Confidence gained from everyday victories…

While working on the May edition of the 12×12 project, I came a cross this video from the Multiple Sclerosis International Federation (MISIF) that I wanted to share. It really spoke to me more than any other video, pamphlet, website, etc about MS videos that I’ve seen.

(click on picture to watch the video)

It features people with MS living normal lives. (shocking, I know!) They’re not superheroes, just normal people doing everyday things. More importantly, they all appear to be comfortable in their own skin.

True, we all have the ability to smile for the camera and these people were probably selected for just that reason. That said, I found it meaningful that they were typical settings that were just a part of their routine lives.

My point? They were not self-conscious about how they dealt with living with life with MS. The just do.

Of course most of us are intrigued by stories of people who “overcome so much” and accomplish big things. It’s the Horatio Alger in all of us.

“Runner with MS finishes the NYC Marathon!” Ya, If I read this headline, it would impress me, particularly since I would have an idea about what crossing the finish line would mean for that person both physically and emotionally.

But for people with MS, everyday life can be full of little challenges and successes that are personal and go unnoticed by those who see (or don’t see) them happening.

In the video, I was stuck by the accurate portrayal of…

- Confidently walking off an escalator, making the simple everyday act look and feel natural.

- Looking in a full-length mirror in a store and being able to smile and even laugh at yourself, no matter how you walk or roll to get through the day.

- Being lost in the moment of self-realization that you now live with MS and being totally lost in the moment processing of a million thoughts that surge through your head for the first time.

Ok, so I can be pretty sure that the last one was played by an actress but the moments that featured “Elena” felt pretty accurate. They capture something that is not really talked about all that often when considering the lives of young adults with MS.

Many of us live with significant others who try so hard to understand what the heck is going though the head of the person they love.

To me, this is the most accurate 4 minuets about MS that I have ever seen.

May 12×12 – Go With (what) You Know

So not all volunteering opportunities for the MS Society can be big as the MS150. How could they be?!

I imagine that there could be people out there that have an interest in volunteering for the MS Society, but for one reason or another, can’t make a commitment to at, or a part of a big MS Society event.

Well, as that great American Philosopher Woody Allen once said, ” Ninety percent of life is just showing up.”

Now, I don’t mean just put on an orange shirt and put in some time at an event registration table. There are many other ways to pitch in.

Do you have a skill or skill-set that you use to help out others out (work, family, etc…) at your disposal? Well, then here’s a chance that there’s a way you can use it to help further the organization and mission of the MS Society.

(I know I know, I hate that sort of boiler plate PR language too, but waddya gonna do?)

For the May segment of the 12×12 project, I’ll be focusing on a way that I can help out the Society in a way that is matched to my professional experience.

Last week, I met with Gena, the Marketing & Communications Manager for the MS Society Lone Star Chapter and we talked about my experience in communications and in particular in web 2.0 environments. We brainstormed about the current successes and challenges that the Lone Star chapter and others have had working with web-based mediums to create conversation and communities.

As the talk turned to the future, I realized that there was a great opportunity for me to use my personal knowledge to help out.

Of course there are people at the Society who are very knowledgeable about these sorts of things, but life on the clock (especially at a non-profit) doesn’t always offer time to look into crystal balls. So rather than throw out a ton of ideas, (read, make more work for Gena) I offered my skills and do some research on the subject for her.

I’m happy to report that my idea was very warmly received by Gena.

My goal for May will be to be a creative second set of eyes to generate some ideas and offer some thoughts and recommendations. Here’s my tasks..

1) Take a look at what’s already working for the Lone Star Chapter
2) Check out what other chapters are doing
3) Qualify trends vs. trendy
4) Find out what users of social networking sites like to see, and hear about MS

Who knows? I might come up with some new and cool ideas.

I assure you, there will be more exciting volunteer opportunities to come. Honestly though, I’m really like this project because I get to pitch in by doing something that I love and don’t have to readjust my schedule to do it.

