Remember how Vigo the Carpathian died, according to Ray (Dan Aykroyd) in Ghostbusters 2?  Probably not.  I’m pretty sure I was the only one to see that movie.

Spoiler alert – He was poisoned, stabbed, shot, hung, stretched, disemboweled, and drawn and quartered.

People made an assumption that he “died of old age” at 105, but that was far from the truth.  How often do you find yourself judging someone based on prior experience or taking the easy route?

I’ve spent the last nine years committing myself to causes and helping others despite my own challenges.  I, for example, do a lot for the National MS Society.  It’s a little like going to the gym.  I know that I’ll be better for it in the long run and I’ve learned how to truly enjoy the process.

I lend a hand (figuratively) to several groups in town, including the MS Support group, the Spinal Cord Injury group, and the alumni board for my masters program.

My real passion is conducting therapeutic drum circles for everyone from seniors in assisted living to children with disabilities.  I stay pretty busy, despite the fact that I don’t work anymore.

So why do I do it?  Surely I could sit back and rot away or enjoy the “easy life.”  I don’t make money doing this stuff – I must be getting something out of it, right?

I can do these things despite my condition.  I’m not the only one in a wheelchair.  It doesn’t matter that my hands don’t work well.  I can pull out my fan whenever I need it.  I don’t need to worry about putting on a hazmat suit or decontaminating my wheelchair.  And, I make my own schedule.

Oh yeah – and I seem to have a good rapport with people of all ages.  You see,

“I’m an ideas man.” – GOB Bluth, Arrested Development

But mostly – it’s therapeutic.  I feel good when I do it.

It’s not that I don’t wear myself out – sometimes to the point of collapsing – when I’m trying to stand while packing up my gear.  It has happened, but I look at everything as a learning experience – if I can figure out what will make packing up easier and more sustainable so I can keep doing this for the foreseeable future, I’ll do it.

It can be physically challenging but it’s always socially gratifying.  And it lasts.

I get so much pleasure from enriching the life of someone who needs it or getting through to someone that no one else has been able to, that what happens in the short-term is not remotely significant.  Not only that but I get to enjoy the music and focus on the students in the meantime.  It’s extremely rewarding.

As an example – I was working with a small group of first graders with various disabilities last week.  One of the teachers approached me and whispered that a boy that had responded hasn’t done that with any other male adults at the school.

I will remember THAT more than anything that happened that day.  The good far outweighs the bad.

Is there bad?  Most people wouldn’t think so because I tend not to complain about it.  I might make excuses for my behavior – probably too much – but usually don’t complain.  Why?  Because I serve others, listen to good music, or do other things to change my state of mind before wallowing in self-pity.

I remember a meme that was making the rounds a few years ago of a woman standing on her wheelchair to reach a liquor bottle.  I don’t remember the quote but the idea was that if she can stand on her wheelchair, she must be faking it.

For me, standing is an option and even though it’s hard to do, I continue to force myself to stand so that I don’t deteriorate any faster.  I can tell you that I hadn’t been to the mall or anywhere else that required walking for a few years leading up getting my wheelchair.

Not only that, but just because I make it there under my own power doesn’t mean I’m not ready to pass out.  It’s not always a light switch.

I tend not to make a big deal out of issues that I have because 1) there’s only so much I can do and wishing that it wasn’t the case isn’t going to make it any different.  I just need to keep making adjustments to my lifestyle – my eating habits, my exercise habits, my sleep routine, my stress control, and the experiences that I have.  I need to control the variables.  2) Because bitching about things only makes them worse.  We find what we are looking for – always.  If I’m complaining about my legs, I’ll look for more reasons to complain about them and find I was right when I discover them.  It compounds the problem.  3) I want to set a good example for my kids.

So I look at the bright side and enjoy life by spreading the idea of positivity and serving those that need it.  But people still have questions:

Am I in pain?

Almost always.  Not the “stabbing pain” that so many of my friends are burdened with, but more of a chronic achiness in my legs, like I just ran a marathon or climbed 10 flights of stairs with two bags of groceries.  Sometimes it’s so bad that I have a tough time falling asleep and it’s the reason that my feet rarely stop moving.

How’s my coordination?

Well – I haven’t been able to write in years.  I can barely hold the pen for a signature at this point.  As luck would have it, I’m right-handed and my right side is the bad one.  I can’t write, hold food on my fork, or stand on my right leg while I’m getting dressed.

