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?  🙂

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Appreciations …. on Valentine’s Day

I wish I could find a way to add a ‘subscribe button’ to my blog on the website ‘Vehicles Working for Causes’ but I’ve spent hours trying and failed … so please excuse me for copying today’s post here if you read both blogs …. but this message is too important to miss, especially on a day like today:

FROM http://vw4causes.org/2012/02/14/appreciations-on-valentines-day/

Many times on my drive for MG Awareness, I have met patients who have inspired me and made me wonder how they keep so positive in spite of all the health challenges they face each and every day.

So today, when I saw this post on an MG patients’ private Facebook group, I just had to share it with you right away …

“I have to laugh at my own illnesses. I have been diagnosed with very serious things, and if I didn’t find the humor, I’d be in the nut house. Pulmonary Hypertension, Stage 3 Kidney disease, MG, Raynauds, Narcolepsy, Prednisone induced diabetes, Dysautonomia, and I have a spinal cord injury. I’ve been through the mill, but The Lord has brought me through it all, one step at a time, and with lots of humor. I’m on O2, just about 24/7 as well. Have to have humor, and don’t sweat the small stuff. 🙂 “

So if you are HEALTHY and you find yourself thinking about how unfortunate you are, or how life is hard, or why on Valentine’s day you have no-one special in your life, or if you are thinking or feeling anything negative in any way , PLEASE STOP AND REALIZE HOW LUCKY YOU ARE.
I KNOW I AM !

And maybe you can also spare a thought for the lady who wrote the post above  …… and if you’d like to support our drive for MG Awareness to get patients noticed, their medical costs reimbursed, research funded and a cure found …. please write below or take a look under the Support our cause section of this website.

THANK YOU.

Medical terms:
MG = Myasthenia gravis is an autoimmune neuromuscular disease leading to fluctuating muscle weakness and fatiguability. It is an autoimmune disorder, in which weakness is caused by circulating antibodies that block acetylcholine receptors at the postsynaptic neuromuscular junction

Dysautonomia (autonomic dysfunction) is a broad term that describes any disease or malfunction of the autonomic nervous system.

Please comment below or on the original post at Vehicles Working for Causes if you would like to show your appreciation today.
THANK YOU.

Ten years on …

Ten years since September 11th, 2001. When it happened many of us thought it would change our lives forever, help us to remember what is most important in life and treat each other far better as a result, didn’t we?

taken by Carole Brown, Easter 2011

How odd then that during the last decade here in the west, the news has been filled with stories in which greed has prevailed or stories of how very poor we are these days now they we don’t have such big earnings or big homes or the material riches we once had. Stories of con tricks by certain people or certain corporations, criticism of governments and civil unrest, and news of more wars and killings fill the media.

Maybe it’s time to stop today on this tenth anniversary of September 11th and reflect on the best things that have happened in the last ten years and anything we did that brought love and hope into the world.

Please add your reflections and make a comment below to bring some light into this world. Thank you.

taken by Carole Brown, Christmas Day 2010

Hope


MERRY CHRISTMAS

All dressed up for Santa

MERRY CHRISTMAS

Notes on the drive west coast to east June-July 2010

Exactly one year ago today the ‘YesWeCan CamperVan’ and I met in Medford, Oregon. What better time then to publish notes and selected photographs from each of the days that we were on the road between the west and east coasts.

Each day between now and JANUARY the notes will be appearing below; it’s our way of giving a Christmas gift to all the tremendous people we met who made our road trip such a marvellous experience.  Of course, it’s only to two weeks out of the six months we spent touring, so we hope you’ll take a look at our other posts, too!
xx MERRY CHRISTMAS and HAPPY NEW YEAR xx

My journey … 55 years from 31 January 1955 to today …

First THANK YOU to all my friends who sent me cards, emails, and Facebook messages. I have my wish of 55 greetings .. and am still counting.  One very special person to thank is my friend in Massachusetts, Amy, who sent me a care package containing British tea bags! And also FIFTY BIRTHDAY CARDS, each one in its own envelope, each with a heart or animal sticker on the back xxxxx

I also updated my ‘Thanks’ Page on this blog, if you’d like to see the other special people – besides yourself – who have been supporting me on this journey.

I’m off to the Sunday morning service at the Episcopal Church in Willits now. More later …… I know it’s going to be a memorable birthday and I am counting my blessings. Thank you for making it even more special by reading this blog.