Little Pebble

I was talking to my friend Vanessa the other day about my recent trip to see my father. I remarked that it was strange to discover that I am now the baby of the family, in my father’s eyes, at least. “Are you the youngest?” she asked, surprised. I was actually the middle of five kids, but—thanks to my developmental disability, Asperger Syndrome—I seem to have shifted into the position of youngest child. It seems that my inability to function socially, to form relationships or function successfully in the Neurotypical world, have left me far behind my siblings. I live in a timeless place, avoiding the stresses and strains of life in the twenty-first century, unable to process or deal with the negativity of the world outside my mind.

It’s strange, but it really does seem as if my emotional development stopped around the age of fourteen. I am not immature, mind you; I simply find myself untouched by the passing of the years. I have been abysmally naïve at times, in dealings with other people, unable to understand what their real intentions towards me have been. I am unable to intuit other people’s intentions, or read the hidden truths behind what they say and how they act. This has made it nearly impossible for me to function socially, and has allowed many people to take advantage of my naïveté and trust. As a result, I am unable to trust myself, and my reactions. I hold fast to a saying seen on a poster in the office of Agent Mulder in the old X-Files television series: Trust No One.

The people I encounter must—unfortunately—prove themselves trustworthy before I am able to accept the friendship which they try to offer. Even after months of acquaintance, I find that I hold myself aloof, containing my desire to allow others into my life. Luckily, I have been able to make a few good friends even with this hesitation, and I value them highly.

Do other people with developmental disabilities face the problems which I do with letting people get close to them? How do they deal with loneliness and isolation? With betrayal of trust, and the abuse of outsiders? How do they manage to work and live with people who could turn on them at any moment, who make themselves out to be trustworthy and then betray the trust freely given? It is extremely painful to face situations where everything goes wrong, again and again, and I never seem to get any better at making judgments about who to trust.

Perhaps it is best to after all to remain apart from the world which betrays and destroys trust. Perhaps it is best to remain alone, save for the few proven friends who stand by me no matter what. Perhaps there is strength to be found within, after one has been rejected by the “normal” people of the world. And perhaps it is more valuable to live a small, remote life, with devotion to one’s true self, finding satisfaction in the talents one can develop in the quiet spaces where one rests alone and undamaged.

This world is too big for some of us, too crowded, too unpredictable, too cruel. For us, being the baby of the family is not a bad thing. Living a small life can be valuable, when a larger life is unsuitable. It has often been said that there are no small parts, just small actors. My part may be small, but it is an important one, nonetheless. I will vow to be the best I can be at what I am able to accomplish, even if that is only to make people think about how they treat those around them.

What role do you fill in this world?

I just returned from a two-day trip to Sanibel Island, Florida. I drove down from my father’s home in northern Florida (a four-hour drive) and stayed overnight at the Periwinkle Campground, where I could sleep in my car safely. I couldn’t face the thought of staying in a motel – strange places freak me out and I wouldn’t have been able to sleep a wink! It was not as comfortable as sleeping in a bed, but the benefits far outweighed the difficulties.

Traveling with Asperger’s is very difficult for me. I am pretty much terrified of going new places and meeting strangers. But by researching the trip beforehand, planning carefully, and having my father’s reassuring voice on the other end of the phone, I was able to handle it. After being diagnosed several years ago, I learned how to recognize my shortcomings and deal with potential meltdown situations before they happened. Now, when I feel overwhelmed after an hour or two in an unfamiliar situation, I can stop and pull out my book, reading until I get back to “normal.” Or I can pull off the road and take a nap when stress-sleepiness overtakes me, although that is perilous in strange environs, and a busy parking lot in an upscale neighborhood is usually safest (I hope!). I can’t imagine going all day without a stress-reliever like this; I seem to need one every couple of hours. So I have to plan my driving time and activities very carefully, to allow for the inevitable breaks.

