The Long Journey Home

I wrote this as a possible editorial for the local paper. The idea is use two elements: a) human interest story and b) message to be grateful for what you have, to turn it into an editorial; and the goal is to get it into the paper so that the byline with the info on how to buy my book, which describes the events in my editorial, gets in there too. Whether it will work or not, I don't know, but I can certainly try!

The Long Journey Home

What does home mean to you? For two years, I had no real definition of or sense of home. I moved anywhere from every few weeks to every few months. I couldn't stay in any one place long enough to plan a dinner out, make friends, or have any sense of roots or belonging.

Why did I move so much? I have a condition known as multiple chemical sensitivity, or MCS. People who have MCS have extreme physical reactions to fragrances and chemicals in minute amounts. For example, perfumes, lotions, cleaning products, new carpet or construction, pesticides and air fresheners, among many other things, can all be a big problem. Even the residue from these things can enough to cause mental and physical deterioration.

At 24, after living with my parents in Standish for as long as I could, I couldn't find any apartments or roomshares that worked for me in Maine. So I set off on a journey across the country to find something that would. I used Craigslist or other MCS websites to find other people with chemical sensitivities who had houses that would be compatible with my needs. In this way, I ended up living in eight cities over two years: Burlington, Vermont; Liberty, New York; Missoua, Montana; Newport, Bend and Eugene in Oregon; Ballston Spa, New York; and finally back to Maine where I currently am, in the greater Portland area.

There was another complication. I have Asperger's Syndrome, a high functioning form of autism. This sometimes makes it difficult for me to communicate effectively with others, understand social rules and norms, and tolerate a lot of sensory stimuli (such as noise, certain kinds of weather, smells, fabric textures and so on). The two years I spent traveling from place to place were a challenge, but they taught me a lot about the world and my place in it. I learned the power of my own strength and the value of human connection.

But I longed for Maine. I yearned for the certain "je ne sais quoi" that is my home state. The fresh air, the rocky coast, the forgiving forests. The newspaper that had been narrowed in width by 1.25" years before, causing quite a ruckus; Monument Square, where the open space and familiar shops caused my heart to soar like a bird above the clouds; the narrow cobblestone streets of the Old Port, the radio stations I had been listening to since I was a teenager, and people who knew what real seafood was. I longed for street and city names that made sense to me, the festivals of my youth, for people who knew me. I longed for a city and an area that I had a history with.

The Oregon coast was magnificent, and I learned a lot from the woman who I lived with there. Staying in an ecovillage in Eugene was an experience I will never forget. Vermont and New York were interesting in their own ways, but they weren't home. I felt out of place, like my heart was living outside my body. But because I knew that any given living situation was the best I could do at the time, I stayed.

And then, six months ago, I was finally able to find a living situation that worked for me here in Maine. Finally, the air that had seemed so oppressive in upstate New York felt crisp and clear; the places and people that surrounded me were at once familiar again; and much of the anxiety and angst I had been carrying around with me melted away. By chance, I ended up only a few miles from the house I had grown up in. It felt like coming full circle. I am grateful every day that I live in Maine. Within half an hour in any direction, I can visit a dozen stunningly beautiful beaches; hike in another dozen wondrous hiking spots; buy organic food, wander the streets of the Old Port, and find a community with values that I share.

I took for granted living in Maine before I was forced to leave.
I took for granted the things I was able to do before my chemical sensitivities disabled me in many ways. Now, I try very hard not to take anything for granted, and despite my disabilities, I enjoy life more than I did before my problems started. My hope is that everyone reading this will take a minute to think of what they are grateful for in their lives, and make a point to appreciate it every day.

Kate Goldfield is a freelance writer living in the greater Portland area. She has just published a book about her travels across the country, "Common Scents: Adventures in Autism and Chemical Sensitivity," which is available at http://kategoldfield.webs.com . You can email Kate at KGoldfie@gmail.com .

Asperger's book finished!

