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

Life's Inexorable March

Joanne & The Boy's At My Dad's Memorial Service Lunch

 

 

 

 

For those of you born after 1980, inexorable basically means " it is what it is".  It has been two months since my last post and the one thing that you learn about being diagnosed with ALS is that life doesn't stop for your petty bullshit.  In the last two months the following has occurred.....

 

• I turned 50
• Went to Nantucket to celebrate my 50th.  (Staci, Jamey, Seb & Kelly)
• Went to Mexico to celebrate my 50th.  Yes...I am a bit of a narcissist (Jamey, Staci, Megan, Ryan, Greg & Cindy)
• Ryan has his drivers permit and is chauffeuring us around.
• Involved in a serious boat accident hurting someone I love like a son.  This is his story so I won't get into details but suffice to say, he is on the mend. 
• My dad  has to go into the hospital to overcome complications he had developed during his two year battle.  Three days later, he is in hospice surrounded by family and friends.  He passes away in Joanne's arms 8 hours later. 
• My Aunties (Dad's sisters), an uncle, and a couple of my mom's sister in-laws (my aunts), spent the week together during the hospice and memorial service.  Sad Time!  Great Time! Great People! 
• Megan returned from her LA summer intern just in time to say goodbye to her grandfather.
• Vacationed on Lake Winnipesaukee with friends and family to regroup and reconnect.
• High School buddy's, Rich (his girls Madeline and Sophia) & Roy, came for a visit and we enjoyed busting balls for the weekend.  A bit of booze was involved.  
• Megan left for Spain for her study abroad semester. 
• Work Continues
• ALS Ice Bucket Challenge continues! 

 

 

 

 

Mexico!

 

 

It makes my head spin to think of all that has taken place inside of 60 days.  The inexorable march!  I remain upbeat, but have my bouts, as Staci will attest, with bad attitude and every so often crushing fear of what will come next.    I get frustrated when I can feel the disease progressing in other parts of my body and can't do anything about it.  I get frustrated when I can't wakeboard anymore.   I get jealous and mad that life will continue on its merry way when I am gone.  I get frustrated when it becomes increasingly more difficult to type.  I get renewed when I remember what I have been blessed with and when I remember how much I love my family and friends.  I get resolute when I remember the courage, strength, grace, and wit in which my Dad passed away.  I get sad when I realize Megan will be gone for 5 months.  I get happy when I know I will be spending a week at the Cape with Ryan flying kites, biking, or playing spike ball on the beach!  I feel tremendous pride in seeing who my kids have become as people and what they have accomplished.  I feel love knowing that Staci is there and will always be there with me and for me... warts and all.  In other words, Life!  Without the lows, there wouldn't be the highs.  Thank God for the challenges of life for those are the things that truly shape us and make us! 

Losing my Dad sucks, but we all will eventually get chased down by death.  As they say, it is not how long our race turns out to be, but rather how we run the race and I can attest to the fact that he ran one hell of a race.  The following is what I wrote and presented at his memorial service: 

Our Dad

What I am about to say is going to sound oddly out of place in the long shadows of my Dad’s passing, but this week has truly been  wonderful and profound.  The word Sad doesn’t even come close to capturing the loss that Joanne and our entire family feels at this time.  However,  spending time with family and friends from near and far, talking about my Dad hammers home the realization of what a special person he was and will always be in our hearts and memories.  To the end, he was driven and decisive in his directives to take care of Joanne and to take care of each other.  He knew it was time and had bedside chats with all of the “boys” as we are always referred to in the collective.  He spoke with his grandchildren and held on until he could have final words with his sisters, Myra and Karen, who were in route from the people’s republic of California and Washington State.  In short, our dad passed with style, grace, wit and humor.   