I am very thankful that I decided to be open and up-front about my disability, since it has allowed me to interact with certain strangers on a topic with which I am well-versed, as well as hopefully spreading information about A.S. so that others become more accepting and understanding of what I – and millions of others – are dealing with. In a gift shop on Sanibel I struck up a conversation with a young woman who turned out to have two friends who have autism-spectrum children, and I was able to tell her how to help them in small ways. As I said to her, people with autism spectrum disorders speak a foreign language, and the neurotypical people around them need to speak that language in order to interact successfully with them. Those of us with autism and Asperger Syndrome live in the world in a different way than other people, but are no less deserving of respect and understanding, even with all of our quirks and foibles.

A trip such as this is pretty near perfect for me. Walking on the beach picking up shells relieves me of the need to talk to strangers, as everyone stays to themselves for the most part, intent on the sand and shells and waves. Taking photos also puts a very useful wall betwenn me and the world, as I hold my camera to my eye and concentrate on setting up shots – and people understand that they need to stay out of the way of the veiwfinder and quickly duck away when I focus my camera on the sea or a beautiful tree draped in Spanish moss. Touring the wildlife sanctuary everyone is intent on watching for a glimpse of a blue heron or ibis, and communicate mainly with their group or the tour guide. And although the spaces in a campground are rather open and public, people there pretend not to see each other in order to preserve the illusion of privacy.

So Sanibel Island was the perfect place to venture out in the world, for me at least. It was a small place, felt very safe and comfortable, and offered no surprises or disruptions. I picked up lots of small shells, took beautiful pictures of the sunrise over the Gulf, and saw some gorgeous scenery and lovely houses. I really had a great time, and succeeded – by myself – in exploring a new place. Preparation was the key, and recognizing my limitations; with proper preparation and support, I think that there are many people with Asperger Syndrome and other developmental disabilities who could benefit from a journey such as this. It’s a wonderful world out there, even if we have to approach it in a different way than most people.

Copyright: Hillora Lang

On the way to class one day this semester I met up with my friend Erin at the bus stop. Erin is an artist, a vibrant, passionate person with a delightfully unique way of looking at the world. I complimented her on the shoes she was wearing that morning, and she showed me her spotted socks, declaring that they were an expression of her polka dot rebellion. That evening, for a poetry class assignment, I wrote Polka Dot Rebellion in Erin’s honor, and promised to post it online for her. Enjoy the poem, and Erin!

POLKA DOT REBELLION

Erin has declared
her allegiance to purple
argyle socks and
her partiality for
polka dot shoes.
She’s ready for a new game.

Splashing her words
about at random intervals,
with a swipe of her brush
she illuminates any
dark corners with her vision
for the world.

Erin dances in moonlight
on the dented hood
of a junked Cadillac,
rusty pink paint gouged
by carmine high heels
and purple strobe lights.

Strewing jellybeans
and copper pennies
she eagerly shares
the riches of her spirit,
laughing her defiance
through a megaphone.

Erin sends plastic monkeys
through the mail
to philanthropic friends,
asks us to take pictures
of them in places
she hasn’t yet been.

Striped oar in blue water
beneath a crescent moon,
she winds her way
along the shore
following a map
only she has seen.

Erin has loved, and
loved again, loves him still
while waiting for this
world to turn
rightside up again,
and outside in.

Recording her wishes
on the lucent petals
of tissue-paper flowers,
she hands them out
at the county fair
for children to dream on.

Erin fills unsuspecting
canvases with
striped sea-turtles,
giant fruit, clock hands
and froggy umbrellas
floating upside down.

Saturating the world
with sunbeam yellow
and cobalt blue, Erin
paints our lives as if
we are skydiving through
fruit-flavored clouds.

Today Erin declares the opening salvo
in the Polka Dot Rebellion:
            Take no prisoners!
            Drink the wine!
            Sing no song
before its’ time!
And always wear purple socks
on Thursdays!

 Copyright © Hillora Lang

Living with Asperger Syndrome sometimes feels like living a thousand years ago. Long ago – and even in some parts of the world today – people never traveled farther than a few miles from their homes throughout their lives. It was a big, scary, dangerous world out there, and travel was not safe or convenient. When you had to face the prospects of never reaching your destination, of spending lots of time and money to get from one place to another, and when everyone you knew was close by, there was little motivation to leave the familiar behind and risk your life and livelihood by traveling. Well, that is what it is like for someone with an autism spectrum disorder when faced with leaving the familiar behind and venturing out into this big, wild world.

