Lupus, Chiari, and being a musician.

I’m including chiari in this post because I think it partly effects my ability to play. Tell me what you think.

when I was around 9 I took up the clarinet. My school had a music program and after debating between clarinet, flute, and drums, I settled on the clarinet. I didn’t want to play the highest instrument they offered, and I didn’t want to carry a heavy snare in parades. From then on I spent about 2 years in their music program. I could sight-read music, and play songs from movies. I eventually gave up going to the music programs because it started to become more demanding. They started making us come after school as well as pulling us out of class. I was too tired to be marching in a field with my instrument at the end of the day.

A few years went by, and at 12 I decided to take up guitar. I was kind of tired of blowing into an instrument. It would make me tired and give me a headache sometimes, so I opted for something that didn’t require your lungs. The church where my mom worked was giving guitar lessons. They let me borrow a guitar since I didn’t have my own, which later became my guitar, because the guitar teacher suddenly moved, and he had borrowed it from some school to give to me, and I don’t know, I just have it now. Anyway, it’s a Fender Squier classical acoustic (nylon string). I’m unsure about the model number and all that. Decent guitar, and carried me over many years of practicing, but not exactly the guitar for the type of music I like to play. Steel strings are more the sound I’m looking for, and I later bought a Tansen at a pawn shop, which is apparently a big guitar brand in India, and hard to find in the US. It sounds great, so I’m pretty happy with it. The tuning doesn’t slip, either, which is probably my favorite thing about the guitar. Also, steel string guitars have a slimmer neck than classicals, so it’s been a nice switch for my hands. I can also play standing up now. Classical guitars don’t have strap hardware(at least mine didn’t), so I always had to sit to play before.

I have an electric guitar that I got as an 8th grade graduation present, so it’s got some mileage on it. It’s an Ibanez gax50. It’s great, but it’s pretty heavy. I’d love to invest in something lighter, and that isn’t neck-heavy, because it droops to the floor and it’s annoying. It’s still my baby though.

Playing has proven to be difficult, but I’m extremely stubborn, so I refuse to give it up. For starters, I’ve completely lost the ability to read music, and have never really been able to get it back, no matter how hard I try. Tabs make things better and worse. I can learn songs but then I completely skip over learning to read music. I think the chiari effects my memory, because I seem to have a really hard time learning new things. I even have a hard time learning new songs, which can be frustrating, because by the time I learn the song I am absolutely sick of it. The other thing that makes guitar hard is the fact that my hands are terrible. They cramp up real easily, and I feel like I can never play for a long enough time to build up the callouses on my fingers so the strings don’t bruise them. The chiari also effects my dexterity, so I have been unable to play anything real complicated because of all these factors. And singing and playing at the same time is just impossible for me. My brain doesn’t allow me to do 2 things at once. I just have a really terrible lack of clarity in my head a lot of the time. It’s been a real challenge, but I’m not about to give it up anytime soon.

I’ve been dealing with a lot of new numbness and tingling in my fingers lately. They get so numb I lose my control and I can’t do anything that requires fine motor skills, like play video games or button a shirt. It’s painful and I don’t know why it’s happening, but it’s making guitar that much harder.

I took up the mandolin a few years ago, which I love, but it is very hard on my hands. The strings are a lot harder to push down than on a guitar, especially in the lower frets (closest to the headstock) I’d really love to learn Irish Jigs, so I’m keeping at it, no matter how much my hands despise it.

I’ve taken a few piano classes, both of which I failed because I didn’t understand music theory. The teacher sort of sprung it on us right before the semester ended instead of teaching it to us the entire semester, and it just didn’t click for me in 2 weeks. I got to a point where I was starting to be able to read treble clef, but then bass clef messed me all up. I haven’t played piano in a while. I’d like to learn to play the right way, without a teacher who made me feel a lot of stress and pressure. One of the reasons why it didn’t stick with me is because when I’m nervous I don’t remember things.

And, of course, playing can be physically taxing. I can’t sit or stand for long periods of time without my neck and back knotting up, so I try to keep practice around 20 minutes. It’s hard to learn anything really well in 20 minutes.

I feel funny telling people I’ve been playing guitar for ten years. I certainly don’t have ten years worth of skill. But I do have ten years worth of love for it. So I guess it evens out. It’s been both frustrating and enjoyable, and I hope I can get to a point where it’s no longer frustrating or painful to play. I know my hands definitely need more exercise. My brain probably needs more cognitive exercise as well. I’d really like to do something with music, so I will keep at it so I am able to make it happen.

I would really like to take up the drums at some point. It’s something I’ve always wanted to do, and something that just seems to naturally make sense to my brain. I am unsure how my body will handle it since I’ve never played before. I think that when I am able to exercise regularly without adverse effects, then I am probably ready to take up the drums.



  1. I am amazed at your perseverance! It is obvious you love music and I hope you find the instrument that feeds this love and allows you to express your passion. I tried piano, but I have special dyslexia (I cant tell right from left, goodnesss DONT ask me for directions 🙂 ) so piano is about impossible. So I show my love for music in singing. No need for fine hand control or the like.

    • I have Addison’s Disease (adrenals) and I get tested for Celiac regularly since I have a higher chance of developing it. So far, it’s always been negative. Thanks for pointing it out. It’s always in the back of my mind. I have other weird new food sensitivities so I’m watching it closely. I’m pretty sensitive to salt and sugar, especially high fructose corn syrup for some reason, and I’ve cut out caffeine as well. I was never a big caffeine user, just occasional coffee or tea, but it really bothers my heart now. I’ve been to the cardio and everything is healthy there. Just a weird aversion to it now I guess. Good luck and leave a comment anytime, I try to always get back to them 🙂

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