When you become stricken with any illness you naturally make changes to your routine as to what gets done and what doesn't. Like getting a cold or the flu you decide if you feel bad enough to call in sick and not going to work. Errands? nah. Stay home in bed? Camp out on the couch in front of the TV? Don't do the dishes? Somebody else take the dog out....... it all changes. Did you even know how much you did in a single day? Wasn't it nice how you felt good OR didn't feel so bad all over?
You ask yourself as you lay there in a heap.....and just when do I get to be me again? The day drags, the next one comes, slowly you get over whatever virus you picked up from a friend or the office or the grocery store.
Now imagine just getting worse. Imagine every symptom increasing and new ones beginning. The doctor that you always felt pretty good about looks at you like you are such a faker. We won't even mention the nurse rolling her eyes as she leaves the room. How could you have ALL these symptoms? He sends you off to a specialist.
For me that was the best thing my primary care doctor did for me. He knew I was in territory that was beyond his scope of testing. He had an idea that I might have Lyme disease and passed me off to who I believe to be the smartest Doctor I will ever encounter. And when even he couldn't come up with a clear diagnosis he sent me packing into the KU Medical Center and yet agreed to be my primary care doctor because he had interned with the KU Med center doctor that was now treating me. This was the luck that got me way further down the path to leveling out my illness. I had two docs that actually knew how to communicate to each other. It was the best security blanket I have ever had!
As I got better and was given a diagnosis, which is a mental relief beyond all my fears to know what illness I was fighting, I settled into a life of constant change. Lupus changes inside you and sometimes takes off into a new direction. But, after this first flare -as it is called in Lupus, I was different in my viewpoint of the world and what was important to me. My priorities had been changed. This is quite common in people who have been through a serious illness, say cancer or an accident. The act of being so debilitated gives the patient a new perspective to live by. And it did for me too. When at the worst of my first Lupus attack if I had just a few minutes in the day to do 'something' I didn't clean house. And I was a Felix Unger from way back!( The Odd couple show in the 60s) Well, having two kids brought me down a few notches, but I always liked orderly and clean in my life. Instead I would go out to my Koi fish pond I had built a few years earlier and sit. Listen to the water bubbling. Heavenly sound. Watch my fish, pet them even. Feed them... admire the beauty of the plants I was tending. I just enjoyed my life in that moment. Lupus gave me a real special gift. I learned to live in the moment.
I remember when I was hosteling in Hawaii for three weeks I stayed at the Wood Valley Dali Lama Buddhist temple of Nechung Dorje Drayang Ling on the Big Island. Before I was to leave I went up to the house the last evening where I could do some laundry and the two monks in charge of the temple invited me into have some dinner with them. We had a great conversation. We had spoken earlier in my three day visit there and they knew I had Lupus and that I was looking for a healthier place to live. Kansas has an environmental trigger that sets off my Lupus. My really smart doctor has twice said to me that I will have a longer healthier life outside if Kansas. Well, that did get my attention.
The food for dinner was absolutely the best I had ever eaten in my life. Perhaps it was blessed? But I explained to them how lucky I was. That got their attention. If not for having gone through the ordeal I did in my first flare I would have never been able to change my mindset to the perspective I now have. So many things changed in this new outlook, this new vision I saw of me in this world. Loosing my health was so sad. I gained a new love for time and how we use it. I learned that many people in my life really are not very nice no matter how they present themselves and to recognize the ones that are just good souls.
I remembered how much I loved nature. I learned how to see life and feel it. It became apparent to me how much we just waste and are so unconnected to enjoying the simplest things as we just walk through our days.
Luckily for me I can still tap into this. I can be feeling like crap or frustrated or angry or sleepy and I still stop dead in my tracks and notice the most wonderful little things-- hearing chimes or the light of a sun ray or the texture of a tree trunk.
palm tree photo
well, this sounds all hokey, for real.
But it does come out in my artwork! At least I think so. And so some have told me. I try to show a softness to my images. I want to capture in my paintings that first feeling as when you look at something and it snags a hold of you and takes your attention. It isn't so consciously that I do this, I rather 'feel it' as I paint. Maybe I am tapping into that energy aura beauty of the world. I know I have no pain when I am painting or at least I should say that I have no connection to my pain, I have just the focus on my work.
simple watercolor titled Aura of the Flower
That is why maybe, if you have Lupus it would be good to find that thing that you connect to--- are passionate about as they say-- and prioritize it into your life.
palm shadows on steps photo