Friday, January 16, 2009

Some of my Writing

I am a writer, I guess all of us bloggers are really. . . and today I wanted to share a piece I had written for my writer's group. The idea was to discuss your most important day, however you interpreted that phrase. Below is what I wrote.


The morning dawned clear and full of promise. As the alarm rang, I hit the off button ans sprang from my bed ready to face the day and whatever it held. I zipped through all my morning routine, from shower to breakfast and was on the way out the door in a little over an hour. I continued at full pace all day at work, got lots accomplished and stopped to meet friends after work for a drink. When I arrived home after 10 pm, I did a quick load of laundry, finished the breakfast dishes I had left behind and made my "to-do" list for the next day. Before heading to bed around midnight I set out my clothes for the following morning and watched a little of the late night talk shows before drifting off to sleep to repeat the same scenario all over again the following day. I didn't know it at the time, but this day, and many days like it, were my most important days. You see, I'm one of millions of Americans who battles multiple chronic illnesses, most of which are called "invisible illnesses", not because they aren't real, but because their affect isn't always obvious to the untrained eye.

Depending on when and where you meet me, you might not even know I am sick. But sick I am, and there isn't a part of my life that hasn't been changed over the past 12 years. BBI (Before Becoming Ill) I took all the parts of a normal day for granted. All the tasks that we each do, personal hygiene, errands, socializing, work, play, exercise and even sleep were givens, a part of everyone's life. I never had to make a decision between having the energy to shower or the energy to vacuum the rug; there was energy enough for all of it.

My knowledge of our medical system, of drugs, hospitals and doctors was limited to the occasional bout of flu and my annual GYN exam. I took my health for granted, it would always be there, right? I mean after all, I was 30 years old, why would I think otherwise?

Now after years of hard won knowledge, not only of the medical system, but more importantly of my own body, I realize how naive I was then. But in my naivete was also a wonderful care-freeness, the same trait that helped to form that most important day, the day that existed before illness robbed me of pieces of myself bit by bit. The day when I didn't have to make every single choice based on how I am feeling, how I will feel if I do a particular action, eat a particular food, or take a particular medication. The day, not extraordinary, but ordinary to all who are healthy, and envied by all who are not.

Most people, if they are blessed to live long enough, will face the loss of being able to do certain things. After all, our bodies age and we expect that as they do we may have to give up activities or at least tone them down. The marathon runner may become a jogger, the jogger a walker and so on. We even realize that we will have aches and pains and tire more easily, but we never expect it to happen while we are young!

The heinousness of chronic illness is that it is chronic, meaning it NEVER goes away. Some days are better than others and some treatments provide temporary relief of some symptoms, but there is no cure, no getting better for good. And most chronic illnesses progress, even if very slowly, stealing from you like a thief in the night. Each symptom brings its own array of collateral damage. Pain for instance makes sleep difficult, which increases fatigue and decreases mental clarity. It's like a game of dominoes, one symptom tumbling into the next and knocking into the next and so on.

If you are lucky enough to be healthy, you probably get up and begin your day without any thought to how your physical body is doing (like my most important day), not because you are ignorant, but because you can. Your body isn't calling the shots from the moment you open your eyes (assuming you were lucky enough to sleep the night before!). That is/was my ideal day! The days that occurred, without notice, when I went about my business without having to weigh everything I did and determine what would be possible and what wouldn't. To not have to cancel plans made with a friend due to an unexpected flare. To be able to help someone else at a moments notice because I had the energy and ability to do so. To laugh and run and yes, play, with abandon - to love life and those in it to the fullest without compromising or paying for it later.

Since I can't have that day back, I've had to learn to accept life as it now, as it changes each day and to be grateful for all that I can do. Instead of putting my focus on what I have lost, I look at what I have gained. Many people can't imagine what good could come from my illness. At first it was hard for me to see it myself. But, over time, I realized that although I have changed in ways I wished I hadn't, I also changed for the better in other ways. I appreciate the little things now in a way I never did BBI. I am more patient, with myself and others, recognizing as Philo of Alexandria said, "Be kind, for everyone you meet is fighting a great battle". I am not as quick to judge others, especially from appearances, because I know all too well how misleading that can be.

I've learnt a lot about who I am, how strong I am and about who my real friends are. Most people want to be around during the good times in our lives, but who at your side when you are scared, or sick or in pain? Who understands when you have to cancel plans at the last minute yet again? Who is willing to be with you, even when they can't make it better, but knows you need someone to talk to, or cry with, or laugh with? These are the people I treasure beyond telling, because we live in a society that judges us by what job we hold or what financial success we attain, and if judged by those standards, I would be be considered a failure in most eyes. I am on disability and my financial situation is tenuous at best. But there are people who see the value in me, the human being, the funny, kind, smart, caring person trapped inside all the illness. Most importantly, I've learned to see myself that way, to be proud of who I am and to know I have value as person. I can still love, laugh and be a support or inspiration to others, so while I may not always be able to do all I would like in a day, I can take comfort in the knowledge that I've done my best, and when all is said and done, can any of us, healthy or not, ask for more than that?

- - Maureen Hayes 2008 copyrighted


Jo Franz said...

Great and oh so true thoughts, Maureen. Thanks for sharing this.
Would you join my list of followers? I just set it up.
Blessings on your day!

Leslie said...

Wow Maureen, this is really great! And I completely know where you're coming from. Are the other members of your writing group chronically ill? I wish I could find something like that around here.

Renee said...

Wow. This is great Maureen. More than that ~ beautiful. You really were able to let healthy people SEE behind the veil of the chronic illness curtain to what our days are like.
Thank you

Anonymous said...

That has to be one of the best descriptions of what it's like to be chronically ill. It touches on so much of who we are as people, not only our health issues, but our emotional beings. Thank you.

Anonymous said...

This is a wonderful piece of writing! You speak for so many of us. thank you.

MJ said...

Maureen, this is a truly beautifully written piece. It explains so well what it's like to be chronically ill. I'm going to bookmark this and send it to some of those in my life who may not really "get it" about what we go through.

Thanks so much for posting this!

Be well,

Anonymous said...

I don't even remember what it was like to have that kind of energy!

Nice post. I wish you well!

Anonymous said...

Thank you for sharing your thoughts. You provide a window into a world that many don't want to look through, but benefit by seeing.

Anonymous said...

Maureen this is wonderful. What you said hits home for me in so many ways. And truly appreciating those who can just be with us as we are!

- Megan

Blue Lake Dance said...

Crying at my desk. I am trying to accept my new status as Chronically Ill and this was so nice to see.

Anonymous said...

Thank you so much for your words. I have been dealign with esteem issues since I got diagnosed with CFS 12 years ago. You are a wonderful writer . You've captured my exact feelingsand experience.

Kali said...

One of the hard parts, for me, of finally recognizing that I'm part of the chronic illness community is the fact that so much of mine snuck up.

Yes, the part that kicked it over to being a true disability, and one that has me applying for SSI, did have a very obvious start date. But the you said, thieves in the night. It things here and there, no knowledge that there was something really wrong.