I have always envied those who travel without a second thought. My sisters are some of those who have been all over the United States and the world, thinking nothing of packing their bags and jumping on a plane or into a car and taking off for parts unknown. The thought of doing that terrifies me, quite frankly. Not knowing where exactly I am going, or who I will encounter there, or what it will be like, is simply too much to handle. I have enough difficulty with my local environs, and seldom stray outside of very definite paths or familiar places. I wish that I could be like my sisters, but – hey, we all need to take baby steps sometimes, right?

That said, I am currently on the second vacation of my life, visiting my father in Florida. I drove here by myself, in my own car, surrounded by familiar and comforting belongings. I plan to return to the local manatee sanctuary (alone this time, since Daddy took me there last year and I am familiar with it now), and visit the Rainbow Springs national park. But my HUGE step outside of the norm is taking a day trip by myself to visit Sanibel Island to pick up seashells on the beach and take pictures at the wildlife refuge.

This plan is fraught with danger for me. I have done copious research about the island and what is there; I have printed out maps and directions and locations of the things I want to see. I thought that I would camp out in my car overnight, and come back the following day, but the campground on the island is closed right now. I considered staying in a motel overnight, but of course that is another unfamiliar setting which I am afraid to face alone. So I will most likely come back that evening, and sleep in a familiar bed at my father and stepmother’s home.

I know that “normal” people think nothing of going new places and doing new things, but with my developmental disability I have to face some rather extreme limitations. Controlling my environment is essential, so that I don’t meltdown under the pressure of the unfamiliar and unexpected. But, like I said, it takes baby steps to learn how to walk, and even though I am rather advanced in age to be this far behind the norm, I am trying my damndest to learn how to be a part of the world, a little at a time. I hope to be able to report a successful, pleasureable journey sometime soon, and share my observations with you. And if all goes well, I may be able to go somewhere new and different someday soon. Wish me luck!

In 1990, following brain surgery to remove a benign tumor, I relocated from Upstate New York to North Carolina. I was unable to maintain my home-based business due to my health, so began working in the only other arena open to me without a college education, that of retail sales. The pay was barely enough to survive on, and I couldn’t afford to take even one day off from work or risk falling behind financially and losing my home. I was certainly never able to afford a vacation, and so have been working without a break for over twenty years. In the same year my father and step-mother retired, moving from New York to Florida. Daddy’s health deteriorated; he had always had heart problems, including quadruple-bypass surgery, and has required additional surgeries over the years; additional health issues including emphysema, skin cancer, and other conditions had left him unable to travel. So it had been twenty years since I had seen my father and stepmother.

My mother had moved to North Carolina with me, and my sister followed several years later, living about thirty miles ago with her boyfriend and younger son. It turned out that the boyfriend was mentally unbalanced, and his manipulative, overbearing, controlling manner served to drive a wedge between my sister and me. He was pure poison to be around, and I couldn’t allow that in my life, so ceased to try to communicate with my sister. I was there for her if she needed me, but she kept her distance (to keep the peace with her boyfriend?) and it ended up being five years since I had spoken to her, despite her living so near.

Now that I am a full-time college student, I have periodic breaks between semesters and finally was able to schedule pet-care for my animals as well as volunteers to fill in for me at the cat sanctuary where I am live-in caretaker. I have always had difficulty going new places alone, but careful planning finally allowed me to rent a car and drive to Florida to visit my father and step-mother in early December. It was a wonderful, relaxing reunion, very low-key and restful, and we had lots of time to reminisce, visit, and catch up on all that happened in our lives over the past twenty years. It was as if we had never been separated, although we had all aged somewhat. I am so thankful that I was able to make this journey, not only geographically but developmentally, conquering my fears of travelling, unfamiliar situations, and passing time to become reunited with these very essential family members.

