Faces of ALS: The Fight of My Life by Juan ReyesAugust 9, 2019
Why do I fight? I fight against ALS because I experience it every day. Since my diagnosis on Oct 14, 2015, I have been in the fight for my life. I cannot sit idly by; it is not in my nature nor my family’s.
Having served in the United States Air Force for 21 years, I have learned the art of resiliency—and so has my wife, Meg. It wasn't until after my diagnosis that I learned that Veterans are twice as likely to develop ALS than the general population. I was shocked to learn this, and it’s Why I Fight.
Since my diagnosis I have deteriorated to the point of having to use a powerchair; I am unable to bathe, dress or feed myself. ALS is an unrelenting, unforgiving disease. It takes everything from you, but it cannot take my spirit, nor my will to fight.
My symptoms began summer of 2013. They were subtle, loss of strength in my hands and tripping. It took two neurologists to diagnose and an ALS specialist to confirm my condition.
The oddest observation came from the second neurologist because he pointed to my shoes and said, “Your shoe tips are all scuffed up.” I had not noticed this inane detail. It is apparently due to foot drop, caused by the weakening of the ankles.
Fast forward six months, I am applying for disability benefits. I was dismayed to discover that there is a five-month waiting period to receive benefits and that the monthly financial burden of living with and getting care for ALS is enormous. Both can leave families at the risk of losing everything only months after diagnosis.
The financial burden put on families while they are in the fight of their lives is yet another reason Why I Fight.
It's been a rollercoaster ride of emotions for my entire family, not to mention the overwhelming amount of information to digest. The biggest lesson I have learned has been to surrender myself to the love and support that surrounds me. We live for each day and for each other.
I have also realized that it is ok to embrace the dark moments, as long as I don’t dwell there. Never forget that ALS doesn't define you.
Why do I fight? I fight for myself, my family, my friends and for everyone living with ALS. And we are not alone. I AM ALS, an organization established by patients and passionate ALS champions has quickly gained momentum, creating a tsunami of activity unheard of in the ALS community.
Recently to commemorate the 80th anniversary of Lou Gehrig's speech, for which ALS is known, I AM ALS launched the #WhyIFight Campaign. This included a video that has been viewed over 125,000 times and more than 2,000 people have shared on the #WhyIFight hashtag, telling their own stories across Twitter and Facebook.
These individual stories will break your heart, but also inspire you due to the sheer strength exhibited by patients, families, and caregivers. How do I fight? I fight by raising my diminishing voice. I fight by joining others to create a world without ALS.
Why I Fight is extremely personal to me, my family and every person affected by ALS. This disease is currently incurable; however, I feel in my soul that a breakthrough is imminent. This is Why I Fight.