We may have just hypnotized you. In that case, think of sweet, sweet guitarmony and don’t forget to grab you tickets!
Few comfort food places can boast crazy lines in the middle of a heat wave during an outdoor music festival or intense public debates about their french fries, but Shake Shack is not your average comfort food stand. Burgers, the aforementioned fries, hot dogs, custard, and of course, shakes, round out a pretty robust menu of goodies.
A $25.00 gift certificate will be up for grabs at Crash Safely this year. May we suggest checking out the menu beforehand?
Now, please excuse us. We’re feeling a bit… hungry…
We’ve interviewed a few MS patients already about their experiences, which vary quite a bit already. Patients aren’t the only one who have to deal with the symptoms, doctor’s appointments and social oddities that come along with MS. Tricia’s husband Rich has MS, so we asked her for her observations of life with Rich, Charlie (their adorable kid!) and MS.
There are a lot of things that are challenges, and most days I don’t think of them, because I’ve been working with these challenges for so long.
One thing that is difficult are the sacrifices that I have to make for my family that many people take for granted, such as turning down a family function because the venue isn’t wheelchair accessible, or not being able to take a vacation, because of the uncertainty of the accessibility of areas. So much of the future cannot be planned, because you never know when he will have an exacerbation, and booking things that are nonrefundable can be risky.
Before I met him, I had a vision of what my life would be like. I’m sure everyone does! But I’ve had to alter that dream quite a bit, giving up moving out of the city, buying a fixer-upper home, going to the beach as a family, taking vacations to Europe. I’m not upset that things didn’t work out the way I had envisioned, I’ve just had to create new goals.
Absolutely. Rich speaks slowly and somewhat slurred, and people often assume he is unable to answer questions for himself. Quite frequently in stores or restraints, clerks will ask me what he wants. Or they will look at is both with confusion, as if they aren’t sure if he can order for himself. Sometimes if they start talking to him, and realize he speaks slowly, they will then change and start talking to me, because the assume he is mentally deficient. On our honeymoon in Canada, a hostess at a restaurant remarked to me that it was very sweet that I took my brother on vacation. I looked her dead in the eye and said “We’re newlyweds. This is our honeymoon.” She was very embarrassed, and she should be.
Just because a person is in a wheelchair doesn’t mean they can’t have the same relationships and experiences an able bodied person has.
The thing I hear the most is “I don’t know how you do it,” and honestly, I just do it. Anyone would just do what they need to do to get through the day.
We are in a unique position because it seems to is that most other couples our age (late thirties) who have one partner with MS do not have the amount of accumulated disability that Rich does. When we’ve been to some “young adult” functions, I always felt like we scare people, because many people with MS at our age are newly diagnosed, and some may not be ready to face a potential future that Rich represents. Most of the MS spouses I meet are men supporting their wives. I think it is also hard being the wife of a disabled person, because you want to help your husband feel “manly” but it’s hard not to emasculate a person when your tying their shoes every day.
People with MS have so very many varying symptoms from person to person, and sometimes from day to day. Some of those symptoms are visible, such as my husband’s inability to walk or use his hands without spasms, and some of them you cannot see or grasp quickly, like chronic pain, or balance issues. People with MS can appear drunk, but they aren’t.
There are a few Emersonians behind the scenes here at Crash Safely, and we were excited to get this donation from our alma mater.
Restored old theaters? A crazy variety of theater, movies other special events,from Shakespeare to Monty Python?
You can enter to win a membership to ArtsEmerson this year! Membership includes:
We’ll see you at the Paramount!!
Long a hidden treasure in Boston recording circles as a freelance recording engineer and a trusted electronics fix-it man, Kevin Micka has approached Animal Hospital over the last 9 years in the nooks and crannies of his schedule.
During performances, Micka buries himself in a pile of electronics-shelves of effects, mixing consoles, amps and delay units-while patiently constructing a layered nest of loops consisting of live drum beats, guitar chords, scrapes, chucks, chimes, and melodies resulting in anything from more conventional songs to meticulously crafted ambient movements on to full on improvisation. Since the winter of 2011, a large ensemble version of his music has been realized with performances consisting of up to 30 musicians at times.
