“2, A Reflection" Chapter 98

"Do it for your children,” Laura said when I asked her who would want to read my blog.

It was August 2022 and I was sitting in the kitchen with my wife Laura and my brother from another mother, Mike. I just finished telling them that I felt that God had spoken to me and He wanted me to tell my story. We discussed several ways to do this. At first we thought what about a book. We'd all recently read Tuesdays With Morrie, a favorite book of mine about a student and his teacher who had ALS. However, writing was hard enough for me, and the thought of an entire book was daunting. Mike suggested I do videos or a VLOG. I had already posted a lot of videos on Facebook for the events I led for The Mission Continues. Yet, even feeling confident in front of the camera, I was already losing the ability to speak. Finally, Laura thought I could do a BLOG since I was already telling my story on Facebook, and on that day the concept was born

The next day I posted on Facebook that I was looking for help to create my blog. I knew what blogs were, but needed help to create and understand what made a good one that might interest readers. That day Katie, my good friend who I met through TMC reached out and offered to help. Katie not only created the site, but she’s also my editor who makes me look good every week. Some months later, when I was looking for technical help, my niece Alanah and my friend Omar - who I also met at the same time as Katie through TMC - stepped up.  Omar hosts a must watch YouTube channel Ball&Buds, covering sports and entertainment. https://youtube.com/@ballandbuds?si=DeE1R4qYiNvJ1_BE

On 11 September 2022 I published my first post.  I ended my writing that day by saying, “Lastly, I am her for you. Yes, you may not know me now, but I promise when you do we will be friends in the end. I hope the tools found in this post help you as they do for me.” This still holds true. Every week I pray and ask for two things: please guide me to write something meaningful and to help others.

When I started writing 2 years ago, I was still sitting upright and able to type on my computer. As my ALS progressed, I was using my phone to type because I was not able to hold my head up to use a computer. As the weeks went on and my fingers started to curl, Laura glued Velcro strips to a stylist and attached it to my finger. Today I am paralyzed from my head down and use eye gaze technology to write everything. I have no intention of stopping now, and I won't until I just can’t get my words out any more.

I have invited you in to go along this journey with me because I see how important it is to show everyone what ALS looks like. My family and I keep sharing our experiences with this blog because ALS affects everyone around it. Understanding how we are all affected will hopefully prepare others for the future.

Two years in, I have some tips for anyone else considering a blog journey:

1. Understand your topic. The only thing I knew about ALS when I started blogging was that I had ALS. I share as I go and we learn together. You don’t have to be the expert of your topic as long as you care.

2. Read the fine print. I use Wix for my platform and I do like how simple it is to use. However, if you look back at previous chapters you will see about 20 posts missing pictures. Well come to find out you don’t get a lot of space on the free version. About six months ago I got a notification I used all the free space available. I thought I was just going to delete some photos on the site clipboard and free up some space, but when I did it removed them from the post too. Since I didn’t want to lose the whole blog or start over I am now a proud monthly supporter of Wix upgrading both my space and email services.

3. Have a purpose. This blog is part of my "dash." I have always felt a calling to help others. When I lost my ability to physically help others, I needed a way to help others in new and different ways. I found out quickly that my journey with ALS and this blog was doing just that. Whether I am connecting others with services, fundraising, or advocating, my ability to continue to have a purpose reinforces my dash.

Over the past two years my confidence in my writing has grown. I eventually realized that I am not trying to write a best seller, and this freed me up to having fun. Some of my favorite posts are “Poems” (Chapter 32) and “Morning Paper and A Cup Of Coffee” (Part 1 Chapter 79 and Part 2 Chapter 80). As a new writer I'd never written poetry before, but that week I felt compelled to write three, all of which resonated with caregivers. Shortly after taking some online writing classes with ALS Association’s Creative Pursuits, I was challenged to write a short story. In the short story I brought Darius - the voice I use for my Tobi Dynovox - to life, and published my first fiction on this blog. I truly enjoyed writing both of these writing styles.

One thing I did not expect as a blog writer was the pure emotional connections I have made with my readers. I have connected with PALS/CALS and new/old friends around the world. Some conversations are very deep and some are just opportunities to simply connect. In “All My Friends Are Dying“ (Chapter 87), I discuss how I have lost friends I just met to ALS. I wish I'd had more time to get to know them more, but I'm more sure than ever that people come into our lives for a reason, a season, or a lifetime, and they all serve a purpose.

In the end, I realize God didn’t give me this mission to help others , He put me on this mission to help myself. Through my blog, I have realized that I appreciate the little things more, and I want to wake up everyday in order to keep living and advocating.

Lastly, I want to thank everyone who has supported me. To my, readers your continued support and love each week humbles me. Our community continues to grow, and we now average 300 weekly readers. And to think, I started writing this in the first place for my family not believing anyone would want to read it.

To my volunteer support staff, Katie, Omar and Allanah, this blog would never be what it has become without your help editing, working on the site, tackling the CEO, and addressing other geeky stuff that my old ass doesn't understand.

To my family and friends, thank you for brainstorming ideas and allowing me to be so open and honest in a way that allows others to look into our lives. You are my Kardashian’s of ALS, but I am NOT Bruce/Caitlyn.

I look forward to many more years and new friends.

Love and Blessings.

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