Goodness

Want to believe in the goodness of people in this world?

Then take a look at this post 

Amy, one of our supporters who has MG, wearing a VW4CAUSES T shirt

You can be part of the goodness too … by:

  • sharing our sister site, or

  • liking this post (if you can’t see the buttons for liking or sharing, click the header name of this post “Goodness” and then they’ll appear at the end)

  • signing up to receive updates on this website by email (top right column) so you always know when there’s a chance to interact, should you have a couple of minutes to do so.

Thank you 🙂

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I am so thankful

I was just thinking back to a few days before the end of my drive in California. Shown here is my trusty 1971 Volkswagen Westfalia in Carpinteria, just south of Santa Barbara. The night before taking this photograph, I’d stayed with VW friend, Judith, whom I’d met two years before in March 2010 on my first VW road trip.

The YesWeCan CamperVan in Carpinteria, California, towards the end of phase 2 of the MG Awareness drive; start date 20 October 2011 from Provincetown, MA, end date 15 May 2012 in Corona, CA, total distance 7853 miles

On that first trip I soon realized that my VW was my new friend who would introduce me to many more new friends. I also realized that my precious VW gave me the opportunity to start conversations with strangers, and the question quickly became what was it that I wanted to start a conversation about? Was there something important that I could talk about and that would be of interest or benefit to others, I wondered.

At the end of 2010, one year after the start of that first road trip, I was sure I’d found the topic, and another year on as I set off on my second cross country drive, I was pleased I’d chosen MG (Myasthenia Gravis). It would be the focus of my communications on auto-immune diseases and neuro-muscular ones in particular.

Seven months and over 7,500 miles later, at the end of my day in Carpinteria pictured above, I’d felt very fortunate that my VW had transported me safely on another momentous journey. On this trip, unlike the first, we’d had three major repairs before finally a new engine was built and fitted in Los Angeles. However every single time, help was on hand. It was miraculous how I was supported and helped along the way.

In the first instance, when the clutch started slipping and it was apparent it needed replacing, the Full Moon Bus Club’s South Carolina Coastal Group offered to fit a new clutch at their Thanksgivin’ Misgivin’ weekend campout just north of Charleston. Not only did they work on this repair all weekend for free, but Wolfsburg West stepped up and sent a new clutch free of charge and by overnight courier all the way from California to the VW campout’s organiser before we even arrived.

Two weeks later in Alabaster, Alabama, the accelerator cable broke in the middle of a busy traffic intersection as I was driving behind Staci (an MG patient who had been my wonderful host and helper) to accompany her in a Christmas Parade. On that occasion, Bill and Carol from Sylacauga had answered the distress message sent out on the VW network by my ‘support man’ Ken (back in Massachusetts) and they then drove one hour from home to meet me and fix my VW (after which they insisted I have my motor checked and hosted me for a few days while it was).

Two and a half weeks after that, as I was driving one early morning in a remote part of Texas, the fan belt shredded!!!! No sooner had I stopped on the side of the highway, we were joined by the nicest state trooper I’ve ever met. It was a very cold morning and I already had a sore throat and temperature, so he had me keep warm in his car, offered me his phone to call Hagerty for my breakdown service (my mobile had no signal) and stayed with me until my VW was on the tow truck an hour later.

It occurred to me at times such as those mentioned above that my VW bus is a perfect metaphor for a person with a chronic disease like MG. For example, all of us classic VW owners know (and mostly have come to accept) that our vehicles do not move as fast as high performance models, that they lose their balance around sharp bends, and that they often fight to get up hills. We also know that on a good day or when there’s far less resistance, the engine can run much stronger and livelier … and that during those times we can let out a loud sigh of relief or maybe we smile gently to ourselves, knowing that our faith has been restored and the struggle to keep going was definitely worth it.

We also know that during those ups, we might go a little crazy and do too many miles, and that, while it’s good while it lasts, chances are we’ll be pretty tired and plain old worn out later on.

