Story Time

As he stirred the tea, he told me of the girl who used to live around her—the girl who used to walk the hills as far as the eye could see. Each year she climbed the highest ridge and spent a week up there alone. She would come back down and declare the type of harvest they would have, which crops to plant, and when to make the celebration pots.

One year she went up to the peak with a different type of offerings. She didn’t come back down, the crops withered instead of flourishing, and the festivals did not happen. They didn’t search for her, nor did anyone ever go up the hill again. Apparently, it was her lot in life to carry out this task, and no one was anointed to follow in her footsteps.

With the same systematic approach, he dumped out the water, to read the leaves—the leaves he claimed would tell me what the universe wanted of me. He told me that the leaves would not tell my future; instead, they would explain what the world had in store for me if I followed a particular path. It was my choice to follow the way or not. However, what he told me was as strange as the story he told me earlier, and I left wondering how the universe could see a road to take when it placed at least ten choices at my feet.

Things I’ve Learned From Lupus

It may feel like something awful and unfair is happening to you when you hear you have a chronic illness. I know life isn’t fair, but it feels a bit much.

Time heals things they say. It doesn’t heal how you feel, but you learn to live with the ebb and the flow of your condition. Time and experience give you perspective; you form a relationship of sorts with your chronic illness. You would never call it a friend, that would be going too far. But you come to appreciate how you adapt to live with it and enjoy the good days so much more now.

You learn that there are positive aspects of living with your condition. Lupus has taught me to appreciate the simple things in life, those moments of small joys such as the sun on the flowers and how luxurious it is to spend time with friends. I’ve learned how important it is to take care of myself even when it would be easier to hide behind school and work. I’ve discovered to appreciate the things that make life easier, and that you genuinely do have to put your mask on before you can help anyone else once the masks come down in the airplane. I’ve also come to realize that if you don’t put yourself and your well being first, no one else will either.

Learning From The Rumble

I could feel the train coming long before I saw it or heard it. The ground gets a certain rumbly feeling to it when the trains are running. I never knew this until I came here.

The four-footed one taught me this little trick about trains when we first arrived. I noticed she would stop walking and start looking in all directions. She would stay frozen until she could determine the source of the vibrations, which for her, happened faster than it did for me.

Now, like the locals and the dog, I can judge the distance of the train by the feeling flow under my feet. I wonder how much else I’ve missed noticing when caught in the hustle of the city I’m so used to inhabiting.

In some ways, coming out here, transformed me when I hadn’t realized that is what was happening. Somehow I shed the need to rush everywhere, dashing from place to the next while not noticing my surroundings. Perhaps it is because we walk most places here. Maybe it is because I take the four-footed one with me, and she insists on stopping to smell the flowers and investigate the bugs. In some way, she has taught me to be free again, free from the insanity of living so close to the clock, rushing to make everything fit into the day I had planned.

The Certainty of Uncertainty

I used to be so sure of me, a little hesitant about my next steps, but confident in myself. Life has a way of building a bit of insecurity into our lives, keeping us humble I guess.

Today, while I was deciding what to do for a new project, I realized that the girl who used to be so fierce in her confidence has somehow grown into a woman who pauses.

This woman pauses because she doesn’t want to make a mistake. History has taught her that mistakes take time and energy. Mistakes can cause trust issues, or at least put a smear on credibility.

The girl who used to just go for it in the name of learning and adventure would shake her head at the woman she has become. For the grown woman hems and haws, she debates and assesses only to reassess once more.

The woman is cautious, careful, and a bit uncertain. She knows now that there is so much that she doesn’t know about, that there are experts to contact or consider. She knows that the first answer isn’t always the correct answer.

The girl is somewhere lost inside, lost to the lessons of mistakes and needs to have more information. I hope she comes out again because I sure could use some of that boldness these days.

What A Week

Do you have one of those friends, the kind who helps you find the lesson in everything that happens in your life? One of my friends used to fill that role for me all the time. And I mean all the time.

Miss a bus? She’d tell you that if you had caught the bus, you would have missed out on an experience just waiting for you. Naturally, that experience was something you needed right then in your life.

Over time and distance, I have lost touch with Simone. And yet I still hear her voice saying, “you learned something from this. You just need to figure it out.” I hear that every time something goes wrong.

So dear friends, this week has been full of lessons. From hitting your head on a tile floor to realizing that head injuries can take time show. Who knew? Okay so maybe you did, but my experience with head injuries is the kind that happens immediately. Like blood running down your face or a concussion.

I also learned that the human head can absorb a fair bit of trauma and not crack or break. I learned that using the wrong word for an item can be a serious sign of a head injury and should be looked at immediately.

I learned that even if you have the head looked at immediately, it can take days for the damage to appear. Mostly what I learned was just how much I really need and love Beloved.


He gently shook his head as I started to pick up a stone. Once again I had failed to learn the lesson. Rather than get angry or frustrated with me, he simply put the stones back and motioned for me to follow him.

He went over another section of his house, this one filled with what looked like highly breakable things. With a smile and all the time in the world, he started out describing each item and how it related to the earth, wind, water or fire. He moved to items over to me, and quietly said “take, they are for you”.

