by Stephen Marchesani
about the author:
Stephen Marchesani has 2 boys. Vincent is 13. Lance is 10. Lance has Duchenne Muscular Dystrophy. Stephen and his amazing wife, Leah, have been married for almost 20 years. Stephen was a speaker at the 2019 PPMD conference, and also writes his own blog.
The Wane of the Rallying Cry
In a lot of ways, since my son Lance’s diagnosis, I have internalized things.
Sometimes I just don’t want to think about or worry about anyone else but me. In spite of the fact that at times this is healthy, sometimes I waver on the accuracy of that idea.
But here is the thing, my mind is routinely consumed by the idea that my son has what is basically a terminal disease. For those of my fellow parents with a child or children with the same disease, you know what I mean.
It is in almost every thought all the time. When you wake up; before you go to sleep; when doing laundry; when trying to be productive at work; when trying to show love and caring for someone else. Every thought, every day.
Good at Heart
This is out of the realm of comprehension of the vast majority of people, at least the ones in my world. No matter how we try to explain it and make others see, it’s just not really possible. I envy them their ignorance about what this is like. I had it once and didn’t even know it.
My brother has an autistic son. I tried to understand and act like I was really supporting him. But I know now I wasn’t. I still have no idea how to help, but I now know how he feels in some ways and it breaks my heart.
I heard a quote once when I was a young teen in a Whoopi Goldberg one-person show on broadway that was attributed to Anne Frank. It says the following, “I keep my ideals, because in spite of everything I still believe that people are really good at heart.”
The sensitivity and simplicity of this idea have stuck with me for 35 or so years. However, experience has shown me that generally, people have no idea how to show they care.
A Fragile Reality
See, I firmly believe that everyone has their own version of Hell in their lives. Whether we want to or not, we compare our Hells on the occasions when we get past the daily BS and delve deeper into friendship and trust.
We listen, we talk, sometimes we cry. Those moments are necessary pains that help us appreciate some things in our lives while mourning others. They help us grow and show how there is so much more to this life than the little things we are bombarded with every day.
At the same time, sometimes we walk away with a hint of comparison and appreciation that our Hell isn’t as bad as theirs.
Unfortunately, the life my wife and I have shared falls in the category of life experiences that others cannot understand, relate to, or even, in some cases, listen to.
I get it. I have done it. I have turned away from those I love when things got too hard.
When reality was a little too fragile and the possible outcomes or daily situations were too much to bear, I had the luxury of going back to my safe haven. Because I didn’t have to see it every day, it didn’t exist and I could lie to myself and think it would get better so I didn’t really need to do anything.
I have now become a victim of this mindset. How do you help someone who is dealing with something like this?
The Difference It Makes
I don’t think there are specifics that apply to everyone. But I do know that there are a few things that I can do more for my brother and others like him – that feel everyday difficulties of life that I can’t relate to and the overwhelming feeling of loneliness that can occasionally come with it.
I know a lot of you think about Lance, Vincent, Leah, and me. You want to make everything better. You want to know the magic words or deeds that will truly fix everything. That doesn’t exist, and that’s ok.
Sometimes just a random text or message on any of the various forms of social media of, “Thinking about you. Hope you are ok.”
But the comfort of just a few words of acknowledgment and caring do more than I think I could ever express.
See, in Lance’s situation, it is for his forever that he has this disease.
When we first found out there was a bit of a rallying cry. Like right after 9/11. People forget all of the petty things and come together in a moment of solidarity to see that we have a lot more in common in the human condition than we have that opposes us. We support each other. The moments we share become more valuable. Kindness and forgiveness come more easily.
But as time goes by and the impact of the horrors wanes people slowly withdraw into their own lives and mindset and the lessons and feelings learned dull. Eventually, things return, more or less, to the same patterns they were before for everyone except for those that were specifically impacted. For us, those things never wane.
So, when you have thought of us, and I don’t mean just my family, I mean any of us that are going through something hard, let us know. The difference it makes in the life of the recipient is only outshone by the feeling you will get when you do it.