Equanimity

 Equanimity…

 It's hard to believe that it's been over a year since my last blog.   I don't know why other than to say, I'm just trying to live a normal Life under very abnormal circumstances.  I guess it's just important to compartmentalize and creating this blog forces a merger of the two realities.  That being said, a lot has taken place since we last talked.

 As it concerns the ALS, both arms are now are significantly impacted. I would estimate that the strength and dexterity are down to about 20% of full use.  Try to put on clothes, brush your teeth, get off the floor, get out of bed, wipe your ass or or operate a fork on 20%.  It's a good thing that I'm such a gifted athlete and maintained my six pack abs :-). My legs are now both impacted but I am still walking albeit slower and with increasing limits on duration. Breathing is becoming more difficult because of all the muscular atrophy that is occurring in the muscles that support breathing. My speech is still good but we are beginning to see some impact on the smooth delivery that I have become famous for all these years!  Eating and drinking have not been impacted supported by the fact that I mmaintaining my portly sexy bod. All in all, not bad for a guy that first started noticing symptoms four years ago this June.

 Over the past year or so, I've been keepingbusy spending time with family and friends wrapping up my career.  I traveled across the country for eight weeks with my brother Greg in a 38 foot fifth wheeler starting in Maine and ended up in the grand Tetons of Wyoming.  We were joined by my daughter Megan and friends from New Jersey, Doug and Rich.  White water rafting and seeing the wildlife skydiving  in Yellowstone was a gift of a lifetime.  I travelled the state of Florida with my daughter and son ending up in Key West Florida enjoying a 10,000 foot skydive.  Staci and I spent time in Nantucket Massachusetts,  Stowe Vermont, and Popham Beach, Maine.  We also enjoyed family time on Lake Winnepesaukee cruising around on our boat most weekends. Unfortunately, we had to sell the boat due to my increasing limitations.  I was able to work through October and officially retired on November 1, 2016. I'm lucky to have friends and family who have been willing to stay in touch, move closer, Travel to visit, and to just  pick up the phone to say hi. I can't tell you how much it means to me. Oh, and by the way, I seem to remember Tommy terrific winning another Super Bowl during the course of last year! :-) go patriots!  Finally, my favorite moments come when friends come together and relish in the memories of who we were and who we have become!

Be well my friends!

Jamey

  New Hampshire reunion!

'

RIPPLES of ANGER

"Life is a Capricious Business"

                                                                                                   Stephen King

 

Brazil with the Brazil 175 Ultra-Marathon Studs David and Kevin

And so it continues…… This past year brings up thoughts of Einstein’s ideas involving space and time.  I think about the past eight months and all that has taken place. When the year began, I was looking at a calendar that was chock-full of adventures, work demands, vacations, and various other activities.  I couldn’t fathom how we’d squeeze it all in.  As I anticipated and then enjoyed each and every moment, time seemed unhurried but now that I’m on the backside of an amazing seven months, it seems like it all took place in the blink of an eye! Much like it does when I look back at my 51 years in its totality.  The following are snippets and photo ops of some of these events. 

Crossing Finish Line 3 Days later

Adrenalin!

   Brazil -As I indicated in my previous blog, I traveled to Brazil for the better part of two weeks to see what I was made of and to figure out why someone would run for 175 miles over three straight days with little sleep through the jungles of Brazil.  During the race, I had the responsibility of crewing for these guys ensuring they had adequate food, water, clothing, and blister popping required to overcome the sweltering conditions of the Brazil Jungle (high 90’s and humid, humid, humid). Trust me, it's not as easy as it sounds as there aren’t 7-Eleven‘s on every corner nor does GPS work most of the time.   I also had the privilege of running the last 13 miles with these men up Mount Luminosa (26% grades) and saw them cross the finish line in 25^th and 26^th. Truly inspirational! After spending time with these special athletes, who travel from all parts of the globe, I was left with nothing but respect and admiration.  They all seem to have a back story and struggle with same things you and I do.  The difference is, however, they use their thirst for running as if it were a potion that magically fixes or at least staves off what ails them.  In other words, they use what’s right with them to fix what’s wrong with them. And so they run! There is some enduring lesson to be learned there.... I think?
 

Mount Luminosa

 

 

 

 

 

 

 

 

 

 

 

 

       Work continues to go well from an overall corporate and personal performance standpoint. It’s a bit of a personal struggle when it comes to travel, focus and, to some degree, drive. I can no longer type very well and things seem to take longer and longer. I’m utilizing Dragon for dictation and that seems to be helping out but overall skills are a bit degraded.

