Detours

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." --E.M. Forster

None of us choose this kind of life. We didn't wake up one morning and think, "Gee, I'm not so fond of working and going out with friends and being "normal", I think I'll see what it's like to be sick all the time!" As much as we seem optimistic and happy, we are constantly struggling to accept the life that we have been given and to not sink down into a pit of despair, depression, and feeling sorry for ourselves. We try, and we try, and we try. We try to be optimistic, try to focus our (limited) energy on the things we DO have control over, however few and far between they may be. We try to focus on the little things that can brighten our day - the fresh smell of spring, watching a favorite movie, getting an e-mail from a friend, a soothing cup of tea, sitting outside in the sunshine, snowflakes slowly floating to the ground. These little things mean so much more when the big things aren't happy or soothing.

We usually can't go out to a movie because we are too tired, sitting up for that long would cause major problems, or our immune systems are so bottomed out that being around a group of strangers and their germs could be too much to handle. So instead we subscribe to Netflix and watch movies while snuggled up in bed.

We often cannot handle reading for any period of time because our heads hurt, or our eyes just can't focus, or our brains are so foggy that we cannot understand what's written on the page or remember what we just read (which makes following a storyline very difficult). So instead we get books on CD out of the library or buy and download them online and we listen to stories. Old stories are comforting, there's something to be said for familiarity.

We sometimes have trouble eating "real" food (you know, basically everything you'd find on a menu at...any restaurant) because our stomachs turn somersaults with each bite, or we have to curl up in pain after eating, or we are unfortunate enough to have our meals end up going in reverse. So instead we enjoy slowly sipping tea or exploring new varieties of popsicles (yes, they sometimes become a food group all their own!).

We frequently can't leave the house because we're having trouble walking, or sitting up in the car is too exhausting, or we are attached to IV poles too much of the day. So instead we throw our windows open wide when the weather is warm and smell the fresh air or we sit out on the porch curled up in a blanket and watch the clouds floating across the sky. Or, during winter, we curl up in bed or on the couch by a window and watch the snowflakes float down to the ground, seeming to turn the world from a bleak, dark landscape to one twinkling with life and light.

We intermittently can't help but spend the day sleeping or curled up on the bathroom floor just hoping we don't throw up (or hoping to stop throwing up). So we surround ourselves with peaceful things, we light candles that send the scent of vanilla and cinnamon throughout our rooms, we keep blankets and pillows close by that can be grabbed to make a little bed on the bathroom floor, we watch DVDs on our computers to help pass the time and take our minds off things.

We sing when we have enough breath, and when we don't we sing on the inside.

We dance when our legs will hold us, and when they won't we carry the movement in our hearts.

We laugh when our bellies don't hurt, and when they do our spirits are giggling and laughing.

We didn't choose this life. And I don't think any of us would say that they are glad they got sick, at least not in the way that you'd be glad to get a new TV or to see a good friend. We are not glad, but there are parts of being sick that, when looked at in the right way, can bring more meaning and perspective to our lives. The little things become the big things, and the big things, well, they just kind of fade away and become less important (in a good way). We don't see the world all rosy and wonderful. We have seen aspects of life that make things seem downright bleak. And scary. Life can be very scary when questions of what to be when you grow up, who you would like to marry, and how many kids you would like to have become questions of whether it would be too exhausting to leave the house, whether you need to spend the day in bed resting, and whether you need to call in refills of any medications.

It's easy to slip into a mode of feeling sorry for yourself. To look at the world around us, at the people around us, and only see those things that we cannot do, that we're missing out on, that we long in our hearts to be able to do again (or for the first time). But falling into that pit doesn't help anything. Don't get me wrong, I think it's only natural to have periods of feeling sorry for ourselves and it's unrealistic to expect people who are so very NOT in control of their lives to keep the rosy glasses on all the time. When we are in the comforts of our bed or talking to someone we trust we can let go, cry for all the things we want to be able to do, curse the world for being unfair, and allow ourselves to acknowledge all that we've lost. But once we are done crying, done cursing, done feeling sorry for ourselves we pick ourselves up and go back to living our lives.

