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Faith.

Hello friends.

Well, I’m about to touch upon something which I am positive will rile  some of you, and get your feathers all in a commotion.  Common Sense tells me to delete this right now, but, I’ve never been accused of using too much of that resource.

I was recently promised a fine job working for a newspaper.  Well, that all crumbled like the face of the Sphinx, albeit a lot sooner.  Anyway, the publisher then interviewed me for a possible position helping to run a “Faith” Magazine.

Not a casual, mellow and liberal Unitarian sort of publication, but a sound, clear,  rational bible-thumping one, which would be inclusive of everybody, providing they all thought alike.  I said I’d think about it, but I left so fast that I believe I left skid-marks with my sneakers on the way out to the car.

After an  agonizing and heartfelt conversation with the All-Mighty, which took basically the 45 minutes until I got into the driveway, and was once again one-sided,  I determined that I had to refuse the honor.  I am not worthy of such a position.

For one thing, I never majored in Bible verse Trivia.  I always found the print too small to fully comprehend.  Why do they always make the print so small?  They have a captive audience!  They can make the book as big as they want.

In the beginning, I was so confused by all the Begats that I could not go on any further.  That’s just me.  There’s just too many players in the narrative, and I can’t keep up with them all.

Then, sorry to say, my normal exposure to the Good Book was one sitting in a hotel desk drawer.  Right next to the Room Service Menu.  On most occasions, I was more consumed with feeding my most base mortal needs before the kitchen closed up for the night.  Then, by the time I figured out the ways of the remote control, I was too tired to review my lack of Salvation.

However, the front desks usually had a reliable Wake-Up Call, so that is something.

For one thing, I’m an unyielding smart-ass, and by nature, irreverent.  Those two qualities alone would never bode well for such an undertaking.  And those are only the main ones.  I have scores of lesser sordid traits, which would either qualify me for a hanging, or a run for Congress.

So, in the few days since, I have been grappling with the whole idea of Faith.

I thought I would share some stuff with you, and probably make you so mad you won’t show up here again.  Such is who I am.

First, I like to fling my Faith out into the heavens, indeed, to the farthest nebulae.  It costs me nothing, and I like the grandeur of it.

That there is a Supreme something, and that, by God, it’s got one hell of a sense of humor.  How else can you explain all that goes on around us?  It’s dark humor, to be sure, sort of like Pulp Fiction, but hilarious nevertheless.

On the subject of Christ?  Well, my jury is still sequestered and in dead-lock.  I can only say that if my creditors were gone as long as the Messiah has been, I would cease to worry about a collection agency coming to hound me.  He might be out in the Galaxies, doing his thing.  But, I learned something in Sales 101.  It is imperative that you keep in touch with your customers on a timely basis.

I use my Faith sparingly.  I once had a girlfriend named Faith, and so I had faith in Faith, but she ended up skipping town, so there you have it.

I mostly use my Faith in small ways, so as not to use it all up.  I don’t know if I have a set quantity, but I don’t want to take any chances.

What I really have is Faith in the Now, that things are as they are, and that they can get better.  I’m not sure how it will all happen, but that’s just a matter of, well, you know.

Be Well.

Burden.

Hey, friends.

A few weeks ago, I was scrolling through Google concerning issues with Guillain-Barre, which is a fancy French word for HELL.

The mucky-mucks who write about it seem to think that for most of us,  this “Syndrome”  only lasts for between 4 months to a year before full recovery sets in.

Anybody know someone who is that fortunate?  I certainly don’t.  I’m in touch with lots of victims of this insidious illness, and not a one of them can make that claim.  Most of my fellow compatriots attest to the fact that the symptoms go on for years.  What planet are the experts living on?

Which brings me to my point:  Not only is GBS a horrible thing to the person who contracts it, but it’s also a huge burden upon those we are associated with.  It’s like a bad in-law:  It never goes away!

I have found that those close to me are basically over it.  They want me well, but they have had enough of helping me in my disability.  I am an albatross.  They would rather I just go away, so as not to place myself upon them for help.

I get it.  I mean, it’s been over two years!  I still can’t stand up for long periods of time.  I’m still not normal.  My legs are still numb from the groin down.  I still worry about falling flat on my face.  My left hand still won’t do what my right hand is capable of.  And on, and on.  I live it, day in and day out, but they have no real clue.  They would prefer not to know.

