Jonathan Piacentino, with brown hair and a beard wearing a grey zip-up sweatshirt with a red shirt underneath, sits in his wheelchair looking into the distance on a football field.
Jonathan Piacentino visited Utica University for a Coach to Cure MD event.

Jonathan Piacentino: How I’m Navigating Life After College

By Jonathan Piacentino Tuesday, August 8, 2023

Picture this: You’ve just received a college diploma — a four, maybe six-year endeavor, depending on how many credit hours you could handle. You’ve defied many expectations, perhaps living longer than your physician’s initial prognosis or living on campus because the facilities could accommodate your needs. You take pictures with friends; you flash your diploma with your family. But in the back of your mind, you’re thinking, “Now what?”

Sure, college grads all over the world struggle with that question, but with a complex condition — and specifically my diagnosis, Duchenne muscular dystrophy (DMD) — the answers are harder to find.

My personal FAQ

For the past seven years since I graduated from college, I’ve been asking myself the same questions.

Do I look for a job and try to earn money? That’s the first thing that comes to mind. Going on disability is a steady source of income, but if I so much as make a dollar over what is allowed, those benefits are cut.

Where will I live? My parents’ home is an accommodating space, and they have been my primary caregivers for my whole life. But I am getting older, and they are getting older, too. I am going to have greater needs, and they won’t be able to take care of me forever.

How can I get the help I need? I’m currently waiting on caregiving staff to be cleared for work through a home health agency. I must wait on the agency to go through the necessary paperwork. I must wait on the potential staff to find time to fulfill the prerequisites to work. While I’m working toward a solution, the solution doesn’t feel good enough.

There are no clear answers to the questions above, and that is what weighs on me.

Here’s one last question — and it might be the most important one: How do I get through this?

Finding connection

Sometimes it feels like there are too many questions weighing me down. But, under the crushing weight, I’ve found other things to focus on that get me through. I have made connections with new people online. I like to create things. From painting and putting together model kits to building out fantastic digital worlds filled with all manner of wonderful creatures. And with that creative fire, I’ve found like-minded individuals who enjoy crafting equally awesome worlds. The social platform Discord has helped me connect with new people and new experiences, and this has helped me make it through.

So even when you feel weighed down, remember you are not alone. Just close your eyes and breathe. If you get tired of holding all that weight, simply rest and take a breath. Then, right yourself and keep going.

Laws of probability state that the longer something happens, the greater the chance that something else will occur. Maybe the next time you push against the weight of all those questions, the weight shifts. But focusing on you can ground you. And the best you can do is be alive.

Jonathan Piacentino, 29, of Penfield, New York, was diagnosed with DMD in 1998. In 2016, he earned his Bachelor of Science degree from Nazareth College, where he majored in Biology and minored in Chemistry and Toxicology.


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