Amee’s Story

I would like to start by introducing myself, my name is Amee Shah.  I was first diagnosed with epilepsy at the age of 8 after having a seizure in the middle of the night.  After numerous tests and inconclusive results, I was put on a medication.  That medication worked very well for me for most of my childhood and well into adulthood.  I never disclosed my condition to anyone because at the time “there was no need to”.  I was “normal”, I went out with my friends, didn’t have any limitations and never really felt “different”.  I graduated with a bachelor’s degree followed by a doctorate and l am currently working full time as a health care professional.  As we started thinking about having a family, we knew we would have to switch medications.  That was a difficult period and adjustment.  I quit working for several months, until we found the right epileptologist who specializes in women’s health.  She was sent to us at the perfect time and was able to get me back on track.  I currently have 2 beautiful and thriving children.

After 35 years of living with this condition in silence, this year, I decided to speak up.  Having a more challenging time managing my symptoms I finally agreed to a 5 day EMU stay to reevaluate treatment options.  It was time to tell everyone my story and no longer hide where I was going to be for 5 days.  I needed my support system, I needed to be a good role model to my children and most of all, I finally needed to accept that I have a chronic condition that is going to have its ups and downs.

This year has been one of the most challenging years I have faced, and I could not have done it without the support of my family, friends and the community.  At the same time, ironically, it has been on the best years of my life.  I have learned so much about myself, how adaptable we as humans can be, have learned to slow down and realize we don’t always have to do everything.  It is important to honor our bodies and listen when it tells us we are pushing the limits.  These have all been integral lessons that I hope to carry on forever. I have immense gratitude for seeing what is truly important and prioritizing my health and my family.  I have allowed to give myself some grace while still allowing myself to spend time on my favorite hobbies, including working out, cooking, being outdoors and hanging out with family and friends who truly fuel my soul.  Yes, there will be hard days, but tomorrow is another day and therefore, another chance at this beautiful life we are privileged to have.

Amee S.

Kind words you would like to share with a parent or someone newly diagnosed:
Take the time you need to process it, do your research, advocate for yourself and find your support system. It’s going to be ok, you’re going to be. Honor your body for waht it can do and focus on your abilities. On your bad days, remember tomorrow is another day. Celebrate the good days! You got this, keep fighting!

Connect with Amee S:
Instagram: @behindthebindis