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August 10, 2017

Sometimes Faking It Won’t Result In Making The End Result

I spend a good portion of my time and energy pretending to be something I’m not.  I try to be like a healthy person and I’m not.  News flash, no matter how many times I fake it I will never make myself into being healthy.

I know dear readers we have had this type of conversation before, and if you are fortunate enough to healthy you may not get this.  Today while having a conversation with a friend in a restaurant, our waitress decided to offer my friend, and inadvertently me, this lovely gem of advice that if you fake it till you make it anything is possible.  This includes dealing with chronic illness according to this waitress who clearly has a medical degree as well as working in the restaurant.

So if one fakes being well one will simply become well according to her theory.  Believe you me, if it were this simply there would thousands of people with chronic illnesses and serious conditions on this band wagon.

Lim not sure why people who know nothing about me or my condition think they have the right to offer me unsolicited advice on what to do to get back to normal.  It is a bit like this:  let’s say you invented a widget machine; it is your pride and joy, you live for this machine.  Now I come along knowing nothing about widgets or machines, but I tell you what you need to do to make it work better.  You’d laugh at me, throw me out of your building and have a great story to tell.

With chronic illnesses like lupus I’m on the one with the widget machine and some stranger comes over to me and says things like:  it’s all in how you view things, eat a healthy diet and avoid X, or have you tried Y it worked for my aunt when she had a cold. When I try to tell the stranger to get out of my shop the stranger gets offended and makes a comment about me not trying to get well or wanting pity.

So here’s the thing, just because I have lupus it doesn’t give people a free license to offer unsolicited advice.

August 3, 2017

Saints And Sanity

Beloved is a man with the patience of the Saint, or close to it.  He has to be in order to live with me.  I can’t even tolerate my stubbornness which leads to insane delays that lead me back to square one  sometimes.  But he just smiles and waits while I sort it out and somehow avoids the whole I told you so bit.

He claims he really isn’t all that goods with this stuff either, just has figured out how to fake things better than some other people. Of course he also says that living with someone with a chronic illness like lupus has taught him to encourage slow time.  He simply savours the moments as best he can.

Beloved has the grace of someone who is a saint.  He has the grace to allow me to stubborn my way through things.  He is gracious with me, generous it’s time and encouragement when t might be easier to just don’t on his own.  His grace allows me to admit defeat or not even starting something.

But he isn’t, a saint that is.  At least not according to the religious experts. That’s okay thought because in my eyes he is a saint, my saint.  He puts the sane in sanity in this life with lupus.

July 18, 2017

On Getting To Numb or A Walk I’m Not Sure I Will Take

I met a man once who said the key to a fulfilled life was to have no expectations or desires from anyone or anything.  He said the art to meaning was to simply be with whatever the moment happened to present.  He didn’t come by this through hours of meditation, prayer or contemplation.  Instead he found the key to this through walking.

I haven’t thought about him in a while, but while walking with the four-footed in the squall that felt more like autumn than summer, he popped back into my head.  It may be that I thought of him because I had put on shoes with very thin soles through which I could feel every small pebble as if I weren’t wearing shoes.  After all he told me that if you walk far enough and long enough your feet won’t hurt anymore because they will be numb.  If you walk enough hills, uneven and hard ground eventually the ache in your calves drift away for they too a numb.  And the heaviness in your legs?  You guessed it, your legs go numb.

The art to walking until you are numb, he assured me was to start when there was a cool wind whipping small burst of cold rain across your path.  This way you’d soon enough be wet and cold to the point where you couldn’t feel either any more.  He walked in the dark so his eyes has less to be distracted by and let the sun’s heat burn him until he could no longer feel it.

I guess if you experienced nature in a way that was more tactile you’d soon find yourself no longer distracted by the colours, smells and touch.  After you were no longer distracted you could simply be with the beauty of nature as it was with no expectations or desires to hold or tame it.

He reckoned that the further you walked, especially with heavy steps, the quicker you’d fix your broken heart.  Not that it would heal, rather it would shatter and grind the broken pieces to dust.  Once it was dust it would eventually shake from your being with each step you took.

If you did his right, when you stopped walking you’d still be numb.  You wouldn’t know what to do with yourself at a standstill, but you would be numb and prepared to simply be.

Now while I was wearing my thin soled shoes while walking with the four-footed one I wished to have numb feet  so as to no longer feel the sharp edge or bite of a stone.  While I admire those who simply can be in the moment with no distractions I’m not so sure I’m ready to go to that extreme.  I want to smell the freshness of spring when everything is green and unfurling.  I wish to feel the summer wind upon my face and watch the golden grasses form waves as if they were an ocean.

May 2, 2017

Purple May or Lupus Awareness Post

May is a month of mixed emotions for me.  Not that the month itself gives me mixed emotions, rather what it represents is what creates the odd mix.  You see I adore the way Spring comes so fully to life in an exuberant way.  May  is pops of colour from flowers and leaves unfurling.  Nd now we come to the mixed emotional part, the color purple.

You see friends purple to me is lupus and May is Lupus Awareness month.  This is a big deal to me,  it’s a chance to take an invisible illness and turn the spotlight on it.  It’s a way to take the hidden struggles and put a face to them.  And yes, it’s a chance to put my face to some of the struggles that I hide most of the time.  The thing is, I’m not a spotlight kind of girl, but it’s so important to find a way to cure this illness that I push myself into the light.

