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Running away

You may have seen in your social media feeds some form of the same article about the young runner with MS.   The article was no doubt run to coincide with MS Awareness Day, Week Month as a feel good “aw, it’s not so bad! Look at the runner with MS!” story.  While I understand on some level the need for positive examples of people with MS, sometimes these things accidentally undermine the intent of the message. Making people who don’t already deal with MS aware of how complex a disease MS actually can be is a very good idea, and there’s just no way to capture everyone’s experience with it in one short article, but there are a few things that made me feel strange after reading in this one that  the runner’s coach thought she may have a “competitive advantage” because her legs go numb while she’s running.

 

Read that again.  Think about the last time you had an arm or leg go numb. Maybe your leg fell asleep while you were binge-watching Breaking Bad.  The first thing you’re thinking probably isn’t  “I’m going to win the race!”  It’s more than likely “Ow.”

This will be my best time yet!

This will be my best time yet!

 

That’s what that ‘numbness’ feels like, so I don’t think anyone who’s running races with that lovely side effect is going to be in the winner’s circle anytime soon.  That said, I understand why she continues, as it’s very similar to my drive to continue- just going everything that I can, while I still can.   I’m also well aware of that numbness, and my experience with it has been that I more than pay for ‘overdoing it’ over the next few days.  I hope her recovery time from that is much shorter than mine.

My worry with articles like this is that it gives a false impression that MS actually bestows secret mutant super powers upon its chosen targets. Suuure.

You...you're not even trying, are you?

You…you’re not even trying, are you?

 

Over the same week, I came across this article which, for me, is a great explanation of what it feels like to live with MS. It doesn’t really talk about specifics, but rather the baseline physical change, portrayed as a betrayal.  This is a great description of my experience.

Closer to home, maybe you’ve also seen the Prudential lit up orange or perhaps the Zackim bridge or South Station for MS Awareness.  I think that’s pretty cool, and I don’t remember that ever happening before (but please correct me if I’m wrong).

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All in all, it’s great to see some more attention being paid to MS (even if it’s just for the stated awareness week/month).

 

 

It begins! Planning for Crash Safely 2014!

It takes a lot of time to get things together for Crash Safely.  This year is no different!  Now in year 4, we’re still learning how things go in the wild, wild world of non-profit fundraising. Last year was a big event- two weekends at three venues.  I always anticipated the next year’s show would be low key by comparison, however,  we will be returning to Oberon this year.

One night will be at Oberon! I don’t want to divulge any more information this early, but just know this- we’ll Crash at Oberon again.

 

I’m actively looking to mix up our usual lovable list of amazing performers as well.  Keep an eye out for a few new faces alongside some of our returning superstars!

Fun fact- when you do an image search in Google for  ”returning superstars,” you get a ton of pro wrestlers.

Feel the power!

Feel the power!

 

While planning is in full swing, you can plan on dancing with your favorite bands, great raffle and silent auction items and oh so much glitter.

 

Also, no winter weather!  Who else is sick of snow right about now?

Mayor Curley wanted these, remember?

There we are!

The yearly top 40!

 

Weather in New England has a way of telling you who’s boss.  In this case, all of our planning to head to New York City for the BikeMS awards ceremony was squashed by below zero temps and a good amount of snow.  I, for one, had visions of being trapped on a Bolt Bus on some side bridge in between New York and New Jersey. However, our local Maybe Sump’ms members headed out to the ceremony, picked up our awards and (most importantly) ate all of the free food and partook of the open bar.  Here they are, modeling the team’s jersey:

 

Today, the snow is at it again, which only means one thing: the Maybe Sump’ms have plenty of time to plan for 2014′s Crash Safely!

We already (!) have a few artists and one venue ready to go.  Then again, when you’ve been doing this for four years, it does get easier to organize….

 

Now then, any guesses on who might be part of Crash Safely this year?

 

 

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Prepping for New York

Next week is the BikeMS Awards Ceremony! This is the third year Crash Safely has been asked to participate and the fourth year for the Maybe Sump’ms bikeMS team. Our final rank among the other teams remains a mystery until we get there, so it’ll be great to be surprised!  We’ll also be celebrating individual fundraising achievements as well- two members of the team raised over $5,000 each.

Normally, this time of year would mean an awkward conversation with a supervisor about needing two days off to go to New York in the middle of the week to pick up an award or two.

 

This year, well, let’s just say that my calendar is a little more flexible.

afford-quit-day-job

I took the sharpie when I left.

After starting the job by finding out that the ‘health insurance’ came with a rather hefty price tag before my coverage kicked in, I was already on the job hunt not long after sitting down at my new desk.
Normally, I don’t do that sort of thing, nor do I talk about it publicly.Needless to say, it was a bad situation and I decided the best thing to do would be to jump ship before it got worse. I’ve got a few irons in the fire, so I’m not worried about income, and I finally managed to get the whole health insurance coverage through the state thing sorted out, too.

So on to the good stuff!

IMG_1365

Bowie sees what I did there.


After celebrating my newfound freedom at Videodrome 
Discotheque, Nick and I found out that Oberon is interested in hosting Crash Safely again this year.  I tend to go where I’m wanted, so this bodes well.  I have a few ideas as to who should grace the stage this year (especially at Oberon).  CS is also looking to mix it up a bit more this year as well.