Our lives may not be what we wanted. We may have been planning for a life full of socializing, working hard, having a family, becoming a successful person, wife, husband, mother, father, career man or woman. But one thing that our lives have taught us is that no matter how much we plan, things can often take a detour and our end point isn't what we had mapped out for ourselves. And planning is a double-edged sword. If we plan we can sometimes prepare ourselves for doing something "normal" like going out to the movies or on a trip to visit friends or family. But sometimes it doesn't matter how much we plan, no matter how much we save up our spoons we are simply unable to visit the world of "normalcy" - our joints and muscles just won't support us, our low energy level prevents us from moving more than is absolutely necessary, our stomachs just can't handle being without a heating pad, our heads throb and we cannot handle exposure to light. Planning can bring about disappointment and further resentment of our bodies and limited lives. And we need flexibility or we will constantly be recovering from overdoing it or put ourselves in situations that are detrimental to our health.

We didn't choose this life, but it's the life we have. It's all we have and we cannot spend it thinking about all the things we could have done. Instead we must focus our energy on living this life to the fullest. We must push ourselves to get up when we can and allow ourselves to stay in bed when we need to. We need to avoid blaming ourselves, or our bodies, or our loved ones for the life we have. It's the only life we have and we must make the best of it. Afterall, "Our lives are not determined by what happens to us but by how we react to what happens, not by what life brings to us, but by the attitude we bring to life. A positive attitude causes a chain reaction of positive thoughts, events, and outcomes. It is a catalyst, a spark that creates extraordinary results." --Anonymous

Yours,
Penguini

Freedom of Speech?

Yes, there's a question mark at the end of the title of this post. There is a lot held in that question mark. Before I explain, let me just say that I usually don't get into politics, and this isn't really about politics but about our rights in this country and the lengths some people will apparently go to when someone says something they don't agree with.

This afternoon I was just resting in my comfy chair looking around at things on the internet, including music videos. Among other videos I watched the video for the Dixie Chicks song Not Ready to Make Nice.

Here is the music video of the song:


Music Video Codes - MySpace Layouts

And the lyrics:

Forgive, sounds good
Forget, I’m not sure I could
They say time heals everything
But I’m still waiting

I’m through with doubt
There’s nothing left for me to figure out
I’ve paid a price
And I’ll keep paying

I’m not ready to make nice
I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should

I know you said
Can’t you just get over it
It turned my whole world around
And I kind of like it

I made my bed and I sleep like a baby
With no regrets and I don’t mind sayin’
It’s a sad sad story when a mother will teach her
Daughter that she ought to hate a perfect stranger
And how in the world can the words that I said
Send somebody so over the edge
That they’d write me a letter
Sayin’ that I better shut up and sing
Or my life will be over

I’m not ready to make nice
I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should

(I’m not ready to make nice)
I’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should

Forgive, sounds good
Forget, I’m not sure I could
They say time heals everything
But I’m still waiting

I had seen them on a talk show (I think it was Ellen) a few weeks ago performing this song and talking a bit about the story behind it. If you don't know the story behind them and freedom of speech, here are a few articles that explain what happened in 2003.

Greater Democracy: Discouraging Freedom of Speech
CNN: Dixie Chicks pulled from air after bashing Bush
Dixie Chicks: Still Defiant

Basically, at a concert in March 2003 the lead singer exercised her right of freedom of speech and said "we're ashamed the president of the United States is from Texas." After that, they were banned from being played on some radio stations, they got death threats, people were encouraged to throw out their CDs and concert tickets, and they were called traitors and told to "move to France". The whole turn of events is pretty sad and scary. Apparently you're not considered "patriotic" by expressing your thoughts. Apparently our rights are only okay if we express the same views as everyone else. You don't have to agree with what other people say, but if we start taking away people's rights to freedom of speech how is that being patriotic? When I have expressed some views that are unpopular, I have faced arguments and been told I should move to Canada. Again I say, this is a sad and scary state of the country. The Dixie Chicks are now being played again on most radio stations (at least from the information I found online) but this issue of free speech is still a big deal. This new song, Not Ready to Make Nice focuses on them not being ready to just forget about the turn of events that caused so many people to hate them for the words they spoke.

There is apparently a movie coming out soon about the aftermath of the Dixie Chicks' exercising their right to free speech at that concert in 2003 called "Shut Up and Sing" (in the trailer there's a clip of a man and woman saying, "keep playin', keep makin' music, and keep your mouth shut"). You can read more about it here on their website and there's a link to a trailer of it. I strongly urge you all to go watch the trailer. No matter what your political views, no matter what your choice of music may be, I feel very strongly that this is an important topic that needs to be discussed. We cannot become a dictatorship. We are supposed to stand for freedom and we cannot become so caught up in our own beliefs and views that we forget about the rights that each and every one of us has. Stand up for what you believe, you have the right, but remember that everyone else has that same right.



