We live our lives connected to our purpose, whatever that may be. Purpose drives us, propelling every detail of life.

Repurposing is a term affiliated with objects, belongings, or things. Not often associated with a life or a person. Yet here we are, three letters that shatter our purpose… ALS.

What does one do when the life you planned comes to a grinding halt, emotionally, and for some, literally unable to move, physically? No longer able to move forward, what purpose can one have in life, if locked in their body?

I hope you will give me an opportunity to share how I have repurposed my life, now that I am living with ALS - a repurposing that gives me hope.

“Hi, I’m Juan and I have ALS.”

I, too, believed my life was over the moment I heard the doctor say, “You have ALS.” I was aware of ALS and what it entailed due to my profession in the US Air Force as a medic. Yes, I am a veteran, and yes, I was shocked to learn veterans are twice as likely to develop this deadly disease than the general population.

My wife, Meg, and I have four children, so delivering this news was heartbreaking. Then came the task of informing family and friends; tears were often the aftermath of such conversations. Six months after my diagnosis I quit working, medically retired at age 49. I felt my purpose had been stolen, and I mourned the loss.

I experienced all the typical emotions associated with coming to terms with my own mortality. Optimist that I am, I waded deep into my personal murky mental waters. I remained anchored to being a husband and father - that was still my purpose, even with a body that was betraying me daily. I still had a purpose. For many, this purpose is enough, and rightly so. There should be no pressure to live beyond anyone’s expectations, other than your own and that of your loved ones.

If you choose to, like I did, you can also find a new purpose and a renewed sense of meaning for your life. Initially, as previously stated, I feared my progression, but a chance meeting of three individuals changed my whole frame of mind. They helped me overcome my hopeless mindset and change it to one of unstoppable hope!

The late Dr. W. Root: Although having lost the ability to speak, he continued to see his patients as a psychiatrist. He taught me that ALS doesn’t have to stop you from working, or stop doing what you love, if you implement appropriate accommodations.

The late J. T. Inocencio: I met JT and his wife in DC at an advocacy conference. His motto was “Attack Life Smiling,” and he lived that. He taught me that life doesn’t have to end with ALS. Also to focus on what you do have, not what you have lost. Not to mention he had a wicked sense of humor.

Dr. Shelly Hoover: I also met Shelly in DC, at the same conference. It wasn’t until later that we reconnected through our advocacy work. Smart and doggedly persistent, she has taught me that “no” is not an acceptable answer in relation to ALS care, services and support. Additionally, I learned from her that helping others is extremely fulfilling. I’ve come to realize how much joy it gives me.

Meg and I have encountered these and so many inspiring individuals over the last eight years, both during our advocacy efforts and during our travels in Big Blue, our RV. Before ALS, I would never voluntarily speak in public – I was, yes ME, a consummate introvert. I now speak in front of hundreds of people regularly. I have, in fact, re-purposed my life in drastic ways.

ALS did not do this for me, I chose my new purpose, but ALS contributed to this greatly. In essence, ALS stripped me of many fears I imposed on myself. ALS woke a need to share my life through writing. This has led to experiencing profound revelations about myself and the ALS community. As I shared my writing through social media outlets, the feedback I received reflected a community desperate to be understood. Not just an understanding of the disease, but also of the suffering and the sacrifice of the family.

I recall a comment from a former colleague: “My mother passed of ALS, and what you write has given me a glimpse into what she experienced. I had no idea what she went through.”

First, I never knew his mother had ALS; this revelation has happened time and time again. Second, it made me sad to know how lonely it must have been for his mother, and how painful for him. This knowledge has compelled me to continue writing.

Not being a trained writer, I commit many misspellings and grammatical errors in the process. At one point I considered publishing my writing and titling it (SIC, a play on words, a way to excuse my errors, but also meaning “sick” as in dying. I eventually decided it stank of being lazy and amateurish, and so scratched it.

Writing has given me an outlet for the energy I can’t physically expend, due to my progressive loss of function. In my writing I find balance in my life with ALS. This balance gives me hope, and in some small part I think it provides a bit of hope for others. ALS is extremely challenging in countless ways, devastating to everyone that it touches. It is considered one of the most hopeless diseases in the world, with no viable treatments and no cure, at least not yet. So, how is it that I can find hope in the hopeless, purpose with a terminal condition?

I don’t have the answer, or at least an answer for you. I do know what has helped me, though. Taking the time to allow myself and my family the freedom to feel everything. Every emotion, fear and soul-crushing thought is valid. I have found that by doing this you, your family, friends, and acquaintances can move past the pain and enjoy life. With ALS, the phrase, “easier said than done,” is a concrete obstacle, one that requires chipping away daily, a steely attitude and outlook. Every strike at the concrete allows hope to seep through the cracks. Any amount of hope has the potential to warm your soul.

A warm soul, touched by hope has the capacity to warm others; all it takes is a brief touch. Our hearts are connected by this brief touch, and shared hearts can carry great burdens.

by Juan Reyes

Juan A. Reyes, is an ardent advocate for those suffering from Amyotrophic Lateral Sclerosis (ALS), having been diagnosed Oct. of 2015. Juan served 21 years in the United States Air Force as an Independent Duty Medical Technician and Clinic Superintendent.

Post retirement Juan held a position with Battelle Memorial Institute as a defense contractor. As an Emergency Medical Disaster Response Manager, for 13 Air Force Hospitals and Clinics. This was followed by serving as the Executive Director for the San Antonio Texas Salvation Army Area Command; responsible for execution of all services delivered to the entire community of San Antonio and surrounding area.

Currently Juan serves on the board of directors: I Am ALS (IAA), Texas Chapter of The Paralyzed Veterans of America (PVA). Focused on improving services, research and quality of life for ALS patients/veterans. Juan has shared insights with medical students and other healthcare professionals, enhancing understanding of ALS patient needs. His efforts have also taken him to our nation’s capital engaging elected officials on behalf of patients.

As a Patient Mentor Juan aids newly diagnosed patients navigate this devastating diagnosis. Juan actively serves on committees locally and nationally to include: I Am ALS, NEALS Consortium and the ALS/MND International Alliance. Juan resides with his wife Meg and h their four children, in Castroville, Texas.

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