Lupus Lessons In Freedom

When I was young a bicycle seemed like freedom. You could travel much further on a bicycle than you could one foot. Plus a bicycle was fast. And I was thrilled with my bicycle.

Until I was old enough to drive a car. A car was truly freedom. It could go further and faster and there was something liberating about a road trip. And I loved it.

Now there are of course limitations to these modes of freedom. Cars require maintenance and gas. They require insurance and licensing and so on. A bike also had maintenance needs, such as air in the tires and greasing a chain. Not as expensive, but again, not as liberating as the car. Of course there is a trade off in price versus the amount of freedom.

Having come out of a very awful flare up of lupus a while back, I realized that freedom isn’t a car. It isn’t a bike. It is being able to walk without too much pain. It is being able to breathe on your own. It’s being able to dress yourself and make yourself presentable. It is being able to make decisions on your own and so on.

It’s funny how lupus frequently reminds me of my blessings. Lupus more than anything else has taught me gratitude because lupus, more than anything else took away what I had taken for granted.

Not that I’m saying I wouldn’t have learned these lessons without lupus, for I may very well have done that. But lupus certainly brought the object of the lesson directly to my attention.


Get Out Of The Box

When I was a small child, there was nothing I loved more than to ride in the back of my father’s pickup truck. In the box to be exact. That way I could enjoy the wind in my hair, the smells of the various back roads and the freedom of being “away” from the adults.

It’s illegal now to let children, or dogs for that matter, ride in the box of a truck like that. Of course it still happens. Many times while driving, I will see dogs or children in the box of the truck. And while I can imagine their joy, I know all it takes is the brakes applied just a bit too hard and you aren’t just slipping a bit on the surface you are sitting on. You can become air borne, traveling a great distance very quickly.

I suspect this is why my father stayed on back roads when I was allowed to do this. It’s also why he never drove fast with me in the back, but it felt differently from where I was. From that box, with the wind in my hair, it seemed we were going a lot faster, speeding along while I let myself pretend I was flying.

Power Of Word

What crosses your mind when someone says they are unhooking?  This was a question posed in a recent campus staff survey which found its way into my inbox.  The survey had helpful options to choose from such as:  a) separating members of a couple; b) separating from a potentially unhealthy friendship; c) free styling; or d) something else.

Naturally, I chose something else.  One cannot simply unhook.  You can unhook something, like the dog’s leash to her collar.  You can unhook your arm from someone else’s arm.  And so on.

One of my coworker’s took advantage of the last option and typed her answer in all upper case, bold font.  What she wrote was “bra”.  That’s what she thinks of when someone says s/he is unhooking.

of course we were wrong.  We should have thought of a couple splitting up.  But mostly we should have chosen the last option and then typed in “social media”.  Because evidently everyone needs to unhook from social media to have a healthy mind frame.  (Which is also news to me because social media is not my life nor does it equate to my self-worth.)

I am suppose to, at some point this week, address the power of unhooking in my classes.  My coworker is going to introduce her discussion with clips of women burning their bras because to her, that is liberation.  I will probably go a slightly different route, something to do with a boat…

Homeland or I Can’t Win This One

Beloved walked along the ridge, overlooking the turbulent water swearing this was a place no one ever got to leave.  So I took him with me, away from the ridge, the rocks and the water.  I took him back from the rain and the dreary atmosphere.  To a land of sun, tall grasses and laughter.

He walked along the twisting path, climbing the rocks to over look the valley.  I told him he had managed to leave the place he swore no one ever did. He smiled and said “aye lass to be sure I have, and yet it’s still here” as he pointed at his heart.  And I realized in that moment, unlike myself, a child of the world and no set place as home, Beloved would always yearn to be back there among the rocks and the water with the rain in his face.

We went back to his place, after a year of being away.  It seemed a bit colder, more dreary and yet somehow brighter because of the look on Beloved’s face as he beamed about being home.  He ran back to the ridge, the rocks and the water the next day, telling me that no one could ever really leave it and be truly happily.  No matter how many different paths a man could take, this place would call him back home time and time again.