Yours,
Penguini

Scent Memories

"Some memories are realities, and are better than anything that can ever happen to one again."
--Willa Cather, My Antonia

It's amazing how many memories we can store. And it's even more interesting how and when the memories are triggered to pop up. Whether it's walking by a building that you remember going to long ago and the sight of it unexpectedly brings up those memories. Or hearing some sound, a train whistle or the gentle lapping of waves along the shore, which triggers a memory of a special time. Or smelling a scent that immediately takes you back to a time or place you hadn't been thinking about. It's this last one that has surprised me repeatedly in the last week or two.

After rummaging around in the glove compartment in my car to put my new registration in there, I found some car air fresheners that I believe I bought soon after I got my car (yes, they've apparently been sitting in there for about 4 years). It was one of those little trees that hangs from your rearview mirror and smells like pine, or at least is supposed to smell like pine (those never really quite smell like what they're supposed to smell like). So I decided to hang it up and no sooner had I opened up the package than I was jerked back 4 years to the winter of 2002 when I last had one of those hung up in my car. The scent immediately brought me back to what was a wonderful time while I was in the midst of it but now brings with it many mixed emotions. In the winter of 2002 I was doing pretty well health-wise, just finishing up 6 months of IV antibiotics that seemed to give me back some semblance of my life, but most importantly it was the beginning of a serious relationship that changed my life. During that relationship I usually did most of the driving since his car was...well, not in the best winterized shape (he had no heat in his car). Sitting there in my car the other day, I was brought back to an afternoon spent driving around doing Christmas shopping and just being so happy to be together. To seemingly normal, uneventful drives to the movies, to go out to eat, and a million other simple events that together form a ball of memories that always seem to bounce back up when I'm not expecting it. That relationship was one of the happiest times in my life so far but brings with it memories of one of the most difficult times in my life.

I can deal with health problems, I can deal with not being able to go out and do "normal" things, I can deal with tests and being poked and prodded but when it comes to relationships, not necessarily romantic relationships but just relationships with people in general, there is a much higher danger of getting hurt. Putting your heart out there can be amazing, can bring a level of closeness and happiness that simply can't be felt by guarding yourself, but it brings with it the danger of being sliced open. Our hearts are fragile things and, once broken, they can take an eternity to heal and perhaps can never be fully healed but always left with the scars of our lives. No matter how many times we are hurt, we have to find a way to patch up our wounds and not live the rest of our lives with a shield around our hearts and our lives.

So I got hurt...badly. He didn't hurt me on purpose. It wasn't an act of malevolence. It was one of those things that just happens. When a relationship ends, most of the time someone is going to get hurt. And I was just that unlucky person. I had put myself so much into that relationship, for once I felt ”normal” in some capacity. I had a boyfriend. I was going out to the movies or just sitting around at home and watching TV. I was going out to eat. I was cooking him dinner. I was ”normal”! I was doing what so many other people my age were doing. For the first time in a long time, I was able to concentrate on something other than my health and it was an amazing feeling. And then it crashed down around me and I was left devastated, in a state that I still have not quite recovered from. I don’t know if I ever really want to fully recover – I feel that the scars left from that very difficult time will remind me of how good things can be as well as how bad they can end up. And both the good and bad times of that relationship, and so many other things in my life, have shaped me and changed me, hopefully for the better.

So you can see the difficulty I’ve had with that little, usually insignificant, unremarkable green tree hanging from my rearview mirror. Every time I open up the door of my car, I get a whiff of that pine scent and a surge of memories with it. My first instinct when this happened and really surprised me was to take down the little tree, throw it away, and note to never buy a car air freshener of that scent again. But I fought that urge. I don’t want that scent to be forever connected to those mixed emotions. I want to overcome that, in a way, and reprogram my mind (or nose) to be able to associate that smell with other things and not just be so overcome with memories that I may not want to be forced to think about when I’m driving around. Maybe that will be much more difficult than I hope. Maybe I’ll get to a point where I can’t take it anymore and have to just throw that little tree away and never buy that scent again. Or maybe I’ll just need to surrender to those memories and find a way to not be overtaken by them whenever they pop up. Maybe that scent will help me remember that time when I was “normal” and so happy. We must have these sense memories for a reason. And we must take the bad memories with the good. Maybe it will help me remember that we all must be careful how we treat others.

