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When you meet me, I am not what you expect the face of MS to look like. In fact, unless I tell you that I have MS, you probably would not think that I have any challenges. From the outside looking in, my life is perfect. I have been married to my best friend for 20 years this October. We have two healthy, beautiful children who excel at school and sports. We have two seven-month-old puppies that you’ll see us walk around the neighborhood every night. We have a nice house in a nice suburb and are seemingly living the dream. 

You have heard it been said ‘do not judge a book by its cover,’ but how many of us actually do that? Most people would think that we are fine, but the truth is that we are anything but. I have been diagnosed with MS all but three years of our 20-year marriage. 

In that time, my wife has had to be my caregiver in ways that no other married couple in our circle has experienced. She has had to administer shots to me, bath me, change me, and has had to pick me up from the floor when I have fallen down. 

I remember her screams of horror when she found me passed out at the bottom of stairs after she had put the kids to bed. I was in the middle of a relapse and do not quite remember what I was doing or how I had fallen near the stairs, but I sure remember the horror on her face that night.

My kids also worry about me. My oldest cried in third grade when he was introducing himself to the class and share that his dad had MS. I was going through a bad relapse at the time and had to have a home nurse in the house. Even though we tried to shield the kids and reassure them that everything would be okay, they saw many of the medical interventions that happened in our living room. Because of experiences such as this, my oldest son wants to be a neurologist so he can help people like me. While it makes me proud he wants to be a doctor, it also breaks my heart a little that his childhood was so greatly affected by my disease.

I think about my dad who is a big, gruff Vietnam vet who seems invincible. Growing up, I wanted to be like him and looked up to his strength and courage. My kids do not want to be like me, rather they want to help me and take care of me. However, the outside world does not see that. They see that I coach my sons’ sports teams. They see I am active in school events. They don’t see that I am overcompensating for the fear I have that it could all crumble if I relapse again. 

I think all of us living with MS live with some level of fear that at any moment it could all come crumbling down. So, when you see us trying hard to live a normal life, please do not judge our book by its MS cover and make assumption about how we are doing. Instead, try getting to know us and learn our unique story. You might be surprised by what you find out.