Feeling Alone In A World Full of 8 Billion People: The 3 Letters That Changed Our World

When I was a senior in high school, my father, Mike Tamburino, began having issues with his body, issues with typical bodily functions to which many people do not give a second thought. After attending multiple appointments, my father was finally referred to a neurologist. With heads held high, my parents walked into this meeting hoping for answers and a clear path toward recovery. Yet the building they walked hand in hand through screamed “ALS.” On the walls, in pamphlets, those three words reached out and grabbed our family by the necks. From December 23rd, 2016 and onward, my life has never been the same.

To this day, I find myself unable to bear the thought of stepping foot into Danbury’s popular Restaurant 99 for one distinct reason; it will forever be the location where my life’s foundation began to crumble. As I proceeded into the restaurant on that Friday night, I had absolutely no idea that I was minutes away from hearing the most nauseating message that would plug my ears for years to come.

It was a leather corner booth, the perfect size for the amount of family members it needed to comfort. My three brothers, my brother’s girlfriend, my parents, and I all squished in. As we gazed over the menu, the table fell silent. Then, as one, we set down the perfectly laminated selections and sat in a moment of silence.

My memory of this evening resides precisely in my mind. I remember how awkward this silence was for my talkative family. I lent one of my brothers a smirk, thinking, “Ha-ha, why is everyone being so weird right now?” Little did I know…

My dad broke the stillness by saying something like, “So guys, we have some news.” I think I smiled at my dad in anticipation of exhilarating news. You see, usually, when my parents sit us all down and request a “formal” discussion, it means we are going on vacation. It is always good news, never bad. Yet this time was different- very, very different.

“I have ALS,” he said. I remember looking at my mother as she began to cry. It runs in slow motion through my mind, and often too. That one sentence changed my being, my life, and the person I’ve become.

Day To Day Life

In the simplest of words, day to day life in our house is hard. As a family, we’ve become accustomed to the abrupt modifications that occur diurnally and even so, the next sunrise awakes us with new surprise obstructions and labyrinths. The feelings I encounter on any given circadian cycle are so fluctuating and fitful that I cannot explain with brevity how I withstand such intense, consuming emotions.

My father acts as though he is the most indestructible human in the entire world. I believe that the majority of my robustness is driven by my father’s. That man is the most determined, prideful, unassailable character I have ever, and will ever meet in my life.

A concept I continually press into my psyche is that I will never know what it feels like to be him. While I know how it feels to encounter, observe, and/or engage with ALS, I will never know what it feels like to lose parts of every muscle each day or the obstacles that accompany it. Cutting food, finding straws, changing clothes, and being an extra hand for anything imaginable can become tough at times, sometimes even frustrating. When I am in the middle of a task and am being called to do something else, I sometimes get frustrated, but like I said - I couldn’t begin to conceptualize the absurdly twisted roller coaster ride on which he’s involuntarily stuck.

I think that although my family and I are continuously confronted with these challenges, we occasionally lack the ability, capacity, or will to talk about it in an authentic manner. While we all know talking about it is what’s best for us, it feels staggering. With ALS, there are boundless worries to be found. It definitely helps to share with my family and get things off my chest to the people who I know understand where my emotions/thoughts are coming from. And yet, I have found that a majority of the time, they are worrying about something I had completely overlooked. They make valid points and I sit there thinking, “Why have I not even thought about this before?”

My external and internal faces mimic the concept of the “good” and “evil” twins. My exterior portrays an invincible, storm-resistant, full-of-life image. Boy is that false. Granted, that is how I want others to view me, and often how I want to view myself. I have recognized though that I can no longer hide my heart.

Recently turning 20 years old, having two jobs, being a full-time student who is in a committed relationship, all while living with a sick father is the furthest thing from effortless. There are times when I feel unstoppable, like not a single thing will break through my solid exterior. And then there are times when I feel like my little girl self - like I am not cut out to handle any/everything being thrown my direction. I am a strong believer in the expression, “Everything happens for a reason,” and I have found a strong spiritual calling that sustains me and gives me that extra little “umph” when I need it.