Our dad was not long on the touchy, feely stuff when it came to us boys.  That wasn’t the case when it came to Joanne where we often had to tell them to “get a room” but when it came to the boys it was old school.  He could be tough but we all worked our butts off to earn his love and respect.  Our dad was driven and rose through the ranks of the corporate ladders rapidly.  Our dad was funny, witty and was always the focal point at any gathering.  Our dad’s parenting style was one of if it doesn’t hurt;  you probably didn’t learn the lesson.  I remember a time when I was 8 years old, in Little Rock Arkansas, when all the cousins went down to the lake for cliff jumping.  Going up to edge of the cliff I developed significant reservations, I turned and went back to my dad and the uncles where my manhood was being discussed and questioned.  I am eight mind you.  Reluctantly, I went back to the cliff’s edge and the next thing I know I’m being pushed off.  Lesson learned.  I remember our house was always the neighborhood hub.  My Dad loved to make ice cream.  He would have us churning it for hours and ordered us to keep just the right amount of rock salt on it so that it stayed at the perfect temperature.  The only problem was that the only thing we ever got was a milkshake.  It ticked him off to no end but we didn’t care because it was the best milkshake I can remember ever having.   I remember our dad attending hundreds, if not 1000’s, of soccer matches.  I remember our dad buying a motorhome and driving us across country to see family.  I remember our dad sitting by our mother bedside during her battle with cancer.  I remember when she died how devastated he was but also how pragmatic and strong for all of us.  We must go on, I remember him saying.  We did go on with all the bumps and bruises that life had to offer.  It has been a great ride and we honor him by going on in his tradition.

I think the one thing that will ultimately define our dad, however, is his love and dedication to Joanne.  Picture this scenario in your mind for a moment!  Dad starts dating and eventually the gauntlet of fire has to be faced.  Bring the young lady home to meet the grandfather, four boys in full teenage hormonal glory and a dog.  Feet don’t fail me now!  We never saw them again.  Just when we thought the prospects for the old man were dim, a jet black haired Italian babe entered the scene.  She was an accomplished math nerd who surely was afraid but the love of our father allowed her to push past her fears.  As providence would have it, she had already been inoculated from the chaos of our family because the only other crazier family was her own.  I say that with the utmost respect and love because  Joanne’s family is our family.  The depth of their love was always on display but no more than what we witnessed in the final hours of his life.  His directives to care for Joanne.  If you asked him if he wanted a kiss from Joanne, even in his weakened state and in the sweetest tone imaginable, he would say Sure.  He kissed her to the end.  In his final moments, he repeatedly called Joanne, Joanne, Joanne! 

Let me end by saying this….  our dad’s last days were spent in the same hospital that my daughter Megan was born in.  Most people believe that life is the opposite of death.  I believe they are one in the same.  We all have our own books of life where there is a beginning and an end.  It is up to us to write the chapters in between.  If I could have half of the quality chapters that he has had, I would consider my life to be a tremendous success.   I believe that my Dad’s book of life,  both personally and professionally,  is one hell of a read! 

Thank you all for being a part of his life!

Masingill Women Folk

 

Grandkids Plus Nana

 

 

 

Go ALS Ice Bucket Challenge

 

http://www.alsa.org/donate/

Jamey






 

No News Is Good News

Happy 50th Birthday to me!  Nantucket with our Fabulous Friends!

I really don't have much of an update except to say that my doctor at Dartmouth reported no progression since the last exam.  The exam is not, what I would call, truly scientific but more observational. Nevertheless, I'll take what I can get! I did have an episode where I passed out and was taken to the hospital.  Stress, activity, travel, medicine and yes booze, all combined together, led to a late night visit to the ER.  No one ever accused me of being a genius! 

June marked two significant milestones.  I made it to 50....yea!  June also marks the one year anniversary of when Megan first noticed the early symptoms of ALS.    The thought of it still gives me chills.  One year in the books and hopefully I'll be able to log many more so that I can beat the bell curve on this unwelcomed life partner of mine. 

On another note, I have a  friend who has been impacted by ALS when his grandmother was diagnosed and ultimately succumbed.  He does a ride to raise awareness and money for ALS research.  The reality is that at any given time, due to the short life expectancy, there are 35,000 Americans alive and dealing with this disease.  Not a lot in the overall scheme of things, when you compare it to other more notable diseases, and as such does not get the attention, research and ultimate funding it deserves.  We need a Michael J. Fox  in our camp...just kidding.  I have attached his story and link if you are so inclined to support him in his 3 day 270 mile trek.  I have to admit, it is difficult for me to read. 

