when they tell me memento mori

A reflection on this phrase in relation to my chronic illness.

Every time I look down 
at my translucent skin
I am reminded of my mortality.

In church, there was a saying:
memento mori, remember your death.
It comes easy to me.

When the infection kept coming back. 
When the ER doctor read my QT interval.
When the MRI showed vascular abnormalities.
I remember that life on earth is fleeting.

In my twenties, I’ve been forced to come to terms with mortality and steadily
prepare for the end.

My immune system is very weak.
This is why I avoid crowds.
This is why I don’t dine indoors.
This is why I cry for hours after someone purposely coughs on my face.
This is why I plead for masks in healthcare. 

I’m not afraid of death, no.
What I am afraid of is becoming so sick, that I am confined to a bed (much more than I am already), or to the hospital, on machines for the rest of my life, with my husband unable to work because he has to care for me at every moment,
without an income,
without a support system.

I am afraid of stripping him of any joy by becoming an even heavier burden on him.
He doesn’t feel this way. He loves me faithfully, gently, and selflessly and has chosen to love me for the rest of his life. He’s my joy and I am his.

But I know I’m a burden because that’s the nature of this illness. The daily pain. The unpredictable flares. The inability to care for myself.

Society treats disabled people like they are expendable. Our church left us in the midst of my illness. Others we know have literally called me a burden, and said that I’m selfish, paranoid, and that I’m ruining my husband’s life. Words that live forever in my entire being (and in my text messages).

I never chose to be sick.
I never chose to be born with this condition.
I never asked for this to happen.

So death? I’ll welcome death when God says it’s my time and
I so badly wish that people would understand this.

When churchgoers tell me I’m “living in fear”
and to memento mori, or remember my death,
I wonder how much more I can possibly do it.