Kevin has consistently toured the world (recently Japan, Australia and South America) winning followers from all corners of the music world, including spots with acts as diverse as The Jesus Lizard, Beirut, No Age, MAIN, Thrones, Dosh, Os Mutantes and Codeine.
He’ll be sharing the stage at the Middle East on 10/17 with The Field Effect, Township, White Dynomite, TRiPLE THiCK and host D-Tension at Crash Safely this year, and if you haven’t had a chance to see Animal Hospital live yet, prepare to be mesmerized!
Nick Zaino is a man of many talents. He’s a freelance writer who’s covered comedy for the likes of the Boston Globe and the Boston Comedy Blog. He’s also written about music at BDC Wire, Paste, the (dear departed) Phoenix and many, many other places. He’s also a musician and has been busking, on top of regular gigs around Boston.
Oh, and he has MS.
When two writers and musicians get to talking about things they have in common, it can get verbose, but stay with us! You’ll enjoy this…
I got a burning numbness that stretched from the back of my neck to my chest and a numb right hand. My doctor suggested shingles at first, but then the burning went away and the numbness started to move around my body, from my right hand to my whole left arm, then into my middle section (which led to an embarrassing emergency room visit), then down into my legs and feet, but never all those places at the same time. I had an MRI, and MS was one of the suspects, but it was another year before I was officially diagnosed. I went through physical therapy to get rid of a limp that had developed and get the strength back in my muscles. I lost the ability to play guitar for about a month, and as a songwriter, that was incredibly scary to me. I sat down with the instrument and couldn’t even place my fingers where they needed to go. I had to move my fretting fingers on my left hand with my right hand, and then I didn’t have the strength to push them strongly enough to make a chord. I was seriously considering how I might write on some other instrument and that maybe I’d have to become a real musician and learn notation. Luckily for me, the therapy helped, and my therapist told me that playing guitar and drums was good therapy for me to work up strength and dexterity.
I also had a spinal tap in the middle of this, but the lab messed up the test that would be most informative about MS. I was very worried about the spinal tap, especially once I learned there would be no anesthesia. It wasn’t as bad as I’d feared, but they did have to tap me twice. They try to tap you as low as they can to stay away from the parts of the spine that could potentially cause problems if they disrupted them, but they couldn’t get fluid with the first tap, so they did it again, and then tests they were able to do didn’t indicate much. I had lesions on my spinal cord, though, and eventually that was rules MS. I am lucky in that I don’t have any on my brain, and the seven lesions on my spine have been basically stable since I started medication. It was about a year from that first burning numbness to the time I was finally diagnosed. Then I had to learn what MS really was, which is not an easy thing to grasp, and figure out what I wanted to do for treatment.
Energy is a huge problem, and I have a couple of other things that complicate that. I had just been diagnosed with Type II Diabetes when I had my initial MS attack. Those two things together, I think , are responsible for rapid declines in energy that force me to stop what I’m doing to grab something to eat (which doesn’t always work) or try to sleep. That’s compounded by the fact that I am a writer and a musician, and have a tendency to work late at night on more creative endeavors. I can’t really sleep through the day because that’s when I need to be talking to editors and interviewing people for my journalism work. And I can’t always sleep through the night because I wind up staying up late to write songs or work on short stories or even write with a work deadline in mind. So my schedule is fluid.
It would be best if I followed a stricter sleep/meal schedule, but my brain doesn’t always work that way. I can improve things by forcing myself into a more regimented schedule, but something always comes along and breaks it. It might be a matter of just disciplining myself, but that wouldn’t resolve the problem altogether.
A byproduct of that is that it can be hard to concentrate on the project in front of me. My energy sometimes dips when I’m transcribing an interview or writing, and I can fight through it or wait it out. That just adds to the time it takes to finish something. And since I’ve had a few health scares in the past several years, I’ve been motivated by the idea that my ability to do the things that I think define who I am could be limited drastically or even taken away completely. So I’m working harder to finish things I should have done years ago. I’m finishing up my first full-length album of original material and working on a book of interviews with comedians I’ve done over the years writing for the Globe, the Phoenix, and other publications. There are days when I’m pushing myself harder than I ever have and it just breaks down, and I have to accept the fact that will happen and find a way to keep working. I have it easier than a lot of people who have a strict nine to five job, but it still affects my work.
