where you been?


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!!

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: