The Moving Game
special guest post by Kate Goldfield
The struggles make me stronger, and the changes make me wise, and happiness has it’s own way of taking it’s sweet time….. No, life ain’t always beautiful, tears will fall sometimes, but it’s a beautiful ride…” – Gary Allan, Life Ain’t Always Beautiful
I remember listening to this song when it came out, and being so soothed by its message, and so able to relate to the angst in the singer’s voice. It gave me such hope. There is a reason to my struggles, I thought. They make me stronger. Happiness will come. Years later, I’m still waiting – but I’m still trying to take the message of the song to heart. It is such a poignant song.
Nowhere has this been more evident in my life than in the struggles of the past two years. I started experiencing symptoms of multiple chemical sensitivity in the winter of 2006. I had to eventually leave college because of them. My MCS became acute and quite serious in the fall of 2007, after having been exposed to several toxic apartments in a row and immediately after one particularly bad one. My life was never the same again.
I lost the ability to have a normal life. The reasons, symptoms and experiences most who are reading this will be familiar with so I won’t elaborate too much; doing so to me feels like diving into a pity party. I’m more interested in considering the ways I have been able to cope rather than the ways it destroyed my life – when I can.
In short, I became no longer able to tolerate simple things such as walking into a store to buy groceries, or the simply joy of walking into a store to browse. I started having enormous, scary reactions no matter where I went – Starbucks, Borders, boutique shops downtown, the grocery store. So I stopped going into them. The reactions were too intense, too debilitating, and too frightening to consider otherwise.
I stopped being able to use public transit or take taxis, which, since I don’t drive, were primary means of getting around for me – when I lived in cities that had them. I stopped being able to be around any kind of fragrance, wood smoke, personal care products, laundry products, any of the staples of everyday life. Living with my family became a lot more difficult as I couldn’t tolerate their products and they didn’t particularly want to change them. So, at age 23 or so, with very little resources, very little money, far more dependence on others than I would have liked, and oh yeah, Asperger’s Syndrome, I started the moving game.
Asperger’s makes it difficult for me to filter and tolerate sensory information. It makes it hard for me to effectively communicate with others and causes lots of misunderstandings. It gives me very high anxiety levels that can be hard to tolerate – both for other people and myself! Because of AS, I tend to like to have a routine and to be able to plan everything out ahead of time. I like predictability. Anyone with MCS knows that these things are just not possible a large degree of the time when you live with an illness that can make you so sick without warning.
Despite these dubious cards, I knew I had to do something to get myself into a better living situation, because I couldn’t tolerate the chemicals around me, and those living with me couldn’t tolerate these new issues that I suddenly had.
So a series of cities and experiences ensued. In the last two years, I have lived in Maine (my home state), Portsmouth, New Hampshire; Burlington, Vermont; Missoula, Montana; Liberty, New York; Siletz, Oregon; and now, where I currently am, Bend, Oregon. All for varying amounts of time in different kinds of situations. All trying to find a chemically safe place to live. All in a desperate bid for survival and safety.
Despite having to move so much and be uprooted so much, I have come to realize that moving so much has taught me things that I never would have learned otherwise; has helped me to grow immeasurably; has pushed me to stretch my boundaries and improve myself in ways that I never would have otherwise considered. In some ways, the challenges that have been imposed on me because of my MCS have been good for me in pushing me to learn things I never would have otherwise been exposed to; and helping me get out, a little bit, of the rigid mindset that can sometimes come with AS.
But mostly, I learned about the world, and little tips on how to cope with it. My time in New Hampshire, with an MCS woman who I had met on an online MCS email group, exposed me to the wonders of a health food store and the very necessary items that can be found in one; it was there that I found the MCS safe olive oil shampoo that I still use (and have found nowhere else). It was there that I found the support and caring of a fellow MCS woman who patiently listened to me rant and ramble and try to figure out all the new problems that MCS had caused for me. This support was invaluable.
My month in Burlington, Vermont, short as it was, also taught me a few things. I found the man who I shall call Edward through a Craigslist ad I posted asking for fragrance and chemical free housing. In Burlington I noticed that I didn’t seem to have chemical reactions in shops and buildings that had concrete floors, something that has given me hope of someday being able to find safe permanent living quarters for myself, and the promise of occasional accessibility of some shops. Burlington taught me what I didn’t want in a city – crowded college towns with people every square inch weren’t for me. It taught me a little about what it was like to live with a roommate. Even if it didn’t ultimately end well, the experience, again, was invaluable. You can’t learn these lessons in a book, you have to go out and experience them.