I don’t think it’s hurt me in any way, at least not in any way that I know of. I’ve been open about it but I have sent everyone I know any sort of notice, so there may be people I know somewhat well who will read this and be surprised to hear I have MS. When I was first diagnosed, it was on my mind a lot when I talked to friends and colleagues, and it was hard to know how to bring it up.
“Hey, how ya doin’, Nick?”
“I have MS! How are you?”
It’s not the most natural dialogue in the world, but I felt I needed to say something, if only because I was somewhat preoccupied by it and I wanted to get it out of the way so I could get back to a normal conversation. People talk so much about their maladies and anxieties these days that it almost feels like bragging to mention it. That could be my own ridiculous anxiety, but it made me nervous to talk about it, to make it clear that it’s something I’m dealing with, and fair topic for conversation, without making it seem like I was dropping a bomb.
My case also isn’t very advanced, so I don’t have the worst symptoms others display, so again, I’ve gotten off relatively easy so far. There are people faring far worse than I am, people who are having a much worse time of it, and it’s hard to say I have the same thing they do, because those people are fighting so much harder and my experience doesn’t compare. Yet, the reality is, I have this, and I’ve been reassured by doctors it is manageable, especially at this stage, but another attack could be out there. That’s often lurking in the back of my mind. I could wake up and have that same feeling I had when I picked up my guitar and couldn’t play it. It could be back to those same fears, the ones I’m convinced I would handle in a practical, rational manner, but could change my life, and my wife’s life, and perhaps others around me in some way. So there’s a feeling of obligation to have it out there, because maybe it might wind up affecting others in some way, too. Or perhaps the lesions are being created because my spine is pressing against my enormous, jagged ego.
This is hard to say because I didn’t know a hell of a lot about MS before my own diagnosis. I knew it put Richard Pryor in a wheelchair, a man who abused himself perhaps more severely than any other human had and stayed on his feet. If MS took Richard Pryor down after everything else he’d been through and put himself through, it had to be something strong and serious. And I had read about Jonathan Katz, and eventually spoken with him about it. I saw a show of his I think the day after Pryor died, and he opened with the line, “I am now officially the funniest living comedian with MS,” which drew some silence and indrawn breath from the crowd, and then he tagged it with, “I’m going make Teri Garr wish she had Lupus.” I laughed at the sheer bravado and gall of that line, especially delivered with the understated, deadpan tone that Jonathan does so well. A lot of people didn’t laugh, may have been offended. My own symptoms and diagnosis was years away, but I think the line is even funnier now.
So here’s the thing – MS can be very powerful and it can crumble you. It can take things away. Important things. But it’s not the most powerful thing in your life, even if you have it, or it doesn’t have to be. You can give it the finger and keep doing things, keep going, even if you have to adjust how you’re doing them.
There are too many awful diseases and conditions out there to expect the general population to research them all and have a working knowledge of it when you inform them you have that particular thing. But if you know someone with MS, know there are different stages and symptoms, and that you probably don’t have to be all that careful when you address it with them. For a lot of people, it’s an adjustment, but they are still keeping a full plate and doing things everyone else is doing. So don’t be afraid to ask questions and have a normal conversation about it. That’s the best help I can think of if you know someone who has it. And if you want to help in a more general way, there are plenty of charities to donate time or money to. Or you can come see some Crash Safely shows and help yourself, too.
Vacations! For some of us, it seems like we never get to go on any, so when we heard back from Sunset World, our bags were already packed!
5 days and 4 nights in Cancun, in one of their 4 resorts? With access to all four? Why aren’t we there right now?
The package is for 2 adults and two kids, although it’ll likely be fine if you bring less people. After all, they have ‘adults only’ pools and a private beach.
Get an awesome vacation and help support the National MS Society! We’ll be posting how to win this trip soon, so keep an eye out!!
Q Division has become a record label, second home and annual BBQ yard sale funfest host over the years. The Mayor of Q is even a Maybe Sump’ms team member! Encourage his athleticism by donating to him, and we’ll send you photographic evidence that he did indeed cross the finish line!
Q’s been part of Crash Safely right from the start, and they’re offering up a day in Studio B with Ed Valauskas! Ed’s also played Crash Safely with the Gentlemen!
