“Love is the only engine of survival.”Leonard Cohen
People tell me they admire me. It’s a very weird experience for me. I am not comfortable with it. I’m not a particularly admirable person. I’m really quite average. I was thrust into an extraordinary situation and am dealing the best way I know how. So when a friend tells me that I “inspire” them, I really am baffled.
I get that our life seems tough to a lot of people. And it is tough. Living with ALS is no walk in the park. There are hopeless days. Days that are filled with tears and anger. Days where nothing goes right. But those types of days happen to EVERYONE. To differing degrees, but I can’t name a single person who is in a constant state of awesomeness. Everybody gets through those icky days a different way. I personally put my head down and literally push my family over the finish line. And then usually find a stash of chocolate somewhere before going to bed. To each their own.
Our life is extraordinary as well. Because of ALS we have had some amazing things happen that would never have happened otherwise. Flying to Colorado and Arizona to speak at events. Meeting the President and Vice President of the United States. Cultivating friendships with some of the top lawmakers of this country. I understand to the vast majority of America that these are not common things. I understand it would not have happened had Matt not been Matt and gotten ALS.
Maybe that is why people tell me I am an inspiration. Matt has this intangible thing that elevates him above the average human being. People gravitate towards him. They trust him immediately and tell him some of their life stories within minutes of meeting him. He was telling me the other day that on his bus rides he used to take from our house in Richfield, MN into Minneapolis for work, there was one guy who was telling him he had completely ruined his life because he used to beat his wife. Not sure about you, but not a conversation I would have with a stranger on my morning commute. And that’s not the first time something like that has happened to him. It still happens to him. Sometimes I drop him off and go park the van and by the time I get back he is sitting with someone who we don’t know that is telling them about their fears for life. It really is crazy and I wouldn’t believe it if I hadn’t seen it for myself numerous times. Maybe some of his intangible has rubbed off on me over the years.
I have the opposite effect for the most part. I am firmly in the RBF category – Resting Bitch Face for those who don’t know. Some of my closest girlfriends have told me that when they first met me they thought I couldn’t stand them. It’s just my face. And I’m not an open person. I don’t radiate the light like Matt does. It’s more because I get very nervous and scared when it comes to meeting new people. I overthink and worry about first impressions, which is funny when my first impression is that of a bitch. I like to think that I am not and the people who know me can see that!
You see, I care what people think of me. At least what the people who I care about think of me. Strangers, not so much. But the people who I have in my life because I choose to have them there, their opinion of me matters a lot. For my own mental self-preservation, I can’t appear weak in front of them. A bit of my identity is wrapped up as the wife of “Matt Bellina, ALS advocate and extraordinary person”, the backbone that doesn’t ever bend. You need us in Washington tomorrow? I will figure out a way. Matt needs to meet with 4 senators this afternoon? I will walk, pregnant, around The Mall and visit the Smithsonians with our 2 kids while he does it. Want us to fly to Arizona? I will literally carry Matt onto the plane to get us there. You need our family to do something, I figure out a way to get the moving pieces lined up to make it happen. Failing to make it happen is not an option. It’s just survival.
Aside from survival, it’s love. Crazy, Stupid, Love. Isn’t there a movie about that? It’s the love I have for this man and his for me. I wouldn’t do the things I do for just anyone. I’m not that magnanimous of a person. It’s the love I have for my kids. I think most mothers would crawl across broken glass for their kids. This is a little bit the same. I want them to have the best lives possible and that means trying to keep their childhoods “normal”. It’s God’s love for us, as a couple. He put this obstacle here because he knew we would be able to scale it together. None of what I do in this ALS life is because of me. None of it is superwoman powers. I think a lot of cALS feel the same way and would tell you the same. It’s not super anything.
So, you see, it’s survival and love. I love this man, myself, my family, this life and I will help my family survive it. Although, I hope I can help them thrive, not just survive.