Wednesday, October 28, 2015

Between the Lines

Hours before the dawn ever considered breaking, my Handler and I arrived at the airport on what was barely a Saturday, our carry-on baggage in tow. I hadn't flown in a few years - hadn't moved through the cavernous, blinding terminal or walked the long, unstable plank to the plane's tiny hatch door - and so, as you might expect, I was particularly anxious. Because it was so early (or perhaps "because it was so late" depending on your Friday night going out tolerance), my senses were already particularly challenged. Half asleep and unsteady, I played Follow the Leader with my husband as he moved through the rotating airport doors. He moved his left foot, now you move your left foot. He walked to the right, now you walk to the right. Good girl. I dragged his small suitcase behind me like a toddler blanket.

And then I looked up. In front of me, more than eighty people long, was one of those long, snaking lines people sometimes call a "queue" leading up to the security checkpoint; a maze writhing with yawning children, chatting friends, and unkindly officers ushering passengers through shifting elastic barricades.

Truth: Sensory people don't like lines.

Oh, hello nightmare situation

And I hear what you're saying, dear reader, Oh, but Rachel, no one likes a line. And yes, barring some eccentric Linear Awaiting Expert, whose sole mission in life is to strategically assess the motion and positioning of lines by standing on as many of them as possible, most people don't like lines most of the time. I'll give that one to you. But if neurotypicals don't like lines; especially snake-y, queue-y ones; people with sensory issues can't stand them.

Imagine, if you will, that you are being punched in the face over and over and over by some random invisible assailant. You spend most days in this state, somewhat uncomfortable and somewhat irritated, and so you're logically used to the abuse of your unique neurology. But today, it's especially early. The lights are blindingly bright. The hallways echo. Shoes squeak menacingly against the slippery floors. You are not only uncomfortable, you hurt as each knuckle crashes into your poor assemblage of a nose and tender eyes. Now picture you're being punched as you're waiting in line. You're roped into a loopy, pre-set path, and society requires you to continue forward in order to get where you're going. The assault to your being will only lessen at the end of the line. You need to keep an eye on your luggage as you try to protect your aching ears. You need to escort your body forward even as your skin is bruising and your bones begin to ache. You need to discern the distance from yourself to your assailant, from your assailant to the next person in line so that you're not given sideways looks by strangers as you plow directly into them. You hear snippets of their conversation, even as you are clocked in the chin, and with each twist of the line, new snippets and new strangers are sent to march beside you, blocked only by a thin rope. The visual array of people in controlled-motion, moving in the pre-set space allotted, is overwhelming.

If you feel like getting out of the line, you can. This is America after all, and you're not legally required to be on this line or any line. You can step out of line and take a sensory break. You can hail a cab and go the hell home. You can run up and down the entire length of the airport vestibule clutching pinwheels and whistling dixie. But if you want to get to Point B, to the place you need to go, through the metal detector to your terminal to the plane with the seats that you booked to your destination, you must stand in this line. You must move through it, even as you plead with your sensory assailant and pray that no one notices the extent of your seemingly inexplicable discomfort, because there's nothing worse in a moment like this than starting the diatribe that begins, "My name is Rachel and I have a neurological condition called Sensory Processing Disorder." Like so many things in life, the only way out is through.

You know I made it through because you know we always make it through. My reward for surviving the queue was getting to be here for a few days:

Be still my heart

That's the thing about life with SPD. Short of having a shutdown on live train tracks or a meltdown midway through a skydive, you always come out alive. But the unseen battle deserves to be highlighted too. We owe it to ourselves to explain our struggles (and successes) with the seemingly inane so that we can better understand why we behave the way that we do, and people without SPD will only understand our inner-workings and our hidden challenges when we cast them into the spotlight.

Let's celebrate even the smallest things. This week, I survived the thrash and flail of two long, snaking lines. That surely deserves a gold star.

Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Monday, October 19, 2015

The Most Important Thing to Know About SPD (IMHO)

Sensory Awareness Month is still in full swing, and as you may remember, I'm sharing one fact about SPD every single day in October from my book, Making Sense: A Guide to Sensory Issues, which is available for preorder now (woo-oooo!)

One of the most important facts is the one I shared yesterday on my Coming to My Senses Facebook page, and something that I explain in further detail in my book. IMHO, it's perhaps the most important thing to know about SPD, because it speaks to the underpinnings of the disorder. What causes SPD? Why do people have sensory issues?

As part of the SPD Foundation's Scientific Working Group, a team of amazing researchers have found that in brains with SPD, the tracts of white matter, or the bits that connect the other areas of the brain, are actually less well-connected than in people without SPD. It makes sensory processing not only more difficult, but sometimes impossible.

You can read more about this groundbreaking study here and follow me on Facebook for other important things to know about SPD.

Wednesday, October 7, 2015

10 Sensory Quirks Only Someone With SPD Will Understand

Woo, my latest joint-project for Sensory Awareness Month is LIVE!

