The plight of a friend; the plight of us all

Before I start into the topic that I had planned to write about tonight (actually, I didn't plan it; it just kind of happened; but like I said before - that's where the best writing usually is), I will write about something that brought a smile to my face today. The little things are important to remember.

I saw a cat playing in the backyard of the house near to us. He was cute. He was very gingerly approaching the snow. He was running, but in a very cautious, gingerly way. It's funny what snow does to cats' sense of mobility.... (and to the rest of us, too.)

Okay, yeah, that's as exciting as my day got; move on, nothing to see here, lol.

No, actually another good thing that happened is that I talked to my friend E on the phone for about an hour and it was the best phone conversation I have had in a while. I feel very badly for her, though! She was one of my only friends in high school, a very good friend, and we lost touch for a while after high school. When I reconnected with her, I found out that she, too, had MCS. It was a somewhat surprising thing to learn and I didn't realize until several months later just how bad she had it because she downplayed it a lot, or so I thought.

Turns out that she has it as bad as me; she is sleeping in her car right now because she can't go in her parents' house. Wow. I had a lot of problems, and still do, and have had to move a lot, but am thankful I was never reduced to having to do sleep in a car. Granted, I had no car to sleep in, but that is besides the point. I did actually try to sleep in a car once (my parents'); it was after an awful and traumatic incident I'd rather not think about, but the point is, it was bad enough I tried to sleep in the car. And ultimately decided I'd probably get more sleep in the toxic atmosphere I was trying to avoid then in the car, so didn't, but almost did.

So, I can vouch from that experience that it would not be a pleasant thing to do, and I know that it unfortunately is a common experience for a lot of people with MCS.

She thought it was mold but isn't sure now; she's been having problems with the house for a while. She's very valiantly trying to finish her college degree at USM; she is the model of strength and perservarance; I admire her greatly. She is determined to get her degree. I personally think she should stop before it kills her and move someplace safe if at all possible; but she wants to stick it out if she can. She's having so many health problems in the meantime, though. She's sleeping in her car at night and going to classes during the day; writing her papers in the school library. That's dedication. I just wish there was help for her, that someone could give her a place to stay that she could tolerate. I already tried that route and can testify there isn't anywhere in southern Maine to stay that is safe, nor anyone who will let you stay in their homes, at least not in the MCS group there. But I hope she finds something. I tried to come up with some leads for her, but not sure if any will work; and some are in other states or too far to commute to school from. I told her of the shops I could tolerate in Portland so she has a chance of having somewhere to go when she is in town.

She wants to buy a safe trailer to live in, which would be portable. I think that's a good idea and hope she is able. Someone was advertising an MCS safe porcelain trailer in Maine in April; with any luck that will still be available.

Her parents didn't believe her, she said, until about three days ago; apparently being willing to sleep in a car to get away from a toxin finally convinced them that she was serious and not making it up.

It's so sad. E was like me, highly driven and obsessive about schoolwork to the point of almost insanity (we both were). She got all A's in everything. All the time. (Whereas I got A's most of the time, but not to the degree of perfection that she did.)

She was named one of the top graduating seniors in the country for French, the only person named at all from Maine. That is something I didn't know until last night when I googled her, but I was impressed. And ... sorrowful, too, that MCS could waste all of this talent, all of this insight and intelligence and just make such a good person have to suffer so much. That it could deny us all so much opportunity, that it could make our lives so narrow. That you could work so hard for something for so many years and just have it taken away. That neither of us got the chance to follow our dreams, to succeed in any measurable way, despite being at the top of our classes while we were still healthy.

It reduces you to a pile of shame, humiliation, incompetence, and fear; you go from thinking of yourself as a somewhat competent person who at least has a chance to be going places, a chance at some kind of normal life, to someone who begs for understanding, begs for help, begs for people to be fragrance-free. There is a lot of begging involved. And hoping. And holding your breath hoping you'll survive the next onslaught. Your life is reduced to running from chemicals and just hoping you can run for long enough to get to a place where you can relax, where you can feel safe. Family and friends fall on the wayside if they're scented or don't understand you; you miss them but can't tolerate how sick they make you feel if they're scented in any way. How can you enjoy anything, even family, when you feel like you're going to die? You can't.

