Rage, rage against the dying of the light

Do not go gentle into that good night

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

 

What a Wedding.  Blue Grass and a Cigar!

I recently went to the movie Interstellar and marveled at the sheer audacity of the filmmakers attempt to tackle the greatest riddles of the universe.  Worm holes, black holes, relativity and quantum physics thrown at you in mind bending ways along with an interesting storyline that incorporates all of these great mysteries.  And yet, even with all of this awe inspiring theory intertwined with Hollywood magic, what struck me most was a simple poem recited by one of the characters entitled " Do not go gentle into that good night" written by a fellow Welshman Dylan Thomas in the late 20th century.  The line Rage, rage against the dying of the light hit home in ways I cannot describe.  Despite all of our advances and marvelous discoveries, our days in this universe march on and are finite.  Death is inevitable and right but one should not go quietly into the " dying of light" but live (I love his use of rage for live) fully to the end.  It's not honorable to go quietly.  Pretty heady stuff but that's what I think about these days. Fear that there is so much more to do and not enough time to do it.......... 

Another 120 days or so have come and gone.  The overall issues associated with ALS appear to be holding steady with the functionality of my left arm and hand deteriorating slightly.  It's amazing how many things are impacted when you only have one good hand.  Working in the yard, golfing, typing, buttoning pants and lacing shoes all become challenges. Ryan had to help me put the glass door insert into the front door because I couldn't lift it.  Humbling.  My head seems to be in an ok place but I am sure some would disagree.  Work is go well and the family is fabulous!  Life's inexorable march!  I am so proud of my kids I can't stand it.  Ryan is doing well in school, driving, working and is dating.  My boy!. Megan is still in Barcelona Spain attending classes, interning, partying, and travelling all over Europe on the weekends.  My world travelling baby girl!  She gets home in time for Christmas.  Best present ever! 

Since my last update, I have had the pleasure and distinct honor to participate in some significant life events for friends and family as well as just enjoying the everyday ......

• Vacationed at the Cape in a wonderful cottage we have been going to for years.  Friends of ours parents own it and generously gifted it to us this year.  We are blessed to have great family and friends.  We relaxed, flew kites, ate, drank, attending Provincetown Gay Pride festival and parade, danced in a makeshift backyard dance stage ( the deck) around a kickass bonfire, and completely chilled out.  Woke up on the final day for a stellar sunrise and gave thanks for another day.

Me and the "Pole Dancers"  Provincetown

• Attended a friends wedding in Portland Maine.  Beautiful wedding with wonderful people.  The highlight of the weekend was reconnecting with a childhood friend.  She lived in my neighborhood in jersey when I was a kid from the ages of  6 to 12.  She was my Winnie.  Some of my fondest memories of life stem from my days on Sandlewood Drive.  I called her and told her that I was going to be in town.  She agreed to meet in Portland, her home, but had to come back from her beach home some 40 minutes away.  She and her husband came in and it was like 38 years hadn't somehow intervened.  I can imagine the conversation with her husband... we're leaving vacation to go visit who?  Great guy.  Staci and Julie hit it off and Julie told her a story about when she moved away at 12.  Another friend from the hood, Doug, and I pooled our money to buy Julie a going away present.  She was sitting on her front stoop with the moving trucks packed.  A sad sad day!  Doug and I presented her with Butterfly earrings as a token of our friendship.  Guess what!  She still has them!  I get misty eyed just thinking about it and the amazing fabric of life we all  weave for ourselves in which we can always draw strength from whenever needed.  Like a well worn blanket we can always pull around ourselves for warmth and comfort.

Me, Staci and Julie

• I also attended another friends wedding in the rural hills of Virginia.  My favorite wedding of all time.  Rolling hills, autumn colors, tent next to a trout stream (yes fishing was on tap), beautiful bride and groom, bluegrass band, old friends and glorious weather all conspired to make it one for the record books.  We stayed in Georgetown the day before and got to tour the West Wing of the Whitehouse at 8:30 in the evening. Can you say Rose Garden, Situation Room, Press Room and the Oval Office.  I have some wired friends who live life to the fullest.  Thanks Kim and Jason for a great weekend.  Thanks Tom and Joanne for allowing us to be part of your wedding day. 

