Hello, my name is Eryn Blythe, I am 38 years old, and I have been diagnosed with ALS, otherwise known as Lou Gehrig’s disease. When I was first asked to tell my story today, I have to say it was a little difficult to put it in words. Where do you start telling your sad story? I guess that answer is different for everyone; however I decided to begin first with the happiness that surrounds me.
I have been blessed with a strong and loving husband, an amazing 4-year-old son and a beautiful 2-year-old daughter. I’m fortunate to be surrounded by love and support. Without that, I would not be here sharing my story with you.
When I was 6 months pregnant with my second child, I began to notice slight weakness in my left hand. I first thought it was something benign and pregnancy related. Luckily, my doctors recognized some of the symptoms, and began their diagnosis. In March 2014, one month prior to my baby being born, I was asked to come in to see my OB the following day. While waiting for the doctor, all of the lights in the building went out except for the one spotlight in our exam room. Sitting there in the almost dark, with my husband at my side, in a cold hospital gown, I was told that my baby was healthy and strong, but that I would most likely not be there to see either of my children start school, let alone finish it.
That day, was the first I’ve really heard of ALS. They gave me 3 to 5 years to live and recommended that I get my affairs in order. ALS is a specific disorder that involves the death of neurons. ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscles decreasing in size. This results in difficulty speaking, swallowing, and eventually breathing. Currently, there is no treatment or cure and the doctors only can make it easier when my body starts to fail. Quite literally ALS patients become trapped in their own body without the ability to dictate or even scratch their own nose.
I have always been a very independent woman working my way through school to complete my MBA and to build the career I have today. I have prided myself on helping others throughout my life, including volunteering for various philanthropic organizations. Before ALS, I was an avid runner, and grew up riding horses. I ate right, was active, doing what you’re supposed to do in order to live a long and healthy life. Today, I struggle with mundane daily tasks such as getting dressed and brushing my hair. I now have to ask for help to get off of the floor after playing with my children and I struggle to help them get dressed or change a diaper. Often I have found myself waiting in line behind my children to get help dressing for the day. I can’t express how hard it is to stand there half naked and realize that in many ways I am as helpless as a 3-year-old.
As a mother I have been put on the bench so to speak, as I have been reduced to observe more than interact with my beautiful children. ALS affects me every minute of every day. I can’t run away from it even when I sleep. It affects me moving in bed, needing help to walk, and every morning I have to fight to get up. I struggle lifting my arm to wave goodbye or to say hello. How am I supposed to raise my children and be a good wife if I’m not able to be there for them? My life and independence has been stolen from me.
Nonetheless, I get up every morning for my family. I fight every day to stay strong and to get the most out every day. I strive to stay happy and to appreciate every kind word, every kind deed, and to quite literally smell the roses. I get up every day to represent all those who can no longer stand, to be the voice for those who no longer have one, and to remind myself there is more than myself affected by this devastating disease. I can only hope that my contributions can help promote awareness and some day we can stop and prevent this now more than ever indiscriminate disease from stealing the lives of ourselves and loved ones.
Appreciate every moment.