Monthly Archives: May 2013


Q BBQ!

 

Alright, fine- It’s a yard sale, technically, and there will indeed be BBQ.  Q Division’s Yard Sale is tomorrow and a bunch of Crash Safely folks will be there.

 

Ronnie Lane

And we’ll be hungry!

 

I’ve been meaning to post about this for a while, now, but I just got a new computer and the monitor is, well… overwhelming. Everything I type looks like it’s appearing across the street from me, which is a little disorienting.

 

huge monitor

Go ahead, try to spell correctly!

 

The Q Yard Sale is a lot of fun, and at last year’s event, the fun started on the red line on my way there.  While I’m not looking for anything in particular this year (in fact, I’m looking to give someone some music), I will probably leave there with some treasures. Unlike last year, I’m not in the process of moving the shows from one venue to another or changing dates.  I am simply waiting for the first round of the artwork!

Should you be wanting a quick rundown, here are the details as they are today.  Keep in mind these shows are in September, so be flexible with your iCal, ok? Ticket links are on the way as well for most nights. It’s not even July. I’m organized, but I’m not quite that good. Go ahead and give me some cute names for nights 2 and 4 as well.

Crash Safely Night #1: Packed with Hits!!

18+, $15.00
OBERON 2 Arrow Street Cambridge, MA

DJ/VJ Craig MacNeil of Videodrome Discotheque
The Upper Crust
John Powhida International Airport
Parlour Bells

Crash Safely Night #2

21+, $12.00    TICKETS
Davis Square Theatre  255 Elm Street Somerville, MA
The Nickel & Dime Band
Township
The Duckbills (members of the Figgs)
Mount Peru
Tsunami of Sound

Crash Safely Night #3: Plonkfest!

21+, $10.00
Midway Cafe, 3496 Washington Street Jamaica Plain, MA
Titanics
Corin Ashley
The Unholy III
The Phil Aiken Army
Lenny Lashley’s Gang of One

Crash Safely Night #4

21+, $10.00
Midway Cafe, 3496 Washington Street Jamaica Plain, MA
Sidewalk Driver
Gene Dante and The Future Starlets
My Own Worst Enemy
The I Want You
Cotton Candy

Soon, there will be posters.  Soon, there will be news of what goodies can be won in raffle and silent auction, too!


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!