  

  West Wing Entrance

  

  Wedding Along the Trout Stream

• I travelled to Arizona and visited my aunts and uncle who I haven't seen in 23 years.  I travelled over the Hoover Dam to Kingman AZ.   I had worked in Dolan Springs at Aunt Pauline's store when I was in high school and drove through on my way to Kingman.  Flashback!   I planned on taking them out to lunch but Aunt Pauline had a full pot roast dinner waiting.  Loved it. 
• Travelled to Ponte Vedra Florida for my Dad's 2nd memorial service.  Joanne and my dad have had a place down there for over 11 years so a big part of their life and friends are down there south of the Mason Dixon Line.  It was a beautiful service despite Joanne picking every hymnal song that she has ever loved.  We sang every verse of every song. Best of all, all the boys (me, Jeff, Greg & Matt) were together once again. Spending time with Joanne,  walking in St. Augustine, spending time at Matt and Danique's new home,  eating, drinking, and bullshitting at Caps (Bar right on the inter-coastal) in the rain under a tin roof is just some of mundane highlights.  Thanks Cindy for driving and putting up with all of the inebriated pontification.  Most of all, thanks to Joanne for the enduring love she has for my dad and for the love she has for all us brats.  

  

  Greggor Expressing a Point

• Inspiration and opportunity comes from many crazy places. You just have to be open to it and actually remember it the next day. One night in Florida, we were at the aforementioned Caps spending time with family and friends.  True to form, a few of us stayed for the late shift drinking scotch.  David Green, a great friend to my father and Joanne, was one of the late shifters.  David is a hardcore running enthusiast.  He has run in numerous marathons and triathlon's but the most impressive,  to me, are his efforts in the ultra-marathons.  You know, the ones where they run 135 miles night and day for several days.  Well, it just so happens that he is running in the Brazil 135 coming up in January which has just been expanded to 175 miles.  Mind blowing! As the scotch was flowing, he mentioned that he still needs support team members.  I asked, "is there any chance of getting attacked by a Puma ( I don't even know if Brazil has Puma's), bitten by a snake, hit by mudslides, hit by hail, or generally exposed to danger"?  "Yes", he said.  "I'm in", I slurred.  Again, the trick is to remember it the next morning.  Well,  I did.  Got home and had a family meeting with a favorable outcome.  January 11, 2015, I travel to Sao Paulo Brazil to provide support to David and his teammate.   Chase vehicle, hydration, food, motivator, and videographer are part of my job description.  If David and Kevin make it to the 135 mark, I get to run up the next single track leg with them which is strait up for 10 plus miles.  At this stage of the race, it will be like running with cast members from the Walking Dead and hopefully I can keep up with them.  Epic!  Can't wait!
• Fabric of Life once again comes into play.  I have a high school friend, Bonnie, who every guy in high school had the hot's for with myself being part of the club.  Bonnie reached out  to me and told me about a friend, Roy, who is a videographer and co-founder of Legacy Mission.  They are a small non-profit that goes in and creates moving video life portraits of individuals who have received terminal diagnosis.  A father with a brain tumor. who has two small children and a wife, is given a year to live wants to ensure that his children know him if he does succumb to the tumor.  A young girl who also received a terminal diagnosis has things to say and like all of us, doesn't want to be forgotten.  Then there is me.  I have been struggling with doing this myself in a dignified way and then Bonnie puts Roy and Amy in my life.  They flew to NH, with all their equipment, and sat down with me for an interview to explore my life and thoughts.  Talk about unnerving but they are the nicest and most down to earth people I have ever had the privilege to meet.  I can't vouch for the content I provided but I am sure they will work their magic and make me appear somewhat coherent and presentable.  The Legacy Mission was born out of need and both Amy and Roy were asked to step in a fill the void because of their unique skillsets.  It was supposed to be a one and done deal but they were drawn to the desire to tell the story of those of us who, by diagnosis, supposedly won't be around too much longer.  The process is anything but morbid.  In fact, the only requirement they have is that in ten years they are allowed back into your life to tell the story of your survival.  They take no money and have done their work, so far, on a shoestring budget.  If you a are looking for a charity, I can't think of a more noble cause then The Legacy Mission.  I have included their link if you are moved to join the mission through donation.  http://www.legacymission.org/
• My family and I travelled to NJ for Thanksgiving to spend time w/ Staci's sister Kim and her clan.  We relaxed and ate great food.  It is a joy to see Ryan spend time with his cousins and get to know them.  They are growing into fine young men.   

My golf game is in the toilet but I endure.  I look forward to Christmas and my trip to Brazil.  Life marches on and I am Raging against the dying of light.  Love you all!

Picture I took of my morning coffee view at friends cabin in NH
Upper Suncook Lake