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!

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!

The name game

No matter what flavor of MS one has, if your legs are a part of the equation, there are just some days where a “stick” does come in handy. It’s never a willing decision especially considering the preconceptions about what life needing a cane might be like.

My first cane was later given a name that fit its creepy and had a very undesired nature. It was hospital ugly, made a loud clicking sound and more importantly was a part of my introduction to MS.

Soon after I got my diagnosis and out of the hospital, I got a new cane at target. He was an inconspicuous black and the best part was that it was made of wood and I could trim it to fit.

Be healed!

Since I had it in my head at the time that it was not going to be a permanent part of my life, I felt that it needed a name so that it could come up in conversation without an overt negative context. It had to be unique so that others weren’t needlessly brought in to the conversation and more importantly, it had to be a name that had no other reason to come up.

In a moment of completely random word association, I came up with Rasputin. I assure you that there was no meaning. It was just a name of a person that I was positive that would never come up.

Conceding the point that the name game might be a long-term thing, I decided to give my previous cane a name for reference purposes only. Noriega. He was just as unsavory as his name sake and I felt just like 41, he may have served a purpose in the past, but when he raised his ugly mug, I didn’t like him and I didn’t want him around.

There was a problem with this new reality that I couldn’t see coming. When I used it, I started behaving grumpy and crotchety… in short, I was acting like a stereotypical old man. Though I never used the phrase “oh you crazy whippersnappers” I might as well have. I hate to say it, but at times I was not all that much fun to be around.

I was slipping off the grid. I still looked young, but every other step was a reminder that I had MS.

I wasn’t actively seeking out a replacement for Rasputin but his effect on my disposition was annoying my future wife. Worse yet, all the canes that I found online were either corny, stuffy or just outright dorky. (an eight ball cane might sound cool on paper but it’s just not)

Putting for par

While poking around at an antique / resale shop I came across a set of old golf clubs that had one of those putters you find a mini-golf place. Why not? It was perfect. After the 18th hole has eaten our golf ball, one heads back to the counter using the putter as a cane. When playing mini-golf we all had done it at least once. It just makes sense, and is kinda dorky cool.

In case the name reference is in obvious, Byron is named after Byron Nelson. The man, the myth, the furniture maker.

In order to make it work and last, I gave Byron the bottom off of Noriega. It took some creative effort to make it work but as a cane, it was stable and cool enough to be worth the effort.

I was “happy.” Byron made me feel young hip and gave me a second hand-shop cool swagger. As you might imagine, none of this impressed my nuro but Byron was here to stay. There were a couple down sides though…

1) It was about 1/2 an inch too short.
2) I had to come up with a witty and infinitely repeatable response to the question of “is that a real putter?”
3) My wife was understandably concerned that the TSA wouldn’t buy my story and send it to the lost nail clipper dudgeon.

The last one was a real concern as we prepared to leave on our honeymoon overseas. Byron was not to be collateral damage on the path to marital bliss so a travel companion was acquired.

Oppie’s gadget

While on a previous vacation, I had one of those bad MS days and since we had flown to our destination, I was without Byron. It would have been a waste to buy a cane that I couldn’t use in the future and the last thing I wanted to do was leave remnants of my MS reality in the homes of my family. So I picked up one of those folding travel canes. The up side was that it was handy and easily hidden. Down side was that it had that old familiar hospital click but at that point, I didn’t care. I was tad more focused on being head over heals in love and married.

For it’s obvious ability to comically expand at the drop of a hat, Inspector Gadget was a perfect name. It later got shorted to “The gadget” in deference to the achievement of another character that I had read a lot about.

Passing of an old friend

Since my needs for a cane are fortunately fleeting, there have been times when I went out to dinner or a coffee shop and started to walk out with out my stick. This makes perfect sense considering that I had a chance to sit and relax for hours and at that point, was well rested enough to not need a cane exit strategy. After some close calls, one time the inevitable happened and I hadn’t realize that I had left Rasputin somewhere on the trail.