A team effort with my favorite sensory illustrator, Kelly of Eating Off Plastic. I am clearly biased, but I just love everything the two of us create together.

Thanks to the awesome Jennifer of The Sensory Spectrum and The Jenny Evolution for hostin' our postin'!

You can find 10 Sensory Quirks Only Someone With SPD Will Understand on Jennifer's page HERE.

Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Want to see more hilarious illustrations by Kelly Dillon of Eating Off Plastic? Pre-order Making Sense: A Guide to Sensory Issues today!

Saturday, October 3, 2015

Pride (In the Name of SPD)

Controversial Statement Warning:

I am proud to be an adult with Sensory Processing Disorder.

I Made Dr. Zoidberg Sad. Sorry Buddy.

This pride seems totally counterintuitive to the limited form of life I lead. It seems silly in the face of the therapies I've undertaken and the money I've spent to feel only sort-of-well. It appears to be misplaced pride when I'm in the thick of yet another sensory shutdown or another meltdown and the world around me is waiting for me to just get my sh*t together already.

How can I be proud of the very thing that so frequently holds me back? How can I be proud of the attributes that keep me feeling just shy of "normal" and at arm's length from the fully-engaged life enjoyed by so many others?

How can I be proud of my neurological differences when they impact every corner of my life?

My reasoning is simple:

I have SPD. I was diagnosed long after I developed anxiety issues. I spent years feeling hypersensitive and embarrassed by the very things I couldn't control and didn't understand. I interact with the world differently because of the way I'm wired. I cry more easily. I don't know how to relax. I am sometimes especially challenging and inflexible and emotional.

And yet, this is who I am. I am also supremely loyal and intuitive. I can tell you how you're feeling long before you've even opened your mouth to speak. I feel your pain and your triumphs so intensely, that I am the one you call when you are at your lowest point in life and your highest. I sit with you in the trenches of your misery and dance with you on the shores of your joy. My value in life stems directly from shepherding you through these times both unscathed and with some humility. I feel music somewhere deep within my bones. Every stride I take through this world is laced with poetry.

Even with these incredible traits, I still spent years sitting with the shame of some unknown attribute that made me feel lesser-than. I can't handle things, I'd say, burrowing even further under the covers. I was ashamed of who I was for the first three decades of my life. I spent most of this time having no clue that who I was was something to be celebrated.

I can't change the fact that I have SPD. I have always been and will always be wired differently than most. Feeling ashamed of this won't change who I am or how I live my life. For me, the opposite of shame is pride. Life's too short to be ashamed, especially for the things we cannot change, and so when we choose pride instead of shame, we take back control. The very second I decided to be proud of myself - of all of me, and not just the good bits - the entire universe opened up to greet me. I began my advocacy work in earnest. Hundreds of people flocked to read my thoughts about all of this stuff. Next spring, someone is publishing my book.

This is my life. I am not an acrobat with Cirque du Soleil. I am not a cowgirl. I don't have Lupus. This is my path, much as it is many of yours. You have a choice to make in your sensory life. You can choose shame and spend your time feeling defeated by the very thing that makes you you. I won't stop you. When you've made the decision to live within your perceived flaws, no one, not even this passionate advocate, can stop you. Your glass will always be half empty. But there's another choice you can make. Choose pride. Choose to celebrate your quirks and sit patiently with your own challenges, much as you'd sit beside a friend. Choose to highlight every tiny step forward, for these steps take immense bravery and drive and patience, and find kindness for every tiny step backward. You won't always be proud, not every single second. You are, after all, only human. But pride isn't a moment-to-moment thing. It is a thread that is woven through your sense-of-self and a filter by which you choose to view your world and your experiences . . . and although your world is complex, and it takes so much work to do what takes others mere seconds, you deserve to feel good too.

I am no longer ashamed to be who I am. Life is short, and I don't deserve to live in shame for how I was created. Guess what? Neither do you.

Happy Sensory Awareness Month. Keep being proud.

Shameless Self Promotion: Want to learn about SPD from a delayed-diagnosis sensory adult's perspective and hear more from yours truly? Pre-order Making Sense: A Guide to Sensory Issues today!

Thursday, October 1, 2015

Happy Sensory Awareness Month!

It's October once again, and the entire SPD community is celebrating sensory awareness! As part of these efforts, I'm posting a fact about SPD on my blog Facebook page every single day of the month. Each fact is taken from my upcoming guide book, Making Sense: A Guide to Sensory Issues (now available for pre-order on Amazon and Barnes & Noble). I won't post all of the facts here - not enough hours in the day for that much blogging, sadly - but I will try to share at least one a week through the month. To see the whole set of 31 facts, visit my blog fan page on Facebook (and like the page, of course!)

I've also worked with my favorite sensory sidekick and guidebook illustrator, Kelly Dillon of Eating Off Plastic, on a fun awareness project that will be featured by our friends over at The Sensory Spectrum/The Jenny Evolution sometime during the month. As soon as it's shared by them, I'll be sure to post it up here for all of you.

Here's to even more awareness,