Weirdly, despite the weakness on my right side, my left foot is the numb one – figure that out!

My hands have become so shaky and my balance so bad that I have to have my kids carry any soup, cereal, or drinks to my spot at the table or in front of the TV so that I don’t spill them.

Why do I use a cane or wheelchair?

My legs are heavy – almost like their stuck in quicksand.  This means I tire very fast on the rare occasion that they’re working correctly but that they usually don’t move if I need them to.  Often times, the result is that I fall.  Combined with my stellar balance, this means that even turning around while sitting might end with me kissing the pavement.

Bladder issues?

I had a bladder like a pregnant chipmunk before MS – now it just has a 5-second fuse attached to it.  I tend to dehydrate myself before I go anywhere.  It’s not terribly healthy, but there are worse things.

What’s the worst thing I’ve experienced?

Hands down, the worst part for me was losing my ability to speak clearly.  It sounds odd, but I found out when I originally had major speech problems in 2006 and then again in 2008, that I would happily give up my ability to walk or write before my ability to communicate.

Everyone’s experience is different, though.  I sometimes have trouble swallowing but have found ways to manage it.  THAT could surpass the speech issue if it gets worse, I suppose.

Some people that I know have cognitive issues.  I have certainly been in a fog or gotten stuck, but have, depending on who you ask, been relatively clear-headed thus far.

What other issues do I have?

Heat tolerance.

I’m not talking a Whitney Houston or Meatloaf sweating issue – I’m talking about being shot with a tranquilizer dart.  I often joke that once I start to feel comfortable (temperature-wise), I know I’m in trouble.  For a guy that shivers uncontrollably, it’s no joke.  I HAVE to be cold if I want to be functional.

It’s all manageable.

I know a lot of people that have it worse so I just do what I can to make the lives of others a little better which makes mine better as a result.  A lot better.

Is that selfish?  Maybe – but it’s a passion.

My hope is to show everyone that, no matter what they’re dealing with, you still can make a choice to feel better.  That doesn’t mean great – just better, but it adds up.

I always say that you feel good for a reason!  If something is making you feel better, you’re creating a better environment for your body to recover or heal.  You’re working with your therapies rather than against them!

I’m genuinely good with the way things are.  Let me say that again –

I’m good.

I manage my symptoms (sometimes obsessively) and found a therapy that I truly enjoy.  It’s hard to complain.

Donate to my page for Walk MS:  http://main.nationalmssociety.org/goto/turk

This is a post from a year ago but I thought it was worth posting again for MS Awareness Week.  Pay close attention to the Raising Money tips, which I recorded during an MS Society Leadership Conference.  They are particularly important right now.  Enjoy!

Have you ever nodded your head to make someone think you’re following what their saying but really have no clue?  You probably don’t even care what they’re talking about.

I often joke that this is really how I’ve gotten through life – I’m just good at seeming interested!

I fear that this is what happens when we talk about “MS Awareness,” though.  We talk about it and people close to the disease celebrate “awareness,” but most people don’t really know why we do it.

The common misconceptions remain.

We all know that having an “invisible disease” is physically AND emotionally difficult.  It seems that everyone – our loved ones, our friends, and even our physicians – say that they understand.

But they DON’T understand.  They might be empathetic, or want to appear to be, but they don’t really “get it.”

What they understand is that we complain about something that they have to take on faith.  They have to trust that we’re telling the truth.

Even our doctor’s job is subjective.

Sure – there are some measurements that they take.  They do MRI’s and look at patterns and trends, but there is an awful lot of judgement that happens at your appointment.

Your doctor is good at this – probably one of the best.  I’m not saying that their opinion isn’t respected – they’re doing the best with what they have to work with – and I’m grateful for that!

But when we talk about MS awareness, what are we raising awareness about?  And why?

Our tendency is to explain it to people.  To try and make them believe us.  Like you’re a three-year-old trying to make your parents see the “owie” that your brother gave you when he pinched you.

Did that ever work?  Are you taking advantage?  Crying wolf?

We like things that are concrete.  We need specifics to assign blame.

You could tell people that in MS the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body… (snore).

That’s what the Mayo Clinic website tells them – if they stay awake.

But it’s too complicated.  It’s not bite-sized.

It’s not concrete or active.

There are no cancer cells that we need to kill.  There isn’t an artery that requires a stint.

I often just tell people that I have a nerve problem.  I don’t elaborate and they usually don’t ask questions.  Is that wrong to do?