The same with everything you once enjoyed, no matter what it was, no matter how long you did it for or how important it was. If it involves chemicals, smells, anything you react to - you run.
You run to save your health and your sanity. You run not because you're "neurotic, psychotic or delusional," as many who do not understand MCS are so fond of claiming, but because you know X is making you sick, and you know you need to get away from X. It is that simple. It is almost a primal survival reaction - no thinking involved; just getting away from it. Pleasure is irrelevant; survival is what you are thinking about.

Sometimes you run so fast that it takes a year or so for it to catch up to you just how much you have lost, and how fast. Because you're so busy running and surviving that you don't have time to think about it (which may actually be a good thing), you don't have time to grieve for it, you don't have the energy to experience the emotions, you're just thinking, "Oh, God, how can I feel better, what's next, where can I go, what do I DO now?"

My friend E grieves that she cannot hang out with her friends or go to parties anymore. She is not by any means a party animal, but she likes to socialize and be with people. I grieve that I can't participate in normal community life anymore. I grieve that I cannot go into stores, cannot even make a simple grocery shopping trip; have to window shop as I walk down the Main Street of any town; but after a while, you learn to accept it, you learn to work around it, you learn to focus on other things, because you have to, you have to make a world in your mind that you feel like you can tolerate in order to survive. So you learn how to work around things and to be grateful for what you have, but you never stop yearning for what once was, or thinking, on occasion, how fast it can be taken away. And being scared, oh so scared always, about how much more you can lose, and maybe will lose, before this dreadful disease is done its dirty work.

My friend E grieves that she wasn't able to see her brother when he visited recently. Her brother used to live with them and she enjoyed his company very much and was so dissapointed when he moved to NYC; when he visited recently, she couldn't visit with him since she couldn't go in the house. A friend of hers who he was visiting wouldn't let her come over to see him there. I grieve for her. I, too, have had to make difficult decisions to protect my health and sanity; when my brother visited when I was living with my mother in Montana, I wasn't able to go out to dinner with them because I couldn't go in either of their cars. (They were willing to eat outside, which as I later found out probably wouldn't have worked either.) I couldn't go to Thanksgiving at my grandparents' or participate in any family get togethers when I was living at my dad's house. Visiting any family members out of state, some which I haven't seen in years, is out of the question. You try not to think about it much, but it is lonely and isolating when you do.

You learn to be grateful for a drive through at the pharmacy, any place that will deliver (not many), health food stores (most of which for whatever reason seem more or less safe), and oh yeah, concrete floors. Definitely concrete floors.

I don't have any answers for E or for myself about how to cope, other than what I have managed to come up with in the last 2 years. Focus on what you can do, and do it well, and with gusto.

I have learned how to transfer prescriptions between pharmacies all over the country due to my frequent moves; learned how to call smaller stores and ask if they can bring out one or two items for me so I don't have to go in, always embarassing but necessary; learned which stores will be more likely to be okay for me (concrete or old, unfinished wood floors) and which stores won't (just about anything else, especially large chain stores). In Missoula I was lucky enough to be able to spend hours outside every day and learned for the first time in my life to take pleasure in the outdoors and to find joy simly in the simple act of basking in the sun. (And oh, what sun it was!)

I have learned how to be an advocate for myself, and I have learned how to help others.
I try to use my knowledge about MCS to help others when I can. I tried to help my MCS friend in NH find a place to live by going through all my MCS contacts in New England and the rest of the country to find her a safe place to live. I try to tell my friend E what worked for me and what didn't; of course, it is different for everyone. I try to give advice and support on MCS email lists where I am able to; I still have a lot to learn, of course. I try to educate the public in small ways.
I have learned there is an unscented and nontoxic version of just about anything if you look hard enough and have the means to acquire it with.

And, despite the fact that I hate moving so much and would love more than anything to have a sense of stability and a sense of home, to stay in one place long enough to feel attached to it, I have to admit I have learned things, important and interesting things, from every place I have lived in; this information has enriched my world and my worldview and has made me into a more well rounded person than I would have likely been otherwise.

