By Kevin Flanagan
BSD Senior Staff Writer
They say that one’s real wealth is measured by the number of people they can say is a true friend throughout his or her lifetime. It is also said that a person’s real character isn’t revealed until they face a crisis. With that in mind, it is easy for me to say with certainty that our old family friend, Steve Pickett, is a wealthy man. And, as you will see if you read on further, he has a level of character that we should all strive to emulate.
Just a few months ago Steve, known as “Pic” to his friends, was your average middle-aged guy. A proud father of a son and two twin daughters, and a successful business man as the owner of two thriving Snap On Tool franchises; he also serves as president of the Club National, a social club in his hometown of Brockton. He had just finished renovating his house on Aspen Road in the Brookfield section of the city, the same house he grew up in as a child, and was looking forward to continued success, both personally and professionally.
On Friday, October 30, 2015, that all changed. That was the day that Pic was told he had ALS.
ALS, or amyotrophic lateral sclerosis, is a brutal disease. It targets its victim’s muscle groups one by one, slowly shutting them down until the sufferer is rendered completely disabled, unable to walk, talk, eat or swallow. Eventually, it takes away their ability to breathe, and death comes by suffocation.
The only thing it doesn’t take away is the victim’s mind and sensory perception. The sufferer not only knows what is happening to him/her, they feel everything; which is perhaps the most brutal aspect of this terrible affliction.
Faced with such daunting news, many of us would simply be resigned to our fate and let the disease take its course. That is where the character of the man comes shining through.
Pic has chosen to fight, and he is not alone.
ALS Knights – taking the fight to the public
Kevin Gosnell is the founder and owner of T&K Asphalt Services in Whitman, a very successful paving and sealcoating company that services all of New England. A father and husband at the tender age of 47, Kevin was diagnosed with ALS in the spring of 2015.
Never one to not have a plan, Kevin took his business skills and tenacity and turned them towards creating an organization that, quite frankly, didn’t really exist in the fight against this deadly disease. It was shortly after his diagnosis that the ALS Knights were born.
Their website describes the organization’s goals as follows:
Kevin created the ALS Knights to unite the friends and family of ALS patients to work together to raise awareness and funding for Care and a Cure for ALS. As an ALS Knight you will be called on when needed to support any ALS activities until a cure is found!
“One thing that rings true is that there are no real treatment options. I am working to find a path that can help ALS. Only God knows the productive time I have left so I want to do the most I can as quickly as I can! I was blessed with a positive mental attitude. I believe God gave this disease to me so that I can help find a treatment for this awful disease! I will do all that I can to make that happen!”
Just a week after being diagnosed last fall, Pic was meeting with Kevin to join the fight. As a native Brookfielder, getting into scraps comes natural to Steve. However, as both he and Kevin know, this is a fight about saving lives, and those lives, almost certainly, will not be their own.
Back to Brookfield
I will tell anyone that will listen that there was no better place to grow up than the Brookfield section of Brockton in the 1960’s and ‘70’s. Teaming with kids, there was always a game to be played, a group to hang out with, or a friend to while away a summer’s day in some neighborhood pool playing Marco Polo.
Being the youngest of six, a full six years younger than my nearest brother in age, I was kind of that tag along kid whom everyone had to deal with being part of the group – an anchor of sorts – unless they wanted to face the wrath of my mother for excluding me.
That being said, there were two family members that always took that extra step to make sure that I never felt like I was forgotten – my brother Bobby, and my cousin, David Galvin – who happen to be two of Pic’s tightest friends.
Every year before baseball season started, my brother Bobby would make sure that I had a new glove and bat to start the year, knowing that if he didn’t provide it, I would likely have to use yet another hand me down. Often times as a teenager, when I played in the Babe Ruth League for the Avon Townhouse at North Junior High, I would see him perched on the berm overlooking my post in left field, one of the very few spectators taking in the game.
My cousin David was a frequent visitor to my Little League games as well. I will never forget my first all-star game that I played at Brockton High School against the West LL team; I came to bat with two on and two out with our team trailing by a run. I had just drilled an 0-1 fastball down the left-field line that landed foul by about two or three feet. I can still hear Dave yelling, “watch out for the curve” before I helplessly swung and missed ending the game on that very pitch.
On Friday night, January 15th, a group of old friends gathered at Tin Ray’s, a former dive bar turned into a family restaurant by fellow Brookfielder, Joe Murray. Nicknamed the “Lyin’ King” by Pic – with tongue firmly planted in cheek, of course – Joe is the neighborhood resident raconteur. He always has a story to tell you, whether you have the time to listen or not.