Hello,

 

I hope this letter finds you well.   This summer, my team and I will ride 270 miles by bicycle in the ALS/TDI Tri State Trek to raise money and awareness for ALS, a disease that claimed the life of my great grandmother.  ALS TDI is an organization that is committed to ending Amyotrophic Lateral Sclerosis (ALS) through the funding of cutting edge scientific research. ALS, commonly known as Lou Gehrig's disease, is a neuromuscular disorder that attacks and destroys the body's motor neurons. As these are destroyed, the brain becomes unable to send messages to the muscles which then weaken and lose their ability to move. In time the muscles atrophy and the person becomes unable to walk, talk, eat, and eventually breathe. Throughout the progression of ALS the brain is completely functional, and a person is fully aware of what is happening leaving the person trapped in his/her body.  There is no treatment and no cure for the disease, which typically proves fatal in two to five years. Scientists are still unsure as to how or why 8,000 Americans are diagnosed with the disease each year.

 

My story: In 1992 my great grandmother Mary Agnes Fortune (Gigi) passed away after a long and courageous battle with this horrific disease.  In 2011 I joined Team Easy Riders (8 riders) and together we were able to raise over $15,000 to support ALS/TDI research. This year, after a 2 year hiatus, I am returning to the trek to support a family friend and father of 2 who was recently diagnosed with ALS. Your support means so much to me and to all the families that have been affected by this terrible disease.    

 

                In support of ALS TDI and the important work they do, our team has committed to a lofty goal of raising $3600.00. Contributions of any amount are very much appreciated no matter the denomination. We will train to complete the 270-mile ride in three days. The ride is a challenge and my training is intensive, but ALS demands our attention and I will do all I can to help.

 

Here's how you can help:

Donate! It’s easy

 

Online:    http://tst.als.net/TeamFatTire  

               

Old School:  Checks can be mailed to me (please make it out to ALS Therapy Development Institute)

                                                Ryan Paveglio

                                                                24 Copley Ct

                                                                Auburn NH, 03032

Vortex of Normalcy

                               Running the race of Life with Death hot on my heals!

Well...Well....Well!  It has been almost two months since my last entry and it is amazing how ones perspective on time changes when faced with an uncertain timetable.  As I have said in previous entries, I fully intend on not dying with this diagnosis and am dedicated to living life as normal as possible.  An interesting dichotomy is created when you long for normalcy, after numerous months of turmoil, while at the same time a vortex of reality is always swirling around in the background.  In the past two months, I have entered this space.

Since I last checked in, I have been working, skiing, golfing, Red Sox games, boating, movies, yard work, Ryan's Lax games, walking, meditating, napping and numerous dinner rendezvous with friends from past and present.  I travelled to Chicago for a reunion with 5 high school buddy's and my brother Greg.  The first night of the trip,  I went to Wrigley with a couple of my long term colleagues, turned friends, for a Cubs v.s. White Sox game. The next night Greg, who turned 46 that very day, and I went to Comiskey for a rematch of the aforementioned teams.  We celebrated Greg's birthday in fine fashion.  When the high school boys arrived the following day we golfed, ate(too much), drank (too much) and just had a wonderful time busting balls and recalling past exploits.  My favorite was the karaoke session we had with a live band at a bar where the average age was 26.  Five 50 year olds singing Jenny Jenny by Tommy Tutone 867-5309 is quite a spectacle to behold.  By the way...several of us have packed on some lbs. and the hairlines have receded a smidgen. Despite time, distance and maladies, these childhood friends will always be friends!

The following week, I had to get Megan and her 127 pounds of luggage to LA for her summer internship in a downtown law firm.  I felt like the porter from the movie Titanic trying to get Kate Winslet's luggage aboard for her passage across the pond.  We got there ok and settled her into her new digs followed by an exploration trip of the area.  She is a block away from the beach...need I say more.  We attended game 6 of the LA Kings game against the Ducks (Kings won), hobnobbed with the rich and famous, and had multiple dinners with wonderful friends. We took a friends yacht to Catalina Island seeing scores of sea lion and pods of dolphin. The cove we pulled into was magical and the island restorative. When we arrived back at the docks from Catalina, we were met by Megan's grandfather (Geoffrey) and wife (Barbara).  We then settled in for a nice dinner at the Yacht Club.  A terrific way to end the day!   Spending time with family and friends, people of such fine qualities, puts a lot of things into perspective and reminds me of why the life each of us are given is such a gift.  As a father, there is nothing more precious than getting the kind of one on one time I got with Megan during this trip.  She is a great daughter who has turned into a terrific young lady and who has somehow turned into a great friend.  We said our goodbyes Sunday morning  and I arrived back home at midnight. Back at work Monday morning.  So tired!

