"My Village" Chapter 6

It takes a village... You know the saying. And when you are diagnosed with ALS - or any other life changing event - you most definitely need a village.

Your village is made up of the people that will help you through the process - the ones you go through both the hard and good times with. I am proud to tell you about my village here and hope it inspires you to find yours.

The Angel: With a formal diagnosis and the G-Tube (PEG) pending, we met our Angel Susan - our patient advocate. Man, let me tell you, she was great. Ask her a question and she will not only find out and give you an answer, but she'll detail that answer all the way down to the bolt and screws. A week before the PEG was placed, my patient advocate was changed. Our Angel Susan had already set the standard, but she was only filling in for the Primary Patient Advocate. We were told by the primary after the surgery that we would have all the supplies we needed, but on the day of the surgery, we were still not set up at home. But off we went to get the PEG placed anyway. When we were checking out, the doctors at the operating room had nothing for us. (WARNING: I am married to a Mexican woman, don’t piss here off!) Laura went into beast mode and , not surprisingly, we left the hospital with more than was needed to get by. Although we did have to buy some Ensure for the first day. After we got home, she was on the phones. By the next day we had a week's worth of supplies, a month of supplies on the way, fired our primary patient advocate, and got our Angel back.

My Ride or Die: You have to have one in your corner and for me it’s the love of my life. No not the Dallas Cowboys, but my wife Laura. As we would call her in the ALS community, Laura is also my Caregiver (CALS). These love ones and/or professionals work the hardest and are eventually left behind. Without her, I would not be able to move through this process, and I know any other Patient with ALS (PALS) would agree. We are all supported by various organizations that are helping to fight against ALS and support the PALS, CALS, and Veterans with ALS (VALS), but the one on one care from our caregivers is critical. I met a VALS online whose wife told him she cannot do it and left him. Could you imagine? There is no way I would be able to do this without Laura. From the start she has been my rock and now she is my boulder.

Before my surgery, I told my boss I would be back to work the day after I got my PEG. Of course, he looked at me and said, “You might need more time, so take it if needed”. Well, he was right. I got my PEG placed and it was tough. I felt like I had been stabbed in the belly. Recovery took well over a week due to a small infection and Laura took care of my whiny ass better than I deserved. Now, Laura and I had no experience with a PEG before. Videos on the internet made it seem simple, but let me tell you that while hooking it up is easy, the mess it creates is what you have to worry about. I think an entire week went by before we didn’t spill something from the tube, the PEG, or the syringe. Of course I have to include a photo of that below, but let’s just say lots of mopping and laundry followed.

As the feeding got easier and my voice got worse, Laura had to now speak for me, serve as my scheduler and feeding assistant, help me dress, and tackle most other tasks that came her way. We are at the very beginning here and her dance card is filling up quick. As the ALS progresses, she will have to add nurse, driver, and pillow fluffer, while helping me get in and out of bed, shower (a perk), and eventually wipe my ass. Your ride or die has to be mentally and physically strong. When we said our vows to each other, they never went into all this detail. This is only one of many reasons I fell in love with her the first time we met. That story is a whole other blog, or as Laura likes to say a “bottle of wine story”.

Laura and I at Hamilton

PEG leak on my leg, get your mind out of the gutter.

Spiritual mentor: On some level, I have believed in God for years but have had issues with the idea of religion. When I grew up, we did not go to church, pray, or even have spiritual awareness in my home. Not atheist or anti spiritual, those things were just not present. When I join the Army, I went to church in basic training just to get away from the drill sergeants and talk to girls. Prior to meeting Laura I believed in something bugger than myself, but did not attempt to grow spiritually. Laura, however, comes from a Catholic background and a very spiritual family. Although while in the military it is very possible to go to church for any denomination, the rotating chaplains, frequent PCSs, and the realities of my job, we just never could find the right one. We went to one storefront church once that rolled a gold painted wheelbarrow down the middle of the isle saying we needed to fill it up. Another one that asked members to come up front if you needed prayer, and on that day I felt drawn, so I went up front. Then they went down the line, pushed you in the forehead, and expected you to fall down and act like you were having a seizure. The Pastor pushed on three or four members next to me who did the obligatory fall and spiritual jiggy on the floor. Then when he pushed on my head I looked at him like “dude I am not falling down and getting jiggy with no one” after he pushed on me three times, he moved on to the next victim. I turned around, walked up the isle back to where Laura was sitting, and she knew right then to get the kids up and get out of there.

