2013


What I usually don’t say

Most of the time, I don’t talk about it, even here.  I hesitate, even though I publicize lots of things about my own medical issues, I don’t like to talk about it because it feels so….old to do something like that.

mean-old-lady

What?

 

While Crash Safely is ultimately supposed to be positive and fun, there’s a whole lot of the opposite out there when dealing with something like MS. I realized that there are plenty of people younger than myself (that is, in high school) and much older than myself ( i.e. looking at retirement and having been diagnosed later in life anyway) who are blogging about living with MS. Neither of these groups really speak to me.  I don’t have aspirations to get a great SAT score or watch my kids go off to college.  I live in a city, I like loud, live music, drag queens, turkey bowling, shooting and editing videos, robot puppets, coming up with fake band names and misadventures that generally involve glitter and/or leather.

Hedwig

Did I say “glitter?” I meant “bubbles.”

 

Needless to say, I saw none of that in the patient blogs about high school or retirement with MS.  Now I realize that a lot of these blogs are aiming to capture a large portion of the population and maybe I’m just a weirdo, but really?  I know I’m not the only MS patient who isn’t just rolling over and letting the disease tell me what to do.  I also know I’m not the only one who is fighting to live what was my normal life, even if that means choosing between said normalcy now and a possible sudden, early grave.

homes star runner suck dragon

Sing it, Suck Dragon!

 

Since I started Crash Safely in 2010, I have been on one of the most effective MS medications on the market today.  I haven’t relapsed since I started it, and damage that had been done prior to starting it is slowly starting to heal.

But….

I’m at risk for a crazy brain infection that could either kill me or severely disable me.  The longer I’m on this drug, the greater my chances of getting this infection become.  Truth is, no one knows what happens when you’re on it for longer than 4 years, so doctors tend to get you off of it quickly.

There’s nothing that works like this drug, currently, though, without a similar risk. I refuse to change my treatment, even though it means an incremental uptick in the probability of getting a crazy brain infection.  I’m currently at a  4/1,000 risk, which actually is less than one half of one percent. They don’t tell you the risk like that, though, because hey! a 99% risk that nothing will happen sounds pretty….positive, right?

There’s still a feeling of dread- what if I’m wrong? Also, what if my math’s wrong? What if I stay on this drug longer than my doctor’s comfortable with and I have a complication? What if I have to explain this to an employer? A family member? A random internet troll who really, really wants me to just let the bees sting my soul clear out of my eyeballs? Did I just mess up a possible great employment opportunity by writing that? Do my co-workers think I get ‘special’ treatment when I leave work early to get this drug? What if I develop antibodies to the drug, or allergies?  How will my doctors know I have that infection and I’m not just relapsing?  What if I give in and try another drug and I relapse and have to learn how to walk/write/tie my shoes all over again?

Death, the Temp Reaper.

OK, stop it.

 

All of this is my long-winded way of saying that while I don’t think about- or have- symptoms everyday- I do have a good amount of worry.  As abstract as MS can sometimes be presented as it’s a real destroyer of confidence. There are no easy choices when you live with MS, but it certainly does make the task of putting together benefit concerts seem a lot less complex.

By participating in bikeMS or  in the shows, by going to them, buying raffle tickets and bidding on silent auctions as part of Crash Safely, you help- even if it’s just getting me- and others like me- away from the spiral of over-thinking dealing with MS.

 

Serious stuff out of the way, I promise to return to being funny and sharing photos of the incoming raffle and silent auction items. Promise.

 


Announcing…

I am excited to announce the venues and acts that are going to be participating in our four nights of shows this year!

Make sure you clear your schedule on the following nights to see all of these amazing folks:

9/13, 9/14, 9/20 and 9/21

Where are the shows taking place?
OBERON               Davis Square Theatre              Midway Cafe

 

[flagallery gid=4 name=Gallery]

 

DJ/VJ Craig MacNeil of Videodrome Discotheque          The Upper Crust           Parlour Bells  

John Powhida International Airport                                Township                       Mount Peru

The Nickel & Dime Band                                               Tsunami of Sound         The Titanics

The Duckbills (members of The Figgs)                         Corin Ashley                  The Unholy III

Lenny Lashley’s Gang of One                                      Phil Aiken Army              Sidewalk Driver

Gene Dante and The Future Starlets                           The I Want You               My Own Worst Enemy

Cotton Candy

 

4 Nights. 3 Venues. 2 Weekends. 1 Cause- a Cure for MS!

See you in September!


MS Awareness Week

This week is MS Awareness week in the US.  You may have seen tweets that begin with “I CONNECT” and hashtagged with #MSConnection; that’s one of the ways this is manifesting this year.

MS Week banner

In accidental concert with MS Awareness week, David Bowie released a new (amazing) record.  I bring this up for  4 reasons: 1) I’m listening to it right now 2) I love Bowie 3) So do many, many of the bands who are participating in Crash Safely this year 3) I had a revelation regarding one of the songs on the new record, called “Boss of Me.”  (No, it’s not a They Might Be Giants cover). 