It is in this setting, surrounded by family and friends, the definition of brotherly love is on display for all to see. Despite what the DNA may say, these guys are brothers. It is evident to any eye that observes them together; that anyone of them would move heaven and earth if they thought it would help their friend.
As the pizzas piled up along side the ever growing stock of empty beer bottles, the stories began to flow freely. Without a doubt, the best line of the night came from Pic when he said after yet another story from Joe Murray finally ended, “Go burn my cheeseburger, will ya!,” followed by a roaring laugh that seemed to last all evening.
Words cannot describe what it feels like to be in the presence of people who share a lifetime of memories. As Bruce Springsteen once wrote, “nothing feels better than blood on blood.” It is the blood brotherhood that binds them together in this fight, and makes nights like the one we had in the middle of January possible.
As I got in the passenger seat of my wife Nancy’s car for the ride home to Raynham, I couldn’t help but think to myself, how many of these nights did we have left? That was soon followed by the anger of knowing that with the proper funding, such thoughts would not be necessary.
Taking it personally
In the interest of full disclosure, this story is personal to me. Not only because I have known Pic practically my whole life or that he is close friends with members of my family. It is because I have lived this painful story before, not due to ALS, but to polio.
In an email exchange I had with my cousin David while putting together this piece, he captured my thoughts exactly. He wrote, “This situation reminds us both of Uncle Bob, your dad, who was afflicted with Polio his whole life. Polio also led to muscle weakness and immobility. Polio had widespread epidemics so the awareness was less of an issue, with so many afflicted. But the country had massive donations, drives and large research efforts, and now polio is a preventable disease with a vaccine. That is what we need for ALS and our friend Steve!!!”
For those of you who haven’t – and I am sure there are many of you that have – had to deal with one of your loved ones having basically been given a death sentence, let me describe, as best I can, what it is like.
Each time the cruel disease takes something away from them; it takes something away from you. Each time they suffer a setback or their quality of life lessens; so does yours. As the disease demands that their world gets smaller, your world gets smaller too.
As a son, I can tell you from experience, that when all you can do is hold your father’s hand, look into to his eyes and talk to him knowing he can’t talk back, it is the most helpless feeling in the world.
What pisses me off about this particular disease is the fact that the lack of awareness and funding are the only reasons that stories like this are being written. It basically boils down to ignorance and greed.
And I admit, until I was recently personally affected, I was ignorant as well.
During the hour or so I spent with Pic on the phone discussing his story, he talked about a speech he had given at an ALS Knights fundraiser at Lombardo’s in Randolph in early December. In it, he compared the current ALS struggle to the AIDS epidemic in the early and mid 80’s. When the disease moved past seemingly only targeting homosexuals and IV drug users, the world took action like never before.
Night after night, the national news broadcasts led with more stories that sent the public into a panic, and soon there were benefit concerts across the globe, and countless celebrities attached their names to the fight. As a result of their efforts, AIDS is no longer a life sentence, and it can be treated and controlled with pharmaceutical breakthroughs once thought impossible.
Nevertheless, as Pic points out, the same can’t be said about the fight to find a cure for ALS. “Unfortunately, ALS is not mainstream, so we don’t have celebrities putting on concerts, and we don’t have the government getting involved,” Steve stated. “There is really no money in it for pharmaceutical companies; they won’t make big money if they find the cure for ALS because not that many people are afflicted with it.” He added, “Really, as sad as it sounds and as sad as it is, it’s all about money.”
What a freaking joke. And it gets worse. “The experts tell us that if we had the money, we would have a cure or a treatment in four years or less. These are the top ALS neurologists in the world who tell us that,” he said flatly.
There is just no getting around the fact that in a country that likes to think of itself as the world’s leader in almost everything, including health care and the high standard of living enjoyed by its residents, not to allocate the funding – which, by the way, would be a fraction of what we hand out to countries all across the world to eradicate diseases and give military aid to for wars that are killing their citizens, not to mention OUR troops – that would most certainly save the lives of those who suffer from ALS, is nothing short of sinful.
The numbers don’t lie
While ALS might not be as wide reaching as the AIDS epidemic was, the numbers of those who are or will be afflicted or affected by the disease are still staggering. “Medical statistics say that 500,000 people alive today will die of ALS. Obviously, that includes people that haven’t got it yet,” Pic told me.
“If you factor into that 500,000 number, the number of family members and friends that will be affected, that number grows exponentially. If those 500,000 people have 10 close family and friends, that number grows to 5,000,000 affected. If they have 20 close family and friends, the number would be 10,000,000; so the affect is widespread.”
As Pic sited in our conversation, approximately 6,000 people in the United States alone will die of ALS annually, and 6,000 will be diagnosed with the disease each year as well. It is estimated that at any time there are about 40,000 in the US that have ALS.