"Be kind - everyone you meet is fighting a hard battle."--John Watson

Yours,
Penguini

Enjoy the Ride

You can't run from the world. You can't run and you can't hide, it will always find you. The days of being able to hide under your covers from all the bad things out there in the world are long gone. There are always going to be bad things out there and a lot of the time it may seem like they are aimed directly at you and there is no place to run to avoid them. But maybe the key is to not run. Maybe being hit with it in the back as you're running away is only going to make it worse, prevent you from seeing it as clearly as possible before it hits so you can be prepared for it. I guess it comes down to the question of how you want to deal with pain, with suffering, with disappointments, with let downs, with all the big bad things the world can (and does) throw at you - do you want to deny that it's going to happen until the moment that it slams into your back and sends you flying to the ground or do you want to face the world, eyes wide open and taking it all in, and see the big bad things for what they are while still enjoying the view from the mountain top. You can't hide your head in the sand. The world doesn't work that way. The best we can do is lie on the sand and soak up the sun while it's out and not worry about the storm that may hit and wash us away with the tide. Because those things are always going to be there - the "what if"s, the hypothetical disasters that could be waiting just around the bend - but we have no control over when they'll hit so we might as well enjoy the ride.

Yours,
Penguini

Can you imagine?

When you think of what in your life is most important, what comes to mind? Family? Friends? Love? Are there any things - objects, tangible items, possessions - on your list of what's most important to you? I bet there aren't, and if there are perhaps you should re-think your priorities.

So if tangible items don't make the list of importance, why do we all spend so much time worried about buying the latest car, the fancy new mp3 player, the bigger and better TV. Why do we focus on getting more and more? And in the midst of all that, are we really keeping in mind what's really important?

Have you passed up a chance to spend time with your family because you want to go to the mall? Have you put off visiting a friend because you just can't squeeze it in around work and all those errands that just have to be done today?

True, material things can make life easier. Imagine life before VCRs to tape a show or movie you'll miss. And it certainly is easier to carry around an entire CD collection in one handy, compact mp3 player. And some things are obviously necessary, but life's necessities are just the basics and we (by that I mean our society as a whole) are certainly focused on getting more and more, bigger and better, the newer the better.

In a society that stresses the "good life", living beyond one's means, keeping up with the Joneses (whoever they are), where you're immediately bombarded with commercials for super this and new and improved that, how can we avoid being taken in by such commercialism? What would happen if we just decided to ignore it? To turn off the TV's, shut down the computers, stop our cars, and emerge from our dazed states. Can you even imagine how things could be? Is it too mind boggling or can you picture a simpler (although far from simplistic) world? Can you imagine??

Yours,
Penguini

You are what you eat

Why is it so hard to do what is good for us? Why do we do things that we know will cause us (or others) pain or suffering? You might think I'm talking about being kind to others, not hurting or lying to people, not sacrificing our own health and well being in order to be successful or wealthy. But no, I'm not talking about anything quite that profound (although this could easily be made about those things). I'm talking more about the mundane things, like what we eat. Why is it so hard to eat vegetables when we know they are good for us? Why do we choose the fluffy, non-nutritious white bread over the whole grain ones? And why do we eat things that we KNOW will not sit well on our stomachs, cause pain or other discomfort, and otherwise just be bad for us?

This all comes from a bad choice of a snack to munch on a little while ago. Granted, my GI tract is anything but "normal" or "healthy", but I know more or less what I can handle and what I can't at any given time. So when I grabbed the bag of (low-fat) granola and started munching on it while working on school work I KNEW it wasn't a good idea with the way my stomach has been over the past week or so. On my GOOD days I can tolerate a little granola or something equally difficult to digest but I know that on my bad days (or even my middle-of-the-road days) eating something like that is just asking for trouble. But somehow my brain gets overruled by my taste buds or desire for something crunchy to snack on and I just can't help myself from eating a little bit of things I shouldn't. And then after a few minutes of munching I remember why it is that I avoid those foods. Pain, nausea, just generally not feeling well.