It’s easier to explain, they get the gist of what the problem is, and I’m not lying to them.  I’m just not giving them the whole truth.

But that does nothing to raise awareness, does it?

So would it be wrong to tell people that MS has “taken over my legs?”  That I have “MS induced pain?”

Assign blame – Make it concrete!

How about saying that I have “MS-induced ataxia (which covers a lot of ground and explains a lot of symptoms)?”  It’s more believable!

Why does it work?  It’s ACTIVE.

It’s like saying “I was punched in the jaw” as opposed to “I have a sore back.”

The former is easier to empathize with.  It’s active.  There is a cause-and-effect and we can relate – if not from personal experience (like the time I was cold-cocked while playing a video game in sixth grade – I’m not bitter), then certainly from what we’ve seen on TV.

Connect the dots – make it active!

When I think of awareness, I think about starting a conversation.  About clearing up the confusion and giving them an emotional reference.  It’s hard to relate to it, otherwise.

Connect the dots.

Raising money – for research, for scholarships, for assistance, and much more – is a lot easier when you can show the human side of the disease and assign specific blame!

Make it active.

If you can do that, you’re not just telling them that something called Multiple Sclerosis exists – you’re raising awareness!

So get to it – share this post and spread the word – let’s make this the most productive MS Awareness Month ever!

I made an 11 minute video describing my drum circles, discussing the benefits, talking about the accessibility options, and dispelling some of the myths.  I hope you enjoy it – let me know if you have any questions!

I was excited to see that Lady Gaga, who has tested as “borderline positive” for lupus and has brought attention to this terrible auto-immune disease, did the widely watched halftime show at the Superbowl.  (click here to watch it)

To honor this occasion, I have posted an interview that I did a couple of years ago with Sara Gorman, who has systemic lupus.  Enjoy!

Click here to view Sara’s website.

Have you ever had that feeling where you’re really cold, go to bed, get under the covers and feel all warm and tingly? That’s me when I sit down to drum. That’s what I want to share you.

Research has shown time and time again that group drumming is very therapeutic (click here). Group drumming synchronizes the two brain hemispheres so that they’re working together and it’s one of the only activities that actually does this.

Group drumming makes you think about the drumming, the music, and the camaraderie that goes with it. It doesn’t allow you to think about everything else that might be going on in your life. It lowers blood pressure and enhances the immune system. It makes you feel good.

It’s like meditation.

It’s great for kids and adults – it’s active, engaging, and you don’t have to have any particular abilities to do it. It’s great for reducing stress and focusing your attention, it keeps the muscles moving, the blood flowing, the nerves firing, and it’s healing – both physically and mentally.

When I sit down to drum it’s like I’m in a different place. It’s like I have a new meaning.

Group drumming is something I always thought about but never really pulled the trigger on because I felt like it was poorly represented. I think there’s a connotation, a Woodstock – hippie connotation, that goes with it.

Once I left work due to my disability, I felt like I needed to do something with my time. I wanted to share my experience with others that might have the need and the desire but not the means. I wanted to use my experience as a lifelong drummer (click here) in bands, as a percussion instructor, as research administrator, and as a public speaker, to spread the word and give people a chance to participate.

I purchased around 20 new drums to go along with my existing percussion equipment and decided an an approach to make the experience accessible to everyone. I let the MS Society know, the local Spinal Cord Injury group, my drummer friends, and anyone else who would listen.

My goal is to get people involved, both physically and socially, and I can’t think of a more fun way to do it!

Let’s have some fun and feel better while we do it!

Check out my Facebook drum circle page (@bmddrumcircles) or email me for more information.

Access to Independence, Inc.

It’s their job to make sure you can get there!  Give them a call and tell them where you are!

1-800-362-9877

www.accesstoind.org

National MS Society Voting Information

state-by-statevoting info

“Everyone that we know is just giving out candy?” – Jerry Seinfeld

When you were a kid, did your parents look through your Halloween haul for scary things like needles and razor blades?

You had a paranoid mom, too, right?

A control freak?

It’s funny that we worried about something that probably wouldn’t do much harm.  It wasn’t enough to keep me home when everyone is handing out candy, though!

Sure, you’d get a nasty cut, but you probably wouldn’t chew more than once and you certainly wouldn’t die.  Totally worth it.

Just the thought was enough to change the way you think, though.

According to the CDC, from 1975 to 1996, four kids in America were killed by cars EVERY Halloween.  KILLED!

How many kids were killed by the candy terrorists?  Probably none (click here).