    ALS walk -I had the privilege of traveling to Jacksonville Florida to participate in an ALS walk w/ K9s For Warriors and my stepmother Joanne. K9s is a terrific organization that works with our wounded warriors “dedicated to providing service canines to warriors suffering from Post-traumatic Stress Disability, traumatic brain injury and/or military sexual trauma as a result of military service post 9/11. The goal is to empower them to return to civilian life with dignity and independence”. My brother Matt, who served in the Navy for 20 years, and his wife who also served both currently work there and are doing incredible work! http://www.k9sforwarriors.org/

 

The Prudential

• Staci’s 50^th - North End Boston. Well wouldn’t you know it… Staci turned 50! It happens to the best of us and in celebration of the gift of age; I booked a bed-and-breakfast in the north end of Boston. Sebastian and Kelly Grasso joined us and as you can well imagine, food and booze were on the docket!



Revolution Game!  Gift From Megan! 

Ryan wrapped up his sophomore year and is now enjoying the summer off. He’s driving, working and enjoying time with his buddies. The beach and rope swings seem to be the favorite activities.

• 
  
•  
•       Megan finished up her junior year at Bentley with flying colors. She is very active in school and sorority life. Somewhere along the line, she decided to turn 21 which officially stamps me as being old.  We took her into Boston for the celebration and forced her to order her first legal drink. It shouldn’t surprise anybody that she was moving a little slow from the previous night celebrations!

 

• My nephew Scott graduated from St. Michael’s in Vermont. Family from all over the country traveled in to witness this miracle! Great young man who is now ready to conquer the world.

 

Timberdoodle -Sometimes it’s the simple things that make us the happiest. My buddy Jim is a member of a hunting and fishing club located in the hills of Temple New Hampshire. Timberdoodle is a private club with acres of hunting fields and fishing ponds strewn throughout. Jim, Mel and I spent the weekend down there and caught fish galore. We cooked up some rainbow along with some filet mignon’s that ranked up there with best I’ve ever enjoyed.  Following the feast, we retired to a roaring bonfire, scotch and a couple of stogies. The best part was a major storm was rolling in but we had prepared by putting up a canopy that allowed us to sit by the fire despite the rain. When we retired to a one room cabin (basically a screened porch), we could hear the rain pinging off  the tin roof and one can imagine what heaven must have in store for us.

      4th at Grasso’s…. Sebastian and Kelly Grasso throw the best parties bar none! So anytime you head over there you know that you’re in store for a good time. The mix of people, plethora of food, spirits, pool and various other activities always seem to be just the right combination. This past Fourth of July was no exception! My good buddies Rich and Roy drove up for the festivities! 

  

  

In April of 2014, Staci and I sent out an email asking if anybody would be interested in taking a Rhine River cruise with us. Within a day, much to our surprise, we had 10 couples interested which led to 8 couples locked and loaded within two weeks of the original email being sent out. Mind you, this trip was no small commitment. So in early June of this year, 16 adventurers flew to Amsterdam to hook up with the S. S. Antoinette. We arrived three days early to acclimate and to get to know one another. Over the course of the next week and a half we traveled through the Netherlands, Germany, and France ultimately ended up in Switzerland. This group not only took over the ship but set many consumptions and behavioral standards that the ship’s crew and passengers will not soon forget. From Amsterdam canals, red light district, castles, beer gardens, cafés of all sorts (wink wink), bike trails, spas, vineyards, restaurants, wine tasting, dancing, pools, movies, museums (van Gogh), and other activities too numerous to mention, we did it all and have the scars and brain cell deficits to prove it! I think we will share a special bond for the rest of our lives.

 


 

• Our standard vacation for the past 10 years or so has been a week on Lake Winnipesaukee New Hampshire. This year was no exception to that tradition. It is a week of relaxing and enjoying the sounds of Lakeside living. The haunting calls of the loon, hoots and hollers of kids tubing, or the late-night sound of a crackling roaring fire all conspire to unplug you from the day-to-day demands of life. Friends and family come and go throughout the week which makes it all the more special.  Doug and his wife Liz, my friend since kindergarten, came up from Jersey with two of their kids along with one stray kid.  Julie, a friend since grade school, came over from Maine for the day.  I love these anchor moments.  
  

 

 

 

       One year anniversary of my dad’s passing came while we were at Winni.  This topic is especially difficult for me to come to terms with because it reminds me of my own mortality. I miss him and wish I had more time with him to discuss many of the things that went unsaid. You know what they say about absence makes the heart grow fonder. It is true in my case and, from time to time, think of him and the times we had together.

        State of My State - In July I had my one year appointment at Dartmouth Medical Center. As I’ve stated before, the deterioration in my left arm continues and the disease is advancing to my right arm and left leg. I’m dictating this blog because I can no longer type. I get tired a lot easier but am trying to stay active and continue with my long walks. It’s limiting the activities that I love so much such as skiing, wake boarding, golfing, and yard work. I remain positive but as you can well imagine there are days that are just not good.

