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