Monday, May 24, 2010

The Benefits of Disability

I was lying in bed one night thinking, as I do most nights. I was thinking about how illness/disability in some ways can actually benefit you. The reason I was thinking this was because I remembered what I was like that brief time in South Portland when I had all or most of the semblances of normal life, yet wasn't happy. All I could think of then was what I didn't have.

And then, after going through the last three years, I realize that most of my thinking is now finally devoted to being happy about what I do have - even the tiniest of things, because they are things I went so long without. And I realize that I would never have been appreciative for these things before my battles with MCS (chemical sensitivity). I kind of like being able to be appreciative of these things. I spent so long in battle, so long in crisis, that it is very easy now to be thankful for things like going out with a friend to the beach, reading (!! couldn't do that for a while), being able to watch TV, having someone to spend time with, and just having a non toxic place to live where I don't have to fight with anyone every day. This is not (here comes the disclaimer) to say that I don't have my frequent moments of self-pity and wish I had more. But they don't consume my life like they did pre-MCS. They don't last very long.

Every time I start to get upset over something my life now, all I have to do is set my mind to a memory, any memory, from how it was the last three years, and say to myself "Do you want it to be like that again? No? Well, then be glad for what you have!" and that is usually enough for me to feel at least a momentary flash of gratitude and thankfulness. Then I go back to bitching. :) No, seriously, but any complaining that I do do is far less in intensity, and that is a good thing.

I wonder why it takes such serious life events for us to wake up and smell the coffee and appreciate what we have around us. Maybe it's just a matter of perspective. Everyone needs to have their perspective shaken up once in a while. It's the reason that my former college became the first in the nation to require students to go abroad one semester in order to graduate. They wanted to give students a different perspective. (I think that is a great idea in theory but I never would have lasted a second in a foreign country. I think they should let students travel to places or experiences that are foreign to them in the US to fulfill the requirement. Luckily they did this after I left.)

I suppose it is for the same reason that I didn't truly enjoy Maine until I went away for college to Maryland. It's very hard to appreciate something you have, to not take it for granted, until you lose it. And hopefully get it back again.

This is not a perspective unique to me. I am reminded of a memoir by Michael J. Fox that I read once, about his struggles with Parkinson's; "Lucky Man" is the title. It was a very illuminating book. In it, he basically says that Parkinson's saved his life; that it was a great gift to him. Before the disease hit, he was always busy, always on the run, no time to think, and if I remember right, his personality suffered - he didn't take very good care of his personal relationships, was sometimes rude and uncaring, and so on and so on. After Parkinson's forced him to slow way down and eliminate all the excess from his life, he started to realize how much he hated the person he had been. He started to realize joy in things he had never seen joy in before. He improved his relationships. He had a better connection with himself, others and the world because illness had forced him to take stock of himself.

This is not to say that everyone should get Parkinson's or some other disease for the perspective it gives, or even that this theme is uniformly applied among all people with serious illnesses. But it is an interesting thing to think about. I hope I am not quoting this wrong or remembering wrong, but I think Fox said he likes his life better now than before he got sick. Yes, he is limited now in many more ways than before he was sick - at least physically - but in other ways, his mind and life have opened up so much.

I guess that's a tiny bit what I was feeling .I am so much more limited physically than I was before MCS, so much that it shocks most people to realize, but on the other hand my mind has opened up. I am more cheerful and thankful than was I before. I wouldn't say this if I hadn't finally managed to come to a good place in my life (and knock on wood it lasts). If you had asked me seven months ago, of course I wouldn't say this. I was miserable! I was in the middle of a crisis that had dragged on for three years. But all I am saying is that now, when I have more or less in many ways come out of the other side of it, at least the worst of it, I take pride in my ability to enjoy what I *have* in the world instead of pining for what I don't.

For example, yesterday I bought my roommate two pounds of fudge, whoopie pies and brownies for a birthday present, and made pyramids out of them for an appealing visual design. I used to die for this stuff, I loved it so much. But I seem to get sick whenever I eat it now, so I don't. It was kind of hard handling it and smelling it without being able to eat it, but I didn't really mind that much. It was a small thing. I had my rice crackers. My rice crackers satisfy me. If I didn't have them, that would be another thing. But in many areas of my life, I have taken things I used to be able to do but can't anymore (go into buildings, stores, plays, etc) and transferred them to things I *can* do (go to beaches and beautiful hiking spots), and what do you know, I think I'm more happy with the more limited selection of things I am able to do now than I was when I had everything. Because I can appreciate them.