It has been almost two years exactly since I started moving. I look back on it and sometimes can't imagine how I have survived. Especially with the holidays here and not much to fill up my time, and another January approaching (since January of 07 was the first time I moved), it really makes a person think. I am constantly thinking "Where was I this time last year? What was I doing?" The answer is always a different city. That is a question most people don't have to stop and think about. Sometimes I just feel so exhausted thinking about it; other times I am proud of my ability to survive and constantly think of new solutions and ways of solving problems; other times I just want to know when it will all end.

Two years seems like something of a milestone. Two years seems unbelievable to me. One year was bad enough, but two years...well, that's a mark of a fighter, I guess.

Not that the whole two years were bad. It didn't start to go bad until April of 07, and didn't become nearly intolerable until October of 07; but still, it is two years of moving.

What have I learned from all of this?

In January of 07, I moved from my dad's house to his and my stepmom's friend D's apt in South Portland. That was the only time of my life when I had everything; everything a "normal," typical person could ever want and hope for. Being my first living solo experience, though, and not yet really sick, I had no way of knowing how good I had it, and didn't appreciate it. Looking back, I appreciate it, though. I was living on my own; I was independent; I could go into Portland whenever I wanted; I even had a part time job. I make damn sure now to appreciate whatever good things I have in any situation because I never want to say that I regret not appreciating something while I had it again.

In April, D decided to move to Oregon, and I had to move out, therefore starting my long and lovely (just kidding) journey of toxic apts and an all out search to find someplace to live that didn't rob me of all of my cognitive and physical functioning. I can't say I learned a whole lot from these months (three different apts from May to October, each one making me sicker than the last, and array of family member stays in between), but at least I got to experience living in Portland, and did enjoy that quite a bit, at least the times when I wasn't too sick to, of course. I got to hang out with my friend Rick, a bus driver on the #5 bus to the mall every evening; that was a routine that brought me great comfort and a feeling of stability; it was so great to be welcomed so warmly upon seeing someone every night. To feel welcome somewhere, and with someone, is one of life's great small pleasures; and for some it can be very hard to find indeed.

So where was I January last year? At my dad's and miserable, trying with no luck to find a place to live, not being able to tolerate walking into any apartment we found, hitting dead ends at every turn.

What did I learn from Vermont? I moved to Vermont in March. While it was not what most would call a successful experience in the end, I would not call it an unsuccessful one either; it merely did not work, more from the perspective of my roommate than my own, although it was no picnic to me either.

In Vermont, I learned that I do not react to concrete floors. That is a valuable piece of information I would not have learned any other way most likely; as concrete floors are very uncommon in most parts of the country. Not Burlington, though. Four places - the (great) health food store, the pancake house, a flower shop, and an art building on the UVM campus - four very different places - all had concrete floors, and I did not react to a single one of them. They were the only four places in the entire town I could go. And Burlington is a HUGE town to only be able to go into four places. Watching people go in and out of the mall in the middle of Church Street, I sometimes found myself so jealous, so envious of their complete freedom, to come and go as they pleased without even having to think about; wondered what it would be like, to walk into a mall, just like that; then remembered how much I hated malls even pre-MCS and felt a little better, but not that much.

In Vermont, I gained valuable experience about what it was like to live alone post-MCS; my previous living experiences, I had not had MCS so bad, I had still been able to go into stores; so this was a bit of a wake up call. I also learned what it was like to live with a roommate, even a quiet, conscientious, mostly fragrance free one, and the potential pitfalls of doing such a thing.

I learned that there are some college towns you just do NOT want to live in, and that too many college students can be a very, very bad thing, and that road rage is not limited to just people who drive cars. :)

I had the best crepes and maple creame puffs of my life. I discovered that fierce winds every single day in March are very unpleasant. I learned to love railroad tracks.

Yes, it is true that most of the time I was overwhelmed and unhappy, but what I am saying, is Il learned a lot about how the world, and my world, works in Vermont.

Oh, and I almost forgot. I learned that it was possible for a bus system to be almost entirely fragrance free and comfortable. I'd almost forgotten that. Still don't know why their buses were OK and every other city's aren't. But that is the nature of this illness - not knowing. It's the not knowing that will drive you crazy, and the doubting, and the not knowing and doubting of everyone else in your life that is hard to manage.

