations are absolutelytotallyandcompletely necessary.

How about the meme with a person with prostheses running and the statement that “your excuse is invalid.”  It reminds me of 10th grade gym class, when the day came, as it came every year, that we had to run a timed mile.  I had gym first period in the morning.  I’ve had type I diabetes since age 3 (and now approximately a zillion other illnesses), and that morning, my insulin pump site had a kink in it.  My blood sugar was 590-something, which is critically high.  A normal blood sugar is 70-100, though type I diabetics are well-acquainted with numbers far outside that range.  Above 350, I run IV fluids from home, and above 1000 is “incompatible with life.”  I was 970ish when I was diagnosed.

So, anyway, my gym teacher told me that if I didn’t run my mile that day, that I would get an automatic fail.  I ran it during my lunch period… which meant no lunch.  And I hadn’t had breakfast because of the super-high blood sugar, and I was still very high.  But I was ranked first in my class of 550 students… I wasn’t going to lose my rank because of a damn one-mile run.  So I ran it.

And, halfway through, I collapsed on the track.  The gym teacher didn’t even stop the clock and didn’t come over to check on me.  I finished. the. freaking. test.

Though the horrible quip about my excuse being invalid wasn’t on my mind at the time, isn’t that exactly the kind of behavior it’s supporting?  It’s saying to ignore any and all signs that maybe you should stop doing something, that maybe it’s time to take another direction, that it’s okay to say that something isn’t safe or otherwise okay in a given moment.

It’s also saying that disability is never an okay reason to say that I can’t do something.  It’s saying that accommodations are not necessary, that people should just try harder and do the thing.  If a person with a mobility disability cannot walk, it’s blaming him for it.  If an autistic person cannot speak, it becomes his fault for not working hard enough.  

Finally, it’s sending the able-bodied person the message that, dude, at last you’re not this effed-up.  If this seriously broken person can do the thing, then certainly you can do the thing.  It’s making you feel better about yourself and your circumstances by feeling pity for someone else… not okay.

I still interface with the public with respect to autism advocacy, but I’ve learned that there are things I can do and say that encourage people to be inspired by things other than my disability status.  I don’t ever want people to hear about my health battles or autism and think to themselves, my goodness, if that girl who is that broken can write and speak and get her Master’s and so forth, and I’m not nearly that messed up, then surely I can do it. 

What I do want is for people to meet me and think to themselves, holy mackerel, that girl is on fire!  She’s enthusiastic, kind to others, and passionate.  I want them to admire my faith, peace, hope, and joy and get the message that those things are theirs for the taking, too… and not pity my circumstances to feel better about themselves.  To encourage the reception of the right message and not the wrong one, I balance the time I spend talking about disability and the time I spend talking about other things, like faith and mentoring and passion.  I broaden my message to reach people on a basic level of humanity instead as often as I can, and I try to make the connection that autistic people are first people without any qualifiers.  Yes, autism is part of my identity, but my humanity comes even before that.  I have to both explain that autism makes my experience very different… and share the ways that it really doesn’t make me so different, after all.  It’s a balance, and not an easy one.  Following a presentation, I connect with people not just about autism but about almost anything… sometimes, I pull autism back into it, since that’s the reason most people meet me, but it’s not the absolute focus of every conversational exchange.

People still tell me they’re inspired, but it’s a very different message.  They follow the comment with things like “….you’re so passionate about what you do,” or “…your faith is incredible” or “…it’s awesome that you’ve followed your dreams.”  The last one, I still qualify… I don’t follow my dreams at all.  If I did, believe me, that I wouldn’t be here and I wouldn’t even be alive.  I follow God’s call on my life, which is utterly different than following my own dreams.  

But, that’s a qualification I’m happy to make.  I’m happy that the adjustments in the way I present and how I engage with people sends the message that the inspiration really has little to do with my disability… and everything to do with what I know to be God’s redeeming work in me.  I often say that if you’re inspired by anything I say or have done, then your inspiration is not me at all but God.  He’s the one who pulled me out of the muck and mire, out of the darkness, and into His marvelous light… and this amazing journey.

