A Reminder

I would like everyone to know that I am a 28 year old grown woman who used to have her own apartment on the top floor of a beautiful house, in the coolest, hippest neighbourhood in the city, who had her own car and paid her bills and was in charge of the general operations of an organization that works with almost 500 youth and their families a year from across the province.  I am the woman who backpacked across Switzerland and the South of France all by herself, who washed her own clothes and cooked her own meals when she had time, the woman who could improvise a speech on a moment’s notice and facilitate training sessions from memory.  I am the woman who took care of her house plants and volunteered and directed theatre productions.  The one who tried to be a good girlfriend, who tried to visit with her parents at least once a week and made sure to spend time with her friends.  I am the woman who did all that with Lupus.  I am that 28 year old woman.  

I am not this person.  This person who is back in her childhood bedroom for the second time of her adult life.  This person who just leased a new car, but rides in the back seat behind her aging and retired parents.  This person who trips over her speech when reaching her two hour limit out in public, this stranger who looks up at me with a face and body I don’t recognize and who does and says things that make no sense and embarrass those who she cares about the most.  This person who isn’t in any condition to be a suitable role model for anyone, much less 500 children and the young university staff that work with them.  This person who can’t keep it together long enough to toast her own bread or remember to take her pills or get out of her pyjamas or pay her bills on time.  This person who cries and yells and laughs and screams and runs around in circles pumping her arms like a lunatic and repeats it all over and over again every hour every day, who yells at her father for asking a question, who yelled at her mother in the crowded foyer of a movie theatre.  This person is not me.  IT IS NOT ME.

I just need you to know that.  I just need you to remember that.  

… I need you to remind me.

4 thoughts on “A Reminder

  1. i will remind you every minute i can that you are that person, still are, and always will be. Think of our friend Samuel Beckett’s brilliant thought “to have been always what I am, and yet so changed from what I was. I am the one…I say, the one, then the other! Now the one, then the other. And no difference in it anywhere”

    so just remember – when we do things, the real us is in there, itching to come out and smack the silly us on the forehead. But we wouldn’t be who we are (lovely, tempestuous, gemini intellectuals) if we didn’t go through phases of “difference” ….we wouldn’t get to be as brilliant as we are. :)


    • Oh, how could I forget that you are a Gemini too? Or Beckett? Thank you, my fellow Gemini Warrior. I will rejoin you in the real world soon, my dear…


  2. You my dear ARE still a role model…. the role may have changed a bit, but you are a role model to those living with chronic illnesses (mental, physical and emotional), to young people all over the world that no matter what never give up and to the medical community that you will not lay down and die, you will not give up in the face of lupus and neither should they, AND most importantly you are role model to me and a lot of your friends. You may have lost the other things but you HAVE NOT lost that!!!!!!!!! With you strength and dedications the others will come back, one by one, slowly and surely.


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