When I returned home my mother told me that my sister, separated from the evil boyfriend for over a year and now living in a much more positive situation, had invited her and me for Christmas Brunch. Another welcome reunion, although I was more reserved in my anticipation for the outcome of this one. I was uncertain what her attitude towards me would be, and mine towards her; I didn’t want to be cool or unfriendly, but the fact that she had completely cut off contact with me had hurt, and I was uncertain of our ability to reconnect. Well, we had brunch, and a nice visit, and chatted rather easily. I certainly didn’t feel as comfortable with her as I had in the past, and regretted that Evil Boyfriend had destroyed our close bond, but I believe that with time we will reach a new level of connection and understanding, although we might never be as close as we once were. Still, it’s better than estrangement.

 I have always believed that the Universe had its own timeline for the events of my life, but I am glad that my time of reunion with these very important and special people has come at last, and not too late. My father could have passed on from any of the many health crises which he has experienced; my stepmother may have disappeared from my life forever; my sister likewise could have vanished into a memory of sibling bonds, never to be seen again. I am so truly blessed to have been given this gift at this time. The Universe has been so good to me!

If there is someone in your life who drifted away from you, someone important to you who stopped calling or writing, someone whom you have lost to anger or argument or misunderstanding, make an effort to reconnect with them. You cannot know how much time you have left in this life, and you shouldn’t miss a single minute of. Find them, reach out to them, let them know you still care. Don’t delay – do it today!

Copyright © 2010 Hillora Lang

My French friend Christine recently asked me to help her start her blog. I was happy to offer whatever help I could, but was unsettled by the reasons she gave for wanting to do this now. She said that she wanted to speak out against those in politics and the media who thrive on attacking their opponents, spreading lies and innuendo, attacking them personally, and doing everything in their power to undermine those who are intelligent, reasonable, and fair in their treatment of other people. I, too, despise those small-minded  people who attack others, but I pointed out to Christine that meeting them head-on would reduce her to their level, and set her up for retaliatory attacks, which is not a position which she would want to place herself in.

We are living in a very challenging and difficult time, which has been foretold by numerous cultures and traditions throughout the world. According to Nichiren Buddhists this time is known as the Latter Day of the Law, when the people are profoundly deluded and disputes and quarrels are rampant. In the Hindu tradition, this period is known as the Kali Yuga, the age of conflict during which moral decay and spiritual dissolution reign. And everyone must have heard by this time of the “end of the world as we know it” supposed to be predicted by the ancient Mayan calendar. While I do not believe that the world is about to end, I do see the truth in the predictions that the world is about to undergo a profound change, hopefully for the better.

I reminded Christine of these influences at work in the world as a whole and in American society in particular, and pointed out that we cannot hope to change the viewpoint of those who spew venom and pollute the minds and souls of ordinary people. The best that we can hope for is that by speaking reasonably and intelligently, and by sharing the teachings of compassion, wisdom, and kindness which we have been blessed to receive through our spiritual paths, that we can touch the hearts and minds of those ordinary people. By sharing these good and productive teachings, we reasonable people can change the current evil age to one of light, and emerge into the new age ready to face whatever challenges come our way.

I hope that you who are reading these words will take them to heart, and share the message of compassion and wisdom with everyone you encounter. If we resist the urge to strike back at those wrong-minded and wrong-hearted people who scream so loudly, and instead use our voices to speak reasonably and intelligently, maybe together we can overwhelm the negative influences who are at work tearing down our world, and build a solid foundation for everyone to stand upon as we reach forward to the next age. I hope that you will walk forward alongside me, and Christine, and Jim, Catherine, Desi, John, Arley, Robin and all the rest of us. Blessings to you all!

Copyright © 2010 Hillora Lang

MEDICAL ATTENTION (an Asperger Syndrome lament)

It grew up broken, disarticulated
this life I inhabit. Limbs crippled,
mute, blinded in one eye. This life
has been bandaged, bones set in
plaster, wrapped in gauze, rewrapped,
swathed with antibiotic ointment.

