Tears of a Butterfly

In my last article, I spoke about the Official Lupie Duty, which is constant Lupus awareness. Lupus awareness not only speaks to going out and giving others information about Lupus. It means sharing our story with the world - our entire story.

It means letting go of selfish pride and opening up. This may be hard and it may be a gradual change but the most important thing to remember is that butterflies can never fly with their wings closed.

As Lupies, we go through some very emotional and personal things that we feel we should keep to ourselves. We often feel that maybe we are alone in these experiences until someone shares these same experiences with us. I realise that this holding it all inside is not what living a purposeful life is about.

I was very private with personal information but someone very important and inspirational, my very own Lupus mom, taught me that sometimes I have to put pride aside in order to help my fellow Lupies. If I can help at least one person, living a life with Lupus has purpose and meaning (Thank you Julia!). The doctors are there to help us the only what they know how. We have to use what we have to help each other: ourselves.

This butterfly has decided to spread her wings…

I cannot speak for other Lupies but my confession is that I run from my tears. I go out of my way to hold those tears within my eyelids. I surround myself with persons who make me laugh, I max out my time so that I always have something to do and no time to reflect, I use art, get lost in a book or my favourite, I transform all the hurt into anger…and hell knows not the fury of a woman with Lupus.

The fear in crying does not arise from the possibility of receiving pity and it is not totally accountable to pride. Its just that sometimes I feel like if that first tear falls, it may open the floodgates and I may not be able to stop crying. Even so, the tears fall anyway, whether in drizzles or thunderstorms.

Sometimes the realities of Lupus ambush me at rather inconvenient times and it gets so overwhelming I cannot stop the tears from trickling down my cheeks. These are the little drizzles and they rarely occur. They happen in the bus or taxi, when I’m walking by myself in a crowd or in the computer lab doing some work. There is no concern for others as everybody is minding his own business and the few who might notice don’t have the guts or care enough to say something. This is to my advantage.

The thunderstorms occur even less than the drizzles. I hold everything inside then something insignificant happens that pushes me over the edge: The pin that burst my balloon filled with water. I go in my room, lock out the world and let it all out. I cry until my pillows are soaked, until my eyes are swollen and my head is pounding… Then I sleep it off so no one will notice in the morning.

So many things are captured in those tears: the loss of a normal life and health, the wish that things were different and easier, the feeling of solitude, confusion, frustration, helplessness. The point is that keeping all of that and much more inside cannot be healthy.

We hear it many times that crying does not symbolise weakness but how many of us actually believe that? I don’t but it is true. To go through Lupus with a positive attitude most times (not all, since we all have our moments), is in itself, the definition of strength.

However, being strong does not mean not being true to our loved ones and ourselves. It does not mean hiding and suppressing the part of us that hurts and aches emotionally.

Tears can be the only way to let out the things we hold inside that cannot be expressed through action or words, the feelings we cannot name or understand. Love does not rely on the perfection. If we hide our tears form the persons that love us, we are robbing them of the opportunity to love us in our entirety: the happy, the sad, the in between. How will we ever know what it feels like for our tears to be wiped be someone if we never allow them to fall?

It is good to be perky and to maintain a positive attitude towards Lupus. However, let us all remember to be true. Whether we cry frequently, once a year, in the open, all alone, let us remember that it is okay to cry because our tears are apart of us, not who we are.

“Perhaps our eyes need to be washed by our tears once in a while, so that we can see life with a clearer view again.”- Alex Tan

© Shoyea-Gaye Grant
Jamaica,
West Indies.


first published in The Lupus Magazine by Dirty Dog Media + Publishing