This candid look at living with MSUD was written by Nick Lovrin. See his mother's account of his life under Family Histories, "Nick at 21."
As a child, I thought that maple syrup urine disease meant that my urine smelled like maple syrup.I really didn't understand why it would smell that way. I have had MSUD since birth. I am one of the lucky ones healthy enough to survive under the conditions of this disease.It affects my physical ability as well as my mental ability.
Let's start with the mental aspect first. Mentally I am pretty smart when it comes to material that I am interested in, but the other stuff is hard for me to learn. It isn't that I can't learn the material, it just takes me a little bit longer to comprehend the basics; then there is no stopping me. Even if I don't do that same thing for a while, I can go back and still have the knowledge and ability to do it. I can succeed at it just like the first time.
Let's take it one more step. I wanted to be a professional basketball player when I was younger. I thought I would make it, but come to find out, I didn't have the height, and I wasn't good enough to play it for a living. So all I do now is play for fun, and I like it.
Then a few years ago, I took up drums for a hobby. For a while, I thought I wanted to do this as a profession. I soon realized, after a little talk and some guidance, that I wasn't cut out to be a drummer. It takes a lot of leg and arm power, which requires a lot of energy to perform during a long concert. I knew I was having a hard time with the drums, because I would be on count (drummer talk) for the first measure, and then I would either increase or decrease the speed making the song sound funny and wrong. It is hard for me to concentrate on one aspect so that it at least sounds right.
This mental block of mine goes back as far as I can remember, and it hurt me a lot in high school.If I didn't have MSUD, I could have pushed myself harder and gotten straight A's, but school was hard for me.I worked hard to do my best, but got mostly C's and D's and only occasionally B's and A's. I guess you could say that I am a little slower than people my own age, and I'm mad about it. All I can say is I'm going to work hard to increase my intelligence to where I can function as normal as possible.
Now about my physical ability, the amount of energy in my body is quickly used up, and I am often tired. If I don't eat or drink my milk (MSUD diet powder mixed in a blender), then I need to have something that has a lot of calories. It will make me feel okay until I get my formula. I can't eat a lot of foods that other people eat, but some of the foods they eat look totally disgusting. If I don't eat right, I could have to go to the hospital where they do a lot of tests and give me shots and an IV. Being stuck with this disorder, for what might be my whole life, I have to work hard to keep myself at my full potential and keep my health in top shape. I have had my slip-ups in the past and have paid dearly for them.
I am upset a lot because I see people, like musicians, doing so much more than me and having fun doing what they do. I wish I could do that, but I have limitations and have to accept them and enjoy the hobbies I like and can do.
I mentioned the drums earlier. I still play them, but I am not as serious about them anymore. I took up singing, which brought childhood memories of when I was ten years of age. I got four of my friends together to form a group that performed for our day camp.We imitated "The New Kids On The Block," because they were what everyone my age listened to. I had fun performing on stage then, and to this day I want to be on stage as a musician more than ever.
I have a lot of obstacles in my way, but I'm willing to overcome them with all my might.MSUD is one of the obstacles, but instead of overcoming it, I will work with it and hope to increase my mental and physical abilities.
Part of the MSUD phenomenon that I have to work with is that I tire quickly. Driving is hard on me.When driving from work to where I live, which is only twenty to thirty minutes each way, I get tired and have to pull over for a nap or just relax a bit. It's just that after a hard day, my body needs to relax, and that is the only way I can make it home. I work in the shoe department of a store part time and attend school two days a week.
School is hard now (it never was easy), but classes are getting harder as I proceed with college.I'm taking two classes at this time, English 80 and Speech 212. English is hard and very boring. Speech, on the other hand, is a blast. The teacher, who is a bit on the weird side, is trying to make us learn more about our inner-self; it is called Interpersonal Communications.
I have another class that starts soon and I'm really anxious for it. It is Golf. I love the sport. When I was younger, and my dad was alive, we would play it. I remember when he would be doing something in the garage, and I got his putter out and started to putt little rocks on the concrete; he got so mad at me. The memory makes me laugh.
MSUD will affect almost anything I do in life, and I have to work around my disorder and make it work for me and not against me. Thanks for reading this little piece I have written.
- Nicholas Lovrin