Life in the Slow Lane : How I am dealing with Multiple Sclerosis
I hope you like the title. “Life in the Slow Lane.” That’s really what it feels like. Everything has slowed down. Slower than I would like it to be. I’m 24 years old. I’m part of the generation that wants everything fast. We want to get out of the house, we want to make lots of friends, make lots of money, and be as happy as possible, and do all those things right away. Can you blame us though? We are led to believe that we have to accomplish something and meet a particular “standard” of success before we hit a certain age. All of these “guides” come at us so fast. How to make money, How to be a better student, How to live a better life and how these things are necessary. What we seem to miss is that things take time. We have to slow down and see that things don’t happen overnight. How long should it take? We can never stop think about it because we are usually told how long it shouldn’t take. What we shouldn’t be doing at 18, 21, 35. So we panic and we try to get the ball rolling as soon as possible and we end up burning ourselves out. That’s the truth of it, but what does that have to do with Multiple Sclerosis? Well, everything.
Before I got diagnosed I was just what I described above. I was paranoid about the future. I had to be driving by 16, have worked before I was 18, and be kicked out and ready to live on my own right after college. I wanted to feel like less of a burden on my family. Financially and spiritually. I wanted to be able to return the favor and have them feel proud of the person their son became. When I didn’t feel like I achieved things, on the deadlines I set, the stress set in. That stress turned into self-doubt and often made me sick. Am I doing the right things? Am I making the right choices? Are my choices valuable? For years that stuff affected everything I did. I could never relax. I was always stressed about what was due, what needed to be turned in. Would I have the money for this? Am I being an inconvenience? It really prevented me from enjoying anything, even the things I set out to do on my own. “Alright buddy, that’s all fine and good but what about the MS?” I’m getting to that.
So as a person who feels like he’s trying beat some kind of life clock, something he feels will prevent him from keeping up will have some serious side effects. Multiple Sclerosis didn’t just slow me down. It made me feel like the clock had stopped. I was no longer watching the minutes tick away , paranoid about the future. I saw it as if the clock had struck 0. It was done, I was done. I didn’t feel like I had much left. I feel like everything leading up to that diagnosis had fallen through and I saw myself as a failure. Before my first incident I had just come out of a very stressful period. College was a trial in of itself and I had just taken on a huge venture. Ondayo, LLC. My game company. I got myself some people I could trust, hashed out the details put some money together, and made huge decision that would take hold of my life. It has not been easy. This is probably one of the hardest things I have ever done. There was so much involved in making this thing a reality. Not even just the financial side, but the emotional side. The human side. I had to deal with the initial negativity, the lack of support, and then my own self-doubts. I had to push those aside and operate as what I felt made me a, functional leader. I think I did well enough but the stress was intense. I didn’t sleep for days while I plugged in on this project. I didn’t eat, I didn’t bathe. I literally let myself go for the sake of this success. Not once in my mind did I think, “Oh it’s a start up, it’s gonna take time.” I was too busy making sure that I did everything humanly possible within this presumed deadline. I put everyone else’s peace of mind before my own. “Hey Dj, I’m gonna get to this tomorrow. Is that cool?” they would say. Of course that was cool. Come on, I’m not a slave driver, but I wouldn’t give myself that consideration. I had to be up, I had to finish, I had to make this happen…now.
Now. That’s what I wanted. For things to happen Now. The reality was, nothing was happening then and there. Everything took time. Everything was moving very slow. Why was that a problem for me? I was still in school while I set this up. I should have just stepped back and seen that. I thought I did at one point. While I was working on the project I did try work on myself, through Kung Fu. Kung Fu was new to me but martial arts has been in my life forever. 15 years of it doesn’t just wash way. With Kung Fu I felt a new fire ignite in my soul. The stress from school, from the project, they were insignificant in Kung Fu. Not just because it was a release, a way to burn off steam, I felt very comfortable there. I worked hard to make myself something special in that school. I wasn’t just accepted into it either. I had earn my right train there. My master honestly thought that I wasn’t going to say committed. My “cup was full” if you will. I proved it to him that I wanted it more than anything. I worked till the point of exhaustion. I wanted to live and breathe the art. I got to know everyone in the school. I became a part of their community. That was a home for me. The training brothers and sisters were family and when my master put my name on the wall of students, a year after I had been there, I knew I belonged there. That was until Multiple fucking Sclerosis went and screwed that up for me.
In 2013, I graduated. I didn’t find a job in the area of my choosing but I still had Ondayo, LLC. Job hunting sucked but I at least I could train. I did some interning at a toy shop at home, thanks to a friend of mine but that didn’t last. I was back to no job status, but I still had Kung Fu. Every day I trained. I wanted to keep my promise to the school, to come back as if I never left. I even got my martial arts associates to train with me, even friends. Of course none of the main curriculum but the body conditioning was fair game. In those few moments it felt like I was back at the school, until little by little they stopped showing up. I was hurt but I still had my training. I got up, went to do my exercise and I started to feel really weak in one side of my body. I didn’t think anything of it. I trained very hard the day before. I probably just to need to take a break, so I sat down. After minutes I caught my breath I tried to get up. I still felt exhausted. I must have really worn myself out. Now that I think about it I was a little tired the other day, so I just laid down. After about an hour on the floor it was time to get up. Easier said than done. That was probably the most difficult thing I did the entire day. I managed to stand but my left leg felt numb. Not just left leg, my left arm, and then my face. Was I having a stroke? I didn’t feel anything sagging, my eyes didn’t feel blurry. I knew I could speak clearly. I remember because my mom had just come home and I remember telling her how I felt. That ended in a trip to the hospital. I was there for a few days. They ran some tests and then hit me with first bad news. “We suspect you have MS.” I had no idea what that was. I‘ve never heard of it before and as the doctor went on about it I wish he had never explained it. He said a lot that I don’t remember too well but I know the moment I stopped listening was when he said, “You may never do Kung Fu again.” How could he say that to me? He has no idea how much that meant to me and he just blatantly threw it in my face. I was done. I didn’t want anymore, but there was more. There were steroid treatments, there was physical therapy, a lumbar puncture, and back then it was only speculation. I was not ready to accept it could have been MS. I was in Denial. It was just one side of my body. I just worked myself too hard, the stress got to me, whatever was furthers from the diagnosis.
