Juan Reyes and his wife Meg attended the ALS Association Advocacy Conference in Washington, D.C. this May.
My name is Juan Reyes, and I live with ALS. I was diagnosed in October 2015, but in hindsight, I started showing symptoms in late 2013. What began as slight weakness in my left hand grip and thumb has progressed to severe weakness in all extremities and includes difficulty walking and loss of balance. I now use a motorized wheelchair to get around, and many facets of my life have changed because of ALS. The big question, of course, is “Why me?” and “How did I get it?”
Unfortunately we don’t know, and probably won’t know anytime soon. However, I discovered that military personnel are twice as likely to get it. I served in the Air Force as a medic for 21 years in various locations: Africa, Greece, UK, Germany, and Saudi Arabia, and I loved every minute of my career. After a five-year stint as a defense contractor, I transitioned to the nonprofit arena as the Executive Director for San Antonio Area Command of the Salvation Army, from which I permanently retired in March this year.
ALS has limited my ability to drive, type, speak, stand, and walk. I intended to continue working as long as possible, but after learning that I would have to wait five months for social security benefits, I decided I didn’t want to strain my body, especially when I was already limited in my remaining time.
Twenty seven years ago, I married my high school sweetheart, Meg. We have four children between 10 and 18. In 2012, we adopted the three youngest – all siblings – and this disease threatens my time with them. Meg and I have put so much time and effort into creating our family, and I always cherish the time I have left with them. I regret that I won’t be able to teach our three youngest children the skills I bestowed on our oldest. Knowing that our children will lose me as part of their stability and safety net crushes me. I wanted to be here to help raise them and to show them that there is a better life than what they came from.
ALS has stolen much of my “manhood.” Simple things like turning a screwdriver or opening a water bottle are no longer possible. Eating is exhausting. Imagine putting elastic bands with 20-pound weights around your wrists and having to lift them just to eat. Personal hygiene such as brushing my hair and teeth, putting on socks, buttoning my clothes, going to the restroom are already difficult, and we aren’t even at the most trying time.
As a veteran, I am blessed to have the Veteran’s Administration and their resources to make my quality of life manageable. It breaks Meg’s and my heart to know there are countless people with ALS who can’t receive these benefits because they’re not veterans. We cannot fathom how they cope with having to fight for these benefits or pass before any form of compensation is finalized.
From the onset of my diagnosis, the local ALS Association Texas Chapter has been a godsend. They stepped in with guidance and resources, and Meg and I quickly realized that we must get involved in supporting the ALS Association as it continues to be underfunded compared to other conditions.
Initially, we were hesitant about attending the National ALS Advocacy Conference in Washington, D.C., because we are so new to this community and weren’t sure about what we could possibly offer. I am grateful for Mark Murtaugh with the Association who convinced us to go and worked with our schedule to make it happen.
On the trip, we met so many inspiring people living with ALS, many of whom have exceeded the normal life expectancy. Talk about a blast of much needed hope! The number of attendees blew Meg and me away. We discovered that we do have a voice and that we need to use it to encourage our elected officials to support research, access to care, and disability resources, and, ultimately, to educate them about the far-reaching impact of ALS on families and caregivers.
Additionally, we learned that many researchers and supporters make a difference every day. The Texas Chapter of the ALS Association did a fantastic job coaching us and pairing us with experienced volunteer advocates. Was it worth attending? Absolutely! Would I recommend others? Definitely. Do I think all can learn from other attendees as well as provide insight? Without a doubt!
We know this disease has yet to show its true colors, but we are grateful that we have time to be a family. We have the time to make sure we cherish every day with “I LOVE YOUs,” hugs (while we can), family dinners, and trips to make memories.
I leave you with this – ALS, just like any terminal condition, forces you to slow down. I know I can’t battle ALS – ultimately, it will win. However, I don’t have to bow down to it. Being a strong military family, we will adapt and enjoy every day to the fullest, of course, with a few naps thrown in there…
Learn more about ALS Advocacy and become an advocate today.