MS 150 Recap

– The Night Before -

I had assumed that evening was only going to be the final chance for riders to pickup their numbers for the the MS150 and that this meant that there would only be a few stragglers to help since they had had so many chances to pick everything up before the final night. Well, that couldn’t have been further from the truth.

The event (and that’s it was) was actually the rally point for the launch of the ride the next day. There were riders, vendors and volunteers all packed the small space. It felt like a festival!

I joined a sizable group of volunteers at the registration tables, signing people in, giving them their numbers and directing them to the portion of the hall that had their event t-shirts and yes, the previously mentioned green goody bags.

All of my interactions with the riders were pretty short but often meaningful. As I typed in a few numbers, the obvious small talk began with my asking them if this was their first MS150 ride. Very few of them said that it was. In fact, I’d say the mean was seven years. There were teams, buddies, spouses, parents and their children.

What quickly really hit me was that almost every single person had some sort of a personal story connection to the mission of the MS Society.

Before that night, I had this idea in the back of my head that the MS150 was probably just a cool ride for a charity to most of the riders. Again, I had no idea how wrong I was.

One story will never be forgotten.

A man mentioned to me that he know someone who lives with MS and that that person had told them that his riding to support the Society meant a lot to him. With a smile, I raised my hand and said, “Well, that makes two of us.” He gave me a quizzical look and asked if I lived with MS. As I signed him in, I told him that I did and that I wanted to personally thank him for his support of the Society.

After walking away, 30 seconds later he returned and looked like he had something to say. “Since this means a lot to me I wanted share something with you. Every year I ride in the name of a person who lives with MS. It makes it real for me. I buy a new jersey just for this ride and I ask the person I’m riding for to sign it. I wear it both days of the 150 and after the ride is over, I sign the jersey myself and I give back to them and thank them for being my inspiration.”

I told him that as a person who lives with MS, his gesture means so much more than any of the dollars that he raised combined. Of course it is a poignant moment on so many levels. The obvious aside, it was cool to hear his story because I always wondered if the people participating in huge events like the MS150 are really interested in raising money for the MS Society, or is it just a big social event for them.

Though that was certainly a moment that will stay with me for of the rest of my life, he was not alone. Almost every rider that I had signed up that evening knew exactly what the MS society was and why their weekend ride meant so much to so many.

So what I thought was going to be a busy evening of typing in numbers and directing traffic became so much more. People who work, volunteer and participate in MS Society events are all very cool, fun people.

– Halfway there -

On day two of the ride, my wife and I decided to join the gang at the “Bubble Bistro” at the ride’s halfway point in La Grange. Honestly, I had no idea what to expect.

By the description that I had heard, I expected it to be mostly a social event for people with MS. (see quote in the previous entry”) Add to that, Klaire from the Society mentioned that, while it would probably not be a true volunteering opportunity for me, she though that I might be able to find a few chances at least be helpful.

Indeed…

We showed up just as riders were beginning to stream in and found our way to the Bistro, which was between the riders’ entry gate and the huge maze of team tents.

The activity there was anything but sedentary, in fact, the place was hopping!

Whatever the original concept of the Bistro was, it was immediately clear to me that it was quite different then what I had envisioned.

There were at least 15 other volunteers there prepping and handing out water, oranges, Gatorade and other snacks to the riders arrived and walked their bikes to their team tents.

As we handed stuff to them, we thanked them for riding and supporting the MS Society and they in turn, they were thanking us for volunteering for making the event possible.

Most of these interactions lasted no more than five seconds and were surprisingly positive. Of course, how could they not be? They had just ridden 77 miles and we had fresh fruit cold water in our hands but much like the night before, almost everyone knew exactly why they were there and what it all meant to others.

After a couple of hours at the Bistro, we decided to take a break and check out the rest of the grounds. I was blown away at the size and number of tents. I mean I had been told how big the event was, but some these spaces were quite the operations.

Of courser they would have to be… there were 13,000 riders.

Add to that, on top of all the volunteers that were working for the MS Society, there were also large numbers of volunteers and supporters for the individual teams. It was a true sight to see.

