Sunday, September 12, 2010

All about Attitude, Illness and Living Life

There is something that's been on my mind lately.

If you had to choose between mental health and physical health, which would you choose?

Let's put this another way.

This can be best illustrated by the story of the two twin boys who both got a pile of dung for their birthday. One boy was mad and said "It's just a pile of dung! This stinks!" The other boy jumped for joy and said "Oh boy, we're getting a pony!!"

Same circumstances. Two radically different attitudes.

It's a story I've come back to many times in my life.

Three years ago, I did not have MCS (chemical sensitivity). Or I was affected only very mildly. I could go into buildings. I could work - kind of. I could take the bus, go into Portland, have a limited social life. Very limited. I had the trappings of, or the beginnings of, a "normal life." Okay, it wasn't really normal because of Asperger's, but for the purpose of this discussion, we are ignoring that factor.

But despite all this ability, I was miserable! Well, most of the time. There was so much more in life I wanted. I yearned for friends and a social life, to be more a part of the world, of the community, to feel more fulfilled, all of those vague emotional needs that you can get lost in and drown in if you let yourself. I cried and cried. I wanted more, and I couldn't appreciate what I had. That's a very bad thing, and it will lead you to never being happy.

But then, something curious happened. Well, it happened in the fall of that year, anyway. I was thrown into full stage crisis mode when my chemical sensitivity increased to the point where I couldn't go into any buildings, I couldn't tolerate any apartments, and I had nowhere to live other than my parents', which just wasn't working. My life was thrown into turmoil and for the next 2.5 years, I would think about nothing other than finding a place to live that I could stand from an MCS point of view.

Now obviously, these were not pleasant years. Hellish, actually. But despite it all, man, did I learn a lot and see a lot. I lived in nine different cities across the country in 2.5 yrs. You cannot possibly go through this and not change your attitude about life in some way, your viewpoint on the world, your opinion on what matters and what doesn't. The way you see yourself, your place in life, etc.

And so when it's all said and done - three years later, having found a place where it seems like I can finally (knock on wood) settle down, where I've been for nine months, I lie in bed sometimes at night and daydream about the differences between me now and then.

And this is what I see.

I see myself sitting on the couch of the South Portland apartment three years ago, crying because everything felt so uncertain, because I didn't have enough friends, because I wanted my life to be different.

Then I see myself immersed in a journey where none of that seemed the least bit important anymore, where all I cared about, ALL I CARED ABOUT, was a room with a bed in it that didn't have any chemicals, where I could relax and have a life of some kind, and didn't have to be constantly on the run.

Finally, I see myself emerging from all of this and being thankful for the very smallest things in life. The lack of (mostly) conflict with the people I live with (knock on wood). A chemically safe (mostly) living environment. Being able to take a walk in fresh air (except for the summer). Being able to watch TV again after not being able to for 5 years. Being able to read a book again. Being in my home state. Having a stable schedule and routine. Eating. A sunny day. The ocean. You know, the little things. Nothing has changed in my lifestyle or number of friends, really - but my outlook and attitude on life, on what I have, what I want, and where I want to be in life, and what I want out of life, has drastically changed.

Illness took away so much, but it gave me so much in return. I have so much more confidence in myself. I have a perspective on the world I'd never have had before. I'm not a whiny emotionally dependent person anymore (most of the time). The irony is, that even though I can do far less physically than I used to do - in terms of going places - I am far more an independent person than I was when I could do my own grocery shopping.

Why? Because I am (more) emotionally independent. I have gained far more distress tolerance skills (although I still could use far more) and I don't have to rely on other people for my emotional health as much. I still need people - but I have healthier interactions with them. I'm not in meltdown and distress mode all the time. I can solve more problems on my own. I can handle far more things without blowing up. I can brush some things off.

I don't think I would have gotten there hadn't it been for all the experiences of self-reliance an different viewpoints I encountered in the last three years, moving around because of MCS.

So, physically worse off, mentally better off - which would you rather have?

With a good attitude, you can do anything and go anywhere - you just have to modify things a little to fit your needs and situation. With a good attitude, you can be happy despite negative circumstances (to an extent).

With a functional body but a bad attitude, you are pretty much stuck in place.

So maybe, in some ways, I am the lucky one one after all?


I have often wrestled in my mind with what caused my sudden onset of MCS and decreased ability to deal with life at the end of my senior year of college. The obvious theory is the rainbarrel theory of MCS:that a sensitive person's body accumulates toxins over time, and at some point, they reach a threshhold, in which your body can no longer handle them or detoxify them, and you become super sensitive to everything.

But there are other factors. College was a VERY, VERY intense time for me - all four years of it.
Every day, I felt anywhere from euphoric to near suicidal and back again, many times, in the same day. (Good social interactions = happy, questionable social interactions = depressed).
There was a lot of good about the college experience, but there was an awful lot of pressure too, socially, environmentally, and academically. Yet I kept pushing myself past it all because that's what I do. I think it's in my genes. I was over my head so many times but I kept pushing myself on because that's what we're taught to do.