Hello all,

I am excited to report that I have finally finished the memoir I have been working on for the last six months, Common Scents: Adventures in Autism and Chemical Sensitivity. It has been a long journey from inception ("Hey! I could write a book!") and thinking of the perfect title ("Well, I have to write it now, because that title would be perfect for a book") to the months of struggling to write it and the following months of figuring out how to best publish it. My sixth grade teacher told me frequently, all those years ago, "Kate, I'm going to see your name in print some day," and I always laughed at him. Yeah, right. When I got older, people told me I would write a book one day. I wanted to, but I never felt I had enough material. Until six months ago, when I finally figured I had a story to tell, and was in a good enough place to write it.

"Common Scents: Adventures with Autism and Chemical Sensitivity" is the story of a young woman's search for physical and emotional safety as she journeys through the mountains of the Cascades, small coastal towns on the Oregon coast, and out-of the-way towns in upstate New York. Along the way, she experiences things she would never have dreamed possible had she stayed in her Maine hometown, and begins to learn the power of human connection."

From the book's website (http://kategoldfield.webs.com)

"It's a tale of adventure. A story of growth. A look into the human psyche, you might say.

Growing up is hard for everyone. It's even harder for those with autism or Asperger's Syndrome (AS). Things that everyone else takes for granted - social interactions, being able to navigate a busy grocery store, making friends - are significant challenges for people with AS. It's harder still when you have to deal with chemical sensitivity as well. Suddenly, no place is safe anymore, because people's perfumes, lotions, and shampoos, as well as cleaning products and fragrances in stores, make you so sick that the normal activities of life become almost impossible.

So what happens when a 22 year old with both autism and chemical sensitivity leaves college and tries to make her way in the world?

The book starts in the spring of the author's senior year of college, where she is forced to leave school because of her growing chemical sensitivities. With much regret, she moves home and spends several months living with her parents.

Desiring independence, she tries to live in several apartments of her own in downtown Portland, Maine. Unfortunately, something in one of the apartments makes her sensitivity to chemicals so much worse that she is not able to tolerate any apartments, nor her parents' house.

So her journey for a chemical free living environment starts.
Primarily using the website Craigslist to find roommates who already live a chemical and fragrance free lifestyle to live with, she travels to cities across the country to pursue this goal. She starts in Burlington, Vermont, and goes to Missoula, Montana; Liberty, New York; Newport, Oregon; Bend, Oregon; Eugene, Oregon; Ballston Spa, New York, and finally back to her hometown of Falmouth, Maine.

In each of these cities, her eyes are opened to the way the rest of the world lives. Each city is a separate chapter. In each city, she recreates the experiences that changed the way she sees the world. In each city, the author talks about the people she meets, and details her struggles and successes with interacting with the people around her.

If you want to learn more, please go to the book's website at http://kategoldfield.webs.com
If you're interested in purchasing, there is a purchase link at the end of the site.
PDFs are also available and Paypal payments can be accommodated by emailing me at KGoldfie@gmail.com .

If you've enjoyed my blog, I know you'll enjoy my book!

Thanks for reading.

Kate

Boothbay Harbor: The Maine Black Bear thanks you too.

A Day at Crescent Beach

Kate at Crescent Beach in Cape Elizabeth, Maine

I wrote this about a week ago and then forgot to post it, so here it is.

A Day at Crescent Beach

Nate picked me up at 2:30, and we had the good fortune of both being ready at the same time for once. We made a quick stop on the way to Crescent Beach in Cape Elizabeth at the Gay Pride festival. I hadn't been to it in years, so I was very curious how it would be different.

The first thing we saw was the giant, beautiful Deering Oaks fountain. I can't remember the last time I saw that thing on - then again it's been years since I was in Portland for the summer. It was so beautiful! I immediately took out my camera and began snapping pictures of everything around me. The wind brew the spray from the fountain on me so I actually got a little wet, which was wonderfully refreshing.


As I had suspected it might be, the gay pride festival was a photography gold mine. Not as much as a big city one would be, and hardly anyone dressed outrageously (surprisingly) but still.
I took a picture of some drag queens sitting at a picnic table, a brief one of the stage where the music was coming from (very brief because that area was very smelly/fragrance and cigarettes), and wandered into the area for organizations and vendors.

