Your crippledness gives God a chance to show God’s strength and it also enables you to be in community, because you cannot do it on your own.- Rev Dr. William J Barber
When I first started this blog, I said that the purpose, at least in part, was to discuss the impact of disability due to multiple sclerosis on my view of family, manhood, faith, and other things. I will be the first to admit that I have not done that yet. The reason being is that it’s still a topic that I’m struggling to reflect on. This is the topic that causes me grief. In other words, I’ve simply been too afraid to really talk about it and to be open. But today is a new day!
So today I would like to discuss the impact that multiple sclerosis has had on my view of manhood. When I first started attending Shaw University Divinity School I was asked by my advisor, “Who you be?” It was a question that I couldn’t answer. At first, I couldn’t answer because I didn’t understand the phrase “who you be.” I mean I could answer questions about who I am: I am a father, I am a husband, I am a son, I was employed and so forth but to answer the question of who I be was a different kind of question. This wasn’t a question about what roles I performed, rather it was a question about who I at my core was. I had been performing roles, but I was really living an unexamined life. That was my conception of manhood prior to disability. That manhood was about performing, it was about working, it was about taking care of your family, it was about being praised for physical activities. Manhood was never about who I was.
When I was growing up, and I really don’t know how I learned this, I began to associate manhood with one’s ability to do things. For example, I had learned that a part of being accepted as a man was the ability to dominate others. I mean after all playing sports was a demonstration at least in part of your ability to dominate others. I played football, and I know I was not the best, but I was better than others and had the ability to start in high school and to play a little in college. I learned on the field that you’re praised for your ability to be violent. The bigger hit you put on somebody, the more praise you would get. The more tackles you made in the game the more you would hear your name called. The more you heard your name called the more the band would play for you. Perhaps bell hooks is right, that these ideas are so ubiquitous in society that they don’t need to be taught but they’re just simply learned. I learned that I was praised when I did things well and scolded when I didn’t do as well as people thought I should do. I was valued for how well I did and never really for who I was. Now this is a little unfair, my parents of course value me for who I am, my grandparents valued me for who I was, but not the society around me.
Being raised in a traditional Black family We went to church every Sunday. I went to choir rehearsal every Wednesday, even though I couldn’t sing. We went to church meetings, Youth trustee meetings, YPD meetings. There wasn’t a single portion of our day that wasn’t filled with something. My mother believed in this saying, “Idle hands are the devil’s workshop.” The idea was if you weren’t busy trouble wasn’t hard to find. So, we were kept busy so we couldn’t find trouble. And for the most part this worked! As I am learning as I am getting older and have children myself, the messages we try to give our kids aren’t always the messages they receive. We start off with honorable intentions only wishing the best for our children, but our children, needing something else, misinterpret what we are trying to do. This is a lesson that I recently learned when my daughter said, dad you’re not hearing me. I couldn’t understand what she meant, of course I was hearing her, my wife and I try to do our best to ensure that we listen to our kids and give them everything that we think they need. I was trying to give her everything I thought she needed, but I was not hearing her! I misinterpreted the lessons that my mother was trying to teach me. It was not the lesson that you have to be the best at everything that you do, rather it was a lesson that this world would always view you as a problem and maybe just maybe if you remain busy the world may never see you as a problem. This of course is one of the problems of Black life, how can we be accepted in a world where we will always be viewed as a problem?
Anyway, I went through life with a view that the more productive and dominant I could be the better of a man I could be. Manhood was always tied to performance and not to my being. For a while this seemed to work! I graduated from college, got married a few months later and pretty much began to live my adult life. I was able to graduate from college, even though I hated my major. I experienced some success in my career, even though I hated it. I really never found joy in much that I did and so in an effort to self-medicate I would fill my life with possessions. After all, isn’t this what life is? Get as much as you can. How else will we know if we won? In our current political moment is this not the goal? Billionaires, who need more. If I don’t acquire more than everyone else, how do I know if I won at the game of life? It never struck me that living was just enough. What a fool I was. Think about it, we get as much as we can and then we die. No wonder the preacher says, “Vanity of vanities all is vanity.”