Truth be told, I would almost rather have a terminal disease, and go through the “big blue tunnel”, as Kurt Vonnegut coined it.  At least I would have an understanding of some closure.  This damned thing is a mystery.  Will it go away, or do I have to go on with it til the end?  I hate the not knowing.

But, that’s my problem.  Good Samaritans, whether family or friends, are tired of me, with only one notable exception.  Life moves on, and since I can not move as fast as them, I’m like the guy you see in the rear-view mirror, getting farther and farther from sight, until I’m not there anymore.

I hold no grudge.  It is a by-product of long term disability.  I just want those of you who are around me to know that I’m sorry I’m not all better right now, on your timetable,  but I’m doing the best I can.

Be Well.

 

A New Venue.

Hi, friends.

Recently, I found this phenomenal group of people on Facebook, at a Site called, “GBS Survivors!”.

It’s awesome.  On this site, we are really discovering how this Disease  smacks us around, and what we can do to help each other make it better.

It’s amazing, really.  If you Google Guillain-Barre, you get this homogenized crap of what it is, what it does, and blah, blah, blah, blah, blah.  Every medico site sounds the same, and yet is not very relevant to those of us who have it.  We KNOW we have it.  Give us something that we can use!

But, when you attend a site like this, you get the human stories,  the real scoop on how it’s affecting us, and what is going on in the healing process.  Find that on Google?  I don’t think so!  We are a fledgling group, but who knows what can happen here?  It’s always been my passion that we would collect our stories and speak of our lives, and do so with a wonderful voice, a chorus, a powerful choir.  And then this site arrived.  Buddha provides.  Amanda, kudos to you!  Who knows what can be learned by people speaking about how we heal.  I don’t know if anyone is studying that aspect, do you?  At least, not in a very dedicated way.

So, my buds, this site is by Invitation Only.  Write me.  If you have the GBS, or are dealing with someone who has GBS,  or want to know more, you are very welcome.  We would love, LOVE, to have you.

Be Well.

Hi!

As you may have read, I am now living in Las Cruces, New Mexico.  It is an awesome place.  Kind of tough to describe.  On the one hand, it is desert and harsh, but on the other, it is beautiful beyond comparison.  I am told that, except for the city, the outlying areas are pretty much the same as they have been forever.  Being here, I buy that.

So, I would like to tell you a story of this place.

It concerns a site call La Cueva, or The Cave.  Takes about 20 minutes to get there from town.  I’ve attached a couple of pictures of it, which I took while hiking.

During the 1800’s, this place became the home of one of New Mexico’s most interesting, yet obscure historical figures.  His name was Agostini-Justiniani, or “El Ermitano”.  The Hermit.

During his life, he roamed by foot all throughout Europe, Mexico, South America and Cuba.  Somehow, he ended up here in New Mexico, where he briefly took up residence in Mesilla, a town within Las Cruces, before deciding that he was going to live in this particular cave.

The residents feared for his safety, as that area by the cave is extremely harsh, barren and infested with all manner of dangerous wild-life.  He told them not to worry.  He would light a large fire every Friday night, to let them know he was okay, and say prayers for them each day.   But he also said, “If you do not see the fire, you will know I have been killed”.

Well, one Friday night, the people did not see the fire, and so they went to the cave to check on him.  They found him lying dead, on top of his crucifix with a knife in his back.

It is said that he had medicinal powers, and was often sought out for healing.  In fact, he once lived in Las Vegas, New Mexico, and to this day they still have an annual festival for him during Easter, where they make rosaries of native plants in his memory.

Well, anyway, it’s just trivia, but I thought you might like it.  Oh, and the town of Mesilla?  They once locked up Billy The Kid there, and convicted him of murder and was sentenced to hang, but he got away.

TA-DAH!

Random Questions.

Hello, friends.

I have a few random questions running around inside my cranium.  Perhaps you can help me out with some answers.

Why is a “Syndrome” deemed less severe than a “Disease”?

Why do people sometimes tut-tut about my circumstances, and then refer to Guillain-Barre Syndrome as a “pretty” name, like I should be happy to have it?  Perhaps we can market it as the new “trendy” thing?

Why do the Medicos state that people with GBS normally heal between 4 months to one year?  Do you know anyone who has?

Why has my remission stopped, dead in it’s tracks, for at least the past six months?