The last time I went, several years ago, the Pride festival had only one food vendor - an ice cream truck, which I must say , pissed me off to no end (I had been looking forward to fair food), and maybe one vendor selling pride crafts, and then half a dozen organizations.

This time, they had branched out (Deering Oaks is a large park), and there was probably half a dozen food vendors, maybe a dozen crafts vendors, and around a dozen organizations. It was very fun to wander from table to table in a White Rabbit-esque daze and see what each new table had! I have always LOVED that about festivals; the surprise and joy of looking at all the different tables to see what they had.



I made a spider out of multicolored pipe cleaners someone was handing out. Much fun. I used to love pipe cleaners as a kid.

After about 30 minutes, we'd all had it, and so we continued on our way to the beach, a perfect ancedote to a hot day.

Crescent Beach

We had chosen Crescent Beach for our outing based on the reputation of Cape Elizabeth for having amazing coastal attractions and also for wanting to try somewhere we hadn't been before.

When we went through the gate, I could not believe what I was hearing when we were told it'd be $18 for us to get in - $4.50 per person! I had thought there might be a $2 or $3 fee, but nearly $5 seemed to be pushing it.

As we walked to the beach, we said, "This better be worth it."

It was.

My first sight of the ocean and the roaring waves sent a jolt of excitement through me. It was so amazingly beautiful. The breeze and cooler coastal temperatures made the temperature just perfect; the sun was shining; and best of all, there was a fierce breeze which felt just wonderful. All around us, kids were playing in the sand and water. It had been years since I was on a proper beach in the summer - I'd been away the last two summers, and we tend to stay at my dad's in the summer because we have the lake right there.



I again grabbed my camera and started taking pictures of everything in sight. More photographic heaven. The waves, the kids making sand castles, the baby wading into the tide pool - all seen through the frame of a camera and captured as beautiful memories forever. The five of us walked on the edge of the shore, where the sand was packed down (most of us agreed loosely packed sand was hard to walk on), towards the end of the coastline. We watched a seagull make off with several food items - I ran to try to catch him on camera, but I think I scared him away. In due time, we made it to a rocky part of the coast. More heaven! There is nothing more that I love in life, I am pretty sure, than climbing on rocks. Something about it makes me feel so good. It's probably a sensory/cognitive thing on some level. Maybe it's because it requires hand eye coordination - a physical work out with the mental challenge of watching where you're going and planning every next step!



At any rate, this was a beautiful set of rocks. The colors on some of them were amazing. We ambled forward and the landscape kept getting more and more amazing the longer we walked. Lots more pictures ensued. We sat at a clearing at one point to rest and talk. At one point, I gasped in disbelief and joy when we rounded a corner and I saw what lay before us on the other side - the rocks went on for as long as your line of sight, and with the ocean below and sky above, it was the closest I have yet seen to the Oregon beaches I loved so much.



I scrambled happily with R2 (there are three Rs lol) back the way we had come, and eventually we met up with the others, who had gone ahead. At some point we fell behind again, and had an enjoyable and peaceful walk back down the coastline. Until, of couse, we got a bit too close to an incoming wave. I jumped out of the way, but my right sneaker and foot still got soaked. I was a little unhappy about this, but I figured it was a sign we should stop walking so much and just enjoy what was around us. Which we did, until the rest of them came back for us. That, and take pictures of some nearby frisbee players.

"We thought you gave up," Nate said when they reached us. "Yeah, well, I fought the ocean and the ocean won," I said with a smile. We then decided to find some of the walking trails rumored to be behind the ocean. In the midst of these trails, we found a playground and soon all four of us were swinging to our hearts' content. (What a great picture THAT would have made.) I am very sorry to say my camera chose that point to die on me, and so I missed out on a LOT of good swinging pictures. But there's always next time (and Nate managed to get 2 before it died).

Having not been on a swing for years, I very much enjoyed this. They were solid straight wooden swings instead of those awful plastic ones. I hate the plastic ones because they're just so damn uncomfortable. They make your body mold to them. I couldn't figure out why the wooden ones were so comfortable until I realized that. Wooden ones are relatively rare.

