When Awareness isn’t Awareness

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!DSC03387

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.”capitol2016

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.”

ID-100265475The 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!

 

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A Special Superbowl Edition!

I was excited to see that Lady Gaga, who has tested as “borderline positive” for saragormanportraitlupus 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.

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Drummin’ Does A Body Good!

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.drumming 1-15

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.drumming-pic-1

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!profilepic

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

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Post-Thanksgiving Resolutions

I just wanted to let you know about a “Black Friday” through “Cyber Monday” deal I decided to run.  Now, It’s not like me to “hawk my stuff,” but this is worth it.

I’ve been saying this for years – your mental state directly affects your wellbeing.  They have proven it – there is a direct link between the brain and the immune system.  Click Here to read the article.

And now they just published another article linking mental state (e.g. anxiety/depression) to certain diseases (Click Here to read it).

Remember those videos I sent out when you joined?  Well, a lot of research went into those and I put together a 9 hour audio program and some other things to make you (anyone) feel better physically but also put you in a better state mentally because you’ll feel more in control of your situation.

That’s what it’s all about, right?  I literally still do all of these things, after many years of tweaking, everyday.  I’m saying this as someone that has a pretty progressive form of MS – it makes me feel better – and it’s trained me how to quickly isolate and identify symptoms so I can fix the problem!

This is what keeps me feeling good and moving forward.  I’m not a salesman and that’s not my intention but I know I can do the same thing for you!

So – I’m cutting the price by 85% – yes, 85%.  This really isn’t about making money, it’s about helping you get better.

I’m running a special (through Monday) and am practically giving it away for $47.  I was initially selling it for $297!

Click Here to get it.  I hope you all (in the US) had a great Thanksgiving!

Jim

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How to Instantly Become the Coolest Parent on the Block

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?id-100161966

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!

 

 

 

 

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A Life Worth Living

“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.id-10015238

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.

id-100158673I 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.image

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.

 

 

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Don’t Say “No” in College!

“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)

College is a unique time in your life – don’t waste it.  You don’t know where life is going to take you.  You probably have had some tough times – some more than others.

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.

 

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