where you been?

off-hook-phone

Numerous people have asked me, why it’s been so long since I’ve written a new blog post. Well I can say it is not for lack of effort.  I’ve written no less than 15 of these posts since December and opted not to post any of them.  Some were winey, some were downright dark, others just self-indulgent. Frankly, they weren’t an accurate portrayal of how I am actually doing. However, a friend also reminded me that I don’t have to put on any sort of show here with my blog, and I don’t have to post the positive happy go lucky, all the time. While I have been trying to keep this blog a positive and inspirational place for myself, my family, and my friends, there is an entire, other side to my life and my mental well-being that is affected by this disease.  I have bad hours, bad days, bad weeks, and many bad night’s sleep.  Despite all the amazing trips and experiences L and I have had, and are currently planning, there is always the nagging twinge in the back of my mind, that I have a terminal disease. While I have been told, it appears I do not have a rapidly progressing version of ALS, the idea of living on borrowed time, comes on without warning and can be hard to shake.  My moods often swing from happy to frustrated, sad, mad.  It is uncontrollable, and often irrational.  My wife is amazingly understanding, and is there to help me, or let me vent without judgement.  So how am I doing?

Well that’s the million-dollar question.  The short answer is, I’m doing fantastic. I’ll start the story back around the holidays.

While our week off from work between Christmas and New Years was chalk full of driving and travel, and living out of suitcases, it was one of the most memorable holidays I have experienced.  A few days in upstate New York with L’s family, a few days in Connecticut with my family, numerous bottles of scotch and bourbon and countless laughs.  I couldn’t have asked for a better time with our families.  But there’s more.  Oh, so much more.

Tuesday after Christmas, L and I set out on a bucket list adventure.  Left the dogs in Connecticut and hit the long dusty trail to the big city.  Well, we took the train out of New Haven, but we headed to New York City for a few days on a mission to complete two of my bucket list items.

Before I get to the bucket list items I have an honorable mention that very well could’ve been on my list.  We scored a reservation at Nobu 57.  If you’re into sushi and Robert De Niro, this may be the spot for you.  What an amazing restaurant, while you’re there, get tanked and order the $110.00,  bottle of Saki.  Allegedly, I did.  If I don’t remember it though, I think they say, it didn’t happen.  I still think L may be making this one up, I’m not one to go on these winged flights of fancy.  (It was good Saki though)

On to the massive Saki hangover and the single greatest meal I have ever experienced. My all-time favorite celebrity chef Eric Ripert has a restaurant in New York City called Le Bernardin.img_0127 After making our reservation a month in advance, L and I were to sit down to the single most amazing meal of our lives.img_0122  In doing so, I scratched off one of my bucket list experiences. In true, fine-dining fashion, we sat down to an amazing four course French meal, that I will remember for the rest of my life.  Words don’t do it justice.  We ate everything from Oysters, Octopus and Tuna, to Macaroons and Wagyu beef.

If you don’t have this restaurant on your bucket list, add it and go.  The experience is one of a lifetime. That’s not it however, this day would see me scratch off another item on my list. BROADWAY…

A dear friend would make this possible for us, and gifted us two amazing seats to see WICKED on Broadway.  From the 4th row, L and I experienced one of the most amazing shows I have ever seen.  Two double Makers on the rocks later, they curtain called, and I was happier than a pig in shit. The Wizard of Oz has always been my favorite movie, and now Wicked may be my favorite play, (aside from Book of Mormon, but they’re oh, so different)

For now, I’m going to end here, there will be more to follow, including a trip to New Orleans and another bucket list item scratched, The Pacific Ocean.  Our adventures continue, and we are LIVING!!

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.