 

Want to get involved? Want to play the shows?  Know of someone you’d like to see at Crash Safely?  Comment and let me know.  Keep it reasonable (no, I can’t book Prince).

I’ll be out and about again this Friday at Joe Egan’s birthday extravaganza at the Midway (which may also double as the start of the next JPx video shoot).

crash-general

More Awards!

That’s right! Word has come down from the BikeMS folks that the Maybe Sump’ms are being honored again at the 2014 Bike MS New York City Recognition Ceremony. This year, they’re doing things a little differently and not revealing our standings (both individual fundraiser statuses and team standings) until we get to the ceremony.  Considering we went well above our goal this year and had many riders raise over $1,000 (and some over $5,000), Pete and I are awfully proud.  In fact, I’m bringing fellow Maybe Sump’ms teammate and Crash Safely raffle/silent auction diva Schlonge Dermody with me to New York for the celebration!

Maybe Sump'MS 2012

Maybe we’re up the charts this year?

 

This awards dinner also plants the seed of planning for 2014′s Crash Safely firmly in my head. As such, I’ve already begun some big changes to Crash Safely (from the inside). I am going to register Crash Safely as its own non-profit entity in the state, which will allow it to grab some local-centric donations, as well as create a buffer in between my personal bank account and the finances of the shows. There are many hopes intwined with that- not the least of which is that I would like to eventually be able to pay the performers who contribute to the events in some way. The musicians do a mighty job every year, and while free/low cost booze is nice, it doesn’t pay the space rent. I’m a firm believer in the idea that no one should go broke being nice. Also, it would be nice to have a buffer for regular costs, such as posters/advertising, web hosting, room fees and other miscellaneous costs that come up.

While the plan is not to do the wild 4 night ride again this year, I have some ideas forming that will take shape soon enough. Do you have any artists you’d like to see participate? Where would you like to see them?

Glen displays the freebies.

 

While you’re thinking about that, I’m going to be packing my bags and getting ready for a whirlwind ride to NYC and back in the middle of the  week very soon.

Where have you been?

It’s been a while since I’ve updated.  While a good amount of the reason was the amount of effort I needed to put into this year’s shows, there were some other things going on in the background. I didn’t want to talk about it publicly, because it sounds cliche and frankly, sort of whiny.

I took a job over the summer that was supposed to be a step up- working in my field, with a shorter commute and a higher annual salary.

There was a catch, however, that was not apparent until I sat down at my new desk.

 

Meet the $5,000 health insurance deductible.

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Why yes, I was hoping to volunteer full time at my new position!

 

Before anyone makes this political, keep in mind that this is what the billion dollar, publicly traded company I work for decided was the appropriate plan for its employees.

Essentially, they chose plans that select for the healthiest people- the folks who go to the doctor once a year for annual exams, if that.

 

I had no way of knowing that all of the plans were exactly the same, differing only in the amount that’s pulled out of my paycheck.

 

As a result, I’m looking at starting 2014 without insurance, as the Health Connector seems to be overwhelmed and the insurance that will be offered by my current job changes to a different provider.

I thought that change would be a positive one- more options, perhaps?  Less of a deductible?

Try less options. Same deductible.

The company found an even cheaper plan, which costs me less out of my paycheck (yay!) but isn’t accepted by any of my medical providers (boo!).

Nothing makes you wonder what planet you’ve wandered off of when this seems like a much more plausible excuse than “because we said so”:

Maybe we could try a bit harder?

Maybe we could try a bit harder?

For the rest of today, however, I will remain grateful that I was among those sent home early to get ahead of the snowstorm. This will allow me to plot many next steps, including steeling myself to be placed on hold for another afternoon of muzak pain  delight.

 

 

Win a ride to and from the Crash Safely show of your choice!

Wait, what did that headline say? Not worry about when the T shuts down, or if your buddy overdoes it at the bar?

Yep!

Our pals at Uber helped us come up with a great prize to be given out before 9/13, the first night of Crash Safely.

 

uber_lockup_black

 

Why before?

Well, you’ll need to pick which night you’d like to get the star treatment for! You can win black car service to and from the night of your choosing.

How? Simple:

1) Don’t have an Uber account yet? Join up and grab $20 in credit.  (You already won something right there!)

2) Donate to the Maybe Sump’ms BikeMS team. The amount doesn’t matter (but please, at least $1.00). Each donation throws your name into the raffle for this credit.

3) Join the Maybe Sump’ms! You don’t even need to ride a bike! You can be a virtual rider and reap all of the benefits and prizes the team gets for its fundraising.If you’ve never done it before, email Amanda and she’ll walk you through it.  Joining the team gets you five entries into the raffle.

4) Do both! or just repeat #2 as many times as you’d like!  Even better- these are all tax deductible!

5) On 9/8, we’ll announce the winner of the Uber ride in style contest!

The Upper Crust

They might possibly get jealous of your ride.

Silent Auction for 2013: Studio time, video production and pool!

Whew! We have a lot of things for silent auction this year! In addition to studio time, we’ve got video production and an after work pool party (billiards, not the water park type) for 20 people.  There’s more coming in all of the time, but get a preview of the auction items in the gallery.
We also have some big news from our friends at Uber, as well as many, many other people and places who are donating items for the raffles happening at each of the four nights this year!

In case you’re wondering- YES, we will have JP Licks gift certificates!  YES, we have Redbones gift cards!

QD yard saley

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.