This month, we honor some of our many dedicated volunteers. Today, we’re learning more about Juan Escalera. Juan is a peer mentor and very involved with many of I AM ALS’ community teams and initiatives! He also wrote this entire blog entry using eye gaze technology, which took him more than six hours to complete. Thanks for all you do, Juan!

In what roles do you currently volunteer at I AM ALS? 

• I’m a Peer Mentor for our community and attend all monthly meetings. 
• I belong to the Strength of Scribes writing team. At the moment we are giving support to other groups and trying to make others’ events a success.
• I just recently joined the support group living with ALS. I create posts for our organization for future events and news to keep the community informed. 
• I’m in training to become the first mentor that will also be a Peer Support Specialist. 
• I’m helping staff with the creation of a doctor’s event coming up at the end of May and another event coming up on April 22nd. 
  • The second event will be a collaboration between I AM ALS and the Bridging Voice Team on using AI as a possible voice alternative. I’ll be on the panel of this event. I will be demonstrating how a PALS uses this service and answers questions. I have created a post for this event. My teammates from the BV Ambassador team are posting it on different platforms.

Here are a few things I do outside of I AM ALS:

• I use my writings from the Scribes of Strength team blog. It helps me to bring awareness to life with ALS. It’s one of my advocating tools.
• I’m the moderator of the biggest ALS Facebook group, ALS – Patient and Caregivers tips for everyday living. We have over 35k members in this community. 
• You would find me most of the time in my Facebook group. I help members with questions they may have, post events from I AM ALS and Bridging Voice, and find resources that can help and share them. 
• I work with Bridging Voice. They gave me the title of BV Ambassador. We are tasked with spreading all of Bridging Voice events and services. All BV Ambassadors create their own post for events and post them up on their preferred platforms. We all get together in a group called Open Office weekly. We help people who come to our meetings with anything ACC devices related. I also help my group members with ACC device questions.
• I mentor about ten group members from around the world. The years I have lived with ALS gives many of them hope.

How has volunteering with I AM ALS changed your life or the life of your family?

Becoming an I AM ALS Volunteer has impacted my life with a positive outlook on life with ALS. With the help of my leaders, I found a sense of purpose that having Familial ALS took from me. The impact on my family has been all positive. Recently my wife started to notice all the work I have done and continue to do. She made fun of me, she said, “what, I have to make an appointment to speak with my own husband now.”

She brought tears to my eyes. She tells me that she has never been so proud of me and the hard work I’m doing. That it’s wonderful to see me helping others at all types of hours. Then she brings me to tears once again. “My love, I have been very happy to see this huge change in yourself. I wanted to tell you that I nominated you for all of the awards that your organization is giving out. I think it’s time for the world to see what I see. You make me proud to be your wife.” 

As you can read, the impact of becoming a Volunteer is priceless. The ripple effects of one decision affects the lives of many. I was so happy to hear this from my wife. I’m a very shy person so I’m not used to being the focus of anything I do. I explained to my wife that I don’t do this for any award. I just love to help and serve others. I recently started to share about what I do on my Facebook page. I kept my family in the dark about my life. 

Once my elder brother found out about all of this, he broke down. He asked me to provide him with a list of things I do. He said he wanted to nominate me for an award. So, I listed about a third of what I do. He told me that he was so proud of everything that I’m doing—that I give him hope for him and his future. So, many of my family and friends are aware of my advocacy now. 

Why did you initially decide to get involved with I AM ALS as a volunteer?

When I joined I AM ALS, I was in a dark place. I was always depressed because of all the things ALS stole from me. I have always served my community. I was a communications tech for over 15 years and a youth minister before I got sick. Also, I was a karate teacher. I was in the process of obtaining my second black belt in Okinawan Goju Ryu and on the path to become a master in Okinawan Kenpo karate. I needed to gain control of my sense of purpose once again.

I made a decision to become a Peer Mentor with I AM ALS. Around the same time, I joined my Facebook group and never looked back. After a short time getting to meet more mentors and more members in my group I could help, I was able to gain my sense of purpose back. When ALS takes everything from you, it also takes your purpose as a human being. It has to be the worst feeling of this journey. If it wasn’t for becoming a Volunteer, I don’t know where I would be right now.

What would you tell others who are facing similar circumstances about what they could gain by volunteering with I AM ALS? 

I can tell you this with the utmost happiness: becoming a volunteer was the best decision of my life. I welcome everyone in the ALS community to come join us. We are breaking down walls and taking the ALS community out of the darkness. This cannot be done alone; I encourage all of my peers and community to come share in my joy. There is no pressure to become a volunteer. You join the part of I AM ALS that best fits you and your needs.

The staff are the most incredible people I have ever met. Their positive influence has no end. They are like my wife. They see rainbows in the pure darkness of things. Truthfully, after you join and find your purpose, I don’t see anyone leaving this organization. I can only talk about a small portion of what I AM ALS does. It’s something better felt and experienced.

I started with I AM ALS a few years back as a part of the support side of I AM ALS. I AM ALS has two different parts. You have the ability to join the support side or the group side. I belong to both sides. I love and enjoy it very much. The only thing I can say to future Volunteers is just say one word. If you can manage to say “yes,” I assure you that you won’t be disappointed in your decision to become a volunteer. It’s all up to you, my dear community, to step forward. I truly hope that when you read this part, that I helped you to choose “yes, I want to join the movement.”

Any other words of advice you’d like to share?

I do have an end goal. When ALS took everything from me, it also took my legacy that I would leave my children with my karate. So, my goal is to do enough in the organization to have my name placed somewhere in our organization. I can leave a new legacy to my children and our name lives on. Having FALS leaves me in a bad position. I will pass away not knowing if they are safe. So, with all my advocating, I am laying down a platform for my children.