So, I decided to take last week off. It has been a pretty busy year for me so far. Running around here and there. Plus, I just wasn’t really feeling it. Part of it was due to the fact that I knew that my life was going to be taking an abrupt turn.
Life with ALS is constantly evolving. If you are lucky, many of these changes come far enough apart that you can adjust to one before facing the next. Most are minor tweaks to your everyday routine. But if you read my last entry, you know there are monumental events which dot the ALS landscape. Last Thursday, I had one. I had surgery to place a feeding tube.
Of the numerous milestones passed, there are only two that are considered life supporting. One is a tracheostomy in which a hole is cut in the throat and a tube is placed in your windpipe and connected to a ventilator that breathes for you. The other is the PEG tube. A small incision is made in the abdomen. A plastic tube is placed into the stomach and protrudes out about a foot. This allows for a syringe to be connected which can be filled with liquid food to flow directly into my stomach. Wonderful, right? While other events are life changing, these are life sustaining.
I knew from the beginning that I was going to opt for the feeding tube. I have no desire to die of starvation. I know that I will want the trache when that time comes, except in a couple of circumstances. So, getting the PEG was a decision that I was solid with. I have no second thoughts. But I do admit that it weighed heavily on my mind. We visited with the doctor a couple of weeks ago and I was quick to pull the trigger. I am doing this. Let’s go! He walked out and sent in the scheduling nurse. They had availability within the next couple of weeks. I’ll take the soonest ! On the schedule. Shit got real, real quick.
Like I said, my mind was made up. I am being proactive. Getting ahead of the game , right? I don’t “need” it, yet. I am still able to eat normally. This is good because I have it before I have choking issues and I am in good enough physical condition to recover fairly easily. Yet, I couldn’t shake that lingering feeling.
I was not nervous or anxious. Though I was concerned about the additional responsibility I would be placing on my wife, that still wasn’t it. You know what it is ? I was sad. I didn’t voice it. But that was it. I was sad about what this procedure signifies. Sure, other challenges and adaptations hold significance. But this is a true intrusion of my physical self. This is what I will have to rely on to continue my fight. It represents a major phase shift in my ALS journey.
After a few days, the feeling has subsided somewhat, but the reality is sitting here, right in front of my face. We will adjust as we have been. This one has been a tough one for us, though. We don’t know what each new sunrise will bring. We will keep facing our new normal.