Freedom

Sedum and Raindrops. 

At Passover we ask: What does it mean to be free? We remember those who have been freed, we acknowledge those who are still not free, and we celebrate those who are free. The Passover story is told as a deeply personal journey, as if we each individually walk through the desert with Moses on our way to the Promised Land. We dip parsley in salt water to remember the tears our people shed as slaves. We celebrate the importance of freedom for all people, praying for the day when all people are free.

Passover is a deeply spiritual holiday for me. No matter how far I feel I have strayed from God or faith, I'm brought humbly back into the arms of Judaism through ritual, family, friends, and food. As I mentioned in my Easter post, this Passover has been one of deep reflection and insight. It is a holiday in which we can examine our own suffering in light of the suffering our people endured so many years ago. There is a great comfort, somehow, in retelling that story year after year. 

Part of the lesson of the simple and accessible children's seder that Mom and I use is that freedom means many things to many people. Usually, I spend my time thinking about freedom on a larger, more global scale. Obviously, forefront on many of our minds right now is the freedom of the Libyan people and others around the world.

But what about my own personal freedom? I live in the land of the free, right? So how can I complain about a loss of freedom? I, as the Haggadah says, have the right to say "No" when everyone else says "Yes!" (or vice versa). I have the right to be Jewish, to be a Democrat, to choose what I wear, etc.

Still, what Passover illuminated for me this year was my intense feelings of a loss of freedom in life. 

I miss freedom in two ways:

1. I miss the freedom of feeling healthy.  By this, I mean I miss what it felt like to live in a body that gave me the freedom to run, dance, walk, think, read and a million more things with a lightness and ease of movement. For the past 13 years I have only briefly felt moments of lightness in mind or body. Instead, I mostly feel as if I am fighting for every movement and every thought.

2. I miss the freedom to do both big and small things. I'm working on changing my perceptions of choice and perceived choices in my life, but right now I'm feeling smothered by the constraints of illness. I certainly don't feel freedom in any areas of life that most healthy people my age are making decisions about: where to live, what career to pursue, whether or not to have children, how many children to have, what type of house to buy, where to go on vacation, etc. 

I am also not making the types of decisions that are made all day every day (likely without a second thought) by healthy people. Where will I stop to put gas in the car today? Will I run some errands after work today? Which grocery store do I want to shop at this time? Where do I want to take a run/walk/bike ride today? How many cups of coffee am I in the mood for today?  

The last time I was healthy was in college, so that is my only reference point. When I was healthy I certainly could not imagine a day when it would not be routine to get up, shower, get dressed, put on make-up, prepare my own meals, go to classes, participate in extra-curricular activities, study five hours a day, hang out with friends, and walk everywhere I needed to be. I didn't realize the amount of freedom I had in every day of my life, but I certainly remember the joy and lightness in my body that I felt as I engaged in a busy and fulfilling life.

Every day I feel overwhelmed by the constraints illness  places on my life and by the loss of freedom I feel. This can make me feel so very far away from healthy people.

What would it feel like to have the freedom to go out to dinner? To go on vacation? To drink a glass of wine? To stay up late? To get up early to see the sunrise? To eat pizza? To eat ice cream? To fly on a plane? To go for run? To drive a car? To go to the library? To go on an outing independently? To go to the movies? To go out with friends? To go for a swim? To walk on the beach? To plant flowers? To clean the house? To go shopping for clothes? To drink a cup of hot tea in the evening? To watch two movies in a row without getting sick? To spend the day outside? To stand and talk to a neighbor? To wear a skirt? To go without compression hose? To shower in the morning? To go more than a couple of hours without needing to take a medication? To sit up long enough to get a manicure? To go to a basketball game? To bathe and brush my own dog? To cook dinner for my mom? To go to my friend's weddings? To go visit them and meet their children? To go to a birthday party? To have a birthday party? To go to a store and casually browse? To turn the music up really loud and sing along with it? To dress up and go somewhere fancy? What would it feel like to have the freedom to have a 'busy' day?

Sometimes it is the smallest of lost freedoms that can be the tipping point. We have some lovely new tea I'm waiting to try--a Rooibus blend. I have already made sure to have something that is 1. not coffee and 2. not caffeinated. If I do not perfectly space out my liquids throughout my day, I will pay the price by not being able to nap or sleep at night because I will be up peeing. How can planning a time to drink a seemingly simple cup of tea come with so many constraints? And so many possible negative consequences?

It was this simple desire for a cup of hot tea this weekend that left me shedding those salty tears of pain and loss. I desperately wanted to recline outside after lunch in the sunshine while drinking a cup of hot tea. But I did not want to go without being able to get an afternoon rest because of this choice.

I feel myself screaming inside: I just want to be able to drink a cup of tea without consequences! I just want to go out to the store without us having to time the trip so that I won't end up sick(er)! I just want to eat some pizza and ice cream and have a glass of wine! I just want to get dressed and put on make-up without it feeling like a monumental effort that leaves me totally exhausted!

The challenge is to find a way to live within these constraints, yet feel as if I have some choice. I often don't see that I have choices, especially on the big things like being a mom, getting married, having a career, or going on a nice vacation. (I can have a tendency to be a little too 'black or white' in my thinking.) I have to find choice in the tiniest of things such as choosing the pajamas I want to wear, choosing to use the 'nice' shampoo, choosing to drink a very small cup of tea (rather than not drink it at all), choosing what I watch during my one hour of TV time each day, or choosing what fun color to paint my finger nails this week. On a larger scale, I have the freedom to choose who I interact with and how I spend those very precious moments each day that I am awake.

The challenge is to be able to make decisions while feeling that I did have some choice, that I made the decision with a sense of freedom, and that I made a decision that I feel good about. The other challenge is finding some sort of acceptance in regards to the things that I simply do not have the freedom to choose.

The harder the day I am having physically and emotionally, the less able I feel to make any sort of choices about my day. The day feels dictated to me by a body that will not move and a mind that will not focus. How do I find freedom in these days? 

We live in a society in which many of us are blessed with the freedom to make a lot of choices about how we live our lives, and we are taught from a very young age that we are entitled to and will have the opportunity to make these choices. 

I knew this type of freedom for the first 22 years of my life. It is glorious, wonderful and beautiful thing to feel that we have the freedom to choose and to wake up in a healthy, freely moving body. Now, I feel as if I am in the desert with Moses and the Israelites. I, like them, have known freedom. I, like them, have known suffering and cried salty tears. I, like them, am searching for freedom (even if it is a new and different freedom than I hoped for).

Blessings,

Emily