When the multiple sclerosis finally decided to no longer leave me alone, I was so angry. I just finally got in my career to where I wanted it to be, finally purchased a home that I wanted for my family, finally brought the car I always wanted. We were able to live without really worrying about the world around us. If gas wanted to be some ungodly number, I didn’t care. If eggs went to $8 a carton, I didn’t care. God why at this point would you allow this disease that always threatened me but never followed through to finally follow through? I always thought that my descent into disability would be a slow descent. It was not! It was almost as if my disease said I’ve given you 20 years and now I’ve come to collect. The job that I hated, but paid well, went away. I could no longer do it. What was to become of my manhood if I could no longer perform. After all this is what I spent my life seeing it as. This is what I spent my life building.
I need to be honest, I could pretend like I had built this perfect life, I didn’t. In my pursuit to live into a performative idea of manhood I left disaster in my wake. In my ability to make sure that my family had all that we needed, they didn’t have me. This is why I never really wanted to write this post. How do I admit that my idea of manhood caused me to fail the most important people to me? My failure was my fault! I kept myself so busy at all times that I never really had the time to see my family for who they really were. But why did I keep myself so busy? The only answer I can come up with is that I lived a life of fear and constant anxiety. I was afraid that if I stopped then the things I was able to acquire would go away. I was afraid that if I stopped, I couldn’t give my family the life I thought they deserved. I was afraid that if I didn’t participate in grind culture, I wasn’t a man. I worked hard to try to be a good father, I worked hard to try to be a good husband, and now multiple sclerosis was going to take away all my hard work! I was scared; I was angry. How can my children love me if I couldn’t be a man? What kind of husband could I be to my wife if I couldn’t work? Would my family love me when I was failing to be the man, I thought they needed?
I was diagnosed with multiple sclerosis when I was 22 years old. From that moment until now I have spent the majority of my adult life running away from something I hope would never find me. I thought if I kept myself busy that maybe multiple sclerosis would just ignore me. I thought if I just live life as I had learned, everything would be fine. It wasn’t in God that I trusted, it was in my ability to perform that I trusted, I trusted in my ability to be a man.
The rapid onset of a disability was something that I never expected. At first, I tried to ignore it. After all this is what men do, we persevere through tough times in our lives. There are no excuses! When life comes at us, we go at it harder and all the other bullshit that we tell ourselves. What do you do when you cannot win? What do you do when all your efforts are in vain? I mentioned above that I had to leave the job that I hated but that provided a good living for my wife and family. I sat at home trying to adjust to my new normal. I tried to find ways to fight back even harder. Throughout this time of my adjustment, I never really recognized it was right there in front of me. All the things I feared didn’t happen. My wife didn’t leave me, my children still love me, we could still live in our house. I still didn’t get it.
I asked a question above, what do men do when challenges come? Well, we try to conquer them. I wasn’t going to let my disability keep me from doing what I needed to do. So, what did I do? I went and found another job! If MS wanted to fight, then we fight! What a stupid idea. I went and found another job that didn’t pay as well but still provided everything that we needed as a family. Did I find a job that I liked? Of course not! Manhood is not about joy; it is about responsibility. Happiness comes after you get everything you want! Until then we grind. It’s funny that in our blind pursuit of what we believe should be life we don’t take stock of those who are around us. My wife was so mad at me when I took this new job. I couldn’t understand it. How could you be mad at a man who was willing to work? Her answer was quite simple, because it’s killing you, because it’s killing you….
As I process the grief that I felt in this moment I realize that it was indeed a type of death. I was dying to everything that I thought I was…. But praise be to God. In the Christian faith we realize that death does not mean the end. Death brings with it an opportunity to be born again.
This brings me back to the question that my professor asked me when I first entered Shaw University Divinity School, who you be. My idea of manhood has gone from an idea of manhood as performance to manhood as being. I be a man who needs my community, I be a man who needs his family, I be a man who is afraid, I be a man who loves…. I be!
Black and Broken 