The View from the Mountain

I know that my recent post on Freshly Pressed (which, by the way, was downright awesome and I thank WordPress!) has drawn a lot of new readers who may not know my story.  Lesson one in Lydia writing is that everything has a back story.

The background is that I’ve been in a nursing home for fifteen months.  I have complex medical issues due to what we can best guess is mitochondrial disease.  Essentially, my mitochondria (which turn food to energy) suck at their job, so my body suffers from extreme lack of energy.  Some of the results of that are a clear connection, such as the fact that I can sleep for 15 hours and still be exhausted.  Others may take a moment of thinking… like, for example, my organ systems suffer the same lack of energy, so those that use the most (GI, endocrine, eyes, autonomic nervous system) don’t work very well.  I have a feeding tube, an ileostomy (like a colostomy except I don’t have a colon so it’s my ileum, or small intestine, connected to my abdominal wall), an insulin pump due to almost life-long type I diabetes, and an IV port.  My kitchen has almost no food, but every cabinet and drawer plus eight more drawers standing in the corner contain medical supplies.  Autism + having to manage THAT?  That’s why I was in a facility–I wasn’t able to do it.  We’re confident that I can at this point, so, I moved into my own studio on Monday… 

Now, I spent the last year or so writing a (non-autism-related) book about my testimony and my journey, and while I won’t go into detail here (yes, even I know, sometimes, when to skip certain details for the sake of brevity!), I will say that one of my big struggles as I concluded that book was unifying my story.  In my mind, I had an autism story, and I had a medical story, and I had a recovery-from-mental-illness story, and I had a faith story… but, I didn’t know how to unify those.  Who am I–Lydia–not from an angle, but straight on, as a single story?  As a Christian, my belief and my answer to that question is that the way Christ sees me… that is the one, true version of myself… that is THE story.  Autism and writing and recovery… those are all things that God either created me to be or allowed in my life and used them for good… but they cannot be THE story.  So, you come for an autism blog… but autism is not the end-all of who I am, and my life has plots in which autism does not play a part, so sometimes, you will get tastes of other things.  I come here, at times, to process, and sometimes, the processing involves other aspects of life, because I cannot just leave them out.

The last fifteen months have taught me lessons I never expected but yet desperately needed to learn.  One of the most life-changing things I know, and when I say know, I mean that I know it in the sense that I’ve lived it and not that I believe it’s true… I know (that I know that I KNOW!) that things like joy, and hope, and peace, and purpose, and freedom are not circumstantial.  At least, they cannot be if we want them to be abiding.  In order to bring those things wherever you go, into the valleys of life, they have to come from inside of you and not outside circumstance.  If you depend on external situations to be your joy, or your hope or your freedom, then you will lose them over and over again.  But if they, if He, is in you, then you will carry the one and only Source wherever you go.

When I’m on one of life’s mountaintops as I am right now, it’s easy to feel like I’ve reached a pinnacle. In some senses, some parts of my journey, have reached a beautiful closing.  I mean, I cannot contain the sheer joy at being in my own space into little black words on a white background.  Music is the best way to capture my emotion, and I play it constantly and sing and worship with every new song that pops on (which I couldn’t do in the facility much of the time because of my elderly roommate).  But, even from this miraculous view from the mountain, in which I look around at where I’ve been and feel the exhilaration of the closing of those chapters and the possibility at what lies ahead, assured that God has control over every new thing…  I have to remember that becoming like Christ is a lifelong process, and that, if I let Him, God can take me ever deeper in knowing Him. It’s a scary thing to pray to go deeper when you’re up so high, because going deeper involves things like discomfort and struggle. Still, So, even from the mountaintop, my prayer comes from one of my favorite worship songs…

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

(Hillsong United, “Oceans”)