Hello to All
This is Bruce’s wife Lita writing. It is with a heavy heart that I write what may be the final post on this Blog. In May Bruce began to lose the ability to swallow, and shortly there after the ability to be understood. His face had begun fasiculating, and the light began to go from him. He had given in to the disease that was rapidly taking everything from him. We has hoped that ALS would leave his face, throat and tongue alone, but it wasn’t to be. He indicated to me on June 8 that he wanted to talk to the kids and close family about the situation and the choice he had made. I was able to get everyone together on Fathers Day. He made his wish to transition known publicly at this point. I had known for some time but did not want to say anything until the 3 kids knew. I promised to do exactly as he asked. On June 20, 2014, Bruce made the crossing at my hands under the guidance of Hospice, as I took him off life support which he had been on since last August. He was comfortable and looking in my eyes as I massaged his face and head. He passed with dignity, clarity and as he wished. We spent many hours talking and sharing memories in the 14 months prior to this time. We were best friends, co-workers, partners, lovers, husband and wife, parents and buddies. We always will be.
Thank you to everyone for their prayers, love and support during this difficult time. Bruce was a great husband, father, son, brother, friend, mentor and teacher. He will be missed by all.
Bee Awesome, he is!
I’m still here. We’ve been dealing with a case of respiratory infection for about ten days. I ‘ve been on antibiotics for four days. It’s like laying on the bottom of the pool breathin’ through a garden hose with someone pourin’ vanilla puddin’ in the other end. Lita’s trying to keep me vaccumed out, and is doin a damn good job. Of course the antibiotics are screwing with digestion. Crappy situation if you know what I mean. Lita is a saint!
Wait… they’re the same thing right? I don’t think so. I think of it like this. Passion for something, anything, takes time to develop. Years perhaps. I suppose passion could begin with emotion, but at some point, the emotion fades, and the purity of the passion rings true. Think of something in your life that you are passionate about. It’s going to be the kind of thing that permeates most every aspect of your being. It’s not a whim or a fleeting thought. It’s the kind of thing that will make you stand your ground.
Now, let’s think about emotion. Unlike passion, it can appear almost instantly. Sometimes without much warning at all. And if you think about it, ” When emotion goes up, intelligence goes down “. Don’t believe me? Have you ever been so angry that you’ve said or done something that you wish you could take back? Or have you ever been so happy and elated about something that you’ve done something detrimental to your health and wellbeing? You know, backflips, cartwheels, handsprings. Emotional moments tend to pass relatively quickly. At least they should once intelligence returns.
What say you?
Continue Beeing Passionately Awesome
So… I was thinkin’. Contemplating really. When our creator was in design mode, there must have been a good reason that she arranged our mouth, eyes, and ears the way they are. And sized them appropriate for their intended use. Now.. I know that most folks would consider the mouth the most important of the bunch. I mean it’s used to eat, breathe, and speak. Uh…. not so fast. I happen to eat mostly through a piece of aquarium tubing that passes through my belly and into my stomach. I breathe through a plastic housing that is inserted into a hole about the size of a nickel, in my neck. My air is delivered from my respirator via a 3/4 inch clear corrugated hose into my trach housing which has a replaceable inner cannula. The air passes through the orifice which is about the size of three coffee stirrers and into my lungs. Now, as far as speaking goes, I admit I still use my mouth for that. I’ll admit I’m special. Ok, back to the point. I think that there is good reason that our design includes two eyes, two ears, and only one mouth. As a matter of fact, I’m certain it’s true because my Dad told me on more than one occasion to shut my mouth and open my eyes and ears and I might learn something. And he was right. Now consider positioning. The eyes and ears are closer to the brain. And are connected more directly to it. Their jobs are to collect info and send it on to the brain. What’s the mouth connected to? Well, the brain, but I’m talking about it’s major connection. The airway and esophagus, then the stomach, then intestines, and finally…. well…. there you have it. Kind of explains a lot about the problems that the mouth can cause us now doesn’t it.
And keep your eyes open and your ears to the ground
Well, I’m clean shaven once more. It was somewhat difficult to shave close to the trach, so I grew a goatee. All was good except I have been taking food by mouth more often now. Mostly pureed soup and jello. Because Lita has to sit off to my left side, facing me, it’s difficult for her to get the spoon all the way in my mouth. So my mustache became quite the flavor saver. So after realizing the profound revelation of universal truth that babies are born without beards for good reason, out came the clippers.
We had our monthly visit from Scott Propett, Michael “House”Tain, and Glen Wilson. Glen is returning this weekend.
I received a message from a good friend from the world of arboriculture. He asked what he could do to help fight ALS. How awesome is that? Thanks Jesse. I told him to find a local PALS and see what they or their caretakers might need on a personal level.i know Lita and I have been extremely blessed by the generous help of others.
I got word that fellow PALS, Steve Gleason, went into surgery to get his trach the night before last. He’s doing great. I want to wish him a quick recovery. It’s just another bump in the road, Brother.
Well, the plans continue for our Epic Adventure to Milwaukee.
Our good friend Michael “House” Tain just left after his monthly visit. While he was here he proposed that we collaborate on a project that would provide CEU’s to nurses and other hospital staff. Also giving needed education on the challenges faced by PALS and their caregivers as well as the possibilities that are available for PALS to live full and relevant lives. How awesome an idea this is ! I’m going to start putting together an outline for my part. Exciting stuff for me on many different levels.
Have an Awesome day!
So…. where do they find the rats with ALS that they use for research? How can they tell the rats have “human” ALS? Do they give normal rats ALS? If so, why can’t they “take it back”? Like John Coffey in The Green Mile.
We’ve all heard it said,” Winning isn’t everything”. well, here’s another thought.
Winning is a moment, but the journey to the podium, and what is learned on that journey to make you better, is forever.
We received lots of positive feedback on the ” A Morning With ALS ” video. It occurred to Lita and I that folks might not know the challenges that a PALS and their caregivers face on a day to day basis. We left out the hour or so that starts the day. First meal, diaper change, suctioning the nights secretion from my lungs, application of the ” outfit ” for the day. all cool stuff, but not everyone’s cup of tea.
With that said, we are going to create a video showing all the ways that I use to communicate. Lita thought it would be good to show the reason why , even though I am still able to speak, that I use multiple options depending on what it is I am trying to convey and to whom. So this past week , at my monthly trach change, she video taped the procedure. We are going to put that video up first so folks can see the instrument through which I breath and it will be easier to describe my speaking tools and techniques. So stay tuned!
Happy Mothers Day to my beautiful wife, as well as, all the other moms in the world.
Have an awesome day!