Written by Lea Jabre

I think most of you know me as Bent Not Broken; as the advocate who collaborated with RARE Youth Revolution last year a while recovering from septic shock—publishing two articles If you are not dancing something is wrongand What is pain?Also, someone who realised not long ago that I would never walk down stairs unaided and that day also realised I had never lived my life in the present moment! Wow, as I write these words I almost feel like no one will be able to digest the amount of information I am sharing and the feelings that are intertwined with it all… Almost a year later I need to share more!

If I told you that on the 22^nd of January in Baltimore, having seen all my doctors to review my treatment plans and apply them back home… I chocked on a piece of meat resulting in throat spasms, which led to three people having to perform abdominal thrusts—a first-aid method for choking…. Wait for it… I ended up having a pulmonary cardiac arrest. Yet I am here—recovering with six broken ribs and a displaced ribcage.

In 11 months, my body has gone through hell and back and although I am slightly beaten down today in terms of morale, the first thing I was able to share with anyone was ‘yes, I kept saying I loved life but despite it all I had to acknowledge that life loved me’. Life wants me here! In fact, my positive attitude proved to be right, I survived, and I am a miracle.

I wanted to share this intense moment with everyone because I believe life does want us all here, despite our challenges in the rare disease community. Hold on to this beautiful statement because I know how hard life is. I know you may not believe it, but let’s embrace it and try to hold on to it to keep fighting our battles.

I know that for me, this will be my new motto not just for this year but forever!

Life wants me here—so life here I am—determined to keep raising awareness and fighting hard.

---