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What being a dad with MS means to me

By Matt Cavallo

In 2005, I became nonfunctional from the waist down because of a sudden onset of transverse myelitis. When I am referring to nonfunctioning, which means everything below the waist. I couldn’t walk, I couldn’t go to the bathroom, and I also couldn’t get an erection. In my deepest, darkest moments as I suffered through these symptoms, I thought I was never going to get to be the dad that I had always wanted to be.

My wife and I had only been married for three years when this happened. I was 28 years old and focused on my career. I was working in downtown Boston as an analyst for a small real estate development firm. We were just starting out, purchased a home in the Boston suburbs, and were planning on starting a family.

I laid in my hospital bed thinking that the hopes and dreams my wife and I shared were over before they began. I like to say I handled it better, but I didn’t. I fell into a deep depression. For months, my recovery progressed slowly. Little by little, I was learning to walk again, but I still could not get an erection. 

I was also uncomfortable talking about it. Looking back that is probably the thing I would change. Your medical team does not know how to help you solve a problem you don’t talk about. If you cannot talk to your doctor about your sexual health or what happens in the bathroom, then you are going to the wrong doctor. 

I also avoided this conversation with my wife. In some ways, I was afraid to talk about it because we were talking about trying to get pregnant. I was afraid I would not be able to make that happen. I felt like less of a man. I felt like everything I had promised was over. 

She wanted to comfort me. She would have supported me, but I pushed her away. I kept my thoughts to myself. I didn’t share all of the fears and emotions that darkened my mind.  

Fortunately, I was able to recover, and we were able to start planning for kids. Two years later, my oldest son was born. Another two years after that, we had our second son. I think that experiencing the loss, living through the fear, and then finally overcoming health obstacles to become a dad was the best thing that has ever happened in my life. I do not take it for granted. 

I still have the fear an MS relapse can take all of this away from me again. So, as I raise my kids, who are now teens, I feel like my experience with MS has driven me to participate more in their events. 

For example, I remember when my oldest was five, there were no volunteers to coach t-ball. I was busy. I was working full-time to pay the mortgage, I was writing my first book, and I was traveling for speaking engagements to promote my writing. I had neither the time nor the energy to coach t-ball. 

I raised my hand and said, “I’ll coach the team.” 

This is what being a dad with MS means to me. Even when it is hard for me, I want to show up. I thought I would never experience fatherhood, and once I did, I wanted to cherish and make the most of every moment. Being a dad with MS means I push myself and take on extra, even on days where I feel I can’t do it. To me, being a dad with MS is everything.