There was one or two churches where we stayed a bit, but we eventually moved or lost interest. I know it was hard for Laura when you have four kids and a husband falling asleep or looking really bored in the pew. Well, fast forward many years when we end up in Springfield, VA where we met my first spiritual mentor, Julian. Only 27yo at the time, Julian is the Pastor of Christian Muscle and was starting a new concept to build healthier lives spiritually, mentally, and physically (https://www.christianmuscle.org/our-pastor). We would do a quick 15 min workout followed by a service. No suits, no pews, no golden wheelbarrows or anyone getting Jiggy on the floor unless the workout required it, but, man did he get to my heart. We were with him for two years before COVID hit. Soon after, he moved from the area and well, things happen. Although I do not go to church with him any longer, he is still one of my spiritual mentors. And even though he is younger in age, his wisdom and knowledge of God is beyond his years.

There is a church close to our home called Summit Church. Although we've driven past it for the six years we've been in Virginia and Laura and I had thought about giving it a try, COVID hit and we didn’t end up going until April 2022. Since Julian’s departure I have wanted to find another church community, so we went and I immediately felt at home. Within a week or two I got the diagnosis and man did my need for God kick in on a new level. One week they spoke about the important of Baptism, and that night I told Laura I wanted to get Baptized. At the same time, though, I felt like a hypocrite. Why do I deserve to get baptized now, only AFTER I find out I am in need of extra support? Why did I not do it when life was good? On that day, I sent a note to a good friend. Mike is a very spiritual man and has been a friend for 20+ years, but that text started our journey together as brothers in faith. He has become a very important person in my spiritual journey, but also another spiritual mentor. On Father’s Day I was baptized and Mike flew out to surprise me to watch my spiritual birth. We communicate daily and I am blessed to have him in my life.

Mike and Laura

Julian and I

ALS Mentor: Bottom line up front, find one... they are invaluable. Unlike Toast Masters or other organizations who assign you a mentor to help you, ALS is not a club. Sure, we have thousands of new members every year. If this was a club, our recruitment numbers would be off the charts. Unfortunately, no one who belongs to this one actually wants to be here, and the thought of it and what’s ahead is overwhelming.

I was gifted my mentor. Gifted, you say? Absolutely.

My unofficial niece (not by blood, but a close family friend) learned of my ALS diagnosis and immediately told me of a family member who had ALS and encouraged me to reach out. On 6 Jun 2022 I did reach out and the response I received was beautiful: “Hi, my name is Joanie. My phone number is xxx-xxx-xxxx. We’ve been going through this since 2020. If there was only one piece of advice that I could give, it’ll be do not accept that everything from this point on is ALS and is a normal progression. Well 2 pieces, you’re 100% service connected and the VA pays for all your care. Also, Medicare allows you the flexibility to have medical care outside the VA. I have a list of forms that you should submit to VA and will send it to you. But the PVA will get things approved quickly! Do not wait for your grants, equipment, home modifications because the VA is SLOW! Namaste!”

Jack pot! That one message gave me everything I needed to get started. I mentioned in my other post that your mentor will become your friend, and that is absolutely true for me. Joanie and I have not yet met in person, but we correspond several times a week. Our conversations started out with me asking a lot of questions and Joanie answering them one for one, never missing a beat. Over time, as I learned things along the way, I shared those takeaways with her and that grew into a beautiful friendship. She even asked me to rep ALS at her daughters bake shop grand opening. I don’t need to meet her in person to know she only needs to ask and I will say yes. You see Joanie is a CALS and her patient is a Veteran like myself with ALS (VALS). Joanie knows exactly what I need and God gifted her to me as my mentor. Eventually, ALS takes all of its members and the only ones left are the CALS and families. I pray that once we are gone, the relationship between Joanie and Laura will continue to grow.

Nothing Bunt Cakes Grand Opening with ALS.Org rep Bridget

Friends and loved ones: Last but not least, but My Village Includes You. Every PALS, VALS, CALS need their Friends and loved ones. Laura and I have had so many of you reach out to us since I started my ALS journey, including some contacts with whom I haven’t spoken in many years. If at the end of my ALS walk the only thing I accomplished was to reconnect with old friends and made new ones, well, ‘winner, winner chicken dinner“. I am so blessed to have new and old friends and my ALS team, there is no way my cup doesn’t runneth over. I love connecting and hearing your stories as well, so keep them coming.

My village is strong and without you all, I would not be who I am today. As my ALS Mentor Joanie reminds me, “Iron sharpens Iron," and she is absolutely right.