18 Holes For 19 PALS

The 2015 Ice Bucket Challenge will be different. You need to understand that. This year, rather than just shout "Donate to ALS!" in your ice bucket video,  direct your funds and your challenge to a specific ALS charity. 

We are proud to be listed among the amazing small charities on alsicebucketchallengers.org, a directory of small groups who work with families if ALS daily. The groups are divided into three segments:

-  Research

-  Patient Services

-  Advocacy

So pick a charity (hope-JG.org is a good one), dump your ice, challenge 3 friends and DONATE!

The 19  honorees shown in this video represent hundreds of thousands of families affected by ALS over the years. Donate for them. But choose a charity that tugs at your heart.

Thanks for getting wet and cold.

Perspective: An Observation

"Tragedy is when I cut my finger. Comedy is when you walk into an open sewer and die." - Mel Brooks

Having ALS certainly doesn't give me a corner on perspective. But, over the seven plus years since my diagnosis, I've met many people who have been told they were going to die. Some are still here, others have, in fact, passed on. I can guarantee you that for each of them, a "terminal" diagnosis was a perspective changing event.

How receiving that news changes one's perspective varies by individual. Nature, nurture, life experience, training, personality, faith (or lack of), religion (different than faith), social status, etc., all play a role in shaping our individual perspective. Some people become more resilient, some crumble. Some accept the news with grace, go about getting their affairs in order, some begin bull riding, cliff diving and savoring life. Still others just take each day as it comes. 

Social media has become a wonderful platform for an increasingly self indulgent world. Sure, it can keep friends and relatives separated by distance more connected. Just this morning I sent a birthday greeting to my Cousin in Indiana. However, more and more often, social media has become a platform for the emotionally needy to whine. There. I said it. Get a grip, folks. More accurately, get some perspective.

We're whining about the snow, the cold weather, our kids, our spouse, our best friend, our job, the President and how tired we are. Meanwhile, in the Middle East, a 6 year old girl is having her head cut off by a stranger, there are people in Africa dying of HIV and there's a homeless guy in New York City who would take your "crappy" job in a heartbeat. There are people in North Korea picking thru garbage dumps for food because their "President" isn't held accountable to anyone. There's a 10 year old girl who has been sold into the sex trade somewhere.

When I see social media whiners, it makes me sad - because it usually comes from good people. People who are better than what they are Tweeting, positing or Instagramming. Social media has made it far too easy to thoughtlessly tap out our emotions on our phones and hit "Send". I can't help but believe how often we'd post differently if there was an hour delay before our posts went through, followed by a display of what we wrote with an "Are you sure you want to post this?" pop up.

What a world we could make if, for every selfie, for every whining post about what previous generations simply considered to be the trivialities of life, we substituted a genuine act of kindness for others. If we focused on others instead of ourselves. 

Everyone's entitled to a bad day. No question about it. But do we really need to share every little bump in the road with the world? Norman Vincent Peale said: "The more you lose yourself in something bigger than yourself, the more energy you will have." I don't now about you, but I can always use more energy. The question is, how do we choose to spend it? Whining, or lifting someone else up?

I joked with our visiting nurse last week that I was going to have bumper stickers made that read: "Perspective - Get Some". I think I really will.

Now, go surprise somebody with an act of random, unexpected kindness. Guaranteed, you won't feel like complaining after.

ALS: No a Time for Fear or Small Thinking

     

We just finished our first Board Meeting of the year for the foundation. It was a bit overdue. We had so much to discuss that we sometimes strayed off topic and didn't really cover everything we should. We all agreed a second meeting in the next few weeks is due. Sitting here with some music playing, it occurred that one thing was clear: this is a passionate group of people.

In my work life, I insisted on two things above all else: passion and commitment. Those two traits trump knowledge, money or even talent. Passion and commitment are the crucible in which big dreams come to life.

I speak of big dreams because there are those who say (and more often it's unspoken, but no less palpable) that our vision to build a world class ALS/MS Residence is impossible. I call that "small thinking". 