Everyone experiences stress, everyone has hard times. Everyone gets stressed out over assignments. I thought it was normal - and it probably was. But I think I was pushing myself past the point of mental/emotional exhaustion, past the point where my body and mind could keep up, without realizing it. I managed to turn these emotions off somehow and just do what I needed to do. The ten page paper, the burning questions of why I was so different socially than everyone else, the loud music coming from the dorms, the burning jealousy of seeing others have a good time and not being able to join in - I felt these things more intensely than I have felt anything in my life, more intensely than I would have guessed it was possible to feel anything. And they took a toll on me.

But I didn't really notice, I mean, it was normal for me. All I'm saying is I kept going and going and going and going and going and going going and going and going..... for three and a half years...until I returned to college one semester from break, and found the oddest thing had happened. I couldn't go into the library or classrooms or what have you because they all smelled like Windex, or perfume, or lotions or etc. Everywhere I went my eyes burnt, my nose stung and I felt like I was going to pass out. I had no idea what was happening. It made no sense. None at all. So I tried to cope, to adapt, like I always did. Use the computers past midnight when no one would be there. Hang out in the basement of the library where nobody was. Run past the initial library entrance that smelled so bad. Avoid the whole lower level of Pearlstone entirely because there was something God-awful down there. Roam the campus for hours at a time, looking for just one room in the whole campus where I could sit for a few minutes without feeling sick.

I still thought I could pull it off. I kept going. I wasn't getting any work done, but I thought that would be temporary. I'd had bad times before. I'd do it at the last minute, like I'd always done. Except this time I couldn't. It wasn't until my stepmom suggested, on an emotional late night phone call, that it was okay to take a break, that it was okay to come home, that I actually realized I could (and I am thankful to her for that.) And I did. could almost say that it's like my body imploded on me.

I believe MCS is a physical illness with physical origins. But I also believe for people who are vulnerable or alreay heading in that direction anyway, it can be triggered by extreme stress. Extreme stress changes things in the body on a biochemical level. It weakens the immune system and other body systems. It throws things out of whack. Could it throw things out of whack enough that I developed the symptoms of MCS? Certainly, in my opinion. Some theorists posit that illness is an expression of other things going on in the body and mind. (And I am not talking about psychosomatic illnesses, I am talking about genuine illness.)

So I found myself wondering, a few weeks ago, a very poignant question. If we assume that due to my general neurological make-up and somewhat fragile nervous system, college was an ultimately overwhelming experience that caused me to develop MCS and severely limit and change my life - was it worth it? Did I bring this on myself?

But fortunately, I didn't have to think long before I had an answer. Yes, it was worth it. Yes, it was worth it 1000%, without a doubt .

Because without the experiences I had in college, I wouldn't be me. I wouldn't be anyone. I'd be a severely depressed person with very low self confidence and no prospects in life.

College helped me overcome the trauma of my youth; college gave me a self, a person to be. College, as cliche as it is, helped me find myself. Accept myself. Being accepted in the college community, after all the negative social experiences of my past, finally let me come out of my shell and be who I was. I stopped being tortured by feelings of persecution every time I so much as walked by someone my own age, I stopped being paranoid about what other people thought of me. I decided I was an okay person, and embraced myself and the world around me.

My social experiences in college, as difficult and roller coaster like as they were, gave me the self confidence and sense of identity I needed to survive in this world.

A paper diploma means little to me. Academics can be learned from a book and are useless except in your specific profession. What college does is teach you how to think and how to learn - if you go to a good one. I don't need a diploma for that.

So was it worth it? All of life is a trade, I guess. I got one thing I desperately needed, and lost another. But none of us are playing with a full deck of cards. I just happen to be missing a few that are a little more uncommon than most. But, again not to be cliche, we're all missing a few cards here and there. It's what you do with the ones you have that counts.

So. When a lot of people look at me, they might see someone more disabled than I would like. I don't go into stores. I don't work. I get overwhelmed very easily. But if they'd look closer, they'd see the other qualities that I have. I smile whenever I can. I try to make other people happy whenever I am able to. I attack my challenges with all that I have. I always keep trying, and I never give up. I work very hard to make the kind of life I want to live - even though it takes a long time! I have passion, I have love, I have hope, and I have life. I do what I can to help others. But most of all, I have an attitude that I will believe will take me where I want to go.

And that, I have decided, is the most important thing of all. And if I was as normally-abled as others are in certain areas, well, it's just possible I may never have developed this attitude. Who knows what would happen if you change the circumstances of your life?

What about you? What do you think is most important?

I would like to add a disclaimer that writing this does not mean that I won't be subjected to occasional bouts of depression, helplnessness, neediness, and all those other lovely things we all like so much to avoid. But I think have the tools to get out of them (in due time). And I am going to keep working until I get to the place I want to be.I sure hope so anyway.

(As long as, of course, I continue to have support from others to bolster me, as it can be a very lonely road indeed.)


  1. Only by losing so much can we learn to appreciate the little things. Which are the most valuable and were there all along huh Kate.

  2. I think you're absolutely right about extreme stress making you vulnerable to MCS - and, I'm sure, many other illnesses. But as you so aptly said, attitude is most important.

  3. I love this entry and the connections you make between emotional independence, stress, the college expereince and the 2.5 years you traveled across the US. Its very poignant and you are right, its all about attitude. Very Cool!