When we'd had enough swinging and playing on the jungle gym, it was time to go to Whole Foods for dinner. Their outside seating was open so we sat at a table outside -much quieter!- and all enjoyed our food.

At home, it would have been swelteringly hot, but we found ourselves a good time on one of the many beaches of Maine. I cannot tell you how happy and grateful I am to live in southern Maine and how proud I am of my state!

Asperger's, Family Gatherings and Adulthood

I have a friend who says he never had much of a family growing up, and he thinks it's better that way. He doesn't want to deal with all the drama that having a lot of family sometimes entails, and thinks he's lucky for not having much of a family. I told him immediately that I thought he was wrong, and that I felt sorry for him. That even when you occasionally hate various family members for one reason or another, even when you want more space, in the end, you're always glad they're there, and that you have them to fall back on. And maybe sometimes when you fight with them, you do it because you're so afraid of losing them.

I wanted to tell him that even when you butt against the boundaries and cry out at various kinds of restrictions family might put on you growing up or at other times in your life, you are glad to have those boundaries there, glad to have that part of your life that you can be a part of; family is a fold that you can always come back to. It is a place you can feel like you belong (for some, anyway), a place where you have your foundation from, a place where you can be with other people who share the exact same highly individual quirks and tastes that don't seem so individual when you're all together. A place where you can see where you came from - and be proud of it. Of course - not everyone has a family they feel comfortable with; not everyone has a family they get along with. I understand that. But what I'm saying is that I am lucky that I do.

As I write this, a very appropriate song has just come on the radio, that fits in perfectly with the theme of this blog. A Father's Love by Bucky Covington.

"He checked the air in my tires
The belts and all the spark plug wires
Said "When the hell's the last time
"You had this oil changed"
And as I pulled out the drive
He said "Be sure and call your mom sometime"
And I didn't hear it then
But I hear it now
He was saying "I love you"
(He was saying "I love you")
The only way he knew how "

Seemed appropriate. Anyway. Back to the point. I think the concept of family is something that gets much better with age, kind of like fine wine and cheese. For the exact same reason that when I was a kid, I never appreciated or liked the Passover seders we went to every year until just about when they were about to stop, I am appreciating the concept of family more now that I am older and (hopefully) more independent.

I spent the day today with many family members, most of whom which were visiting, at my dad's house today. We left at 9:30, a bit on the early side for me, so had the entire day together. I was a little bit zonked out when I got there, so watched TV for a bit until people started to wake up. (We have a household of mostly late sleepers.) When G, my dad's cousin's wife, walked in, I surprised myself by how easy and enjoyable it was to get into conversation with her. For a couple hours as people played rotating chairs and took different spots in the living room, I found myself talking to whoever was near and being able to take part in and enjoy the conversations. When I wasn't talking, I was taking pictures, which is something I enjoy more and more the more I do it. Trying to get that perfect shot is addictive. It's a form of self expression that appeals to me. It's a way to show other people what you are seeing, and since that's always been so hard for me, maybe that's why I like it so much.

Before I knew it was 1pm, and 2 hours had gone by since I had gotten there. At some point everyone else went outside to sit by a bonfire in the fire pit, but I stayed inside with my grandfather since I can't tolerate smoke. I showed him the pictures I had taken on the view screen of the camera, and we commented on them. I had the pleasure of giving him the 74% Dagoba chocolate bar I picked up for him after he said he liked dark chocolate. There are unfortunately few ways that I seem able to fill people's needs in other ways, something I often regret because who doesn't like to be useful?, but food is one definite way I can do that. I am extremely good at finding good food - especially sweet food - that fits people's tastes and temperaments. It was a perfect match in this case. Dagoba makes good chocolate! A world away from Hershey's and imitation chocolates, but that's a story for another day or blog.

Again, maybe it comes down to self expression and emotional connection - if one can connect using food, then why not do so? There are far more less orthodox ways to do so.
Bungee jumping, for example. I wouldn't recommend it as a bonding activity. You know what they say. "If at first you don't succeed, then bungee jumping is not for you." If you must, however, be sure not to answer this ad I saw on the Internet the other day. "For Sale: Parachute. Only used once, never opened, small stain." Always good for a laugh.

