When Awareness isn’t “Awareness”

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.”

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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Everything’s Bigger in Texas!

Do you know that feeling you get when you’re at a work conference and it seems like everyone has an ulterior motive? Like they’re selling something and you kind of want to take a shower when you leave?

I have and let me tell you – it’s not fun. Well, it’s ok for a little while. I’m reconnecting with the people I haven’t seen in a year, picking up free goodies from the venders, and maybe seeing some of the town.

Ok – not anymore, but that was part of the deal when I was more mobile.

MS Leadership.2015Well, I spent a few days last week at a conference with a different attitude. One that was not only fun and accommodating, but also sincere and driven.

People didn’t seem to be reciting their resume and courting the big companies like they do in the corporate world.

They were just looking to help each other. To pool resources and share the most valuable and relevant information so that we could all leave there in the best possible position.

I went to the National MS Society’s 2015 Leadership conference.

It was something that I hadn’t planned on doing but got a call from someone at the Wisconsin Chapter a few weeks before. I was honored that they even thought of me and went with the intention of making the best possible use of the time.

The energy was like nothing I’ve ever experienced. I spent a lot of time with three other volunteers/fundraisers/leaders from the state and a number of Wisconsin Chapter MS Society employees, including the president of the Wisconsin Chapter. They were all fantastic!

I also met and talked to a number of people from other areas of the country. Many of MSleadership.gang.2015 - Copythem were from other NMSS chapters and some were from the national office.

I even met someone on the elevator who said “Jim Turk – sure, I know who you are…” I’m not sure if that’s a good thing or a bad thing but any recognition is good recognition, right?

The meeting itself was very informative and open. There were several “general” sessions where we all (900 total participants) got together in one main room and several “break-out” sessions, which was a little more like an a la carte line at lunch. We got to pick and choose which sessions seemed the most interesting and attend those.

The general sessions were filled with stories, awards, and even a performance by country music star, Julie Roberts. She has MS and told us a story about it before treating us to a number of songs. We saw a video by comedy great Amy Schumer, whose father has MS and keeps the cause very close to her heart. At the end, we were treated to a song performed by the local award winning high school A Capella group, “Volunteer Voices.”

The break-out sessions that I attended were how to leverage your strengths and your

Julie Roberts

Julie Roberts

story to get more community support and donations, research legislation and funding (this was a little on the dry side), the future directions of managing MS (really focused on health and wellness), and the strides that have been made in research and how we can talk about it in a way that people will understand.

There were networking opportunities – well, “networking” is something that I think of as a work term. This was more about making connections and sharing stories and ideas. I’m sure some would say “potayto – potahto,” but it was different… trust me, and poster sessions, which is an opportunity to meet many of the MS research up-and-comers and hear about their findings.

All-and-all, it was very cool. I hope to get the opportunity to go again and will definitely apply what I’ve learned! Oh yeah – I recorded much of it (audio), so I’ll try and get some of the relevant things posted in the near future.

Volunteer Voices

Volunteer Voices

I’m of No Use – Save Yourself!

This guest post was originally posted on multiplesclerosis.net

I’m of No Use – Save Yourself!

You feel guilty about running out of energy when you shouldn’t, don’t you?

You’ve done everything right – You got the correct amount of sleep, ate the right things (and more importantly, avoided the wrong things), you’re in an air conditioned room, but you’re completely toast.

Your spoons are all used up.

I had this happen to me when I was put in charge of cooking dinner for my youngest son.  My wife and oldest son had something to do.  As Bobby Brown would say – that’s their prerogative.  Just because I’m losing my abilities doesn’t mean that they should lose their’s!

I used to do all of the cooking.  I loved it.  I was good at it.  This was an easy meal and it would just be me and my boy.  A little one-on-one time.

I knew pretty quickly that things weren’t going to end well.  I nearly collapsed while I was preparing the meal.  I was totally useless and fell asleep when we sat down to watch a movie.