And so it was that I came into treasure without even realizing it. He left the room was I was marveling over my new gift, one I would never have anticipated receiving and came back with a small bag. “Wife of many years made this, many years back. I have been waiting for it to tell me who it belongs to and now I’ve heard it tell me it is to belong to you.”

The bag was really a small pouch, intricately woven with beads and sparkle here and there. After I had admired the craftsmanship of the bag, he took it and placed the items in the bag, murmuring over them as he drew the string tight.

He admonished me to keep this near by my person at all times for the spirits would speak to me or at least guide me if I kept this close by. He also assured me that I did not have master the stones, the art of divination as he thought I had gotten what I had come for.

He was correct. I had gotten what I had come for, which wasn’t to learn the art of divination as much as it was to study how he, as a healer, used it to determine a person’s sickness. He could also find what plants and herbs needed to be used the help a person through the same process. I gathered my notes, my priceless gifts and thanked him profusely for allowing an outside into his world. He could not possibly understand how important any of these observations were to me. Instead, he told me, he felt that I was to heal people in another way.

He told me that the observations were not power, they would not do anyone any good for the power was in the healer. If I wanted to share what I had learned I could, but it wouldn’t matter in the end for the observations would just be what my eyes caught. But the other healing that he felt I had learned (I’m not so sure he’s right) would be powerful, but only if I used it as it was meant to be used.

So as I pull together my notes, a lovely bag rests on the table near my hand. The bag represents the power of kindness, faith, and hope. And if those aren’t the main ingredients in healing, I’m not sure what is.

Looking Back With Lupus

Now and the it may seem like I’m lost or stuck in a phase of let’s  remember.  It may seem like I’m chasing my youth or early dreams.  And I guess sometimes I do a bit of that.  It’s natural, heck it’s normal.

And I won’t lie to you friends, there are some things that I wonder about.  But I wouldn’t be the woman I am today without having gone through what I went through.  There are only so many things a prep school education can prepare you for (no pun intended) and somehow living with lupus wasn’t covered.  At least not in my school.  Nor was living with a chronic illness nor living with an invisible illness.  So yeah some of my education was a bit rough isn’t lupus is a hands-on type of educator and I am more of a book learning kind of person.

Lupus taught me that I am so much stronger than I thought I ever would be.  Lupus taught me that it’s okay to raise your voice to be heard.  Lupus taught me that my stubborn behaviour  and determination would pay divides in my personal advocacy and helping others.  I aced those lessons to be sure.  I failed at asking for help.  (Still learning that one.). I failed at knowing where my limits are.  I am still trying to get to this idea of balance.  But it’s okay you know.  You learn how to lose and cope through all of this.

I shed a lot more tears than I ever thought.  But heaves have I learned how to laugh and not give damn what anyone thinks. I learned it’s okay to say I’m afraid and to still do something.  I learned what it is to be truly human and compassionate because lupus can take it all away from you.  I learned humility and faith.  

I don’t yearn for my past, not at all.  Sure I wonder what if, but this life lupus introduced me to can be more than what I had before.  So it’s okay to look back, just don’t miss what’s in front of you when you do it.

Student Of Lupus

I was  a bit of a lazy student through school. Well until my Phd.  But for the majority of my education, I never really applied myself to lesson.  I attended classes, half-listened to teachers and had no problem with the readings and assignments or tests.  I was fortunate.

And then I got lupus.  And suddenly I couldn’t be a lazy student any more.  Required reading?  Not all that easy.  Assignments and tests?  Yeah it is called living and managing lupus as best I can.  No extra credit here.  

And the lessons are all day long, every day.   No breaks.   Not exactly what Im used to.  But then you don’t always get to choose.

Apparently having a chronic illness like luous means you are required to be engaged, actively participating in the lessons.  Don’t  worry, they aren’t afraid to repeat the lesson until you get it.  And even then, sometimes after you have mastered the matieral, they just make you do the lesson again.  Of course like any good teacher, lupus  never presents the lessons the same way each time.  Things get switched up and such. 

None of this is what I wanted, but it has taught me to be a better student, to be more appreciative of things.  And it’s kept me humble in more ways than I needed.  So I guess there is that lesson to.

Educating Lupus Style

Some people just rely on getting by with passion, trust and luck. Some people rely on getting by with support, help and hard work. And some people, well, some people rely on trust.

Prior to become very ill with lupus, I had a strange mix of things to get my through in this life. I relied on hard work, education, intellect and determination. It worked. Well sort of. Because you can only go so far when traveling against great resistance.

After lupus, well, I learned that lupus doesn’t care what your GPA was. Lupus doesn’t care what school you went to or what level of education you ended up with. Lupus doesn’t care how stubborn you are, how hard you work or how passionate you are. I know because these were the things that I had always prided myself on working with and having.

But as they say, pride goes before the fall and for me, lupus was the fall. But it isn’t all dreadful. I still have a career, still have my intellect, even if on certain days it’s like plumbing the depths of the oceans just find it. I’m still determined and passionate. But I’ve come to learn to trust people that I care about in my life. I’ve come to learn to ask for help, and even bigger for me, to accept help.

Lupus is, in some ways, a great equalizer. Lupus can, in some ways, put your life into perspective in a way you never considered. Lupus can teach you lessons you’d never learn in any school, no matter your GPA or your intelligence. Lupus can, however, teach you how to let go of things, hang on to things and find where your real priorities are.

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.