Gleason Movie

During my "free time" I tend to avoid ALS websites, ALS organization Face book pages and ALS movies. I do keep up with a couple ALS blogs, but not many. Shelly, an ALS patient, made the comment when I asked her how she was doing one day, "I'm living the dream, baby." This cracked me up. So, I guess the primary reason for avoiding all these "ALS things" is just this - I see ALS up close and personal every day, and frankly it's not pretty. There are three ALS movies, that I know of, that came out in the last couple of years; "The Theory of Everything," "You're Not You," and "Gleason." 

Nope, nada, no thanks, I'll take a "hard pass" on these films. When asked, I always say, "Nope, I'm living the dream..." I am however, a movie lover, we go out to the movies at least twice a month. Just this past month I've seen Lego Batman, Split and John Wick, Chapter 2 - just fun movies, a diversion from daily life. Before I press on, I will say that I've heard nothing but good things about each of these three ALS movies, so I suspect they all have merit.

Patrick didn't show any interest in the "The Theory of Everything" or "You're Not You," but he did want to see "Gleason." Steve Gleason is a well-known ALS advocate in our world. He championed a bill that allows ALS patients access to Speech Generating Devices through Medicare - called the Gleason Act. The bill was passed by Congress unanimously and signed by the President in July, 2015. How many bills do you hear passing unanimously in today's political climate. He heads up his own foundation and generates funding for a number of ALS issues - Team Gleason. He is also an ALS patient and former New Orleans Saints' player. His contribution to the ALS community is undeniable, however, I just wasn't interested in the film. I saw part of an ESPN special, A Football Life, that he did early in his ALS diagnosis where he "climbs" with another patient, Machu Picchu and frankly I just found it a bit ridiculous. But, Patrick really wanted to see "Gleason" and its available through Amazon, so I told him I'd be around during the movie, but I got things to do. Nope, nada, no thank you... 

As you can imagine, I got drawn into the film, frankly not because of Steve Gleason, although, I did like him, but more because of his wife, Michel. Her feelings, comments and sadness were so incredibly real. I got her. She makes the statement in the film that "ALS is a complete mind fuck." I had to stop the film, look at Patrick and say - yep, that is exactly what ALS is! Frankly that's the best definition of ALS I've heard yet. At one point in this journey I had someone tell me ALS is a blessing... nope, not a blessing, but "complete mind fuck" yep, I'd agree with that... 

On a side note, I must say that the generational story with Steve and his father and then Steve and his son is such a human story. How we grapple with mortality, religion and beliefs, what we want for our children and how we learn to accept our differences. This is beautifully done in the movie.

"Gleason" is not sugar coated and is a documentary so you're watching, real people, with real reactions and feelings. I worried that there would be fanfare at the end, that all was great and wonderful - but there wasn't, nope it was real. There is even a scene with Steve and Michel in the bathroom. Constipation, urgency and diarrhea are realities of ALS - sitting in a chair for about 12 hours a day is not good for the bowels. We've had our share of problems - it's not fun for him and it's not fun for me. Rushing to the bathroom in an "emergency" is not possible with ALS - nothing can be quick. In our house that means getting Patrick onto the lift, sending him upstairs, getting him off the lift, transferring him with the hoyer from his wheelchair to the shower chair and into the bathroom. If you need to run to the bathroom - you can forget it.

I think probably, the most profound discussion for me with Michel was her description of herself before Steve's diagnosis. She talks about how she "use to be" much more funny and happy. She didn't think that person would return. I've had the same experience, my former self was a bit less "heavy" and certainly much happier. Sadly, I don't think you get to go back. Bruce Hornsby, wrote a song (made popular by Don Henley) called "End of the Innocence":

But this is the end
This is the end of the innocence
Who knows how long this will last
Now we've come so far, so fast

But, somewhere back there in the dust
That same small town in each of us
I need to remember this
So baby give me just one kiss

I suspect it's a bit more of a political song, but for me it really has a different meaning. I think the end of innocence is about things that happen and force us to become scarred or cynical and frankly ALS does this in spades. We get a big dose of life isn't fair, really awful stuff happens to good people and a reminder that we not in control of what happens to us. Such as when Bruce says, "When happily ever after fails and we've been poisoned by these fairy tales." 

"Gleason" is a tearjerker and I'll be honest, I had to do things while watching it. This often makes things easier for me to digest. But, I think it really captures how one family manages an ALS diagnosis. ALS journeys are VERY personal and families manage differently so this is really Steve and Michel's story - along with other family members, friends and caregivers.

A couple of items I think are important to note in the film. The first is that at one point Steve has a stem cell procedure. There are a few different stem cell trials going on throughout the United States - they are in the early stages. I think it's important to note that most ALS patients do not have access to stem cell treatments. Only a very small group have been accepted into these trials. This is not my area of expertise, but one of the major challenges for stem cells is how do we get them into the body. There is no FDA approved stem cell treatment. I've often had people say to me that Patrick should get stem cells and generally I joke to myself, "yep, I'll just head on down to Walgreens and pick some up." - pardon the sarcasm.

The other item in the film that I think bares a bit more discussion is the statistic towards the end of the film that states that about 95% of ALS patients do not opt for a tracheostomy due to the high cost of care. I think this is a bit oversimplified; absolutely money figures into this decision, but not exclusively. Frankly, I've yet to meet any ALS family that hasn't stressed over some health care cost. But, I think there are two other significant factors in making this decision, first and foremost - quality of life. ALS patients have to make their own decision about what is quality of life and this is very personal. Secondly, I think there is an undeniable impact on the people around an ALS patient beyond just financial. We were told at Patrick's diagnosis that this is a family disease - nothing could be more true.

I would rate "Gleason" - 5 out of 5 Stars - definitely worth watching, but be prepared to cry and note that this is not a Disney movie - no princesses, no knights, no happily ever afters, just real people, managing a real diagnosis. And just for the record I'm glad I saw it.