So how am I really doing?  Physically, things are pretty much the same.  My left arm continues to be problematic with the loss of function and cramping that is now occurring on a much more regular basis.  I am sleeping fine.  I can feel muscle fasciculation in my left knee but it has not worsened in the last month or so.  I feel more fatigue than I ever have in my life and now take regular naps along w/  meditation sessions to combat the mental and physical aspects of this disease.  I remain hopeful that it will continue to be slow progressing.  Mentally, as described, it is a continual vortex that  swirls around the everyday normalcy of life.  The first couple of months, I was caught up in the crisis and the outreach from family and friends was ever present.  As things settle down, things go back to normal and people go back to their lives.  This is the way things should be and how I desire them to be but it still leaves me, at times, isolated in my thoughts.  Staci and the kids have been terrific and give me the strength to live for today for I know what will come but know not when! 


Sox Game with the Family

 
Wrigley With Ray & Jason
 

 Comiskey with the Birthday Boy!
 

 


High School Slubs  "Class of 82"

  

Throw back.  Go back the first pic of the High School boys of today and see if you can identify Mike, Jamey and Craig from yesterday! 







Dinner With Some Great People In Santa Monica!
 

Dinner At LA Kings Game

 

First Day Of Work

 

 

 

Catalina Island

 

Summer Comes To New Hampshire...Memorial Day! 

 

 

Katrina is the Queen of the Selfy! 

Trapped In My Head

Another week and another piece to the puzzle comes together.  Staci and I travelled up 89 to Dartmouth Medical Center in Lebanon, NH.  It is truly a gorgeous drive with a brilliant blue sky serving as a backdrop for the snow covered mountains, valleys, lakes and streams.  All of which tends to forcefully remind me how truly blessed I am for the time and space I have been granted.  Our exposure to the facility and meeting with the doctor went well enough.  We both agreed that this would be our base of operation for treating this disease as it progresses.  The parking definitely beats Lahey's!  Can you say free and readily available.  One of the things that startled me most during our visit was seeing all the people in the waiting area with advance stages of various neurological disorders!  It is scary to think that many of these wheelchair bound people were, just a few months or years ago, walking around as freely as I was on this day.  A stark reminder of the cruelty this disease will eventually unleash!

Staying positive and tackling each infirmity as they come, seems, to me, the only way to proceed.  I had many coaches who always said don't get ahead of yourself.  Focus on today's game and worry about tomorrow's game.....tomorrow.  Easier said than done!  I very often find myself trapped in my head thinking about what's next and conjuring up all kinds of unpleasant scenarios.  I wake up in the silent of the night and have nothing but my thoughts.  I find myself drifting off during the day and thinking what ifs.  Staying busy is the best coping mechanism I know.  I do crossword puzzles, listen to books during my commute, ski, play ping pong with Ryan, listen to Staci yap, spend time with friends or just watch TV.  Anything to keep my mind from drifting into dark places.  I realize this is all coping and not truly dealing.  Maybe this whole thing is, in some perverted way, a key to a deeper existence and self awareness.  I hope so!  Staci and I head to counseling next week to try to sort through our thoughts and feelings.  While I am looking forward to it as much as going to the ballet, I do believe that continued honest dialogue around emotional, financial & spiritual matters will be critical if I am to get through this with my dignity intact and if Staci is to get on the backside of it whole in mind, body and spirit!

Video Link:        https://vimeo.com/91219442

Trip to Chicago with some important people in my Life!

