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Living Life as a Musician with a Disability- Part 2: "Don't Stop Me Now"

First things first! I'm alive! I promise this isn't my ghost typing this right now.

Or is it? Muahahaha.

Now that you know a little bit of the history (if you haven't read part 1 and want to, just go back to the blog page), I can explain a little bit more about how I had to adjust. The differences between what 15 year old Amy thought being a musician would look like, and the reality. The differences even in the life that most musicians live, and the things we have to consider constantly.

When starting a band for the first time, I knew there would be some things I would have to think about. The first thing I knew was I would probably need another singer up there with me. I mean, I would have asked Katelyn to be in the band whether I had this disability or not. She's my partner in crime, and so doing this without her was never an option, but I also knew I needed her. I knew that there were possibilities of nights that I couldn't do it, nights that I might be in the hospital or emergency room, nights where I forgot my words and needed to trust there would be someone to pick up where I left off. I knew having someone that I had confidence in to take over if that came up was important. There have been nights where I've had chest spasms on stage, and had to turn to her and say "Take the next song", as I excuse myself from stage to go throw up. She would nod, I would casually leave the stage, and then pop a mint and come back up at the end of the song. Most people would never know, because of the trust I have in her, and how flawlessly we've learned to make it work. Most bands don't have multiple lead singers. It's not something you see often, but it is something I am so thankful for, and something I'm so glad we thought of.

In any band, trust is important to making it work, but I quickly realized I needed to trust the people around me more than just a normal band experience. I didn't just have to depend on Katelyn, I had to depend on everyone else too. Incase I couldn't talk, incase I passed out, incase anything went wrong. They all had to know the ins and outs of my disability and how to understand and handle it if anything happened on or off stage. I have been blessed with amazing band mates that know me so well. I am thankful for it, but I knew I couldn't just lay it at their feet, and then do whatever I wanted. I had to also learn how to know when I needed to ask for that help, and how to put precautions in place so I didn't have to depend on them so much. I needed to make it so they could trust me too, and could trust that I would do everything I could to always be there.

This meant that I had to realize that we would have to do some things differently. This meant learning to take naps or rest time before a show. This meant planning my weeks so I didn't over-do it, and make myself sick before a show. This meant putting things in place like tablets with the lyrics on them, incase I did blackout on stage ,or was having a bad brain fog night. This meant making sure we had a few extra songs ready incase I had to step off stage for a "break", someone else could pick up in my place. This meant creating signals for each other, so the audience might not know, but we did that I needed to step off for a second. This meant keeping an extra dose of my medication in my gig bag. There were so many extra things that had to be considered, but it was worth it, because we were still getting to do what we love with people we loved and trusted.

I think the tablet was the hardest thing for me to accept. I was a pro when I was younger at memorizing scripts, songs, lyrics. I could memorize whole marching band shows. Whole musicals that I was the lead in. The worse my POTS got, though, the more my memory suffered. I had always learned that you are supposed to memorize your music on stage so you can be free to perform. I felt like a failure when I realized that my brain wouldn't work that way anymore. It's not like my memory is completely gone, but when I'm having a down swing, sometimes I can't even form sentences, or comprehend what people are saying, let alone recall a 4 hour show's worth of music. Then add the anxiety of "I can't remember the lyrics" on top of that, and it is the worst feeling in the world (Ok that might be overstating it, but still). I had to come to the acceptance that just because my body and brain work differently, doesn't mean I'm any less of a musician. So I invested in a tablet and stand for it. There has definitely been times I've been called out on it. It's ok for the people playing instruments to have tablets, but not the lead singers apparently. There's been times I listened to those comments and beat myself up about it, if I'm honest. Now I've come to a place where I have accepted it. I know my body and my disability, and I'd like to swallow my pride and give the best show I can, even if that means I need the lyrics in front of me to help sometimes.

You might not know it, but a lot of musicians have a very strict idea of how things should be done. For people who are titled as people who love living the "Free life", a lot of them have very strong opinions about how things should be done. One I heard constantly is that you had to "Pay your dues". This meant traveling around in a tiny van, squished in, sleeping in Walmart parking lots and on people's couches, skipping eating all day because you can't afford it, and playing shows on the road. Touring was always something I wanted to do, but if that's how I had to do it, it wasn't an option for me. Even if I WANTED to, my body would never make it through that. A couple days in, I wouldn't even be able to play a show. While I commend the people who were able to do that, I know I need to take care of myself to put on a performance worth traveling for. I had been told I wouldn't be able to tour by other musicians, but I had a desire to do it anyway. I started thinking, Why does it have to be that way?

Who wrote the almighty rule book on musicians touring that said it had to be some form of torture? There had to be ways that it could be done while taking care of myself.

So I sat down and started making a list of what I would need to be able to tour.

  1. I would need a place to get good rest, and I would need a place to lay down and elevate my legs when they start to swell.

  2. I would need to be able to eat. Eating what I need is a BIG part of making sure my body stays functioning.

  3. I would need to plan it for less than two weeks on the road, cause I would need to be back in time for my infusion. It would be bad if I skipped an infusion.

  4. I would need to plan recovery time.

  5. I would need to be with people I trust.

I started looking into options. An RV seemed like the best option. It gave us a place to sleep each night. Gave me a place to lay down if needed. Gave us a kitchen and a fridge to stock up. Gave us a bathroom. It also rented for just a little bit more than a van. Everyone going on tour with us thought it was an awesome idea. Some others looked at us like we were just too spoiled and like it was a dumb idea. I knew that if this was something I wanted to do, though, I had to take care of myself.

Soon I will write a blog all about how we planned our first tour (that got cancelled because of covid), but today I'm here to tell you that just because you are choosing to take care of yourself, doesn't mean you aren't "paying your dues". It's called being smart, and doing what you need to do to give the best performance possible.

There's always going to be someone that wants to say something about how you're doing it all wrong. There's always going to be things that make you feel like you can't do it. If it's really what you love, though, you will find a way around it. I've been blessed with a gift, and I am not going to hide it and throw it away just because I have a disability.

It's funny. I was told I couldn't work a regular job, and they weren't incorrect. I feel like I work on my music more than I ever would at a 9-5 job. The difference is, I set my own timelines. I can take time off when my body just won't do it. I have set safe guards in place because we run it all. Even more than all that, though, it heals me in some way. All this work, all these considerations, and I still find healing in it. That's what makes it worth it to me.

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