So why do I repeatedly do this to myself? Why do I look at some foods, have my brain tell me it's NOT a good idea to eat it, but still go ahead and have some anyway? Do I have no will power? Or do I think deep down that things will be different this time, that maybe things have gotten better and I won't have to deal with all the problems that come with eating "normally"? I don't know the answer to any of these questions but it's an ongoing struggle with me. Instead of sticking to the applesauce, soup, and other mushy/liquidy foods I go out on a limb and try eating "real" food only to end up in pain or feeling like I'm going to throw up.

Don't get me wrong, this doesn't happen all the time. There are days (even whole WEEKS) where I can eat many more different foods without much trouble. I can have baked chicken breasts, sandwiches (made with vegetarian "meat" and rice cheese), cereal, sometimes even adapted pizza or pasta. I can tolerate some things more often than others but there ARE days where I hardly have to watch what I eat at all. But the days of paying for eating much of anything that's "normal" outnumber the ones of being able to eat anything I want (within reason - I still can't handle much fat or fiber). I just don't know why I'm not able to really listen to my brain when it says I shouldn't eat something. And this extends to anyone, not just someone with stomach problems. Do you eat your vegetables and fruits and whole grains everyday? Do you give in to fast food even when you know it's bad for you and will probably leave you at least mildly sick to your stomach? Do you snack all day long on chips and cookies and soda or do you stick to carrot sticks and apples and water? And speaking of water, do you drink your 8 glasses a day? Do you stay way from foods that you know you SHOULDN'T have or do you just eat them anyway and pay the price later?

You don't have to answer those questions, but maybe we should all ask ourselves why we do what we do when we know it's bad for us. With more people in our society being diagnosed with Diabetes and obesity, I think we as a society need to look at what's wrong with our lifestyles. We need to look at why it's easier and cheaper to pick up a double bacon cheeseburger at McDonalds than to make chicken and a salad at home. We need to ask why most public schools continue to serve food high in fat and saturated fat. (For more information on the Boston Public School system's lunch program, see this article.) How many of you have seen Super Size Me, a documentary about how bad McDonald's food is for you? Do you know the nutritional content of that can of soda? (Talk about empty, sugar calories.) Have you seen how big portion sizes SHOULD be versus how they ARE in the US? It's shocking to see how bad our diets have become. An average diet should consist of approximately 2000 calories and approximately 60 grams of fat (with less than approximately 20 grams of saturated fat). Did you know that a Big Mac carries a whopping 30 grams of fat and 10 grams of saturated fat? And if you make it a meal and add a large order of french fries you'll be doubling the amount of fat and taking in over 1100 calories? It's crazy.

So let's say you're watching what you eat and when you stop at McDonald's you make a "smart" choice and go with a salad thinking it will be good for you. It could be, if you go with a grilled chicken salad and skip the dressing (or go for a little of the low-fat offerings). But if you go with a Caesar salad with crispy chicken (i.e. fried chicken strips), the fat content more than doubles, and if you add creamy Caesar dressing you'll end up with 31 grams of fat - MORE than a Big Mac!

I didn't mean for this to turn into a whole nutrition rant but it really makes you wonder why our society is stuck in these ways. Are we really only interested in how things TASTE and we disregard how they will affect our health in the long (or even short) term? Or are we so bombarded with advertisements for new foods high in fat and saturated fat and low in real nutritional value that we can't help but go out and buy the newest KFC bowl or McDonald's crispy chicken sandwich? It seems as though we have two choices - just sit back and let the fast food industry become more and more powerful or make a stand against it. It doesn't have to be a big stand. I'm not talking about picket signs outside the local Taco Bell or Burger King. Imagine what we could do if a lot of us decided to start making more healthy choices, started cooking at home more often, started bringing sandwiches or salads to work with us instead of stopping off at the nearest fast food joint to grab a bite to eat, started looking at the big picture! The fast food places would lose money and perhaps be forced to serve some food that is REALLY healthy rather than simply looking healthy as with the McDonald's Caesar salad. Buy organic fruits and vegetables. Look for more quick and easy dinners that you can make using healthy ingredients instead of calling out for pizza (or for that matter, keep some pizza dough in your fridge or freezer and make your own pizza with lots of healthy toppings - skip the artery clogging pepperoni and sausage and instead put on garlic, chicken, and onions for a flavorful and healthy alternative). Just take a few minutes to really look at your diet and your eating habits and see if there are areas where you can make small changes towards a healthier diet. Or just ignore me and go on your merry way. The choice is yours.

Yours,
Penguini