And I knew if I were to keep him, I’d have to keep that place as well as my desire to remain rootless in balance. Some how. Because no matter how flexible and strong Beloved may seem to be, the roots and rocks of his land always draw him home in a way I never can.

Not My Name

An interesting thing happens when you get a diagnosis of a chronic illness.  Well actually there are several interesting things that happen, from the whole grief cycle to sense of relief and motivation.  But the interesting thing I’m referring to is the way some of us grasp onto that diagnosis as if it’s a life line.

We hold it tight and close to us and we treat it like a life-preserver.  Sure the diagnosis is validation that there was something wrong all along.  It also points forward to a means of treatment which is always a spark or flame of hope.  But it’s easy to forget to take off that life-preserver and it just becomes a part of us.

We literally take on the identity of the illness into our own identity.  For example instead of being a person who happens to have lupus, I could have easily taken lupus into who I was and basically hyphenated it to my name.  The longer you wear that life-preserver the more it simply becomes part of your daily attire.  Lupus makes me tired, therefore I am tired all the time.  Lupus means joint pain and since I am lupus I have joint pain.  Everything you do, at this point, is done with your illness first and foremost in front.  For example, when invited to an outing, I would have to consider sun exposure, stairs and so on.  If those were present or likely to be present, I would have to decline the invitation.

Here’s the thing dear friends.  Yes I have lupus, but it doesn’t define me.  Sure it limits me sometimes, but I also choose to limit how much I let it limit what I am going to do.  Instead if I feel okay and I want to do something, I do.  I may or may not have a flare issue.  If I feel awful, I weigh out how much lupus will cost me and if it costs too much, I set it aside the thing for another day.

I certainly don’t introduce myself with lupus.  If someone says “Hi I’m (insert name here)” I will respond in kind.  I do not add lupus.  I don’t address lupus unless it has to be addressed.  Because I am not lupus.  And if I can offer you one thing, it’s this:  not becoming your illness is the most liberating thing you can do when you have a chronic illness. After all, you are still an amazing person with plenty of gifts and talents to share.

Here A Timer There A Timer

I thought I’d take a page out of the four-footed one’s book and let the day become whatever it wanted other than the obligations I was required to meet.  Only because I haven’t managed to find a way to not need to work or what have you.  Because there are those pesky things called bills.  Which for some reason need to be paid.  On time.

So I did what I had to do and allowed the rest of the day to take me where ever.  Not exactly ideal for me because it’s so easy to get caught up something and then miss the fact I had something for a specific time.  I tend to give in to my passions and interests if left to my own devices.  And once I get into that, time seems to fade away unless I set an annoying timer to pull me back to what I need to be doing.

So I had to set timers which meant that I could never fully get into whatever caught my attention the way the four-footed one does.  Granted she isn’t tied to a clock, or bills for that matter.  Oh no, she’s got the freedom that I want.  But then she has something to take care of the food, housing and all the rest.  Perhaps would have been better to not take a page out of the four-footed one’s book.

Lupus Freedom

When you are young, the first tastes of freedom are small, fleeting and fenced in. For me freedom meant climbing on a swing and allowing myself to swing as high as I could for as long as I could. My parents didn’t seem to mind too much provided that a) I came when I was called and b) I did not jump off the moving swing. I didn’t always live up to those rules.

The next real taste of freedom was walking some place all by myself or taking off on my bike somewhere. Again there were rules, not that I always followed them (it’s sort of a theme in my life), so it wasn’t full-fledged freedom, but it was a start. After that came the car which took me far away, fast or slow, as the world opened up to become something so much larger.

I had always envisioned my life as an adult full of freedom and doing more or less what struck my fancy provided I met my obligations. Except that hasn’t really happened. You see when you have a chronic illness like lupus you suddenly find this concept of freedom being impinged upon. Doctor appointments, lab tests, rules, and such all get the in the way of doing what you please.

On top of that there is the physical price this illness makes you pay. You have to weigh your options of doing one thing at the cost of so much energy, or perhaps making lupus come down hard on you because you didn’t follow one of it’s silly rules.

Some days living with this illness feels like someone is taking away my freedom. My freedom to do what I want or live how I want. Other days, lupus seems to take a backseat, just along for the ride.