Check out Q’s studio time as well as all of the options ready for you to win. Bidding begins on 9/25, and this year, so keep that link handy!
As we’ve said many times, it can be hard for MS patients to publicly talk about what their lives are like, especially if they are employed and don’t “look sick.” Some patients we spoke to said they’d love to tell their stories, albeit in an anonymous way. Having to hide a big part of who you are is a foreign concept to many, but it is sadly a big part of living with MS. Interestingly enough, many MS patients have adopted the language of the GLBTQ community in this regard and will often talk about the pluses and minuses of being “out.” Some will deride celebrities who have come out, stating that those are people who are “safe” in some way from the repercussions of their decisions. As everyone with MS experiences different problems on different levels of severity, it can also be hard to form a shorthand to help people who are unaware of the complexities. This patient spoke with us anonymously, so all of our usual promo photos here will be the blank avatars you see around social media outlets.
Most of the hurdles I face right now are predominantly in my own head, I think. I am self-conscious around my “limpy” gait and get nervous going to new settings. I’ve had some serious falls and I’m pretty scared about that. I know if I get a serious injury, or even a minor one, it’ll really be a setback. Places out on the world could definitely be more accessible for lots of folks with more severe handicaps than mine, but I think a lot of it is mental, for me anyway.
One of the hardest things about MS is that it’s really an assault on your sense of who you are. I was always a really social person, up for anything and now I have to do a lot of preparing for anywhere I go-thinking about the set-up, my energy level and how comfortable I may or may not be there. It really sucks and is a huge adjustment. I’m trying really hard to not turn down lots of fun things, but it definitely seems easier to just stay home sometimes.
It’s tough at work, because even though my boss knows, a lot of other people don’t. It’s pretty obvious I have something going on, but I basically say it’s just orthopedic problems. I’m not particularly private about it, but the look of terror in people’s eyes when you say you have MS is really tough to handle and I DON’T want to be pitied. Again, that gets to my sense of who I am-I’ve never been great at letting people help me or acknowledging my limitations (to be honest, I never really thought I had any!). There’s a real concern about job security too. Part of me feels like it can protect you a bit if you disclose you have MS, from a legal standpoint, but I’ve also heard stories of the opposite, so I’m cautious.
My gait and balance issues are the worst. They most greatly affect my life and give me the most difficulty. I actually have dreams of running and walking really smoothly again. I regret every time I took an elevator and didn’t climb stairs, not knowing it would barely be possible for me one day. I get nervous in situations where I may need to move quickly, like in an emergency- my dog gets loose or my son gets hit by a pitch in baseball and I have to get him to the emergency room. I sometimes am astounded that I have such a hard time walking – like, it’s so strange and something you take for granted. When I’m walking well some days, I completely notice it and am really psyched and feel like my old self. I can never predict when those days may be, though, and, unfortunately, they are becoming less frequent. At some point in the not too distant future, I’m sure I’ll need a cane. It’s really a loss and a grieving process.
Like I said before, it’s really that look people get when you tell them- they look so sorry and horrified, like you told them you just had leprosy or something. I expected the people that love me to cry when I told them, and they basically did, but it’s other people’s reactions that get to me. I wish I was more public with my MS, because I feel like it would make me less self-conscious and I don’t like being insincere about what’s wrong with me. I just consider that part of my process and if there’s an upside to having an MS diagnosis, is that you really start to make yourself a priority and give yourself carte blanche to say and do whatever you want!
I would like people to have a greater understanding around how individual the disease process is to each person. You really can’t judge one person’s MS against someone else’s. It’s so unique and really means different things to each person who has it. Like any disability or chronic illness, the important thing to really focus on is helping people cope with the limitations as the disease progresses.
Summer! There’s nothing quite like surf guitar to set the mood, and nobody in Boston does it better than Tsunami of Sound!
Seeing as it’s been a bit cooler this weekend, we could use some summer tunes.
Check out their contribution to last year’s Crash Safely comp:
In case you’re wondering, they bring their own tiki lamps and bring the beach party to you, no matter how distant your beach blanket may seem.
Catch ‘em at Atwood’s on 8/30 and make sure to see them at Crash Safely on 10/10!