Many years it has taken to regain
mobility, to learn to walk, to
force muscles to grasp and hold
and carry. It’s not like
a starfish which can regrow
a limb at will, a worm

torn in half, regenerating its missing
piece. With each break each cut
scar tissue grows thicker, enwrapping
faltering heart, faltering hope,
faltering mind, faltering desire
to leave this hospice and walk free.

This life I inhabit is propped
up in a full-body cast, metal
braces on both legs, prostheses
replacing all the bits torn off
by vultures and friends, artificial
heart pumping replacement fluids.

But these doctors/believers in my right
to immortality/emergency medical personnel/
support staff/triage specialists keep on
working frantically, certain that I am
worth saving worth sustaining in spite
of the ones who keep fighting to pull

the plug…

Copyright © Hillora Lang

ON THE {AUTISM} SPECTRUM      

The world at large can be cruel,
heartless, for those of us whose hearts are

hidden behind masks. At the start
unable to touch those outside

ourselves, we stumble crumble
we falter, yet start again. Ever

hopeful that this one, this time,
we connect like slipping hand

into velvet glove. But no—it’s finger
into the light socket time again.

It’s reaching into a sinkful of
warm slippery bubbles, seeking

Joy, seeking Dawn, clean and
soft, then cut to the quick

by a bubble-hidden butcher knife.
It’s plucking a rose and being

pierced by an inch-long thorn
from which we cannot disentangle.

It’s plunging your hand into the
sea after a whelk shell and

being stung by the jellyfish.
Still we keep trying, keep

learning from each cut, prick, sting,
each friend who betrays, each boss

who unforgiving, unaccepting, pummels
our fragility, each lover who cannot

understand that we cannot understand
what he needs, what she wants,

expects, desires. We cannot know
these things about ourselves, let alone

know what those standing outside
our towers, our walls, our

prison fences, those standing
tall and strong and sure in the

streaming sun brilliant sky wide
world want from us. Aspie-clueless.

Still with naive hope belief nameless
desire formless expectation we reach

out between the iron bars of developmental
disability let our straining fingers

whisper across the soft cheeks
of the neurotypical the normal

the certain-sure, hoping to know
what they know, hoping to touch the sky.

Copyright © Hillora Lang

My dear friend Ann, who was raised in a Moravian family in western North Carolina, has devoted her life not only to helping the disadvantaged to get the education which will help them to succeed, but also to many other fine and worthy causes. One of the most important has been the elimination of domestic violence; in fact she serves as the president of the local domestic violence shelter. We often discuss her work there, and over the past year or so she has told me that the situation has gotten much worse for women and children living in violent situations. The bad economic conditions in the United States and the world have certainly contributed to this state of affairs. When people are stressed by losing their jobs and homes, and struggling just to feed themselves, it seems that those who have loved poorly take out their frustrations on those around them.

 When I say that they have “loved poorly,” I must look back on my own family. There was no physical abuse, thank goodness, but the emotional tensions resulting from not understanding how to love with wholehearted compassion and acceptance were truly difficult for everyone in the family to deal with. My parents divorced when I was in my teens, thank goodness, for their sakes as well as for me and my siblings. My father went on to forge a good marriage with a very special woman, and they have been married for over thirty years. My mother chose not to remarry, and lives happily and peacefully by herself (albeit with three pets). While my older brother has been married to the same woman for nearly as long as my father has been remarried, my sisters were not so lucky. The three of them have passed through numerous marriages and relationships, all of which ended unhappily. And I, myself, have never married and do not care to, as I have devoted my life to caring for endangered animals instead of another human being. We all have to make our own choices, and forge our own paths, for good or ill.

But back to the topic: Loving Poorly. So many people never learned how to love selflessly, concerned for the good of the partner and their offspring. So many of us love selfishly, looking for what a relationship will do for us, and fooling ourselves that we are altruistic and giving. To love in such a constrained and constricted manner is a denial of the wealth of love which the Universe desires us to experience.