After our walk and rest break, we jumped back in at the Bistro for a couple more hours of handing out snacks to the riders.

We concluded the day being fed a dinner by the Society for our efforts. I think that the dinner was an option offered to the riders and others who were not a part of one the teams. Meaning, the food was healthy, it was huge and it was full of carbs.

Though we didn’t do the ride, after four plus hours of volunteering, it hit the spot.

After passing out snacks an appreciation for over 5 hours, we decided to call it a day.

As we headed out of the area, we drove along the roads that the riders came in on and passed the tail end of the riders and support vans. They had been on their bikes for almost half a day and they were the last to arrive in La Grange. If we had known that the last riders were so close, we would have stayed to make sure that we could personally welcomed and thanked them for hanging in there.

– Lessons learned -

People do really care about giving.

Ok, so that is exactly the kind of hokey statement that scares people away from volunteering because they might not want to be a part of a group people that have nothing better to do with their time. In this case, I found that nothing could be further from the truth.

At both parts of the MS150 that I volunteered at, I also met a wide range of working professionals donating their time and expertise.

In the beginning of all of this, I was hoping to make my volunteering in to a big thing for my 12×12 project and meet other young professionals such as myself who live with MS who might not been able to ride but still wanted to offer their support to the riders. Unfortunately, it didn’t happen.

That said, it was great to be in a space that, as a person “who looks so good,” where I could be open about living with MS without worrying about people misunderstanding what it is and isn’t. Such openness is not always easy, no matter who or where you are.

(These experiences can, if but just one moment in time, feel normal. Something that sometimes a challenge to come for those us who live with MS.)

In the end, being a volunteer is just being a person who freely offers to take part in an enterprise or undertake a task. All one has to do is have a heart and show up. Despite all the creative ideas that I had for the weekend, despite their not really happening, I am very happy to report that it actually took very little effort to still find meaningful ways to pitch in and make a difference.

April’s 12×12 project – MS 150

I’m excited to report the MS150 is finally here and I’ll be volunteering twice! First, I’ll be volunteering at the final pick up point where riders will be receiving their registration packets. It will be at the Houston Omni Hotel tomorrow and I will be there to help direct traffic and help make sure that the riders dot their I’s and cross their t’s before they hit the road the next morning.

On Saturday, my wife and I will head to the Fayette County Fairground which is where the riders will end day one of the big ride. I’ve heard the legend of this part of the MS150 and can’t wait to see the crowds and huge tents. Also, I’m so looking forward to hanging out at the Bubble Bistro Tent…

“The Bubble Bistro was created by a committee of ladies who wanted to ensure anyone living with MS who attends the BP MS 150, would be able to have a cool spot to see the riders cross the Finish Line in Austin and La Grange. This unique shaded and fanned viewing area serves as respite to enjoy a snack, cool beverage and the excitement of cheering for the riders while bubble-makers fill the sky with their signature welcoming BUBBLES!”

True, it’s possible that there might not be much to “volunteer” here, but this should be significant for me. Since I learned that I live with MS, I’ve only met and really connected with two people that shared the same disposition. Being 30 something and “looking so good” doesn’t really lead one wanting to join a self-help group. My hope is to have a good time, meet some new long-lost friends and spend the afternoon showing the riders that their sore muscles make a difference in peoples lives and are very much appreciated.

Now as for day three, there was a plan but it looks like that my efforts will, happily, not be needed. I was planning to volunteer a to be a part of a crew of 15 volunteers operating a break point for the cyclists. While we were totally committed to getting up at 4am on Sunday morning to make it out to the station, I learned today that the organizers now have a group of 42 volunteers last minute to staff the assignment. Um, ya… I think they got that covered!

Needless to say, I plan to show and tell here as much as I can over the next few days.

Sneezing… on a Sunday afternoon

I’m currently sitting outside my favorite coffee shop, reading blogs and drinking my second cappuccino of the day. Just a quiet afternoon with my wife who is (predictably and happily) buried in a book. This is what perfect lazy weekends are supposed to be like.