On the psychological front, one of the things I struggle with is that of time perspective. I want to plan for the future but feel myself trapped in the present. I had dreams of advancement at work but no longer put much effort into those pursuits. Perception is reality; I often feel like the line from a movie that tells the story of a death row inmate. In the movie, when he leaves his cell for the execution chamber, the guard can be heard saying, “Dead Man Walking”. People just look and treat you differently when they hear of your diagnosis. At work, I feel like I am no longer really in the game.   I always thought of purchasing a second home or where I might retire but struggle with the fact that it’s probably not in the cards. I try to stay engaged but it is difficult to move beyond thinking in six-month chunks of time. Where will my body be in January of next year? Will I be able to drive and continue to work? The doctor told me that it appears that I have a slower progressing form of ALS but what does that mean? When will it impact my walking, eating, breathing, or speaking? I know I have to live in the moment but, goddammit, I feel like I’m sliding into irrelevance. I’m angry that the future is not there in my mind.  I am cognizant of the fact that none of us are guaranteed tomorrow but I want the uncertainty of the future back because it is the uncertainty of one’s life expectancy that leads to optimism of a future of retirement and old age. I feel angry that a significant portion of my uncertainty of a long life has been stolen. I want and need to believe that I have another 30 years because that is the fuel that stokes the fires of drive today.

Now, I know that I’ve previously written about the need to live in the moment and the beauty of the mundane. It is still true and I’ve experienced some terrific mundaneness. I draw strength from these moments as anchors against the tide but as time passes and body erodes, I sometimes feel the anchor giving way. I want things and relationships in my life to be perfect now! Unfortunately, that is not how life or people work and I get angry and lash out. Not often but it happens. I long for the normalcy but I’m afraid it is gone forever. Now that’s a rant! I promised, in previous blogs, that I would be raw and try to express my true feelings. Well there you have it. It is small part of what goes on but it is there, always simmering below the surface.

 I am reading a book that my sister-in-law Kim gave me entitled Consolations, “The solace, Nourishment and Underlying Meaning of Everyday Words”. In the book there happens to be a chapter on the word anger.  “Anger is the deepest form of compassion, for another, for the world, for the self, for a life, for the body, for a family and for all ideals, all vulnerable and all, possibly about to be hurt”. My anger breaks the surface because I become overwhelmed with the feeling of powerlessness and vulnerability. I want to fix this thing and know that I can’t. I want to know that I’ll be there for my family but probably won’t. I want my relationships to be perfect today but know that is not how life works. I want to feel normal but can’t. I want to talk about things with those I love but often cannot find the right vehicle in which to do so or maybe, it’s just that I am not properly equipped. The bottom line is these emotions are so raw and because I love life and those in my life so much my love sometimes grows angry.

The reality is that I am doing as well as can be expected. Can’t change what is unchangeable. My rant was just me getting in touch with my own feelings which, up to recent times, were unused muscles that had atrophied.  :-)  I am told, by my therapist, that you can’t bottle up your emotions so I am emoting just a bit. I am sensitive...Hear me roar!

 

Legacy Mission Video

http://www.legacymission.org

 

Not letting you Bastards off the Hook!

 

 

 

One of the toughest things to do when you receive a life-threatening diagnosis is giving yourself a voice. A voice to discuss your feelings, thoughts and message in a respectful and dignified way that allows you to leave a lasting "Legacy" for those you love. Legacy Mission does just that.... they are a non-profit that has been around for a little over a year and is giving a forum for children and adults to express themselves on a topic that most of us have a difficult time discussing to any great measure. The individuals at Legacy Mission are tremendous people to work with and I give thanks, everyday, that they came in to my life when they did. The following link takes you to their site where you can find a vignette, one of many that we have worked on, that I thought was appropriate to share at this time. 

There are many more videos that will probably never be seen until such time that I am no longer here.  Reviewing these and editing them is very difficult for me both from a reality and vanity standpoint.  My hope is that these vignettes will allow me, in some measure, to be involved in the lives of my kids, broader family and friends as they all grow older and experience the full richness of life.  Without the lows...there can't be the highs.  The saddest truth, for me, is time does fade our memories of passed loved ones.  My thoughts, captured in video is my narcissistic attempt to not let you bastards off the hook that easy.   
 

"There comes a time in the affairs of man when he must take the bull by the tail and face the situation."
                W.C. Fields

http://www.legacymission.org/

See More

 

The Legacy Mission -

Creating A Living Legacy For Loved Ones

legacymission.org

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