My first blog!!! Let me see you 1,2, Step!

I would first like to say thank you from the most genuine part of my heart. The amount of hugs and I love you’s I have received in the past month and a half has been quite overwhelming. I have taken the last month and a half to get through a serious amount of paperwork reading and research to understand this disease that is taking over my life and taking me away from all of you. There are a lot of big girl adult decisions I had to make in the last month and we all know that the Harv is nothing but a big kid so it has not been fun but in the midst of all that roughness I have seen many of you dancing laughing and enjoying life and it gives me so much more than you realize.

Being the Harv that I am, I cannot lie to you and tell you that this is easy. This disease is heartless and brutal it is destroying my life but not the spirit of it. I cannot imagine any human being being able to get through the daily tides of this disease without a support system as strong and bold as the ones that surround me.

Thank you all for signing up at harvination.com, my friend Allison has been nothing short of amazing and deserves a cape. She has done an amazing job at getting the website up and running and adding some of my stuff to it while I have taken this month to get my shit together. I have recorded some pretty interesting stuff along the way: going to see Stevie wonder and India Arie, the births of Asher Powers Davis and Riley Von Lettow, got to be the DJ again at GLSEN prom, officiated the wedding of two good friends, met my little brother and proceeded to have many other good times with him, and much much more. I mean let’s just be honest I have the most amazing life of anyone I’ve ever met so it’s pretty much the most unfair thing in the universe that I would be ripped away from that.

The days are complicated and each one is different. I finally started to get a schedule and routine down for taking care of myself and getting a little bit of help towards my mobility saving my hands and also the ups and downs of my thoughts and emotions. Clearly this consumes a shit ton of my life and hours but we all know I’ve also taken time for myself to go out and listen to good music and experience life in the days with my friends and family once again. I cannot lie – it gets extremely extremely tiring. The world of fatigue that I experience is unlike anything I can put into words or say that maybe anyone without ALS has experienced. Sometimes I start them with muscle cramps that shred through my body and leave me feeling like I put my legs or arms through a paper shredder… and it gets better. Other days I start them feeling good and wanting to take over the world but then I realize right around noon it feels like I’ve been handed 1000 bricks to my body, which leaves my legs shaking like terrified leaves and my arms just dangling like they’re useless when really I know they can change the world if they would just stick with me a little bit longer because there is so much we can do together. The thought of losing my legs is not scary but as this disease takes over my hands and threatens the ability I have to play music and speak to each of you daily I realize how blessed each of us are and how extremely fortunate I have been to be able to do that in the first place.

18 years ago when I moved to the city of Cincinnati I was nowhere near the ability to do either one of those things. I was a good kid with a good heart but everything else about me was somewhere deep inside a dark place that did not know how to get out. Music has changed every bit of that for me and I sit here today an entirely different person – a person with hope, a person with peace, and a person who feels more alive than ever in spite of dying more each day.

So with all that being said, this is technically my first blog. Everything else posted is due to my friend Allison who, let me say that again, Allison is amazing and I am super super thankful for her. I did this blog by recording my voice into a program called DragonDictate which allows me not have to use my hands. I actually did use my hands more than I thought I would just because I really don’t know how to edit what it misreads that I’m not really saying. But so far it’s pretty accurate and a little helpful and I am hoping with a little practice it becomes pretty easy and I can start communicating a whole lot more.

Tomorrow I go get fitted for my wheelchair.

I don’t really know what it is that I am feeling but I’m feeling a lot of heavy things about that. The people that work with me at Drake are amazing and I am sure they will be very comforting in this process. But still, that’s just absolute bullshit. I want to ride my dang bike in the eco-village, and I really wanted to join the kickball league this summer and I had my heart set on that slip and slide thing coming to the city – that shit looks real fun. But you know what, oh well no big deal, there’s still a whole lot of stuff I can still do that is just as fun. So let me tell you about one of those things.

Next Saturday, May 2, 2015 at the Madison in Covington I am going to murder the freaking dance floor. I don’t know how much longer I will technically be able to pull off house music sets because of my hands. The precision of mixing House music takes a lot of heart and a lot of focus and steady hands are important too. But I do know this I’m gonna play that stuff until it’s so bad that only I can hear the mixes and I am super excited to be given a spot on the lineup for Saturday night on such a huge stage and really loud sound system. I’ve been involved in the Stillfresh parties my entire time here in Cincinnati and they are always an epic throwdown. I hope to see some friendly faces out that night and the nights to come. I will be posting another blog soon and more information about the things coming up in May for ALS awareness month.

I’m still looking for people to jump on board with me for the cause. If you own a store, a bar, restaurant, or service – pretty much if you have something you can do to raise money or awareness hit me up with your ideas. We have some random stuff in motion for the month of May involving yoga, a cycling class, a couple nights at a few bars, but we are looking for more. I want people to go nowhere throughout the summer that they don’t see something that has to do with ALS. Maybe your store could have a container in it, or ask its customers to add a dollar to the purchase for the cause, or maybe you can offer a service or a special for the month that proceeds go towards ALS. Maybe we could do a charity softball game or kickball game, I also like the idea of everyone getting together on Fountain Square for huge picture that says Cincinnati is on board with ALS. I gotta million ideas and hopefully you guys have some so hit me up let’s make this happen. Okay so I’m summing up this blog now it’s been a little irritating for me to make this program work and I really want to go to this drum circle
And Get some fresh air.

But before I end this I just want you to know I have really good Karma. Like for instance today when I was doing this blog and I may or may not have felt a little bit emotional. Sure enough I find this super awesome track that I can play next Saturday at the Madison and I am super pumped to drop this on a loud Soundsystem!

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3 Comments

  1. Love you Harv! Great first blog post. I was just talking to the people at work about having a container out for donations. Maybe we need to have another craft dinner party night except this time instead of paper cranes we make the containers 🙂

  2. You are a strong person. Keep as positive as you can!

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