Of course this is not the norm in Houston Texas. True, the sunny weather is just about the norm much of the year here, but let’s do the numbers to highlight the good. 75/57. That’s 75 degrees and 57 percent humidity… in Houston Texas. For a guy who doesn’t do so good on humid days and therefore watches those numbers like a hawk, for me this is good as it gets.

Of course I’m glossing over one significant little fact. The pollen count is brutal. I’ve never really had allergies before, but I sure gott’em now. Fortunately, there’s a drug for that. So while my screen is getting greener by the hour from the pollen, at least it’s not getting too wet from sneezing.

My wife isn’t so lucky, then again, she’s the one who forgot to take allergy pill this morning. Not she would notice at the moment. She’s a little more focused on the words that she’s inhaling!

When I was frolicking among the Blue Bonnets yesterday, (again, a moment made possible by the fine drug makers of America) I was pondering what the conditions will be for the MS150 will be next week.

I’ve only been actually affected by allergies once in my life. It was during a ride on my bike in the region where I grew up. I rode through fields and fields of lavender just as they were in the middle of their seasonal release. By the time I got home, my throat was swollen, my eyes and nose were running, and my voice was gone. I was a radio announcer at the time and I had a shift that night. Um, ya, didn’t do much talking that night. I was lucky just to be breathing.

But that was it. No allergies since. Even when I did pretty much the same thing on our honeymoon on a motor scooter, I had no problems. This year is different. It’s big and it’s everywhere.

So, while one might assume that most of the riders in the 150 will be from Texas and thereby used the pollen grown in these parts, it could be a tough ride for some.

Two things could help. 1) Perfect riding weather. Sunny, cool and recent light drizzle to take the pollen out of the air. 2) Lots of helpful volunteers along the way to help and cheer the riders on.

Well, despite the fact that perfect weather recipe appears on tap, we all know better than to trust pretty weather people on TV. As for the second part, maybe I could pass out tissues at the break stop that I’ll be volunteering at… though I suppose that they would know what to do if they start sneezing after riding through a cloud of pollen. (It’s not pretty, but it works)

At the very least, I’ll make sure that I will have my meds with me.

April 12×12 project – Austin Callin’

I’m on board to volunteer for the Texas MS 150 Bike ride event twice! In my mind, this marks the first high point of the 12×12 Project.

Spoke to Klaire yesterday and I have now have my April volunteer calling. Unfortunately all the big volunteer jobs have been spoken for, (I missed the driver/navigator boat) but that said, she was able to cook up some small things that, much like the Goodie Bag Stuffing party, represent some of those little things that volunteers do that makes a big event, well, big.

First up. While riders got several chances to pick up their registration packets already, there are a few stragglers. So, on the day before the riders hit the road, I’ll help direct traffic at the final pick up site. I, and others will help the riders dot their I’s and cross their t’s before they are released in to the wild. (i.e waivers)

The second part of the adventure I, and I do mean adventure, will be a part of a crew of 15 volunteers operating a break point for the cyclists. We’ll there to cheer them on and give offer them snacks. We’ll be outside of Smithville and it should be cool since Texas is in the middle of its wild flower season, a site to behold this year.

At both events, I’ll be focused on making sure the riders are hydrated and appreciated. I might even make an effort or two to take advantage of some small moments to let them know how their efforts make a difference in the lives of the people and families who live with MS. True, to the untrained eye, it might be seen as a bike ride among the flowers, but when you run the numbers… it’s a very big deal.

Are you going to a part of the event? Drop me a line I’d love to say hi, say thank you or offer by you a Shinner… I’m open to all three!

Here I’m

Yes, it’s been awhile since I darkened the doorsteps here. My bad to be sure. First a disclosure, then an update on the road my MS 150 which is right around the corner.

Me too busy? Nah.

Ok first, I’ve been a very bad blogger. Now, I’m remain totally committed to seeing the Project to the end, but I realized that I don’t have a blogger mindset yet. I need to focus on sharing more, using shorter sentences and yes, thinking a bit less. Those who know me, know that this no small task.