It’s frustrating.phone 10-13 615

As much as I try and pretend that I can do the things I used to, I fail.  As much as I want to be a good father to my son, I can’t – at least not the way society would have us believe.

“Do you see the light?” – Reverend Cleophus James

It’s the concentration – the focus.  It makes everything worse.  A lot worse.  Of course, that’s impossible to explain.

If I’m looking for my keys, I get completely wiped out.

If I am slicing tomatoes – trying not to cut myself or squash the fruit… or vegetable… or whatever the heck a tomato is – I’m beat.

The extra-maddening part of it is that it compounds itself.  I’m fixated on not cutting myself with the knife so I get even more stressed and tired, so I have to concentrate even harder.

It’s a useless endeavor.

Then I get warm as things become more difficult.  My body not only gets worn-out from the strain, but now that rise in body temperature makes it harder to get the easiest things done.

Am I the only one?  I can’t possibly be.

How do you explain that?  How can you make people think that you’re invested as a parent when you look “normal” and appear lazy?

How can I convince people that I’m a good husband despite my apparent lack of effort?

I look selfish even though I feel like I push myself – maybe too far.  People think I’m taking it easy but I really never take a break.  Never.

“What other people think of me is none of my business.” – Dr. Wayne Dyer

Easier said than done, right?  You can either do it or you can’t.

I think a big part of communicating that to others is confidence.  Sit down sooner or don’t start a futile project.  Look like you don’t feel bad about “quitting.”  And definitely don’t look the part.

You’re not quitting, anyway.

Is it quitting when you stop running after six miles?  Is it quitting when you just can’t eat another bite?

It’s stopping because you have to.  It’s not giving up.

It’s making the right choice because you’ll get sick or injure yourself if you don’t.  Everyone can understand that because they’ve all been there.  They’ve never felt like you do, though, so the assumption is that they don’t believe you.

Compare it to something that they ARE familiar with.  That they can relate to.  Even if it’s totally off-base.

Expectation plays a big part, too, so keep that in mind.  Don’t plant a seed that you MIGHT be able to do it – then they’ll expect it.  When you can’t accomplish what you said you would, they see you as not trying hard enough.  You become a disappointment.

So what if you DIDN’T give them an unreasonable expectation.  What if you stopped before it was a problem and DIDN’T explain it.  Years ago, I had a boss that told me “you can always tell if someone is lying because they over-explain everything.

pic with cane.11.2015Yeah, well, you know, that’s just like your opinion, man.” – Dude

Make a statement that they’re familiar with but don’t go into detail.  “That’s the last one I can do” or “I can’t eat another bite.”  Even – “go ahead… save yourselves.”

Are you just being funny?  Have you lost your marbles?  Maybe, but let them wonder.  They can ask if they want to, but you don’t have to shoulder that guilt.  You’ve thrown them off and they’ll wonder what you’re talking about.

But they’re not thinking about your abilities or lack of effort.

Who cares what they think, anyway?!  I say “screw them!”  They should be smart enough to figure it out and the people that are close to you know what’s going on, anyway.

Yes, it seems a little weird – ok, really weird – but there’s a break in the tension and the focus isn’t on you to explain what’s happening.  It’s just Jim being Jim and everyone moves on.

The best part?  Nobody feels bad about it.

Your identity might be in question, but that’s what you were worried about, anyway.  You we’re desperate not to appear lazy or incompetent.  So – give yourself a new identity.  A crazy, matter-of-fact identity.

Make them wonder – but they probably won’t.  Maybe looking guilty is what makes them think you’re making it up.  It’s like coming home to a chewed-up couch cushion and a dog that won’t look at you.

The point is that they don’t get it and you shouldn’t feel bad about it.  My son would have been happier if we’d ordered a pizza, anyway.

Make goofy, cryptic comments like it’s an inside joke.  Smirk a little.

Don’t sweat it.

So get the word out – share this post and let’s not act like everyone should expect a problem.  Embrace the discomfort!

Do you want to look like you have a problem and are hopeless, or that you are self-aware, confident, and dealing with it?