Author: Joseph Belluck
Dad’s Enthusiasm For Mesothelioma Advocacy Keeps Me Going
After my father’s surgery at NYU Langone, he stayed with my husband and me for about a week before making the final three hour trek home. It was during that time that we started talking about fundraising for the Mesothelioma Applied Research Foundation. Dad was excited about it, you could see the gleam in his eyes. He loved being a part of events and parties, and this was something personal to him. He was all in!
Our first fundraiser was at Dunbar Community Fest in the town where he lived his entire life. As we began to plan our part, donations started coming in from family and friends. We were overwhelmed by the outpouring of generosity and love. The morning of the event, we set up and began waiting for the crowds to arrive.
I will never forget watching Dad that day. He almost served as the “ambassador” of our little tent. He stood out in front, talking to everyone and greeting them with a smile. Living in a small town, everyone knows each other. My father was well-loved, and the entire community was happy to see him doing so well and present for the event.
When we finally packed up and headed home, Dad was grinning ear to ear, talking about all the people he saw that day, and humbled by all the prayers and well wishes offered to him.
Throughout the rest of his life, Dad was always involved in any fundraisers that we did. Shortly before he passed away, he missed the Community Fest because he was in the hospital. I know he was sad to miss it, but encouraged us to go forward with our booth, knowing it was meant to help others.
He is my inspiration for continuing to help this cause. Even when he was down, Dad was a light to others in ways he never knew. I am proud to continue the work on his behalf, knowing he is smiling down on us from Heaven.
Our Mesothelioma “Aha” Moments
From time to time, there are moments in your life where things just click. Everything falls into place and makes sense, for good or for naught. Throughout my family’s journey with mesothelioma, we all had these “Aha!” moments.
The first of these moments came from my Dad himself. We were visiting the Flight 93 Memorial together as a family. While we were walking, he had to stop because he couldn’t catch his breath. He had been having some trouble for a few months, but he later told me that this was the moment he realized that something was seriously wrong.
For me, this moment of clarity came after my father’s diagnosis when we were directed to NYU Langone for surgery by a complete stranger. I realized that this was the answer to my prayers and that God was truly in control, something I always believed, but saw in complete transparency that day.
There were many times when we thought we understood what was going on. Dad’s scans were clear for a while, so we thought that the fight was over. He participated in a clinical trial, so we assumed that everything was working perfectly. Then, when the cancer returned, we thought we knew what to expect. We were utterly wrong.
Radiation took a completely different toll on my father’s body than the chemotherapy. Ultimately, it was complications from treatment that took his life; he was cancer free when he took his last breath. We didn’t understand this. If he was “cured”, why would there be a problem? This lead to another “Aha” moment.
We realized, and more importantly, accepted, after some time, that God’s plan is perfect. The moment that Dad passed away, he was in the arms of angels and free of pain and sickness. All of this was God’s plan, and He always seems to get it just right.
Are You Hovering Over Your Mesothelioma Loved One?
Picture it… you’re sitting quietly in the room while your loved one sleeps peacefully. You start thinking that they might be a little cold, or that their breathing seems like it might be a bit off. You walk over to them, listening, carrying a blanket. Next thing you know, they’re looking at you, wondering what in the world is going on!
I am a “hoverer.” There, I admit it! When someone I care about is sick or hurt, all I want to do is watch them to make sure they’re alright. I constantly hound them with questions of, “Do you need anything? Are you ok? Should I call the doctor? Are you sure you’re alright?” And, just for good measure, “Do you promise you’re ok?”
When my father was battling mesothelioma, my hovering tendencies were heightened. The person I loved so much was facing something that we had never experienced. I didn’t know what to do, so I did what I do best. I asked a million questions every day. I was constantly calling to check in when I wasn’t there. I’m sure I drove my Dad up a wall.
But then, on the other hand, Dad knew me so well. He knew that I was spending my time worrying and wanting to help in any way I could. These are just ways that I show how much I care, and it’s not something that I can change. Dad took my hovering ways in stride, appreciating that I was there and thanking me for my concern. He answered all my questions patiently, always assuring me that he was fine.
I am grateful that my father was someone who had that patience, the patience of a saint if you ask me! Others may not be in the same mindset. Even when I tried not to take over Dad, I still ended up doing just that. It’s tough to find a balance. In this case, I think the balance has to be between the patient and the caregiver. Cultivate your relationship together and see what works for both of you. Your loved ones will let you know what they need… even if that turns out to be some space!
Mesothelioma Advocacy Isn’t A One-Time Gig
Sometimes, I sit and wonder how many different ways I can discuss the importance of advocacy. How many ways can I write about how critical it is to spread awareness of mesothelioma and the dangers of asbestos? Should I just sit back and think that I’ve done enough and let my past words and actions speak for themselves?
The answer is simple… absolutely not! Every single day, someone new is introduced into the mesothelioma community, whether it be as a patient, caregiver, researcher, friend, or concerned citizen. We cannot stop fighting just because we think that daily chatter may already be saturated with concerns.
Advocacy isn’t just for those currently clashing with this horrific disease. It is for those who have lost their lives fighting. It is for the future generations who will hopefully know nothing about mesothelioma, because it has been eradicated forever. It is for everyone.
Even if you think that an effort that you deem as small can’t impact someone, think again! A simple article posted on social media, a comment to an acquaintance, anything can help in this ongoing fight. It is important to keep this battle going and fight until the end, until mesothelioma is only a memory in the eyes of everyone in the world.
Daughter of Mesothelioma Victim Holds Memories
A song. A simple tune that other passers-by don’t even notice. A smell, wafting on the breeze. A place, so full of meaning, that sharing it with other people seems like you’re telling a secret. These are all triggers for me; triggers of beautiful memories of my father. Knowing that I don’t have the chance to make new ones with him, makes me protective and possessive of the ones I hold so close to my heart.
Dad loved music and he was a beautiful singer. Even though he played with his bluegrass band, most of my memories of him singing were a bit different. Yes, he always sang me “You Are My Sunshine,” but there was more to it than that. I remember during our infamous Saturday morning adventures when he would sing along with me to the radio when REM or No Doubt was playing. I remember the time he went to an NSYNC concert with me, just because.
Along with music, my father was a lover of food. It didn’t have to be a delicacy, in fact, he would prefer it not to be. The smell of no-bake cookies reminds me of the first time we “baked” together, unsuccessfully, may I add. How we managed to mess them up, I’ll never know. The fun was in the experience.
Every time I smell a beautiful fall breeze, it takes me back to nights spent with him in the yard at our home, playing outside. Volleyball became a specialty, and during the last set of the night, we would both agree that we would go inside once the ball hit the ground. This led to bouts of hilarious laughter as we would run around, doing everything we could to make the evening last just a bit longer.
Dad and I shared so many memories in various places. Some of the memories I treasure the most are ones that I choose not to share. They are embedded deep within me; the stories that usually ended with “Don’t tell Mom!” are ones that only we knew. Now, I am left to reminisce about these alone. They were our secrets, and I intend to continue keeping them.
Now, my memories of my beautiful father are all that I have left of him. This harsh truth of my new reality reminds me to treasure each day. As you walk through life, stop and think that you might be creating memories that your loved ones will carry with them for years. Live each second with that thought; if you do, you’ll do a lot more living, and create a lot more unforgettable moments.
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