This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

A letter from the mother of This Lupus Life

6 Comments

As Jessie is awash with exams and health concerns, the upkeep of writing turns to her mother. 


Our Jessie,

As Michael J Fox once said “A funny thing happened on my way to the future,” well maybe that happens to many of us.  You know, that old naive presumption that life will tick along, pretty much as you as expect it to, barring the occasional bump along the way.  Plus that other naive thought that, if things do turn pear shaped, with a bit of wisdom and effort things will be able to get sorted and we’ll all be back on track ASAP.

As with most parents, I think we are prepared to do almost anything to protect our family from preventable pain. There is a dreadful feeling of deep distress knowing that your own sweet child is experiencing pain, discomfort and the fear of the unknown and the unpredictability of symptoms.

With the realisation that life just can’t be manipulated and controlled comes great opportunity for personal growth (This is what I keep telling myself!)  The truth is it’s hard going, climbing, climbing, listening, listening, supporting, supporting, hoping, hoping.

There is always someone worse off, we know that, they know that, we feel for them and theirs too.

Our inspiration comes from Jessie, “How did she learn to be so strong?” I often wonder. No matter how strong the headwind, she keeps forging forward, trying to fly!

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

6 thoughts on “A letter from the mother of This Lupus Life

  1. Beautifully written post. Jessie is lucky to have someone in her life who is so supportive.

    Liked by 1 person

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