The Tale of an ALS Survivor # 12
Putting My Affairs in Order
Try to wrap your head around that. I thought I had my affairs in order. This is a whole new ball game. I don’t think many folks have their affairs in order. When you’re told you have 18 months to live, you certainly have a new frame of mind about what’s really important.
Like, what are my things? I used to think my things were my house, my car and my cameras, my computers, my pool table, my clothes, my tractor, my land. They are not mine anymore, I have no use for them. I could seriously feel a loosening of all my material belongings.
I started to give away my treasured items. It was sad and also refreshing because I didn’t have to think about them anymore. I could only look at things. I could not touch them or hold them any longer. They needed a new home.
As far as I knew, I was leaving. It made me think of what I could get in order that could benefit Me as I faded away to ???.
My first line of business was to make sure I was doing everything to Stay.
I was.
How was I doing that?
Diet, excise, chelation, squirming on the floor, prayer, supplements, lying on the earth.
That was all helpful but my mind was my worst enemy. I’ve always kept in the back of my mind the first neurologist telling me that my nerves had died and there was no way for them to return. He was supposed to know what he was talking about. I’m just a person with a big problem. I had no idea what ALS was or what it was going to mean to my family.
It was so hard to be mentally at war with myself. My attitude seemed to change every day according to my level of mental anguish. I kept forgetting I was in charge of my mind, which was very healthy going both ways, positive or negative.
My affairs were definitely not in order mentally. The ALS was trying to take my body and pretty much did, but I was not finished.
My New Orderly Affairs
How is today?
That’s where I started. Every day was pretty much the same except for my attitude. I had to get that in order for my family’s sake. My belongings had a home with my family. What I really had to come to grips with was my Soul. I was coming close to meeting my maker and that was concerning me.
A lot of my affairs had been taken care of by others.
Now it was getting personal.
The mirror was my meeting location with myself. My talks were a little scary because I was trying to get to know the unknown. I was reaching for any comfort I could find.
What’s important changed for me.
What could I do for my family right now? My love for them and how I was sharing it became medicine for both myself and them. I started to talk about their needs. I felt I had taken up all the extra emotional energy in our home, which is a normal part of this journey. I knew I had a bigger part in this challenge than I realized. Poor me was only half of my the story.
I started to see another side of me.
If I died inside, I would surely die outside.
I started to pet my mind, like you would your dashboard in your car when you get home safe. My body was not moving but my mind was taking me on long trips. I went through the shock of being given a date with death. That set the tone for my journey.
That was a really bad send off from a doctor’s office. Why did he have to be so sure of a LIE? We are all individuals with distinctive powers that we have no idea we possess. I got caught up in a limited perception of healing that was not mine.
I tried to stay in a state of disbelief, but I was losing more of my physical abilities each day.
I hoped that being angry would build my strength, but it only made those around me feel tired. Thank you over and over to my family and friends for total support while I was trying to find my way.
I was starting to make regular visits to the mirror; it was a serious location to visit. As a young boy, I would have to go to confession each week at church. I would make up lies to tell the priest so I wouldn’t have to tell him what I really did. I wasn’t talking to a priest anymore.
This was me with my Soul looking back at me. I felt safe crying.
I have a deep spiritual past, I was trying to bring it into this challenge.
Getting my affairs in order was way more complicated than I thought. I was just touching the surface when I made my will.
I had a chance now to put the most important things in order, and Mona was my top priority. I was so thankful to Bret because he gave Mona the feeling that I was well taken care of.
Accidents do happen. My bedroom has two steps down to enter. One evening Bret tried to carry me down the two steps and we started to fall. Thankfully, we did not hit the floor.
Being dropped was one of my most painful experiences. When people would move me, I would say, “Please don’t drop me.”
So for my protection, I had to order a hospital bed for my office.
Now we’re talking pain on top of pain. I just had to move out of my wife’s bed. She is used to pushing me up to P several times a night. Now I have to call out to her in the middle of the night to come to my office to help me. I had so many things go wrong, I tried to get used to it. I was becoming a professional invalid, I knew it well.
I started to spend more time in my hospital bed. I didn’t like it at all, but it was helpful in many ways. Like Mona not having to push me up to P in my urinal. I wish I had known about the condom with a tube attached to a P bag.
One day some friends came to visit, they came into my office and spent 15 or 20 minutes chatting with me and then they went into the living room to visit with Mona. A short while later I heard someone open my office door, I think they peaked in to see if I was sleeping, I wasn’t, all of a sudden I heard the door to the house close and the house was quiet.
I needed 24hr. care because we did not have experience in all the challenges I was, or, I have to say, my family was facing.
I needed to P. The urinal was sitting on the tray table next to the bed. I was not going to mess my bed. I sent my two fingers on a mission to pull my arm over the rail and secure the urinal with my two fingers. Time was running out, but I was not going to give up. Guess who won !! Not me.
Moral of the story is.
I am not sick. Do not tuck me away. If I need a hospital bed, why can’t it be in the Living room.
I am a whole member of my Family. My home is my Castle. I needed to be in the main stream location in the house, even in my hospital bed. My family was an example of: no experience living with ALS.
If your stress level needs support, I belong to a group of folks who understand the challenges in your ALS journey. contact us at info@everythingals.