Daddy and me in July 2000 - Sesame Place Langhorne, PA

It’s All Relative

My family members and I occasionally reach a point where we think, “Everyone else has it so good!” or “What else is gonna hit us?” Not too long ago, I had one of those mental breakdowns. I told my father about it during a recent father-daughter date, and he knew exactly how to put matters into perspective.

“It’s all relative,” he said. I looked at him, puzzled. “It’s all relative,” he repeated, and then explained that although we are facing great misfortunes, we are also blessed. Despite having to endure hellish days, thoughts, emotions, and circumstances, we are fortunate. Others with ALS are in a poorer state than he is now, he explained. There are individuals living with ALS that can no longer speak, walk around the house without a wheelchair or assistance from someone, or go to the bathroom in private. These are the little things we so selfishly overlook every single day. These are the little things we expect to always be intact, never in anticipation of our last individually-made cup of coffee or the last drive we take by ourselves to refuel our minds. Such simple things that in the presence of ALS, are not so simple after all.

ALS walk with family and friends - October, 2017

Why I Am Thankful

I feel remorseful for viewing this illness as a blessing, but at times it is. I learned about my father’s diagnosis as a teenage girl, when most of my time was spent with friends or my boyfriend and I had little to no awareness of my conscience. As both time and my father’s condition have progressed, I have realized the importance behind miniscule moments.

Whether it’s having a small conversation while packing lunch, sitting on the couch for a few minutes watching someone’s favorite show with them, or just taking the few extra minutes to ask how their day was, these moments matter. People sometimes realize the blessings in their life when it becomes too late. Through our predicament, I have learned to appreciate what I have when I have it. I spend more time at home, try to connect more with others, and wake up every morning thankful for the life I have and the people in it. My father’s diagnosis has opened my eyes to the true meaning of life: to live, to love, and to be mindful.

My family - September 2018

The Tireless and Unwavering Support From Our Bethel Family

My family and I are in complete awe of the unconditional support the Bethel community has blessed us with. In February 2017, my father uploaded a video sharing his diagnosis with his Facebook friends, amassing 187 comments of inspiring, heartfelt wishes. Those words have since transformed into actions. Our town has never once fallen short of contributing to our family’s needs, whether it be sharing my father’s posts, offering help towards necessary home renovations, dropping off valuable goods/services, attending medical appointments, or raising money for medical expenses.

There have been countless instances of these gestures that have left my father speechless. In the past few months, getting in and out of cars has become increasingly difficult for my father. A dear friend organized a GoFundMe page in September 2020 and what came next was unexpected and profoundly meaningful. In less than 2 weeks, a grand total of $33,835 was donated to help our family purchase a wheelchair-accessible van. As if that wasn’t astonishing in and of itself, we were yet again blown away when it was personally delivered from New Hampshire, adorned with a large luminous red bow. My father is now able to go out more often, travelling safely and comfortably. He is touched by everyone’s kindness, and in particular by the generosity of those who he once coached in numerous sports.

My family cannot thank Bethel enough for every single provision of kindness they have gifted us. I believe our community is eager to help my dad because of the amazing, considerate, giving, proactive, strong (I could go on and on) Superman that he is, but also because our town stands for unity, fortitude, and perseverance.

24 years ago, my parents moved to Bethel to buy a starter home for their growing family, and for reasons that I think are evident, they never wanted to leave. For them, Bethel has transformed from a random nearby town to a home for their large family. We may be a small town, but through our communal synergy, we effectuate huge, life-changing outcomes.

“I consider myself the luckiest man on the face of this Earth...I might have been given a bad break, but I’ve got an awful lot to live for.” - Lou Gehrig, July 4, 1939 at Yankee Stadium on Lou Gehrig Appreciation Day

Coach Mike Tamburino, Coach John Dee, Coach Dave Albin. Bethel, CT Mitchell Park, 9 year old travel baseball team in 2002.

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