 

Financial Uncertainty

This past week has been a difficult week, not so much physical, but more from a psychological perspective.  As a man, you always want to make sure you do your job as it concerns your family.  Since my diagnosis, I have had serious consternation about the long-term financial picture.  I have always despised thinking about adult stuff like wills, long term disability, trusts and life insurance.  Remember, in my mind, I am still 25 and just suffering from early male pattern baldness.  After several months of not wanting to deal with it, Staci and I spent the morning preparing for the meeting with the financial planner.  Truth be told, I broke down and cried looking at all of the end of life documents.  It's one thing when it is a suppositional future event but when it is a concrete reality, words and dates take on entirely different meanings.  We got through my breakdown and showed up at the financial planner.  We spent 4 hours and got through it all.  Without getting into the details, we walked out of there feeling very, very good.  We are lucky in the sense that we found a great team of financial planners a couple of years ago who have gone above and beyond.  They are creative but more importantly, truly care and are great people.  True to form, when we completed our work, we convinced them to go downstairs for a late lunch and cocktails.  In the final analysis, I walked out of the meeting feeling that I have done my job as a man and that the family will be fine! 

Video of the day:  https://vimeo.com/90276652

I don't want this to be a commercial for anyone but if you want the info on our financial planner reach out to me or Staci. 

 

 

Just Another Day

The last few days have been a true gift.  The outreach, as result of my blog, has nourished me and my family in ways that I can't begin to describe.  Thank you!  The best feedback I received was from people that were reticent to reach out to me and talk but were very appreciative that, through the blog, I provided insight into my world and the ordeal that we are all dealing with in some way. I get it! It's not easy for some, myself included, to talk about such things so I am glad the blog helps.  I do this as a means to work through my thoughts and feelings but some days I choose not to have thoughts or feelings so I will not endeavor to make this a daily diatribe.  For after all, we all have lives to live and shit to do. One of my high school friends expressed this lovely sentiment today..... "it isn't about the number we reach but is how we enjoy reaching the number"  Some would argue that I sometimes over enjoyed but that is a debate for another day! 

Video Link.  https://vimeo.com/89664105

 

Think Boating Season!

It's a Dog's Life

Vanity requires me to comment on my fat face found in the video released yesterday.  Doctors orders!  Seriously, I am under orders to pack a few on and to avoid weight loss.  So while the six pack may be gone, I now have beautiful love handles but will pull up short of getting man boobs.

I was out with the dogs and a lot can be learned from the way they conduct their lives.  If the linked video doesn't demonstrate how to enjoy the mundane of life then I don't know what does. 

 https://vimeo.com/89507323

Pswrd:  jamey50

Why

One of my favorite people in life sent me an e-mail thanking me for the blog and for giving a peak into what I am thinking and feeling.  My response to her was as follows:

 

 "I don’t know why I am doing it other than I am inexplicably pulled to do so.  It helps me work through things.  The truth of the matter is I really don’t know how I am doing.  You try to cope but coping is not dealing so maybe that is what I am trying to do.  I have said it before and I believe it to be true, this disease, in the long run, is more about how it impacts others in my life than it is about me so talking about it in a meaningful way will hopefully prove to be a healing activity.  Love you too!"

 J

I have attached a link to a video blog  (with much trepidation) that I recently completed following my John Hopkins appointment.  I have done several video blogs since January but this is the latest. Sorry that it is a bit long at 8 min. Please be kind!   Just follow the link and put in password:  jamey50 

Video:  https://vimeo.com/89457279 

 

Why Not Me?

This is, by no means, the beginning of this journey but I now feel the need to start documenting what has transpired since June of last year and the emotional rollercoaster that has accompanied the journey.  Today is St. Patty's day, March 17, 2014, which puts the ALS clock at approximately 10 months.  Also, don't take the title of this post to be morose but rather an acute recognition of what we all must come to terms with at some point in time in our lives.  That tomorrows are not guaranteed and that the volume of mine are now certainly less than I had hoped!  That I intend to live whatever tomorrows I have left with love, optimism and vigor. The title is, therefore, more of a "call to arms" than a fatalistic outlook on what is to come.  Rest assured, it will get ugly and there will be down times but how soon and how ugly no one can predict.  In the meantime, for me the joy of life is found in the mundane of the everyday; dinner with my family, texts and selfies from Megan, teaching Ryan to drive, walking the beach, reading the paper with a cup of coffee, a hug from Staci, movies and books, driving to work, cleaning the garage, lounging in the hot tub, dinner club, skiing with Ryan and friends, ping pong, college financial aide paperwork (that one might be a stretch).  You get the point.  I hope to do a bit of travel with my family but the real solace for me will be found in extracting every last drop of joy out of the mundane because that is the source of true happiness.

