living with lupus, day by day, moment by moment

Story 1:  Sharing coffee with a fellow chronically ill friend, I said that I look forward to growing old in the city.  I can imagine spending the days catching a matinee show at Lincoln Center with my husband, like those old couples I see walking around.  To which my friend responded how optimistic I am.  He could not see himself growing old. 

—- 👩👵 ?

No one can predict how we will die.  Our hope is to live happily, grow old gently and go out peacefully.  But life has many plans for us and we just never know.  We can die of a sudden freak accident, from a terminal illness or, well, from many things.  Of course, being chronically ill, I am not immune from such causes, and in fact can aid some of those causes from visiting me earlier than would be on a normal person’s  timeline.  The high risk that my illnesses put me in (e.g., thanks lupus for the additional heart risk), as well as the added risk from all the potent drugs I must take, mortality no longer becomes an exercise in the hypothetical.   


Story 2: getting ready for my mom’s 70th birthday dinner with my 4 year old son, he asks me “Mom, when you get old, you die, right?” I assume he was talking about his grandma and how sad he will be if she was gone.  I explained that none of us live forever but we are here now, and it matters how we live while we are here.  To not take it for granted.

And while thoughts of my health risk and mortality keeps me awake at night, so equally does thoughts of how my pain will only end when I am no longer living.  I quiet both of these thoughts with a reminder that my end is unknown to me.  And that I will continue to make the most of it.

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