“Your test is negative.”…
Hearing these words, my husband and I just clung to each other and cried.
There are not enough words to express the barrage of emotions and thoughts that hit in that moment. Overwhelming relief. Unspeakable gratitude. Praise for the Lord’s mercy. Fear for those still at risk in my family. Guilt that I will not be the one bearing the disease burden. Worry that the test was a false negative. Some of these thoughts are completely ridiculous; but they are the reality of thoughts that must be contended with in the face of a genetic brain disease.
I immediately felt a huge burden lifted from my shoulders – for myself, for my husband, for my kids. Shortly after, though, another burden settled. It’s a different burden, but it seems equally heavy. Statistically speaking, we have not seen the last of this disease in my extended family. Literally speaking, I see this disease devastating families every single day.
This is what I know. The fight against this disease is not over. Now possessing a negative test result, I can recalibrate and re-focus. My attention and energy are no longer about me and my risk. I can engage fully in the support, care, and advocacy of others. One friend put it beautifully, in a way that touched my heart and really spoke strength to my soul. She said, “God has a path for you and needs you fighting fit to advocate for your family and the ALSP community.” These words speak such truth to me, and this is my battle cry. I will fight like a lion for all at risk for and living with ALSP. I will fight for wider understanding. I will fight for better care. I will fight for viable treatments. I will fight for a cure!