Want to be safe?  Be in control!

We are worried about plane rides but not car rides.  Why?  We load our kids in the Sienna every day, so it must be safe, right?  It’s us behind the wheel controlling their fate, or so we’d like to think.

I can’t do anything to keep the plane from crashing into a mountain, though.

Or the Indian Ocean…

Growing up, we always wanted to be first in line, all-time quarterback, and to have a later bedtime.  Winning, whether it be a game or an argument, is about control.

Having control over a situation makes me feel safer, like I have some say in my destiny.  Having control gives me the feeling that I can sway the outcome in some way.  Having control ensures that I won’t be forgotten.

Vices

When cigarettes were at their height of popularity, we didn’t connect the dots.  We smoked them because we liked them, were addicted to them, and there were no perceived health consequences to doing so.

Once we figured out that smoking actually does cause cancer, many of us stopped and it became less and less common.  Why?

Because we could see the cause-and-effect relationship.  We stopped because smoking wasn’t a contributing factor but it was the cause of lung cancer.  The dots were easy to connect and it was reported to us by people we trust.

We could control the effect by eliminating the cause.  It’s pretty straight-forward.

Remember how much candy you and your friends ate after trick-or-treating?  What was the consequence?  I’ll tell you because it was the worst thing imaginable.  You ran out of candy!

There was no perceived consequence because you didn’t feel any different the next day, other than a slight tummy-ache.  There were no cuts.  No trips to the emergency room.  No blood tests or x-rays.  No immediate consequences (unless you puked!).

There was only deliciousness.  Sweet, sweet, deliciousness.  At least, that’s the way I saw it.

We certainly weren’t concerned with how fat we’d get!  We were kids!  The Bears have a better chance of getting to the Super Bowl!

We were invincible!  Sure, sugar will make us gain weight and rot out our teeth; everybody knows that.  I can’t see it happening, though, so that means it won’t happen to me!

I’m in control of that.

And, it will never happen to my kids.  It takes time and some witchcrafty science, so it’s easier to look the other way.

Besides, giving my kid a treat right now gives me more street-cred than being the meanie that wouldn’t take him out for ice cream after school.  Screw the long-term consequences!

Fat, sick, and nearly dead

How many people do you know that are diabetic?  Did you ever wonder why we are so fat?  Our kids are, too!

I can name one or two classmates that were big when I was in school.  They were the anomaly.  They were different and that’s how we remember them.

I’d bet I’m not the only one.

I’m sure that I hadn’t even heard of diabetes.  Where my kids go to school, being overweight is practically the norm.  So what gives?

I’ll tell you.  It’s the refined starches, sweeteners, and bad fats that go into junk food.  I can hear you already: “oh – so you’re one of those organic, idealist types that think you know everything and that industry is evil.”

Not quite, and don’t be too quick to judge.  I know that people are reluctant to make better choices if there isn’t an immediate consequence to their actions.

I also know that little boys aren’t supposed to have tits.

These are the facts: continuous consumption of sweeteners and white flour products (i.e. candy, pastries, desserts, and soda) means chronically high blood sugar, not to mention weight problems (click here).

Chronically high blood sugar means chronically high insulin (the hormone that brings blood sugar back down by storing it as fat).  Chronically high insulin means your body gets used it, so you need more and more sugar to trigger more insulin.  That’s diabetes.

That will kill them.

Smoke ‘em if you got ‘em

So keep it up.  What did Wimpy always say?  “I’ll gladly pay you Tuesday for a hamburger today.”  We’re interested in short-term gains; immediate satisfaction.  We’re teaching our kids to be the same way.

Health be damned.

I have an idea!  Let’s skip the hassle of lingering health problems and make the solution more concrete.

Let’s put cigarettes in their candy-sack.  Be the cool parent!

Besides, if they’re going to die of lung cancer, you don’t have to worry about what they eat.  It’s a win-win!

“You’re not your job. You’re not how much money you have in the bank. You’re not the car you drive.”

– Tyler Durden (Fight Club)

“Sure you can.  You can be anything you want, honey.”  How many of you have told your kids that when they tell you they want to be an astronaut or marine biologist?

I know I have.

It’s ok to say when we’re talking to kids about what they want to be when they grow up.  The problem is that we’re living in a society that tells us “the sky’s the limit.”

We never stop trying to do things that we’re not very good at.

We set the bar too high and we fail as a result.

There’s nothing inherently wrong with it but what if we focused on our strengths – stuff we’re good at – instead of our weaknesses?