In Missoula, staying with my mom for several months, I learned that hey, yes, there could be a climate that I could tolerate and actually thrive in. The lack of humidity in the Missoula summer made it so that, for the first time in my life, I could go out and enjoy summer weather. It was a big difference from the stiffling, soupy summers of the East coast and my childhood. I was also exposed to several new foods that I continue to enjoy at the large natural food store there.
Liberty, New York, a very small town in the southern part of the Catskills, was the most challenging experience. I found this MCS-safe apartment on a different MCS email list. I moved from Montana to New York sight unseen. And what a sight it was! While the apartment was more or less okay, the town was tiny and the polar opposite of every town I had ever lived in before. My landlords and I eventually had serious problems and I had to leave to protect my safety. But, oh, the coping skills I learned here! I wanted this situation to work so badly that I was able to put up with large number of irritants and factors that I never in a million years thought I would be able to tolerate before. This made me a much stronger person, a much calmer person, and a much more capable person. It also showed me how much I could get through and survive if I needed to – it showed me my inner strength.
After time back at my dad’s house in Maine, I found an ad on an MCS email group for a living situation with an MCS woman in Bend, Oregon. Through that, I was given the opportunity to live with a different woman for six weeks beforehand in Siletz, Oregon, near the coastal town of Newport. In Newport, I learned what emotional safety felt like; I learned what it felt like to feel truly understood and appreciated for the first time in my life. I learned how feeling emotionally fulfilled and supported could really help you overcome physical or health challenges to achieve a feeling of safety. I also saw some of the most beautiful scenery and outdoor environments that I have ever seen, walking for hours among the many beaches and oceanfront property of Newport; all of this beautiful nature calmed my soul and enriched my spirit.
Three weeks ago, I made the trek across the Cascades to Bend, Oregon, my final destination. Bend is in many ways the polar opposite of Newport and has taken some getting used to. I find the air hard to breathe for reasons I have not yet figured out, and the intensity of the sun in this high desert climate is something else I am unused to and have difficulty tolerating. Despite these problems, though, there are always positives. I have found a woman determined to find a way to help me with my many issues, and I have gratitude that a perfect stranger would want to go so far out of their way to try to help me – and I have hope that it will eventually succeed in making progress with these issues. I have learned how to cook here; I experimented in Newport, but with access to a Whole Foods and a kitchen, and the presence of mind to be able to think clearly (some of the time!), I have learned to cook fish, potatoes, rice, and other things that I never would have been able to before. Until I came here, I cooked a week’s worth of chicken breasts and ate them every single day to the exclusion of almost anything else; not the healthiest of choices. Here, I have been able to move in healthier directions.
My point is that moving to new situations seems to loosen something in my brain and make me more adaptable and willing to make changes. I tend to get lost in thought patterns of how I can’t do something or can’t change something that I need to change for my health. I tend to be prone to feelings of hopelessness and depression, feeling vulnerable in the face of such illness and so little idea of how to combat it. I often have a hard time thinking of ways to broaden my horizons and experience new things. But moving so many times and soaking up the wisdom of what so many different people and experiences have taught me, broadens my concept of what is possible and what is not considerably. It exposes me to things I never would have been exposed to before, and shows me different ways I can do things.
I may be slow to catch on but I get the hang of things eventually. While I still have immeasurable problems and issues to deal with, both from my Asperger’s and my MCS, I know one thing for sure: No one wants to have to move so much. No one wants to have that sense of stability be so elusive, to have to worry about where they are going to live next. But if I hadn’t moved so much, my worldview would be tiny, cramped, restricted; I would know so few things abou the world – and about myself. I would know only the misery that comes of not having had the opportunity to explore and experience one’s world and one’s self. Having chemical sensitivities limits what we are able to do in the world so much. The last thing we need is a mindset that is limited, too.
I hadn’t experienced much of the world prior to becoming disabled at 22, but thanks in part to my struggles with chemical sensitivities, I have now. And I am a better person because of it. No matter what happens to me in the future, I can cling to these experiences and memories of self-sufficiency and exploration, and know that I tried my very best to live my life in the best possible way I could.
Kate Goldfield is a writer currently living in Bend, Oregon, where she tries to find new and creative ways to deal with her Asperger’s Syndrome and chemical sensitivity. She loves listening to large amounts of country music, cooking new things and salivating over anything food related, speaking about autism related issues, and terrorizing farmers’ markets everywhere.
top photo: Yachats, Oregon © 2009 Kate Goldfield
This article was originally published on the now defunct website MCSsafehomes.com on July 17, 2009 and transferred to the re|shelter website on February 22, 2011 under the original publication date.