I have ALS, also known as amyotrophic lateral sclerosis or Lou Gehrig’s disease. Named for the famous baseball player, it’s a neuro-degenerative disorder. But I’m not here to discuss the scientific details behind ALS. I’m here to talk about living in spite of ALS, and to give you an inside glimpse at what life is like without the ability to move, to speak, to eat or to breathe independently.
When I wake up, the first thing I see is a paid caregiver — or my beautiful wife, Chanda. There is no more waking up alone. Typically, Chanda or my caregiver asks me questions, and I indicate what is needed with blinks. One blink is “No,” two blinks, “Yes.” It’s a slow process, getting up each morning without a voice and without the ability to move.
My eyes are everything. They are my livelihood; they are communication with loved ones; they are safety; they are independence.
I use an eye-gaze communication computer device to communicate with co-workers, my caregiver and my boss. The device lets me search the internet, send emails and texts, and make phone calls. It allows me to ask for help if I need it. It helps me motivate the players of the Baltimore Ravens where I serve as Senior Adviser to Player Engagement. I have a livelihood; what a blessing.
My eyes are my communication with friends and family. They allow me to tell Chanda how much I love her after 24 years of marriage. My eyes help me stay in touch with other PALS from across the country (People living with ALS). My eyes allow me to maintain oversight (pun intended!) of Brigance Brigade Foundation, a nonprofit which helps other PALS with medical expenses not covered by insurance or other nonprofits. I can communicate with friends and family; what a blessing!
My eyes are my safety. When traveling by van or plane, or when away from my eye gaze device, it is our blinking short-hand that allows me to indicate when I need something or to note something dangerous. I can communicate my needs and stressors; what a blessing.
My eyes are my independence. While ALS has taken away much, my eyes give the ability to communicate my opinions. My eyes give me the ability to read and therefore explore any topic of my choosing, from scientific articles to sports analysis to the Bible. My eyes allow me to fly high and experience life well beyond the wheels that have taken over for my legs. I have independence of mind and imagination and the ability to think critically; what a blessing!
With a disease that takes away so much, why are the eyes still able to function for many PALS? In an article from Scientific American, written by Amy Yee in October 2014, researchers posit that eye muscles receive their “orders” from different neurons than the muscles of the body, diaphragm, etc. No matter the reason, I can’t begin to tell you how grateful I am for this retained ability that once seemed so simple: I have my eyes, which allows me to work, to dream, and to appreciate life.
I ask you to consider the simple things in your life that someone living with ALS no longer has: Wiggle your fingers. Take a deep breath. Speak to a loved one. Eat a delicious meal. Then, if you are blessed with eyesight and vision, imagine how vital your eyes are to you right now. And then imagine how vital they are to someone living with ALS.
This Global ALS Day, I challenge you to take time to enjoy life’s blessings; I’ll be right there with you.