I’ll admit it; I often get distracted by foreign policy discussions and shinny things made by Apple.

Second. I’ve been crazy busy and it’s been a bit of a challenge adjusting to all of the new big spinning balls.

Did I bite off more than I can chew? Perhaps, but I meant what I said and I said what I meant. To quote another famous American philosopher; “Relax. What is mind? No matter. What is matter? Never mind.”

Now, please place your laptop and shoes in the grey bins and on with the show…

MS150 – All Roads lead to Austin

I had a meeting with Kelly last Thursday and it became clear that all points on the compass are (for the next few months of course) lead to the MS150.

So to get things started, I thought that I would pitch in spend a few hours stuffing bags that the MS Society will be giving to the riders in the upcoming MS150 with the members of the Mayde Creek High School band.

Organized chaos

The “Green Goodie Bags” were going to be filled with ride information, a mouse pad and a bicycle water bottle for the 13,000 riders.

Ya, that’s a lot of Goodie bags.

As I walked in the school, I could hear the chaos even before I saw the door and it was obvious that my help was probably not going to be required. Things were going so well (and fast!) that the plan to possibly come back and finish the stuffing tomorrow was, shall we say, clearly not going to be necessary.

The room and the kids were a pizza fueled perpetual motion machine. As you can see from the pictures, they had set up several tables with the empty bags at one end, the stuff to go in the bags in the middle, and the bag-o-bags at the other end.

The new system

The plan WAS set to have a person put one thing in the green bag, then hand it off to the next person, then they would put the next item in the bag and finally put the Goodie bag in a bag-o-bags. The process would be repeated until the big bag was full.

If you visualize the scene, that means people standing still at the tables all doing the same thing, over and over. That was, until the kids came up with a better idea.

They decided that it would be more fun to stuff each bag on their own. That meant that they would grab a bag, walk down the line gabbing and stuffing, put the bag in the bag-o-bags, then walk back to the be head of the table.

Wash, rinse and repeat.

Probably more work than necessary but they were having a ton of fun and working faster than anyone expected.

After the bag-o-bags was full, it was taken outside and “placed” in the rental truck. I say “placed” since there were no breakables in the bags, they were heaved in to the truck with flair. Did I mention they were having fun?

Launching the "bags-o-Goodie Bags"

It was really great to see one of those little things that are such a big part of huge events like the 150. I think I’ll put the pictures on my iPhone and show them to some of the riders. Click here to see more pictures…

What’s next? I am thinking about joining other volunteers at one of the MS150 Packet pick up sites… and possible do something cool (and take pictures of course) during the big event!

February 12×12 Volunteer Opportunity – FINAL!!

click on picture to see the video

Ok so it’s not really February anymore but my entry for the 12×12 project began way back when! Had lot’s of trials a tribulation working on my entry for the “MS3Things contest” but I was able to finally pull it off!

Lessons learned…

1) When I get a great idea about how to pitch in, only dream as big as I have the energy to donate. Certainly a very hard thing to quantify but for people who live with MS, very significant.

2) With respect to point one above, I should try not to offer to do things on my own time. Reason being that it’s easier for me to set a block of time aside to be focused outside of home. At home, well, life just gets in the way.

3) As much as I love personal communications and performance, I will never be a vlogger. I’m way too much of a perfectionist.

All of that said, I hope you enjoyed my video and I can’t wait to March into my next 12×12 project!

February 12×12 Volunteer Opportunity – TAKE 2!

Well, it looks like a crucial component of the Goody Bag event has been delayed. From what I hear, that bags are still on a slow boat from Los Angeles.

Ummm ya, the bags are kinda important part of the process.

So, since a plan B in place but won’t be until March, my February 12×12 project returns to creating a video for the Society’s MS3Things contest.

It was the plan all along but I got a little side tracked. It’s all written and scripted now I just need to put it together.

I think I’ll finish it today. Wish me luck and tune in tomorrow…