Loving poorly results from not having a good example to follow when we are growing up. After all, if your parents and grandparents are unable to love each other, for the ultimate good of the other, then where will we learn to love well? If our parents cannot trust each other, or share their dreams with each other, or work together for the good of the family, where will we learn to build a supportive, strong family? Many of us get lucky and happen to find the perfect partner; unfortunately, however, far too many of us cannot leap the hurdle of a bad example and love well, for the good of everyone around us.

Loving poorly results also from fear—fear of being used, fear of not having what we desire, fear of losing what we have. We grasp our “love” so tightly that we strangle it, choke the life out of it. We grab anyone who comes near and profess our love for them, when we are merely seeking to build a wall behind which to hide from loneliness. We are too frightened to allow the other person to be happy, independent, strong. We are afraid that if they are allowed to see the light, they will run towards it and away from us. We do not truly love them; we are trying to protect ourselves.

It is not such a bad thing to be alone. It is very valuable to be able to love someone for their benefit, and not for our own. For when we love altruistically, we gain such joy and satisfaction when we see the other fulfilled and happy. Being alone enables us to explore who we really are, and who we are meant to be. Isn’t it better to be able to share your love with the whole world unreservedly, than to love one person wrongly, and cause them pain?

Don’t be afraid to love; don’t be afraid to grant freedom to your beloved. If the Universe intends for you to be with that person, then they will be with you. And if not, then no doubt there is someone better out there, or something better out there, which will make you truly strong and happy.

Copyright © 2010 Hillora Lang

*This post is dedicated to my friend Ann, and all of the people whom she helps to live better, safer, healthier lives.

Have you ever noticed that when things are going along pretty well, you’re getting everything done that you need to, and keeping your head above water, that suddenly a huge boulder seems to spring up in your path? I guess it must be a karma thing, just to keep the challenges coming, the learning and growing happening…

This summer I am taking four courses towards my Associate of Arts degree, and everything was going along so well—Until I was checking up on my grades on the distance learning board and discovered that my (quite good) mid-term exam grade in Physical Geology was not there. Major trauma! Immense stress! Without that grade my (rather high) GPA is trashed! The distance learning forum, Blackboard, has been having problems all summer, and appears to have “lost” my exam altogether. ARRGGHHH!!!

I’ve been sending frantic emails to my instructor, trying to resolve the situation, but he can find no record of my having taken the exam. The way he has the course set up, students cannot copy and save their work online for future reference, to study from, and, in this case, to prove a grade. If I get a perfect grade on all upcoming assignments and the final exam, I’ll still only finish with a grade of C. So much for all of the hard work I’ve put in, the sweat and tears, and mental anguish!

My only hope is that if I retake the course, my new grade (A) will replace this semester’s grade, and my GPA (3.9) will be saved.

So what do we learn from this situation? TRUST NO ONE! And nothing! While I couldn’t have saved a copy of the exam, I should have copied the page which gave me my grade, the date and time I took the exam, etc. At least then I would have had the proof I needed to file a grievance with the college, and rescue my semester’s hard work from the trash.

If you are in school, and taking online classes, please take my advice—cover your b___! Copy every assignment, work submitted, exams taken (if you can), and grades recorded. Never go on the assumption that life is fair and you’ll get what you deserve. Unless you’re able to look on the bright side and enjoy the lessons that mistakes like this will teach you (the hard way!), be ready to prove your case in the event that something goes wrong. Because somewhere along the line, no doubt something will go wrong, and you’d best be ready for it.

Good luck!

Update: I couldn’t face the thought of having that C on my record, and found out that the grade can only change if I got a D or F and then took the course again, so today I Withdrew/Passing (WP) from the course. Now I can take it again, already having done most of the work for it, and get the A which I need to keep my GPA up. I never thought that I would drop a course, but this seemed the most graceful and beneficial way to handle the situation. At least I won’t have to purchase the textbooks again!

Copyright © 2010 Hillora Lang

On Saturday, June 19th 2010 the annual Blueberry Festival was held in Burgaw, NC. I seized the opportunity to attend and take photographs for an upcoming assignment in Portrait photography in my summer semester Digital Photography class. Here are a few of the photos I took, out of a total of about 500. Enjoy!

Copyright ©2010 Hillora Lang