We watched an All in the Family episode, flipped around some more channels, and eventually settled on the show House. This may seem very ordinary to you, but the fact is that I haven't watched TV with family for at least five years. It was nice to be able to share what we were watching. I took pictures of my parents in a kayak, and sat around the table with my grandparents and S and G (dad's cousin and wife) talking - in a conversation I was actually able to be part of, which, when you have social difficulties like Asperger's, you never, ever take for granted. Each word of each sentence that you are able to join in on feels like gold.

At that point, around 7 or so, it was time for dinner. Since I hadn't eaten anything substantial since 9:30, I was surprised I wasn't hungrier, but I did have my crackers, roast beef and hummus to snack on throughout the day. I made sure to take lots of pictures of the table before eating. The other good thing about a camera is that if you are with other people and become bored of or left out from a conversation, you can amuse yourself by taking pictures instead of feeling lonely and left out, which is by far a more productive thing to do.

S liked my hummus and crackers, becoming one of the first people I have met to do so (hummus seems to turn off most people), and that was another connection: a connection over food, of the taste and feel and joy of food. I suppose a lot of things that other people experience I may have trouble understanding because I don't necessarily experience them, and therefore it can be hard to authentically relate to others. But food is the one thing I very much have feelings and experience with, as do others, so it is an equalizer in some ways.

Casual conversation is like gold to people who have trouble with it. It may seem so hum drum, redundant, meaningless to others to focus so much on words exchanged with no particular value other than that they were exchanged in a pleasant way, but they matter. The feeling of inclusion matters.

What memories will I have ten years from now? What will I want to remember, what will be important to me? I guarantee it won't be the amount of time I agonized over whether or not I could manage to get up early enough to leave at 9:30, whether the day would be structured enough for me to feel comfortable, if I'd have enough to do, if the music would be too loud, if I'd be able to participate in conversations or if I'd be left out, if people would be outside when I couldn't go outside, if everyone would be watching basketball instead of talking, or any of the other multitude of minutiae (albeit minutiae that was very important to me) that I worried about. What I will remember is all the conversations and connections I did have when I was finally able to overcome my fears enough to go. And that is precisely why I did it. Ten years later, I want to have and cherish memories of my family, especially of my grandparents, who are moving to California and getting a little closer to the last stage of their lives than I would like.

There was recently a post on an Asperger's discussion group that I am on that caught my interest. The writer wanted to know if the "glass window" feeling, or that of feeling like you're behind a glass window, everyone else is on the other side, and you can't connect to them, was normal for Asperger's. Of course, I wrote back to say that it was extremely common, and while he may not enjoy it, he was certainly not alone.

A lot of people with AS have the conversation skills to talk to others but have a hard time feeling a sense of connection, especially emotional connection, to others. It may be that they are putting so much energy and thought into how to carry on the conversation, and what is right to do and what is not, and what they're going to do next, that they simply do not have any brain space left over to "feel" whatever feelings are supposed to come with such communications.

(This is one reason I try to write about what happened to me after a day like this, because I am often too mentally busy "doing" when being social to actually "feel" as much as I should be feeling, and writing about it later allows me to feel the feelings belatedly. I am not saying I don't feel at all at the time, but there is often a delay. The feelings are often more related to pragmatics of the activity rather than emotion derived from it.) It may be that they don't emotionally connect with the topic of conversation, or that fear is getting in the way of connection. I am sure there are other reasons I have left off here because I am getting too tired to think anymore, but you get the gist. I don't believe I have ever spent 12 hours with people, interacting with them the whole time, and you better believe me when I say I need some serious decompression time when I get home - but I am thankful for once to be awake enough to write about it, which really helps me process, and which the last two weeks I haven't been able to do.

Especially here in Maine, in the wake of a local governor's race where the Democratic candidate is a woman, they talk about breaking the glass ceiling for women in politics. Far more important to me, though, is breaking the glass ceiling of Asperger's. And I do believe I made some headway today.