Monday, May 28, 2012

Chicago Portage National Historic Site and Riverside, Illinois

Saturday J. and I walked the path through the Chicago Portage National Historic Site area. The last time we were there, we volunteered to help the Cook County Forest Preserve District clear out invasive plants, a hot, sweaty, satisfying task.

This time, we took a leisurely stroll and enjoyed beautiful, mosquito-free weather. Afterward, we visited Riverside Public Library, walked along the river, dined at The Chew Chew, and topped off dinner with ice cream at Grumpy's CafĂ©. I did run out of steam thanks to my latest issues, but not before relishing a perfect day. I need more of these.

Thursday, May 24, 2012

"A letter to the normals from a person with severe chronic pain"

I found this posted without attribution on the Patients Like Me site and repeat it without comment.
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed. 
In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me. 
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too. 
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. that’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome. 
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. 
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic pain does to you. 
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do. 
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression. 
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone. 
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. 
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general. 
In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able. 
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot. 
Thank you.

Sunday, May 20, 2012

Bully, AT&T!

The TV commercial that I love to hate is back.

You may have seen it (although I'm probably the last person without DVR). It's Daddy's Career Day at elementary school, and an unshaven, unkempt cable guy awkwardly starts to tell the class the basics of what he does. Quickly, a chubby-cheeked, cherub-faced little girl challenges him with a loaded question, then points out with a wry face that he's wrong—her mother says AT&T can do what he's just said can't be done. The rest of the class looks ready to jump in. The teacher does, mocking him about some other feature that cable doesn't offer. Finally, the beaten cable guy says, "Who wants to hear from a fireman?" The teacher quickly raises her hand and says, "I do," encouraging her enthusiastic charges to do the same. "Yea!" they scream as the cable guy sheepishly slinks off, yielding the floor to the smirking fireman.

It's just a TV ad, just big AT&T vs. big cable (presumably Comcast). It's just a vignette, a slice of life, a more engaging, memorable way to highlight AT&T's supposed advantages over their competitor than laying it out through direct narrative. But I loathe every moment and detail of this commercial. Why?

There's nothing overly controversial in the concept, copy, or execution, 60 seconds that no one's going to chat about at the water cooler.

Does the behavior sound familiar, though? It should. It's no more and no less than bullying. No one likes the cable guy—he's unattractive and inarticulate, and he represents the clearly unpopular cable company, while AT&T is the cool kid in school. Not only do the children belittle him, but they're aided and abetted by their teacher, the adult authority who of all people should be quick to take responsibility for stopping bullying before it takes root. Instead, she smirks and gives the man the equivalent of the old-fashioned hook pulling him offstage.

Haven't we (or AT&T and their ad agency) learned anything since Columbine turned the spotlight on bullying and the potential consequences? Since each incident of school violence and each teen suicide that flashes that spotlight again? Every time something happens, hundreds of people express their horror and their aversion on news sites that cross international boundaries.

Yet there it is, still winked at in a commercial for giant AT&T. I squirm each time I see it, perhaps because many times and in many places I've been the cable guy facing a bully or even a room full of bullies. Despite all the awareness campaigns and all the impotent outrage over every senseless death and injury, bullying is deeply embedded in our culture—it's in our schools, businesses, and workplaces, even in our churches.

And on our TVs. If we don't have DVR.