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?


How I Took Charge of My Chronic Disease

Admit it.

You’ve wondered to yourself – How will I be remembered?

Is this as good as it gets for me?

Am I doomed to a life of fatigue, worry, and dependence?

For six years, I’ve I tried to find a logical, scientifically relevant, “do-it-yourself” fix for this nasty disease.  Curing it wasn’t really my priority since a cure means different things to different people. I figured that if I could stop, or at least slow down, progression, my body was capable of healing itself.  I tried every hippy-fix I could think of. I’m sure I drove my family nuts doing the things I was doing, but when you’re desperate, that’s the least of your worries.

I wasn’t always that way, though.  I was living the life of the all-American guy until June of 2008. I went to college, had a decent job, played in a band, ran marathons, married my high school sweetheart and had a couple of great looking boys. I even went back to school to earn my master’s degree.

It’s funny how quickly your life can change.Jim._Borderlands_fall2013

Throughout my 20s and into my 30s, I was often referred to as “pretty boy” by my friends from high school.  I had long, flowing hair, I was well groomed, I hadn’t gained weight, and I was pretty athletic.  This was my identity.  This defined me.  It’s pretty hard to go to the doctor and admit something is wrong when your reputation says that you’re bullet-proof.

At first, I thought I was just out of shape.  When you are defined by your ability to get things done, your first thought is that you haven’t been working hard enough.  You don’t “deserve” it.  As things got progressively worse, I became a quitter.  It’s easy to give up on things like softball and poker when your kids are growing.  They became my excuse for everything.

I had to be a little more creative when it came to other things, like my speech, which was clearly affected in the spring of 2006.  That was another chance for the doctor to give me an excuse, which I ran with.  I remember it like it was yesterday, “you’re working full-time, going to school full-time, you have a family, and you’re not sleeping.  I get this way when I’m tired and stressed, too.”  I knew that this was different, but am I really going to argue with a doctor?

It was in early 2008 that I realized I couldn’t hide things anymore.  I took a header on an indoor track and almost peed my pants while trying to run.  I was perceived as drunk and given a sobriety test, which I failed, and ultimately a breathalyzer, which I aced.  I couldn’t even chase the ball down while coaching my son’s tee-ball team.

Then, on June 21st of 2008, the day before my 12th wedding anniversary, I got the news.  I was depressed.  My life had forever changed.  I was certain that I’d be in a imagewheelchair in a few years.  I didn’t realize at the time, though, how lucky I was.

This was the beginning, not the end.  I am Jim Turk, the person that has a great attitude and is an honest and reliable advocate (and happens to have multiple sclerosis) – not the pretty-boy/musician/athlete that my friends wanted me to be (although I am still awfully good looking!).  This is my passion.  This is where I want to be.

It started with a clinical trial.  That was my “in.”  Once I got over the idea of being a different person, physically, it became a great ice-breaker as I brought attention to the disease and advocated for research participation.  You see, I swallowed parasite eggs.  That seemed to grab peoples’ attention! (you can read a BBC article about it, here: (click here))

I made a lot of new friends, and I discovered what strength really means.  I frequently meet people that are much worse-off than me but have a better attitude.  I talk to people that have lost their job and are raising kids on their own with no one to help them do things like mow the lawn, get groceries, or clean the house, but are strong enough to see the bright side.

I have spent a lot of time focusing on my disease; drawing attention to the problems as I try to fix them.  I think that there is value in giving your body it’s best chance at recovery, but concentrating on your weaknesses can be detrimental, too.

I could spend my days dwelling on my diminishing abilities or wondering what tomorrow will bring, but that’s not productive or healthy.  I find that it’s much more satisfying to be grateful for what I have, to live in the moment, and to use my strengths to serve others.  Everyone has their problems and there are certainly a lot of people that have it worse.  They are the strong ones.  This is what I should have been focusing on all along.  I’m lucky to have figured it out.

I challenge anyone reading this to do the same.  Look at the positive aspects of your illness.  Make someone smile.  Discover new strengths.  Give yourself new purpose.  I did.