And the numbers don’t stop there. Steve went on to say, “10% of the cases of ALS are hereditary, which obviously means that 90% are not; so they are random. It can strike anybody.” He added, “A majority of the people are 50 to 60 years old, but you can get it in your 20’s, 30’s and 40’s as well.”
Perhaps the most well-known story of someone being stricken in the prime of life is the former Boston College baseball player, Pete Frates, who was diagnosed with ALS in March of 2012 at the age of 27. Frates was the inspiration behind the Ice Bucket Challenge in 2014, which help raise funds to fight the disease. However, it is his story that brings home just how random this disease can be.
Family, the ties that bind
As I mentioned before, I have a personal history when it comes to watching a parent struggle with an incurable disease. I know how difficult it is to put on a brave face when all you want to do is dissolve into a puddle of tears.
Pic is the father of three kids, Chris, who is 28 years old and works at Snap On with his dad, and twins Kerry and Jessica, who is a nurse and an occupational therapist, respectively.
When I was beginning to put this piece together, I reached out to Jessica on Facebook, a bit leery of prying into what is certainly a very sensitive subject. I asked her if there was anything that they would like to say about their dad’s diagnosis. This is what she sent me back.
When our dad first told us that he was diagnosed with ALS, we were devastated. Being in the healthcare field (nurse and occupational therapist), we immediately knew what a diagnosis of ALS would entail. Our first thoughts were of the experiences we would miss out on with our dad in the future – will he be around for our weddings and if so, will he be able to walk us down the aisle? Will he ever meet his grandkids? That’s the thing with ALS – the trajectory is unknown, which makes the future one big question mark.
Our dad has always been the person we call when life gets tough, and even though he is the one with this devastating diagnosis, he is again showing us how to deal with life’s obstacles. He has chosen to dedicate his time to the ALS Knights, raising money and spreading awareness by encouraging others to join this organization.
We are so proud of our dad for facing this horrible diagnosis with dignity and strength. Although it is an upsetting diagnosis, it has brought our family closer together and shown us how important it is to live each day and embrace your family because life can change with one phone call.
In reading those words it is so clear to see that the strength of their father is shared by his children. In the face of such a difficult future that likely lies ahead, they – like their father – have chosen to focus on the positive, rather than wallow in self-pity.
However, the fact remains, unless others are willing to act, or willing to JOIN, they won’t be the last family to face such a fate.
Moving forward making a difference
In late November, my cousin David sent an email to a group of Pic’s friends regarding his involvement in the ALS Knights organization. Here is a portion of what he wrote.
I attended an ALS fundraiser last week with Steve, his kids and a couple of friends. The fundraising group is called ALS Knights. It was a very emotional night.
The founder (now on a scooter) Kevin Gosnell, spoke about his 14-month ordeal since diagnosis and then invited Steve up to speak, I will send you all Pic’s speech. He was fearless as he spoke!!
At the end of the conversation I had with Pic regarding this piece, I asked him the question, although God knows he didn’t choose this fight, now that he was in it, what did he hope the ultimate outcome would be?
“Well, I think that it may be too late for me to benefit from any treatment or cure that they may come up with. Even so, my ultimate goal is to help those behind me, so they don’t have to experience what I am experiencing and will be experiencing in the future,” he said in a voice that never wavered.
He calmly continued, “If I can make a difference in some form or fashion so that people, and their families behind me don’t have to go through what those before me have gone through, and what I am going to have to go through, then I would be quite satisfied knowing I did what I could to help.”
Just a peek behind the curtain, if you will, in order to record our call, I had Steve on speaker phone from my home phone as I recorded the conversation on my cell phone. As Pic began to speak about trying to make a difference and what kind of legacy he wants to leave in such a steady and commanding voice, I began to breakdown. At one point, I got up from the chair I was sitting on and moved across the room, so he wouldn’t hear me whimper.
I know that not everyone has the money to donate to every worthy cause, but everyone has a name and everyone has a voice. If you can donate, please go to www.alsknights.org and please do so in honor of Steve Pickett or someone in your life that has been affected by this devastating disease.
If you can’t afford to donate money, please sign up anyway. Put your name to the cause. There is strength in numbers, and if we can get enough people to get behind the search for a cure, then, perhaps, we will have the strength that folks like Pic and Kevin Gosnell exhibit on a daily basis, and we can use that strength to bring a voice to a cause that has long been kept silent.
“I made a New Year’s resolution – everyone has one, right – and mine is to do everything I can to help find a cure or treatment for ALS,” said Steve. “If I can get more people to join as Knights and more people to step up and influence anyone that will listen, then we can move this mountain.”