half full.

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If someone told you roughly, when you were going to die, would you accept this news as a gift, or consider yourself cursed. Would you allow this news to dictate your life negatively, or would you embrace the time you had left and make the absolute most of it?     The idea of facing our own mortality is something for tomorrow. For each and everyone of us, this idea lurks in the depths of our minds, somewhere, and at some time we’ve all thought about it. Had a near death experience, or come close, or slipped and saw our lives flash before our eyes. We’ve stopped quickly in traffic and felt our hearts race. Thought about what would’ve happened. But this thought is fleeting, easily pushed back down into our brains. Something we will face tomorrow. What if you had to face it today?

The grieving process is a mother fucker. But someone doesn’t have to die to feel grief. Grief is a gigantic wave that washes over you, bringing you to the brink of drowning, only to pop you back to the surface, so the sun can warm your tired face. My wife and I have been grieving since July. It lessens. The wave doesn’t get any smaller, but it doesn’t churn as frequently. It’s always there, a rogue wave lurking on the horizon line. Grief can take everything from you, leave you helpless gasping for air that won’t come, reaching for a life jacket that isn’t there… As quickly as that white cap comes it’s gone, and the sea is calm again.

A quick ALS google search brings up some horrific statistics. 70% of patients live 3 years after diagnosis. For me, it’s been 6 months already. So if my math is correct that would leave 2.5 years. Now, obviously this is worse case scenario, but it certainly brings many things into light. Numerous articles would paint the ALS diagnosis as a “death sentence.” We are taking a different approach. We’re painting this as a life sentence. In the darkest of ways this can be considered a gift. A gift that allows me to prioritize whatever time I have left, and figure out exactly what I want to get out of the rest of my life. While it puts it under a bit of a time constraint, I’ve been afforded the opportunity to really look at my future under a microscope, and prioritize the important things that I still want to do with my life. In a sense it has lit a fire under my ass. Time is precious, and mine is limited. So how do I make the most of it?

There is power in a bucket list. There is power in control. At this point my life feels like riding a skateboard. Riding a skateboard down a massive, steep hill, flying fast and feeling the board start to wobble, the faster it goes the larger the wobble becomes, faster and faster until I’m at the brink of flying off the board, unbelievably out of control…. And then there’s the list. The Bucket list that allows me to regain some control, and tap the brakes on my skateboard a little. It gives me the ability to control a small aspect of an uncontrollable future. And there’s relief there, and power there.

It’s strange to be 34 and planning a bucket list. Not only to prioritize the things I want to see and do before my time is up, but it’s important for me to make memories with my loved ones. A minister and friend suggested I work on this bucket list and at first I thought it was dark and sad, and I didn’t want to face that or look at my life in terms of time left. But I thought a little more. He told me as people find out and friends and family find out, they will inevitably say, what can I do? Unfortunately there is nothing that anyone can do. But that’s not really true, there IS something you can do. You can make a memory with with me. You can come fishing with me for stripers, or ride with me in a helicopter. You can join me on my adventure, the adventure of Living.

Author: adventureoflivingblog

My name is T. For now I'll remain anonymous. I'm not really sure why, but it feels right. In July I was diagnosed with ALS. Faced with the choice, "Life or Death," I've chosen to live. But not just to live, but to really LIVE. This is my Adventure.

One thought on “half full.”

  1. I have no words right now…. it’s taken me a day just to be able to leave this and process whats happening. I hit the bottom when I heard this….. no…. not you. Please don’t let it be true… but it is. We can’t change the cards we been dealt to avoid the pain. Only play the hand like it’s our last. No words will probably do justice to what I’m feeling right now, for you and what your going through. Just know that I’m here listening to what you have to say, and I’ll be here everyday to keep reading your story. Thank you for doing this, for telling us… for being that great person you are. I understand why you’ve chosen to do it like this and it’s ok. Don’t stop. We all need it. You deserve to be able to lay this burden down, to say what you need to say. No man can live in the cage of his own mind… We all need to know what your feeling and how your dealing with it, it’s only going to give us the strength we need to understand what’s happening, see it through your eyes and be able to be there for you the best we can. Now is not the time for crying about the things we can’t change in life, but living for the memories and moments we can make together. I don’t know what else to say. Im here… but know I’ll be back to see you soon and I think it’s time we go for a long drive with the dogs.

    Like

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