I was diagnosed with ALS at only 26 years old — back when I was a caregiver for my mother, who also has ALS. Until then, it never crossed my mind that I would get this disease. I felt like our family had gone through so much already, that it would be so unfair, and impossible, for me to also get this disease. You see, we live with familial ALS. Which means, for us, my diagnosis marks three generations in a row with ALS.
Did you know I was a photographer before I was diagnosed with ALS? For a time after my diagnosis, I almost forgot myself, having given up photography entirely when ALS first came into my life.
Then one morning, I cried like a baby after I visited my old broken photography website. It had been more than a year since I had done a shoot, picked up my trusty camera. I missed my creative outlet so much. But, instead of being depressed, I mustered up my creative freedom, inner strength, ALS resolve and challenged myself to use my camera again. Fact is, even with ALS, I still had that drive to become a better artist; despite my increasing physical limitations. I knew it wasn’t going to be easy, but I knew the rewards would be worth it.
With photography, I’d find a way to get my life back. So, after my diagnosis, a tough prognosis, after the Ice Bucket Challenge, I choose to evolve with my ALS circumstances and find creative solutions to overcome my progressive limitations.
I’ve since hacked Frankie (my camera/wheelchair combo, it’s short for Frankenstein, lol). And to this day, I continue my passion for photography. I aim my lens at the mistakenly overlooked, even if I can no longer physically hold the camera … embracing and encouraging vulnerability as a means of solidarity.
Photography helps me share my ALS story; and others, too. It’s critical we continue to shine a light on this disease, so no other family has to go through what mine is facing. The pop culture spotlight of the Challenge five years ago, needs to live on and truly impact people’s lives.
I feel like I will figure out a way to take pictures no matter what stage of my disease I’m in. I’m appreciating this now because I know later on I may not be able to do it. It makes it bittersweet…bittersweet, but it makes you focus your passion. It makes you want to cry every day. For the beautiful moments and the hard moments.
I feel like I could really make a difference, sitting in my chair, and doing what I love, capturing life in all of its many forms, with and without ALS. And that’s frickin’ cool.
One thing I’ve learned in the years since my diagnosis, in the five years since the infamous Ice Bucket Challenge:
I have ALS. ALS doesn’t have me.