I didn’t get too worked about it. I mean it did suck, but retracing my steps, while being a bit frustratingly comedic, would have been more work than it was worth.

I didn’t need an immediate replacement since I still had Byron but the truth was that I was in did need of something that was a little more presentable. Byron is great for parties and coffee shops but not so much for professional environments.

The Charlie’s limelight

Again at another antique shop, I stumbled on to an old cane that fit the bill. It was a little brittle for my taste and a little tall but with a little trim off the top it was perfect. It was a normal cane and had character. I have yet to try the trademarked Charlie Chaplin walk and cane twirl (I perform enough stunts thank you very much) I do hope to get my own derby hat someday. They still make them right?

At the moment Charlie mostly plays second fiddle to Byron but does have a prized reserved seat in the car. I have learned to never travel without a mobility plan B.

Stay tuned for my next post on the subject. “The new puppy that came too early.”

My MS D-Day

We all say that it’s best to get bad things over with fast by just ripping the band-aid off fast. Well that’s what I did… I just wish I had clue that I was wearing one in the first place!

When I first started sharing my story about getting diagnosed, I kept getting comments from other fellow members of “Club MS” that were generally along the lines of “all of those strange things that have been happening must make sense now.”

This was inline with the common story that since MS cant really be caught with one test, just a long series of other things ruled out, most people seem to experience unexplainable things for years until one day either a) a doctor decides to you seriously and run the right series of tests or b) things get so crummy there’s no other conclusion.

Not me. In my case, my MS came in pretty much in one fell swoop.

Ok, there was one case of “what the heck?” that happened about a year and a half before. Slow sensory paralysis worked its way up to my waist. The fact was that I was way to busy with work and moving my self across town, one box a time, to deal with it. After while, thankfully it just went away.

The real fun began in 2007 when I had a transverse myelitis that came with all the cornucopia of experiences. Leg weakness / foot drop / RLS / hot&cold miscues / and that joy that is so lovingly called the “MS hugs.”

So one week after my girlfriend, now wife, moved with in me… off to the GP I went. He pretty quickly noted that my internal electrical system was a tad out of whack and said that I could either call a neurologist to get an MRI and hope that they would squeeze me in in a few months, or I could go get one at the hospital across the street. Opting for door number one, little did I know that I would be stuck there for almost a week.

I spent six days getting pumped up with steroids, poked with big needles, falling asleep in the MRI tube and eating the gosh darn best hospital food on the eastern seaboard.

Since it was a teaching hospital, every time the gang did their rounds, I learned a little more about what they weren’t telling me. Armed with daily intel from the front line and my BlackBerry I was able to put the pieces together and wikied Multiple Sclerosis.

So after million other little tests confirming what everyone already knew, I got the diagnosis about three weeks after everything (in my mind at least) began. Making everything that much more “easier” there was no question since apparently I had a classic case and had lived with it for years with out even knowing it. I went to a second neurologist and he said the same thing.

So just about a month after I started leaving fingerprints on walls all over town I was deciding what flavor of expensive sharp object to poke myself with on a regular basis.

Of course there other subplots to this story but I think I can leave the story of the secret hat in the box for another time.

hello world

Eric here. 30 (ish please!) professional in Houston Texas. Not a native mind you, but I was smart enough to marry into the Republic.

I’ve lived with Multiple Sclerosis for a just over a couple years now and while I don’t want myself or this space to be seen as a one-trick-pony, often I’ll be writing about the largely unspoken everyday reality of life with MS.

For the uninitiated, MS is a chronic progressive nervous disorder involving loss of myelin sheath around certain nerve fibers. Translation: Sometimes the body’s internal systems don’t work so well. Slow/fast clocks, reversed light switches, bulbs burning out… well, you get the idea.

Every person who lives with MS has a different perspective and a unique story to tell, but there some common themes. True, we are in a time of great medical advances and risks but it’s still nice to know that there are others who face the same questions and uncertainties everyday.

Want to learn more about MS? Click here

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