As time goes by, we also learn that life in the slow lane can have its merits, like being far more appreciative of the good times and the fleeting moments of running free without bounds. Most of all we learn that living in the present moment is all there is, and with that, comes a joy all of its own.

So driving an old VW with it’s foibles and surprises, can really be a pretty good metaphor for what it’s like to have a chronic disease and to be steering one’s body through all the challenges that get thrown up along the way.  And the thing is, VWs just keep going and going if they are looked after and treated gently. Also one good example seen out and about on the road can be an inspiration to another, and waves and toots indicate that we share a common language.

For me, my VW has also been the friend who helped me find the very best of friends: those with whom I have a special understanding and with whom I can laugh and cry; those who have similar values and who give without expecting anything in return; and those who realize that trust and loyalty are the most precious of gems.

Boy oh boy … when I look at my old VW campervan, I really do have a great deal to be thankful for, don’t I?  🙂

Route update as of 10 Dec 2011

At last I put up a hand made route map in the back window of  The YesWeCan CamperVan – I mean I got a map and drew the route on it! I’ve been looking for one of those that I’ve seen on RVs, you know the vinyl maps of the USA with little stickers for the different states you’ve been through? I spotted one yesterday but I stopped myself from sliding it off the RV ….. !!!!


I’ve asked every time I’ve filled up with gas (and that’s been a lot of times in the almost 2500 miles I’ve clocked up since leaving Cape Cod, MA) ….. but no-one has had one or knows what I am talking about.

If any of you readers can direct me to a place to get one, just let me know by posting a message here, where you’ll be able to check the route I am following and tell me if any stores that sell these are nearby. Right now I am posting from near Mobile AL. Tomorrow I hope to be on my way to New Orleans, LA.

In any case, I wanted to show how many miles I’ve driven and my route ahead, because I realized that my sign shows I am driving for MG Awareness, but gives no idea of how many miles I am driving.

So here’s what my back window now looks like …

for a cleareer view of the route and for updates see http://vw4causes.org/mga-route/

… the line shows where I’ve been and the circles ahead show where I am going. Almost 2,500 miles so far as I said already!  And various breakdowns, too!!!!

Please spread the word to help us in this mission to raise awareness for MG, a little known auto-immune disease, by sharing these links to:

THANK YOU, THANK YOU and THANK YOU

and PLEASE make a comment below if you read this 🙂

Public education and promoting our cause

On Friday, October 14th, I was at the Methodist Church in my hometown of Provincetown, Cape Cod, talking to visitors during Women’s Week about MG (Myasthenia Gravis) and my cross country drive in The YesWeCan CamperVan. 

Then on Saturday, 15th, Marilyn from the Massachusetts chapter of the MG Foundation came down to help me and set up an information table at my local Stop & Shop supermarket in town.

Here you can also see my Hippo ‘MG’ who has the classic droopy eyelids seen in MG … 

We enjoyed many wonderful conversations and heard from visitors about three family members with MG on Cape Cod. That’s an amazingly high incidence of MG and much higher than is normally reported.

Thanks to Stop & Shop for the space and to our local newspaper, the Provincetown Banner, for the write up on MG and for announcing where we’d be located. One man on vacation from Connecticut saw the newspaper story about my Mum having MG for over 50 years and he came along to meet me because his mother has MG, too.

The outcome of the day was that four MG sufferers now know about the MGFA regional chapters and support groups, and hopefully can find support from connecting with others with MG.

The best laid plans …..

mmmm, there’s lots of planning for this road trip, not only the route I’d like to take but the best route to meet MG patients and supporting organizations with whom I have increasing contact,  VW clubs and their members, and Facebook friends of my classic VW bus, The YesWeCan CamperVan who have invited me to drop in.

When I drove across country in 2010 I purposefully did not plan a route or schedule, because I wanted to let go of control and trust in God to lead me on a journey that would open my eyes, my mind and my heart to new learnings. It turned out to be one of the most marvellous experiences of my life.

