Last month marked the 13th anniversary of the day my doctor (rheumatologist) said: “Looks like you have lupus.”

On that day, I was given 3 things:

1. My first prescription of Plaquenil

2. Paperwork to get regular blood work and urine test done

3. A brochure about Lupus

I got out of my appointment and returned to my 9-5, as if my life didn’t change.

10 years ago , I found myself down the stairs after falling a few flights, unable to lift my body off the ground. The day leading up to that moment, I was driving down to Calgary after having been invited share my spoken word poetry at my friend’s church. At that point in my lupus diagnosis, I was still trying to speak up for myself when speaking to doctors.

At this point in my diagnosis, I wanted my ‘regular’ life to go on so badly that I was underestimating what my body was going through. At this point in my Jesus-believing-and-going-to-church life, I was struggling to reconcile what church folks would tell me about my illness, how I was feeling in my body and what does it mean to follow Jesus in this body…

I used to think waiting on God meant sitting still, remaining calm after having prayed, and trying to be patient until a breakthrough came. But the last decade of praying for my health to get better has taught me something different.

I’ve never been much of a ‘cool kid’. Growing up in a predominantly English-speaking junior high school, while being a French speaker, born and raised in Haiti, only used to wearing school uniform I learned the hard way how ostracizing it can feel to be different. Awkward black girl here.

Last week, I turned 36. For the first time in a long time, I was excited. For no other reason, than I was happy to feel alive and hopeful (for real this time). In the 13 years of battling Lupus, I have become well-acquainted with the ongoing frustration of deferring and canceling both big and small goals and dreams. This has led me to reflect on my complicated relationship with joy.