“56” Chapter 46

I was born into a poor family with 10 kids. No... no, wait, wrong story.

The date was 14 August. It was a cold, wet Monday morning when a screech broke the silence in the house. "Jim, IIIITTTTT’S TIME!" (The Buff heard it here first) my mom said. Later that day, the sun broke through the skies, warming the earth and I was born. Then the doctor turned and stated clearly that I broke the mold. Side note - 16 years later on 14 October at the same hospital with the same doctor, my nephew was born. Different mold.

Over the next few years, like many others, I went from cute to corny. I can’t say I was to blame... it was the 80’s. It was also a time in my life where time didn’t matter.

As I got into my teenage years (still the 80’s), time moved too slowly. It took too long for the school day to end, so I skipped it.  Too long to do homework, so I didn’t do it.  Too long for me to be old enough for the clubs on the weekend, so I got a fake ID. Life was just too slow.

When I joined the Army at 19, there was never enough time. Drill Sergeants had us running everywhere, finishing our meals before we sat down long enough to get the seats warm. Five minutes to call home on the pay phone (still the 80’s) and definitely NEVER ENOUGH TIME TO SLEEP. However, once I got to my first duty station, I learned a new Army concept - “hurry up and wait." This Army concept is to hurry and finish the task, then sit around waiting for the next one.

Then later, when I got married and had children and somebody turned up the dial again, time went by too fast. My babies went from paper, scissors, and rock, to who’s changing the diapers, to PreK... and it was all too fast. I don’t miss the diapers, but I do miss the smell of my babies after bath time. I miss my children running to meet me at the door when I came home, to their closed room doors as teenagers. When they were all gone, we celebrated the freedom, but at the same time, we cried about where the time went! If you are wondering why there is tape on diapers in the photo below, it's simple. I kept ripping the tab's off by accident and that was the last one.

Though the years, birthdays came and went. Before I knew it, I was turning 55, waiting on my medical retirement approval, and LIVING with ALS. On August 13, 2022 just like when I was a young boy, time - once again - just didn’t matter. On this day, I was rushed to the ER thinking just like Fred Sanford speaking to Elizabeth his departed wife, “I’m coming."

I realized Austin that time didn’t matter; the moments and people around you do. On 14 August, I turned 55 and my full time dependency on others was about to begin. The question I had then, was if I was even going to see 56? Mentally I knew I could, but could I physically make it? This is where the moments and people are the most important.

Over the last year I have dropped from a 37 to 8 ALSFRS score. I can no longer stand or walk, I've lost the use of both arms, was put on a 24/7 ventilator, and retired from working full time. With all this going on, one could wonder, what got me to 56 and how am I going to see 57? Family, caregivers and lots of prayers.

Everyday starts when I wake up around 9AM. I get a sponge bath on the days I don’t shower. Then some stretches to get my body moving. Next is my trachia and mouth care. I then get dressed which takes two people.

Once this is done I get dressed and moved to my wheelchair for the day’s activities.

I spend most days in the living room and outside in the garden.  I work on my blog, socials, games, and TV. I am the ultimate binge watcher so any recommendations are appreciated. On Sundays we attend church, other days we might go somewhere, and other days I get visitors. My caregivers make sure to feed, move, suction and help me through out the day. Saturday nights are UFC fight nights and of course Sunday football with DEM BOYS!

Then around 9PM I go to bed and pray to God to open my eyes the next day. It takes about an hour to get up in the morning and another hour to go to bed at night depending on the caregiver.

If you looked at the pictures above and saw pain, the bones on my back sticking out, or sheer exhaustion, you saw right. However, I want you to look again and see the things I see. I see compassion, love and selfless service to keep me alive. I see family who got me to 56 and are determined to get me to many more.

In the end it’s not the time we remember, it’s the moments. Take the time to enjoy them.

I love reading comments on the blog and always looking for new ideas to write about and shows to watch. After all, I need to keep busy waiting on 57. 14 days down 342 to go.

Love and blessings.