Death and Curtains

Posted Thursday November 12, 2015 by Melissa


I have a lot of Death in my life.

And some really cute curtains.

But it’s Death that lingers like the uninvited guest waiting to sneak a nibble from your scrumptious and carefully displayed buffet of Life.

I am HerIn the world of progressive rare diseases, Death, and it’s shadow, are our constant companions.

But while Death lingers, and sometimes steals the show entirely, Life also sits with us.


Joyous Life. Amazing Life. Miraculous Life.


And sometimes just mundane Life.


Sitting in the same room, in the chair right next to… Death.

Six years ago, I was lucky enough to find a friend to sit in that room with me. Wedging our two chairs between Life and Death. Our boys were diagnosed just months apart.

And since then, others have joined our little room.

At first, they are scared to sit down, seeing Death sitting right next to me.

But then, they see that we’re still laughing (and sometimes crying).

And we’re decorating the room with nice curtains. And sometimes we band together and shoo Death away with a broom.

But he returns.


We breathe deeply of Life. We link arms with her. Run in circles with her.

Whisper quiet thoughts and sing loud melodies with her.


Does it make some uncomfortable that I sit next to Death and still hang curtains, bubbling about how beautiful they are and what great texture they add to the room?




But Life really enjoys the curtains. And the conversation.




Side note: I just ordered fantastic 120×100 burlap curtains from Etsy, at the suggestion of my tele-decorator, another MPS mom.






Don’t forget to watch and share Project Alive – especially our new celebrity mashup video at





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