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.