Big thinking was never discussed in the house where I grew up. It went unsaid that, if you want to do something, just do it (I think Nike stole that from my Dad). The parallel topic that was discussed was the value of hard work to achieve your goal. "Nothing worth having comes easy." was a phrase I heard more than once. Dad would have loved the New England Patriots them of "Do Your Job" this year. I can honestly say I was never discouraged from doing anything. My parents weren't afraid to let me fail. My folks struck the perfect balance between being supportive and letting us learn the lessons of failure.

Families with ALS know this as soon as they hear the diagnosis fall from their physician's mouth. Fear isn't an option, and neither is small thinking. That's not to say the fear isn't real, you you either give in to it or you saddle up for the fight of your life - literally.

Two comrades in arms were in the hospital recently, fighting through tough different battles against our common enemy. Steve Gleason and Pete Frates, without question two of the highest visibility and most effective advocates in the ALS community today, have both demonstrated passion and commitment from the day of their diagnosis. Some might say it's because they were both high performance athletes but we know people fighting ALS who have never stepped foot on a field of play.

What binds the ALS community together is passion and commitment. There's a perspective and a focus shift that happens when a family hears "Dad has ALS, and we have no cure". At that moment, whether they realize it or not, they've become part of a larger family. At that moment, they become fearful, or fearless. At that moment, their world changes - forever.

It's no coincidence that the vast majority of fund raising for A!S is done by family and friends of the afflicted. And in the case of Pete Frates, Steve Gleason, Augie Nieto and countless others, the afflicted themselves. They share a passion that no families should be forced to endure this disease.

At our Board Meeting, we discussed the need for passion and commitment on our team. There are many smart, experienced people we could ask to be on the Board. But it only works if they have a real connection to ALS or MS or otherwise stared death in the face. If they've experienced that perspective shift. 

So...we're always on the hunt for passionate people. Our Advisory Panel,has been very helpful as have some unofficial advisors we know through the amazing ALS Facebook community. They all share the passion and commitment to help us achieve our goal. 

Fear? Not an option for us. Small thinking? No thank you. We dream big around here. We live in a world where miracles happen and dreams come true.

Want to help us too? Drop us a line at: info@hope-JG.org.

Donate at: http://hope-JG.org

The Perfect One

“He’s not perfect. You aren’t either, and the two of you will never be perfect. But if he can make you laugh at least once, causes you to think twice, and if he admits to being human and making mistakes, hold onto him and give him the most you can. He isn’t going to quote poetry, he’s not thinking about you every moment, but he will give you a part of him that he knows you could break. Don’t hurt him, don’t change him, and don’t expect for more than he can give. Don’t analyze. Smile when he makes you happy, yell when he makes you mad, and miss him when he’s not there. Love hard when there is love to be had. Because perfect guys don’t exist, but there’s always one guy that is perfect for you.” 

― Bob Marley

After knowing my wife for over 38 years, this quote struck me in a way it certainly would not have 38, or maybe even 10 years ago. We've lived through the typical "struggles" of life, raising two children, building two houses, quarrels over important and petty things, paying bills, changing jobs, death of friends and relatives and events that were (we thought) unique to us, battling foreclosure, getting pushed out of a business I helped to build and even seeing my Linda laying unconscious on the floor after being hit by an errant baseball throw - a week before giving birth to Matthew. Turns out, none of those made us special or unique. That's life. And none it prepared us to deal with ALS.

Much of life is about expectations. How we set them, how we follow through with them and, as this quote points out, the often unspoken expectations we cast on others. I've been so far from perfect over the years, I'm amazed Linda has stayed with me. I know the expectations I set for her of me early in our marriage weren't realistic. And neither were my expectations of her. I guess that's what they mean when they say "nobody's perfect.

Anyone going into a relationship would be well served to take this quote to heart. Post it somewhere where you'll see it every day. Linda and I have made it through some very difficult times that would have crushed most marriages. Reading this quote made me realize that it's not because we're able to ignore each other's faults, but because we've always accepted them (and again, I have many more than she has).

We're not perfect - but we're perfect for each other.

I love you Linda and I'm thankful every day that you know my faults and make me a better man.