"The Obituary" Chapter 8

What do you give a dying man?

TIME!

For years I have looked at news sources and seen obituaries like, “John Doe passed away. John was a good guy leaving behind his wife, kids, and his dog.” Some are a bit more personal, but for the most part, they are all the same. You never read, “John Doe passed away and we are better for it. He cheated on his wife, kicked his dog, and was an all around bad dude. He leaves no one behind because they left him long ago and don’t care”. So, why do we lie to ourselves when a person dies and talk about how great they were? Is it because we feel bad this person died? Is it our own guilt for not reaching out sooner? "Don’t speak badly of the dead," Mom always said, but why not? Shouldn’t we speak the truth? Shouldn’t we take the time to reach out before you read the obituary?

The fact is, no one wants to die. We don’t want to lose our loved ones because we will miss them. But, can I tell you a secret? We will all take the long dirt nap. We just don’t know how or when... well most of us don’t.

For me and others with ALS, we do know the inevitable is coming, we just don't know exactly when. So why am I discussing this now? No one wants to read about death. But the reason is simple - we get so consumed in our daily lives that we forget to slow down and enjoy the people around us. Before you know... it you are reading their obituary.

Even I did the same before finding out that the sand is running out for me. It is funny what becomes important and not when facing death. But David ,you say, “I have Facebook, Twitter, Instagram. I comment on peoples' posts all the time. Hell, I am so connected that I have 1000 followers. Let me ask you; what do the flowers on the internet smell like? How does the recipe taste? What does the Hug you sent someone feel like? I would rather have a person bring me flowers, hug me at the door, and say “hey let’s make a recipe I found for lunch. Let’s spend the next 4 hours reminiscing and laughing."

Look up people! We have never been so connected and so disconnected at the same time. We drive, walk, sit, sleep, and even take a dump with our phones in our hands (please wipe your phone off after... um nasty). Children scream at their parents when you take it away and never learned or forgot how to go outside and play. Our basketball courts, playgrounds and sandlots are empty. Our kids think online gaming is socializing. You can argue that it is, but you never get to feel the others around you and read the emotions on their faces when they win or lose. Kids can talk a lot of shit through their online games that they would never say on the play ground. It simply cannot compare to the memoires I have being outside engaged with others. You cannot say, ”remember that time I beat you on Xbox?" What kind of story is that? I remember as a kid watching my brothers play softball in an empty lot and seeing who could hit the ball all the way to the top of the mall roof. It was the “Sandlot” before the movie, only there wasn’t a mean dog eating the balls. My brothers had a tree fort and if you could not climb up you couldn’t go in. There were many days of sitting on the ground while they were up there. For fun we would line up coins on the train tracks wait for the train to crush them then pick them up. This is how you connect and make memories, through engagement, getting dirty or in a little trouble

Which brings me back to my point. When I read Tuesdays with Morrie, he had a living funeral. I thought wow, that is interesting. Have people come to your funeral before you die. Is that selfish or selfless? On one hand it could be selfish to think you want to hear what people had to say about you to make you feel good. After all, who is going to say, “David was a real asshole and I was glad to tell him before he died." Remember what I said about the obituary? No one ever talks bad about the dead. To be honest, I would rather you tell me I was an asshole and give me a chance to apologize than grin like a politician looking for my vote.

I recently had a friend John G. hear about my diagnosis and ask if he could visit while in town. He went out of his way to make sure to visit and you know what, he told me I was an asshole back in the day. He said “man I don’t know how you could be so giving to me and your friends but to our students be such an ass." John and I were instructors together in the Army. That is real talk, which was the best thing I’ve been told in a long time. We sat down and laughed about it and other stories from our past and I love every minute of it.

John G and I. Brothers from another mother. I'm the good looking one.

On the other hand is it selfless of a person because you get to tell them how you feel, see them one more time, and say goodbye. Think about it. How many times have you said, “if I only had a chance to give my friend one more hug or tell him 'I love him.'" I think I would rather have the living funeral. I want to hear stories, talk shit (ok... I'll type shit and you talk it), or just say, “I love you man”. So I am having a living funeral every time someone visits. I spend the time talking and enjoying their energy and I tell everyone to ask me any questions they want. If I have to eat, I eat, and if they don’t want to see my feeding tube they can step out. But, no one has left yet and most ask a lot of questions which is great.

In my case I am lucky. I know ALS is a progressive neurodegenerative disease with no present cure. I know that I am going to die, which is why I say, “I am living with ALS - not dying from ALS." This is one more reason why I am doing the blog. People need to understand ALS better. I have time to plan out everything I need to get ready unlike someone who suddenly passes away or lives so long there are no more friends or family left. I get the time to tell you how I feel, eat some food (through my PEG), and smell the roses like no other. You need to do the same. Live today like there is no tomorrow. Tell the people in your life how you feel. Take trips and smell the roses. I am not saying YOLO here, but I am saying to look up and turn off the phone for a bit. Get reconnected by disconnecting. Kick the kids out the door to play... better yet go play with them and turn off the Xbox. Let’s stop letting life get in the way of living.

In the end, I don’t want my story told in two lines in the paper saying I was a good guy.

I want everyone I know to have the time to tell me in person and never have to write the obituary because there is nothing left to say.