Saturday, January 30, 2010

The Diving Bell and the Butterfly by Jean-Dominique Bauby

2008 Olympics Sendoff Party

Sue, Devan (Vicky's son) and I spent most of the day helping Dad stay comfortable. He is still in a lot of pain from the Trach and feeding tube. His nurses have finally started letting us use the swab to wet his tongue and suck the water back out. He is so thirsty and there is no other way to quench his thirst. Although he doesn't have a fever today he is still hot. I finally convinced the nurses to let me plug in a small fan to help him stay cool.

He didn't have a lot to say today other than he was thirsty or wanted to be adjusted. For the first time in several days he let me read the newspaper to him. He also wanted me to read him the blog. The Pulminary specialist did not feel a breathing trial was necessary today. He is just not strong enough. We hope the surgeries are the reason for his lungs being weaker. It may take a couple days for him to get his strength back.

Feel free to send an encouraging note in the comment section here on the blog and I will read it to him.


The Neurologist who declared Dad's stroke to be a brain stem stroke called Dad's condition the "locked-in syndrome". He said there was a man named Jean-Dominique Bauby who wrote a book about it after his brain stem stroke. If you can imagine he wrote this book one letter at a time. He recommended we read it.

I wanted to pass on the information about the book so you could check it out. Here's what I found: This Parisian journalist Jean-Dominique Bauby suffered a stroke in December 1995, and when he awoke 20 days later he found that his body was almost completely paralyzed: he could control only his left eyelid. By blinking this eye, he slowly dictated one alphabet character at a time and, in so doing, was able over a great deal of time to write his memoir The Diving Bell and the Butterfly. A few days after it was published in March 1997, Bauby died of pneumonia.[13] The 2007 film The Diving Bell and the Butterfly is a screen adaptation of Bauby's memoir.

For those of you who don't know what locked-in syndrome is I copied this off wikpedia:

Locked-in syndrome is a condition in which a patient is aware and awake, but cannot move or communicate due to complete paralysis of nearly all voluntary muscles in the body except for the eyes. The condition has been described as "the closest thing to being buried alive".

Locked-in syndrome usually results in quadriplegia and the inability to speak in otherwise cognitively intact individuals. Those with locked-in syndrome may be able to communicate with others by coding messages by blinking or moving their eyes, which are often not affected by the paralysis. Patients who have locked-in syndrome are conscious and aware with no loss of cognitive function. They can sometimes retain proprioception and sensation throughout their body. Some patients may have the ability to move certain facial muscles, most often some or all of the extra ocular eye muscles. Individuals with locked-in syndrome lack coordination between breathing and voice. This restricts them from producing voluntary sounds, even though the vocal cords themselves are not paralyzed.


  1. Hi Marshall, we have all been praying for you and thinking of you on a daily basis. We miss you at the gym. Don't worry we have been cleaning the gym and it is in TOP shape just how you would expect it to be.

  2. Hi dad it is sunday January 31st, I spoke with Devan and Melanie yesterday. They say you are still in some pain from your trake, and that after some rest the first part of next week your lungs may me strong enough to try breathing on your own. I also here that Christopher is coming to visit tue or wed.

    Every one at work askes about you everyday as well as keeping you in their prayers. I have 45 employees and 65 volunteers.

    Our neighbors,Steves mom Eileen, his sister Diane and her husband Tate as well as Steves folks Dan and Ginny all have you in their prayers as well.

    Stay strong, get some rest and I will call you soon.

    Hugs,kisses,love and prayers


  3. Marshall, we are so proud of you and I think everyone is so blessed to have more time with you! You are an amazing man! I am very concious of the smells in the gym lately and it smells so nice. I wanted to tell you that because I think it would make you smile that the job is getting taken care of and you do not have to worry about that. And we were so grateful for your work when you were there. Did you know that Roach Gymnastics is the only gym that I have ever been in that does not smell like a know that sweaty sock smell. I have been in many gyms in my life, I am kind of a gym rat, so I have smelled the best of them and yours by far is the best smelling and clean! Just so you know. But I am sure you want to get back there and walk around again. I pray that can happen, but even more, I pray that you embrace this new journey that God has planned for you right now. God has some other plans for you that are GREAT. As Jeremian 29:11 says, "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." A hope and a future! You are still here, you are still around, so trust me, God has plans! I am so excited to see whatever they may be, they are amazing. I will never forget being in that room with you and watching Sue love on you and kiss you and rub your head. It is what every person longs for in their old have it! Love all around you! You are a blessed man and I think that is why I could not stop crying when I was there. Sorry about that, by the way, you looked great, I was the one that was a mess because the love between you and your wife really impacted me! That is a great thing. What a neat way to be used by God to show a pipsqueek of a kid how love should be lived out! HONORABLE! That is all I have to say. I have such a huge repect for you and your family and we are continuing to pray for you as you enter into this new journey in your life. Something new. You are doing a great job. Have you seen the movie UP? We just rented it and our kids and I have watched it 1 million times, every time I watch it I cry, in like 5 different parts. That is just me, I cry sometimes, but anyway, I was reminded of you in that movie because he opens the journal at the end and sees that Ellie told him to go and live another journey for her, even though she is not with him anymore. And I thought man, that is exactly what Marshall and Sue are doing. They are on a new journey together. They are like Ellie and Carl in the movie. But you both still have eachother, which is great! I pray your time together lasts and lasts. Time is so precious. Be blessed today and know that people you do not even know are being touched by your story and your courage. One step at a time, you are doing such a great job! May God pour out peace, strength, joy, laughter and sweet sweet memories on your famliy. We love ya, the Lleras family