In New Hampshire, I rediscovered the joy of exploring a new (quaint, small, Portland like) city; even if I couldn't go into most of the shops, I could go into some, and that was enough. Oh, those tiny cute little chocolate chip cookies from the bakery that melted in your mouth (rather than made you want to spit them out due to the taste as the ones do here, lol, poor bakery, they mean well, they seem like nice people, but I am not a fan of most of their stuff), and that great, relaxing chai tea at the coffee shop there.

In New Hampshire, I discovered at their local health food store the olive oil shampoo that I still use today, a year later; it is the only truly nonscented shampoo I have ever found and am so grateful to be able to get it and know of it. I still order it from that store when I need it.

In Montana, I discovered what it was like, as I said, to enjoy being outside for first time in my life; there is no humidity there, and I do very poorly in humidity, so I was in heaven, weather-wise. Six months of 80-90 degrees, bright sunshine every day and no humidity. I spent hours walking around by the river or just sitting on the picnic bench outside the bakery almost every day of the summer. Previously I would not go out at almost at all during the summer due to the humidity, and only for limited times during the winter due to the cold. I never considered myself an outside person before this. Not that I liked it when it got up to 90 or 100; but I liked it better than any temperature and humid on the East coast and liked 80 just fine.

Getting used to East coast weather again will definitely take some getting used to.

In Montana, also, I enjoyed hanging out at the giant natural food store, Good Food, for hours most days and the friendly relationships I developed with most of the employees; their smoothies; bulk items; and other such treats. But the one thing I can take with me from Montana and continue to use everywhere - speaking in a practical sense - is the discovery of a vitamin drink called Viva, which is only sold in CO, MT, and one other Western state. The first vitamin drink that actually makes me feel better. If I hadn't been in Montana, again, I wouldn't know it existed.

So, now starts the newest chapter of my life. Liberty, NY. Yes, it stands out bluntly and obviously in direct contrast to every other place I have lived in my life. Yes, I have been privileged and lucky to live in nothing but hippie, yuppie urban areas or suburbs of them my entire life. So, if nothing else, living in Liberty will give me an appreciation of the social stratosphere, makeup and culture of every other place I have lived, and give me an idea of how "the other half" lives; but I hope that, eventually, it will give me more than that.

I realize that there are probably a lot more towns like Liberty in the country than there are the hip New England towns I have lived in, but, it doesn't mean I have to like it, lol.

No, but in all honesty. I want to make Liberty work. I want to make this apartment work. I want to make my life work. I want to make living in a safe place work. And if I have to live in a middle of nowhere backwaters town to do it (again, no offense to people who live here), then I will do it. With as much humor and good cheer as I can muster.

But. It ain't gonna be easy. In fact, I am finding it quite difficult. Tuesday will be my one month anniversary of coming here. For the first month I have tried to stay very positive. Tried to laugh about everything. Tried to just be grateful that I had a safe place to live. Didn't let myself think about what I didn't have. Created a routine; stuck to it.

It is, however, very hard to maintain that optimism and good cheer; the extreme isolation of living with almost no human contact other than a computer and a phone gets wearisome; the lack of stimulation other than daily walks and a computer gets old; problems become overwhelming and daunting after a while; you feel like if you just had a little more human contac, a little more stimulation, someone who you felt like you could go to with problems or at least brainstorm, that cared about your well being, physically in the town, that you'd feel a whole lot better. It feels like so close yet so far. (J and A are good about helping to resolve any immediate problems, but are too busy to be of any help for anything it is not dire and immediate). You want one person who you can spend time with who enjoys your presence and doesn't think of you as an intrusion of their time.

Problems can become very overwhelming when not addressed. All I know is I have to find a way to make this work. I have to find a way to not be overwhelmed (or, in some cases, underwhelmed). I have to make the best of it. How, I am not exactly sure, and can use any help I can get; but somehow, I know I have to do it and make it work.

Because for the first time in I don't know how long (okay, yes I do, 19 months), I am not actively looking for a place to live. Thoughts about where I will live do not dominate my every waking moment. When I see people posting about safe housing on MCS lists, or try to help my friend E, or read things I wrote before I moved, I can at least rest secure in the knowledge that there is one thing I don't have to feel desperate about anymore, one thing that I have accomplished that seemed completely and utterly impossible before: I found a place to live.

For someone with MCS, that's major.