For a while that worked. I came out of physical therapy feeling reasonably healthy. I got a job that was four hours away from Kung Fu, not too bad. I even got an apartment! One where I didn’t have to share with four other students. It was just me. I slept on an air mattress and I had very little furniture aside from that but it was mine. I was ready to live on my own. All those things I had worried about before didn’t matter as much. I was still very weak though. I didn’t feel as bad as before but I was afraid push myself to train. Just on the off chance I had a repeat incident. So when I moved in I made a conscious decision to wait until I felt I was ready to train again. I got to work, I adjusted well. I got employee of the month! I wasn’t even there a year yet. I took up piano lessons with an excellent teacher! I love that woman. Everything seemed alright. Yes I still had my stressors and doubts but that was normal for me. I figured I could manage. Then 9 nine months later, bam. Why couldn’t it have been a baby? That’s what people are more comfortable with showing up in 9 months. For the most part anyway. Not some fucking debilitating life alerting bullshit! Damn it! I was making progress. I was getting there, slowly, but I was getting there. Apparently MS didn’t think it was slow enough. I first realized it was coming back on the job. My work flow started to slow, I was feeling extremely tired from doing my day to day duties. The strength was gone. It wasn’t much then but enough to feel the difference. Fast forward past the second round of denial, the doctor scheduling, the flight back home in shame, the second admittance to the hospital, the fight to just be seen in time, and then my doctor says it’s official, “You have MS.” I was completely and utterly defeated by this. The way I reacted you’d think I got cancer but it mind, at least Cancer could kill me. This MS thing sits in me, taunts, and pushes my handicap in my face. You want move that chair? No. You want to drive? No. You want to get into the shower without feeling like you just ran marathon just to get in there? No, fuck you. That’s what MS sounds like in my mind. “Fuck you. Fuck you for trying. Fuck you for attempting to better yourself. Fuck you for having dreams of your ideal self.” That was the voice of MS. For months I thought like that. You couldn’t talk to me about MS. I didn’t want to hear someone else’s success story, or what celebrity has MS, or who is doing what. All I could ask myself was, why? Why now? Why me? What are you doing this to me? I looked for any reason I could. Am I a bad person? Did I leave the seat up one too many times? Did I cut off some witch doctor in traffic? Is this is a punishment from God? Is that what I get for not believing? Well shit, that’s one way to get followers, put their backs against the wall. What’s next life? Are you going to take my business away? My friends? My legs?
Everything took that much longer to do. Walking, eating, and getting up the stairs. I was in the “Slow Lane” now. People would try to get me to not see it that way. They would pray. They would talk to me about it and they would research. No one more so than my mom who was always fighting to keep me positive. By this point you can see that I was pretty negative about the whole thing. I felt that life was playing a cruel game with me. It’s done things like that to me in the past. Bullies, parent issues, failed relationships, things getting shut down, closures. I always attributed them to my own failures and this unknown entity that ensures when something bombs it’s cataclysmic. I thought I had a good reason for thinking that way. One thing comes to mind. You want to hear some real Irony? You member Ondayo, LLC the game company. Our first and current project is called Ataxia. Ataxia, in its Greek origin is defined as a “lack of order” which is a central premise to the game. Very important to the plot. However the rest of definition goes like this “Ataxia is a neurological sign consisting of lack of voluntary coordination of muscle movements that includes gait abnormality. Ataxia is a non-specific clinical manifestation implying dysfunction of the parts of the nervous system that coordinate movement, such as the cerebellum. Ataxia can be limited to one side of the body,” sound familiar? Here’s the kicker. “Ataxia is common in multiple sclerosis.” Now ain’t that some shit? You mean tell me, the game I was working on back college just so happened to be named after a condition that I just so happen to have symptoms of? That must mean only one thing. I was born to make this game! It’s destiny calling! I hope you laughed at that. I am honestly trying to be funny but I will say that it does lend to some something very serious. The project definitely consumed me. It was such a big part of me. Even when I was doing Kung Fu my mind was always on that thing.
So, it’s been two months since my diagnosis (May 2015). In that time I’ve had to do quite a bit of thinking. Thinking about why I felt so alone and angry to such extremes. It wasn’t just MS. I was dealing with so much stuff before that. MS was just the breaking point. My depression didn’t just stem from the diagnosis. I was already too deep into something much worse. Things I had tried to fix in the past and what I felt were never successful. So now that my body is in the “slow lane” I’m trying to be ok with my mind being there. I am trying again to get help for those things. Usually during a period of depression I go through a pattern. Isolate myself, blame myself, and then get real tired of hearing myself complain. After a while I just get disgusted with my feelings and just get focused on something else. However, I don’t think that’s helped me get through anything, just put it to the side. With MS keeping me from my usual distractions I have more time to think. I can dedicate my energy to what still works right. My mind. I won’t say that I’m better for it….not yet. I would be lying if I said that. MS still pisses me off and writing about this had me going in and out of that anger but I will say I am trying. Honestly trying. Not out of desperation but of obligation to myself. I don’t think “Life in the slow lane” is bad. It’s just different and I want to learn how to be ok with it.