I don't want to get into the details of the disease but I have included a link to a site that does a nice job in explaining ALS.     http://issuu.com/alsassociation/docs/guide_to_living_fuller_life_with_als?mode=embed&layout=http%3A%2F%2Fskin.issuu.com%2Fv%2Flight%2Flayout.xml&showFlipBtn=true

My symptoms were first noticed last June coming home from a day on the boat.  Megan noticed that my left tricep was twitching.  We laughed and found it amusing because it looked like something trying to get out.  I didn't think much of it and thought it was due to muscle fatigue from the days events.  It continued for several months but when I starting to notice some atrophy in my left hand and slight loss of function in August, I sought out my doctor.  It was thought that the pin in my elbow or some disc herniation may be the cause and I began to undergo various physical evaluations and numerous tests that included x-ray, MRI of the neck and several EMG's of the arm and whole body.  When none of these pointed to any mechanical cause, an MRI of my brain was immediately ordered which I can tell you was one of the most nerve racking things I have ever gone through.  The potential findings are very scary and armed with that knowledge, getting stuck in that tube with all those thoughts swirling around was butterflies in the stomach time. 

The Brain Scan, surprise, came back normal.  Of course, that is the good and bad.  ALS is a clinical diagnosis which essentially means that with time and excluding all other possibilities, your left with this turd of a diagnosis.  I received the first diagnosis on January 30 which rocked my world.  While I suspected ALS for a couple of months, there is nothing more devastating than sitting across from a doctor who is telling you that you just hit the shit jackpot of 1 in 100,000.  

I barely remember the drive home and when I got home, we had to tell Ryan.  As chance would have it, he had been in a school assembly a month prior with a young individual who suffered from advanced stage ALS.  He went right there in his mind and it was heart wrenching for me and Staci to see him come to realization that he might not have his father around.  The next day all three of us drove to Bentley University under the pretense of taking Megan to lunch.  As soon as she got in the car, she new something was wrong.  When I explained what was going on, she broke down as did the rest of us.  I am misty eyed just recalling these memories.  We all drove home and spent the weekend together.  Cried, talked, ate, cried, talked and ate for the rest of the weekend .  The conversations and hugs of that weekend serve as anchors for me every time I get down.  The expressed love and sorrow moves me to depths of emotion that I have never experienced.  Ryan's words, help around the house and ping pong matches truly moved me.  Megan reaching out to hold my hand telling me that she loved me while laying on the couch head to head watching a movie is something that I will never forget and will always draw strength from for the rest of my days!  Staci is and always has been the rock.  Without her I would be a mess.  Her love, strength and support through all this gives me a sense of calm and certainty that we will get through this and that things will be alright even when I am gone.  The immense outpouring of love and support from friends and family has been humbling and gives me further confidence that all will be OK. 

A second opinion at John Hopkins was up next and scheduled for March 4.  They are the epicenter of ALS which essentially means that they are the smartest folks in the country at knowing nothing about the disease. We drove to NJ to visit family the weekend prior to the appointment.  While in NJ, a snow storm moved through the region forcing us to leave early to Baltimore so that we could beat the storm.  We spent a nice couple of days and nights in a cozy hotel before the appointment.   On Tuesday, March 4th , we met with Dr. Ostrow who spent 3 hours evaluating me.  Staci and Kim Beans (my friend and advocate) were there and he couldn't have been more thorough or kinder with his time and words.  Afterwards, I underwent a two hour EMG being electrocuted and poked in every muscle of my body.  Unfortunately, the diagnosis was confirmed.  James Mattison Masingill...born June 8, 1964 has Amyotrophic Lateral Sclerosis or Motor Neuron Disease.  There is no cure and no treatment.  Trials, to date, have been failures and there doesn't appear to be anything on the horizon.  I am on the one medicine that has proved to slow the progression  by 10 % but it is not a cure. 

I told my family that the best thing they can do for me is to stay focused as I am attempting to do to the best of my abilities.  I will continue to work and play for as long as I can!  One of my regrets in life is that my family never dealt with the death of my mother when I was young and I am endeavoring to be open and honest about everything I am and will go through in the coming months and hopefully years.  We have to talk about what is going on in our hearts and minds and deal with our emotions. 

Today is St. Patty's Day!  Tonight I will attempt to extract the joy out of a pint or two! 

More to come......