Lupus may be the color purple, but just as there are a million shades of purple, there are a million different ways lupus impacts your life.  Sometimes lupus is a mild lavender resting while I carry on having a typical day.  Other times lupus is a deep, dark purple full of hot passion and my typical day is lost to the turmoil.  The thing is, dear friends, lupus is not the color black.  It is not death, it is a change though.

So the next time you see a splash of purple in May please stop and consider that someone you know has lupus, including me.  And if you have questions about the illness, ask because the answer to the mystery that is lupus may be hiding within your mind.

March 5, 2017

Been A Long Time

Its been a long time since I’ve felt completely  comfortable with being here.  It’s been a long time since I’ve felt as if this place is a part of my home.  There is no one to blame for this, it’s just the way things are. 

 I struggled to find my place here, to find my own way and identity within this strange land.  What makes it harder, of course, is how Beloved settled into everything here so easily.  But then he has friends here and has done some guest lecturing at the university so I believe it made it easier for him. 

It’s been a long time coming, this sense of self within this strange city. Finding my own favorite hangouts, cafes and haunts.  Frequently I can find a sense of home or comfort within a short period of landing in a city.  Perhaps because Beloved already had his places and that’s where we went I was unable to find any sense of home or comfort here for the longest time. And this realization has also made me realize it’s been a long time since I’ve allowed myself to relax, to settle down and feel at peace. 

 I am so used to flitting here and there, perching on a branch for a short period and telling myself I’m home.  But the reality  is different.  The reality is I have been afraid of finding home and favorite places here because it might just mean settling.  And to settle means I’d be a long time before I’d head back to the place that holds my soul as a home.  

We all have at place, a space that calls us home, feels familar and embracing.  Sometimes it’s a place from our childhood, or a favorite vacation.  Sometimes it’s a place we stumble upon, perhaps on a whim.  Regardless of how we discover it, we all have these places.  And now matter how long it’s been since we last visited, or if we’ve never been there, it is home.  And home has been a long time coming, the sense of it within my stay here.

March 4, 2017

Slowly Now

I was asked to write down the first animal that came to my mind during a session I attended for work. After I wrote the down the animal on a piece of paper I was informed that it was my “spirit animal”. According to the facilitator this meant that it was the animal I was most in harmony with through my actions, thoughts and beliefs. She suggested that if we weren’t’ humans we would mostly likely be this particular animal or some variant close to it.

Now some of the people at my table apparently were more vested in this exercise than I was because they became upset at basically being told they were the animal they wrote one. Our table had the following animals: dog, cow, lion, elephant and a sloth. The ladies who wrote down dog and cow were offended and the man who said he was elephant become confused about how he would be an elephant if he were an animal. He saw himself as more of a lone wolf.

It wasn’t until after the session when I spent some time thinking on the animal that first came to my mind that I realized in a lot of ways it does represent my current life. In case you are wondering I chose the sloth.

This doesn’t mean I live in trees, or come down from the trees once a week to heed the call of nature. Nor does it mean that moss grows upon my hairy body (not that my body is hairy either). But when I compare my lifestyle now, since lupus decided to become a part of it, from what it was I can see how the sloth fits. Things happen slower for me, I move slower at times. I watch my friends dash off only to have to wait for me to catch up to them. By the time I’ve caught up, they are ready to start walking again and I haven’t had a rest. And some days all I want to do, all my body will let me do, is rest.

In some ways, as I’ve become more like a sloth as the wolf has become almost a part of me. I used to be more like a curious animal, into everything and going everywhere. I didn’t have to plan my next move because I could simply jump here or run there if it was needed. Obstacles were really just opportunities to show of my skill or at least coordination.

But in acquiring this slowdown of my life I have also been afforded an opportunity to consider what I value and expend my energy and efforts on those areas while not wasting it with frivolous and meaningless things. Now I can weigh the value of outcome against the energy, effort and time that needs to be expended and do so without worry of how people judge things. Unlike some people my age, I realize that everything has a cost to it, even something as simple as washing and conditioning my hair.

So yes I guess in some ways I am the sloth.

January 30, 2017

Never Anticipated This

I never anticipated that where I was born, what I did for a living or who I professionally associated with could result in me being unable to freely travel to countries.  Now I can’t change where I come from.  And I will be hanged if I will let anyone tell me who I can and cannot associate with.  Same goes for what I do for a living and I’m fully aware that what I do is something that a lot of people feel is unnecessary.

Perhaps if I had been born in a different country I wouldn’t feel so strongly attached to having had the freedom to choose my career. I may not even feel so strongly about keeping my career, but I was born in a country where the government did not dictate my choices.  And I was blessed to grow up with parents who didn’t tell me I couldn’t do things because of my gender or such.

I cherish my freedom to travel, to speak and to associate.  I also cherish the position I’m in that allows me to help others, to be a voice of the voiceless.  And now it is rather possible that I will have to consider which of these I value the most.  Or perhaps it’s a case of which of these is the best to continue to use for now so I can hold onto the others for when I need them.  At the same time I have to consider if it is possible that I may not be able to ever regain back that which others which to take from me.  And this time I know I’m not the only person in this situation.