That doesn't mean I don't have a longing in my heart to be able to do some of the things I used to do, but I try not to let it control me. Life's too short to be upset if you don't have to be. I hope it will come in time, for now I will just enjoy what I have.

I was going to write something about going to Fort Preble at SMCC with Nate and Rob on Saturday, but I've run out of space and energy. Suffice it to say that I felt a much greater sense of connection with them than usual, and also a sense of connection with the outdoors and the beautiful ocean air and beach, and it just made me feel happy and grateful. Grateful to be a part of something - grateful to be a part of a group!

That was it - the feeling of belonging somewhere, finally, at last. Two people to whom I feel special to and who are very special to me. Friends who understand my needs, and I theirs; friends who I can look forward to fun outings with and good conversations. It took me a long, long, LONG time to get here.

For so long, friends were something that I tried to do because everyone else was doing it. I really didn't understand what you were supposed to do with friends. And if you put me with 90% of the population, I probably still wouldn't. But after knowing these particular two friends for about three years, I think we, and I, have finally got it down. Slow learning curve, yes, but you get there eventually. The hardest part is not judging yourself against the timeline of others; you'll never get anywhere if you do. That goes for both people with autism and other disabilities, as well as parents of kids with autism and other disabilities. Certain concepts take a lot of time and life experience to sink in and take root, but let your child go at their own pace and always love and support them wherever they are, because one day, they will get to a place worth going.


  1. A place worth going.

    Gavin Bollard said this, in context of being proud of the child, or being proud of yourself.

    I also enjoyed Michael Fox's book: the sequel called Always Looking Up.

    There was something wonderful from the Disability Liasion Unit at Melbourne University, called Choose Responsibility, which talked about complaining. I think she mentioned self-pity too.

  2. wonderfully said, kate! I am so happy for you...and I am so glad I met you through the Canary Report when you were still finding your way back to Maine. What a difference being in a safe (safer) place and having your basic needs met, makes. You are an inspiration!
    I am really glad to be able to read and comprehend these blogs! Something I used to not be able to do!
    Blessings. Connie Rae on Canary Report

  3. I love the things you write about. :) It really is true that we sometimes have to go without blessings for a time to realize we have them and not take them for granted. It always amazes me that I love my life so much more during challenges and times when I lose something... then get it back and feel so thankful for it!

    And it amazes me how God blesses us so much in the form of challenges and by supporting us in our challenges... without us even being aware; I try to see as many of my blessings as I can so I can have the joy that comes from gratitude for my blessings. Here is one of my favorite quotes...
    "If this people could comprehend their blessings they never need have an unhappy moment. If this people could comprehend the position they stand in and their true relationship with God they would feel perfectly satisfied, and they would realize that our Heavenly Father is merciful unto us and that he has bestowed great and glorious blessings upon us." Wilford Woodruff

    Disabilities and struggles really are blessings. The only mountains that give satisfaction and a feeling of accomplishment after climbing are the ones with a challenging slope. ;)

  4. Everyone needs to have their perspective shaken up once in a while.


  5. I believe in what you have said regarding having a serious medical condition can make you much more appreciative of what you have. I enjoyed reading your blog, and want to thank you for reading mine - and for being a kind friend on InLv!

    Barbara Keri

  6. Another one claiming to be an Asperger case. It figures the morons here would fall for you.

  7. Sure is sad when some asshole makes an anonymous comment. Doesn't have the balls to identify himself. Figures.

  8. No Jan-the only assholes are people like you who buy the crap that someone is suddenly diagnosed with autism after 21 years. Misfits like this preach how wonderful this "disability" is and clueless parents fall for it. Give me a break. Phoney.

  9. Kate, I really identify with what you wrote on the learning curve of friendship. I think that's a good way to describe how Nigel is evolving with his friendships. He will get there someday! I'm glad you have, too.