Who I am and why I write

by Laguna Lupie

I am a thirty four year old Filipina entrepreneur living in the province of Laguna with my husband, two children and our extended family.  I was diagnosed with systemic lupus erythematosus in December of 2012 and I had just given birth to my second son.

Being in one’s mid-thirties is still considered young and I have my whole life ahead of me, but the fact is I have a serious incurable disease and I really don’t know if I will live for the next twenty years or just until next year.  I am ok most days but sometimes I feel nothing but anger and despair. I have two boys to raise, the youngest just turned one.  There are days when I look at him and I wonder if I will see him grow up.

When I first found out about the lupus I couldn’t hold my baby without breaking down for days.  It was too painful to think I might leave him soon and I had just given birth to him. I was too terrified of the thought of leaving them without a mother before they’re ready.

They say every child begins the world anew.  I felt that way when I had my second son, like everything was fresh and wonderful and our family finally complete.  But I found out I had lupus three months after giving birth to my baby and all that was new and wonderful became a nightmare of fear and uncertainty. A new mother never thinks about dying. But it happened to me and to many others like myself I presume.  People just don’t think about it or talk about it.

I remember the exact moment, when it finally sunk in, that I had a life threatening disease and that I might die soon.  It’s hard to describe, that feeling, only that I was in a very bright room and everything looked black.  And I felt a pain, a real pain in my chest and I could hardly breathe.  I thought of my two sons and I cried.  As hard as I cried when my father died. Only this time I felt fear, a great sobbing fear of death and the unknown.

Death is always about somebody else — until it’s about you.  When you’re young, you don’t really think about it. You feel invincible.   And you have the luxury of not thinking about it yet. Well, I am still young, but I no longer have that luxury.  And I have mourned the loss of my youth and the loss of my health.

Sometimes I wonder if I will see grand kids and if I will ever reach retirement age.  Used to be I was scared of getting old, now I realize growing old is a privilege, something I now think about with longing.  I always thought I would be a great matriarch someday.  I had fantasies of becoming some grand old lola (grandma) presiding over family reunions.  Nowadays I just wish I could see my boys become men.  Yet I know I must prepare myself and them to the reality that I may also never see them grow up.  The thought hurts every day.  But I get up each morning, brave as ever, thinking and hoping I may yet live a long life.

I have come to realize that the only thing stronger than the fear of death is the hope for life.

So I clutch to this hope every morning, thinking don’t count me out just yet. I look at my baby and he smiles at me, he babbles and jumps and I feel joy.  One more day with my son and I am content.  I feel the beauty of each moment more acutely because I know time is running out for me.  I go to sleep at night wishing no new nightmares will come, I snuggle close to my first born and listen to him breathe, I kiss him and whisper to him my love. I think to myself another day with my kuya has passed and I feel fine.   And when the nightmares do come and I wake up with the blackness all around, I hold tight to my husband, my strength and my love, I feel peace and rest and find sleep again. In the morning, I wake up thinking “another day” and I am thankful.

***

What is the measure of a life?  We all derive some inner meaning from the lives we live, the causes and beliefs we dedicate ourselves to, but none of that matters because everything we stand for may in the end be just forgotten.  For who will remember but those who have loved us? And when they die, what remains?  There is nothing but history and the common humanity we share with each other.

I don’t want to pretend to any higher meaning or cause.  I merely want to tell stories.  My stories.  Of my life, of the people I know.  Those whom I love.  If I leave too early, and that seems to be a very real possibility now, I would want my sons to know of me.  Of my life and of my loves. I write this for them.  I write this to remember.  And if I am gone too soon, I write this to be with them still.  For them to know how much their mother loved them.  For them to see that life has limits but a mother’s love does not.

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