I’d bet that we’d be a lot more productive at work.  I’d bet we’d have a better outlook on life.

“I can be changed by what happens to me. But I refuse to be reduced by it.”

– Maya Angelo

I’m fortunate, despite my progressive illness, to have managed a great group of people for a lot longer than I expected.  I have seen productivity go through the roof when I plug people into places doing things that they’re good at.

I’ve also seen it stall out when they’re doing things they’re not.

I can usually figure out someone’s strengths by watching them.  Talking to them.  That’s one of MY strengths, but there’s a more formal way to do it, too – the Gallup StrengthsFinder.

I was forced to take this in a job I had a while back.  To my surprise, it turned out to be pretty revealing.

I knew what I thought my strengths should be.  I knew how people defined me.  I knew what I hoped they would be.

Guess what?  I was wrong.

Now you’d think that I could influence the test – that I would answer the questions in a way that would give me the results that I’d hoped for.

I found out, though, that I wasn’t even close.

I discovered that there was a reason I could do some things that others couldn’t.  I learned that I could take a spot in the job market that was different than I what I had been trying for.  I could be better than average – even great – at something and be passionate about it.

It wasn’t what I thought I should be good at, but it was honest and unbiased.

I also know from experience that I will continue to steadily lose function in a lot of areas.  Sound familiar?

We all lose our abilities as we age.  The important thing is to keep doing what we’re good at, or WERE good at, despite those changes.

These are your strengths.  These are the things you’re built for.  It’s not about working hard to get better at it, but about doing something that comes naturally.

That feels good.

“It’s a new dawn, it’s a new day, it’s a new life for me,
And I’m feelin’ good.”

– Nina Simone

I’m a drummer.  I’ve been drumming all of my life, but I can’t even come close to what I could do back in the day.  I still drum everyday, though – because it feels good.

I cruise a number of forums for people with MS.  They are continuously flooded with people that are depressed about what they can’t do.  What they used to be.

Doing something that comes naturally and makes you feel good isn’t about being judged.  It’s not about being compared to somebody else.

It’s about self-confidence and your ability to keep your passion alive.  So keep doing it even if you’ve lost a step – or three.

Are you losing your abilities and acting like it’s the end of the world?

Maybe you should stop dwelling on the things you can’t do and be grateful for the things you can.

Share your gifts but don’t worry about what other people think.  Do it for you.

Do what makes you feel good and the results may surprise you.

“Never try, never fail.” – Crank (Robots)

Don’t be Crank.

I had the opportunity to speak to around 200 incoming college freshman recently.  I was speaking to them as a person that has overcome a number of things and experienced a lot, but my message was this.

There are very few consequences in college.

We can look at certain college athletes and say “well, there were obvious consequences for them!”  We know people that have failed a class or had their GPA drop to the point of being kicked out.

You can do something really dumb and get arrested, like my friend that wound up volunteering for me to pay off his community service.

I’m not talking about those consequences.  Those are obvious, not-being-a-responsible-citizen types of mistakes.

I’m referring to the judgments you were subjected to in high school.

Judgments for going to a poetry reading.  Judgments for looking like a kiss-ass when you’re working with a teacher you admire.  Judgments for taking a class that doesn’t fit your image.

Judgments for not pursuing the subject you declared your sole purpose when you were ten – before you knew anything.

I’m also talking about an opportunity to figure out what you’re good at and what you’re passionate about without pissing off your boss.

Knowledge about traditional subjects but also about the people you admire.  What makes them good at what they do?  Why do people want to follow him or her?

“You ought to spend a little more time trying to make something of yourself and a little less time trying to impress people.” – Vernon (The Breakfast Club)

Your going to be challenged – regardless of your current situation.  Get a lot of experience.  Gain a lot of knowledge.  Be ready for them.

Figure out what you love and where you fit in.  Make your passion, or strength, work for you instead of trying to suppress it in lieu of your major.

Figure out what makes you unique.  When are you “in your element?”  What is so enthralling that you forget about time?

Those are your strengths.

Not the skills but the process.  When are you at your best?

Leading?

Problem solving?

Finding common ground?

Analyzing?

Figure out how to combine them with your book-learnin’ and you’ll be a force to be reckoned with.  You’ll also be more resilient when the hard times come – and they’ll come.

So figure out your passion and don’t work a day in your life.  And stop worrying about being judged.

This is the one time in your life when that doesn’t matter.