OJ Brigance on vital with ALS: ‘my eyes are everything’
June 21, 2018 - als
I have ALS, also famous as amyotrophic parallel sclerosis or Lou Gehrig’s disease. Named for a famous ball player, it’s a neuro-degenerative disorder. But I’m not here to plead a systematic sum behind ALS. I’m here to pronounce about critical in annoy of ALS, and to give we an inside glance during what life is like though a ability to move, to speak, to eat or to breathe independently.
When we arise up, a initial thing we see is a paid caregiver — or my pleasing wife, Chanda. There is no some-more waking adult alone. Typically, Chanda or my caregiver asks me questions, and we prove what is indispensable with blinks. One blink is “No,” dual blinks, “Yes.” It’s a delayed process, removing adult any morning though a voice and though a ability to move.
My eyes are everything. They are my livelihood; they are communication with desired ones; they are safety; they are independence.
I use an eye-gaze communication mechanism device to promulgate with co-workers, my caregiver and my boss. The device lets me hunt a internet, send emails and texts, and make phone calls. It allows me to ask for assistance if we need it. It helps me motivate a players of a Baltimore Ravens where we offer as Senior Adviser to Player Engagement. we have a livelihood; what a blessing.
My eyes are my communication with friends and family. They concede me to tell Chanda how most we adore her after 24 years of marriage. My eyes assistance me stay in hold with other PALS from opposite a nation (People critical with ALS). My eyes concede me to say slip (pun intended!) of Brigance Brigade Foundation, a nonprofit that helps other PALS with medical losses not lonesome by word or other nonprofits. we can promulgate with friends and family; what a blessing!
My eyes are my safety. When roving by outpost or plane, or when divided from my eye gawk device, it is a blinking short-hand that allows me to prove when we need something or to note something dangerous. we can promulgate my needs and stressors; what a blessing.
My eyes are my independence. While ALS has taken divided much, my eyes give a ability to promulgate my opinions. My eyes give me a ability to review and therefore try any subject of my choosing, from systematic articles to sports research to a Bible. My eyes concede me to fly high and knowledge life good over a wheels that have taken over for my legs. we have autonomy of mind and imagination and a ability to cruise critically; what a blessing!
With a illness that takes divided so much, because are a eyes still means to duty for many PALS? In an essay from Scientific American, created by Amy Yee in Oct 2014, researchers predicate that eye muscles accept their “orders” from opposite neurons than a muscles of a body, diaphragm, etc. No matter a reason, we can’t start to tell we how beholden we am for this defended ability that once seemed so simple: we have my eyes, that allows me to work, to dream, and to conclude life.
I ask we to cruise a elementary things in your life that someone critical with ALS no longer has: Wiggle your fingers. Take a low breath. Speak to a desired one. Eat a tasty meal. Then, if we are sanctified with eyesight and vision, suppose how critical your eyes are to we right now. And afterwards suppose how critical they are to someone critical with ALS.
This Global ALS Day, we plea we to take time to suffer life’s blessings; I’ll be right there with you.
O.J. Brigance, former Baltimore Ravens linebacker, is co-founder of Brigance Brigade Foundation (www.brigancebrigade.org; firstname.lastname@example.org).