David Bowie The Next Day Album Cover

Shameless plug.

Look for a preview of the song here.

While there’s one interpretation of the lyrics, you could easily change the meaning of the “small town girl” becoming the “boss of me” to be…

well….

something like MS.
I am thinking of making a video for the song using that angle in a vague way.

First, however, I need to focus on guerrilla video shoots with John Powhida for the new John Powhida International Airport tunes.

JPo

Shameless plug 2.

I’ll be quite busy this weekend with JPo, and Pete Hayes is registering the Maybe Sump’MS for the 2013 bikeMS NYC ride.  Keep an eye out for links to join or donate to the team soon!


It begins!

Year three’s already off to a quick start.  Every year, the planning for next year starts to happen during that year’s shows.  It can be confusing, keeping track of all of this year’s stuff as well as next year’s. It always starts with the bands.  Sometimes, there are groups that want to play, but the dates didn’t work out with their schedules.  Sometimes, bands hear about the shows and inquire about what might be going on for the next year. There are many, many stray bits of paper floating around Crash Safely HQ with band and venue names on them, like some bizarre sudoku. It all falls together, but it’s a lot easier to plan for September in March than, say, July.

TARDIS

We may actually need to bend space and time for this.

We actually had venue holds well in advance this year. I think last year I had my heart set on one particular place that didn’t pan out, only to end up somewhere that was new to most of us! This year, I will say this much in advance:

  • We have dates at three different venues. One in Harvard Square, one in Central Square, and one in Jamaica Plain.
  • It’s looking like there will be DOUBLE the amount of nights this year.  Four nights, not two.  Don’t worry; they’re not right in a row.  There’s a nap in between. Promise.
  • The sheer amount of bands and artists who have already gotten back to Nick about the dates and can do it is amazing! We’ll need all four nights just so that everyone can have a decent set time.

While Crash Safely has been hosting a ton of bands over two nights, I want to make sure no one feels rushed this time around.

More news, including announcements of who is playing, where they’re playing and what dates this craziness is happening soon.

Also on the horizon: The Maybe Sump’MS are signing up early for the bikeMS ride this year.  Want to get credit for your awesome fundraising? Can’t ride a bike to save your life?  Fear not; you can be a virtual rider.  This year I’ll have to be one again, as my brother is getting married the same weekend as the ride.  As cute as it would be to go from a wedding in Maine to a bike  ride in New York… I think the ride will survive me eating cake with my brother and soon to be sister-in-law.

Andy

As long as he promises not to break out these glasses, we’re all good.


Getting ready for year 3

I can’t believe this is the third year of Crash Safely! We’re already getting in touch with folks for this year’s bills, and if all goes according to plan, there will be three nights of shows.

There are strong possibilities of some really, really amazing acts joining us this year for the first time, as well as the awesome groups who’ve been involved so far. I want to say more, but nothing’s ready to go yet…just know that it will likely be more exciting than before!

While I was talking with some folks at a show I was shooting for a video for John Powhida International Airport, I realized that there is some confusion regarding who does what (and it certainly doesn’t help that I keep switching from first person plural to singular in my blog posts). With that in mind, here’s a quick rundown:

When I say “we,” I mean everyone involved in Crash Safely, from the bands, the venues, the sponsors, the National MS Society contacts, the planners, the volunteers and anyone else who happens to lend a hand. I want to include everyone, hence the “we.”

Who’s shows are these, anyway?
That’s where the first person singular begins. They are my shows, not, as some seem to believe, the Night Ridah’s/Nick Blakey’s. He works hard on these shows and is usually the press contact, but he’s not the guy negotiating the contracts, securing the venues or in negotiation with vendors for raffle items. I realize that there are those who can’t fathom a woman planning these types of things and thus default to assuming the guy they’re speaking to must be the person putting it on, but you’d be wrong.

This lady also puts on festival shows.

This lady also puts on festival shows. And beatdowns.

The thing is, both Nick and I have made this pretty clear to people- he’s working for the shows, and while he certainly does have sway, he’s not the one putting them together. So if you want in-I’m happy to hear you out, believe me! But the only way I’ll hear about it is if you talk to me directly. I don’t bite- and I swear, unless something’s changed in the last nanosecond- you can’t catch MS by sending me an email.

Nick’s a busy guy; he’s in school full time and working a few jobs right now. He also is in charge of one of the more delicate operations for this year’s shows, so he’s got a lot to do already for Crash Safely. Give the man a hug! The food at the dinner he attended did not include the recently mentioned foodstuffs we were treated to this year, so he may be feeling a little less loved these days.

BikeMS Dinner

Although the suspicious meatballs did return…

Now that’s out of the way, we can get back to the music.

Keep an eye out for the video I mentioned earlier and stay tuned for the updates with all the details of who’s playing when (and where)!