It was also that experience that led me to plan this road trip, because when I discovered how much my VW creates opportunities to meet and talk to new people, I started to think about how to use those opportunities for a purpose. And now with this road trip, the purpose is to draw attention to Myasthenia Gravis and educate the public about this little known disease.

However what is different this time, is that not planning is not an option. In other words, to enlist others help in spreading the word, I need to plan ahead and publish a route plan with timings. That needs to be in place in order to request others to help organize meetings or events ahead of time.  And as I get more into the detailed planning I begin to realize that this is creating some anxiety within and in turn I start to wonder if I can really make this happen. What if something happens on the trip and I need to change the schedule; I can’t disrupt others’ schedules or change plans if they have organized an event to help; these are just a few of the thoughts going through my mind now and again.

Also I am beginning to feel some of the pressure from the expectations I have placed upon myself. Without the decades of experience of having a mother with Myasthenia Gravis and the years of experience in medical education, I would not have the ability to talk to both patients and doctors and nurses about this disease. And without social media, like this blog and Facebook and Twitter, I would not have been able to reach people whom I’ve yet to meet face to face and ask them to start spreading the word MG. But with social media also goes the expectation that I will write and post messages each day that I am on the road.

So I have certain expectations about how much I must achieve. And with all the driving and the cost of travelling over 6000 miles, I need to make sure I make the most of every mile. What is keeping me awake right now is how best to organize my trip so that I can make the most of this opportunity to spread the word about MG.

How can I do the best job I can do? How can I create interaction with others now at this planning stage before I set off on this 6500 mile drive to plan some newsworthy events? How can I enlist others help to spread the word, to contact their local newspapers, radio and TV stations about my arrival in their town to highlight a disease that most have never heard about? Will anyone be interested really? And will my VW keep going and my knee hold out?

Ah, for those of you who think that driving across country is easy peasy or you wish you were doing such a trip, perhaps you can send me some comments and tell me to quit these ramblings of mine and once more trust that all will be fine.

Could this be our route for “MG Awareness” road trip?

CLICK HERE for larger map http://mapq.st/nKlW9W

I guessed that if I did a zigzag route it would be about 6000 miles to Portland, and this shows around 6200 (and there’s more places to add in California yet).

This is the first draft of my route, so there’s time to ask us to call into see you. And/or if you are close to any of these cities or anywhere close to the route and you would be happy to see me and The YesWeCan CamperVan, please comment below so I know!!
Thank you and Cheers!

Possible sponsor for our road trip across America this fall??

What do you think …. Would the bright orange VW buses seen in the fun video below, look good as a logo on the side of The YesWeCan CamperVan?

I think they’d look great and I love cheddar cheese, too! Tillamook is the nearest I can find to my favorite English mature cheddar.

So if you like Tillamook Cheese AND you’d like to support our road trip for MG awareness, make a comment on my VW’s Facebook page about how great their cheese is and about The YesWeCan CamperVan‘s drive to put MG on the map. We would love a sponsor whose business we love!

Example comment 1:
Hi, have you heard about the 1971 VW, @The YesWeCan CamperVan, driving from Cape Cod on the east coast, all the way to Oregon to taste your cheeses? Their road trip is for an important Cause:  https://yeswecanjourney.wordpress.com

Example comment 2:
Just imagine, you could be one of their sponsors … and your bright orange VW bus and cheese bar logos would look sooooo good on the side of their cream and gold 1971 bus!!! 

Facebook fan photo of Tillamook baby VW bus, by Mignonne Gardner

Tillamook's tasty natural products include cheeses and ice creams!

We’re driving across America for ‘MG Awareness’ and we need a sponsor, one just like Tillamook, whose business we admire!

Carole and her 1971 VW bus "The YesWeCan CamperVan', which she bought in Oregon, seen here in Cape Cod