Obama has a relative, not a citizen of this country, who got GBS while she was here illegally.  She now has Disability payments, and housing.  So, why won’t the Social Security Administration even give me the time of day?  Isn’t there something wrong with this picture?  I mean, I’ve paid in all of my life. Was it something I said?  Most likely.  I’m a pain in the backside.

Why do I have these incredibly sharp electrical impulses that run up and down my legs every once in a while?  Sometimes they last for days, but nothing seems to get better.  What’s up with that?  Do you have them?

How is it that companies can by-pass the Disability Act, by requiring you to be able to “stand on your feet for long periods of time”?

Why have so many old friends opted out from me, just because I’m not the person I once was?  Most have left so fast, I swear they left skid-marks.

Why is it that so many of us have this damned thing, and yet, it’s invisible to the general public?

I am the luckiest man on the planet, because I have one person who really and truly stands up for me, and has my back, no matter what.  Do you have one?  Who are your unsung Heroes?

We need a new name for our malady.  How about “SUC” Disease?  Stands for “Swept Under the Carpet”?

Why do you even bother to read my Blog?  What is here for you?  What do I provide for you?

Oh, I have way more questions, but I’ll save some for later.  Tonight, I will think of these things, but still won’t have any answers.  If you have GBS, like I do, you spend considerable time pondering questions that also have no answers.  It is what it is, and we are who we are.

You are my brothers and sisters.  Please, Be Well.

Oh, and if you have questions, shout them out to me, and I will post them.  Since we are an ignored bunch of people, perhaps we can figure some of this stuff out ourselves.

Gratitude

Hello friends.

I was just getting ready to go to sleep, when I noticed that I now have over 3,800 “hits” on my site.   I’m continually amazed.

I am merely an ordinary man, who happens to have this extraordinary Disease.

When I first started writing this, it was just for me.  By nature, I’m a very private person, but I desperately needed an outlet to figure out what I was feeling.  It has helped me tremendously, in that regard.

However, I never really thought anybody else would find it worthwhile or interesting.

So, thank you all for coming along on my journey.  It warms me that you care enough to click.

Be Well.

A Change of Heart.

Hello friends.

I recently posted a Blog Entry, entitled Does Anybody Even Give A Damn, in which I was angry, spiteful and sullen.  I just deleted it.

There is no place for that type of vitriol.  Tonight, I am celebrating my two year Anniversary with GBS.  Tonight, I am paying tribute to how far I have come since that fateful night of onset, 760 days ago.  Tonight, above all others, I choose to count my blessings.

I wish to give thanks to those who have been there for me.  I mean, really been there!  To Linda and Bill, to Barbara and Tom, to Susan and Fred, to both Johns, to Billy and Jane, to my late Mother, and last but certainly not least, to Terri-Lyn.  I am so indebted to each and every one of you!  Each of you are stand-up human beings of the First Order.  To put up with me, in spite of me, speaks volumes for your character.

In that last, now deleted Blog, I was pissed off at all of you out there for not helping me bring GBS the national attention which it deserves.  I still wish you would help, but, in retrospect I can understand that this thing is a SOB each and every day, and most of the time, it’s all one can do to just get by.  I ache for you all, cause if you were like me, one day you had a perfectly fine, functioning body, and then all of a sudden it all just went to hell.  And so far, it hasn’t come back.

It’s catastrophic on all the physical, emotional and mental levels.  I mean, how can you go out and live life normal one day, and then BAM!, you are incapacitated for months and perhaps years to come.  Maybe forever.  Every freaking thing changes.  It feels like it will never, ever get back to being what it was.  It won’t, either, cause all the time in recovery makes us different from who we were for the rest of our lives.  It changes all the people around us.  It changes everything.

Having this makes me so much more attuned to what our wounded Vets go through.  I do not wish to equate our disease with what they have sacrificed in the line of duty.  But, we are similar, in that our world has forever changed, and the road ahead is new and, indeed, frightening.  Like them, we may never be “normal” again, and will have to adjust to find satisfaction and fulfillment in who we are now.  Like them, we shall have to conquer our fears of limitation and lack, and fight fiercely to retain meaning in who we are, and dream and strive so that we can thrive.

I apologize if this Blog of mine is so “me” focused.  I shall endevour to evolve, and open it up to the bigger issues we all face.  I will also continue to badger everybody I can think of to help start up a foundation to help those of us with this, who don’t have the financial means to get the care they need.  Early onset care is critical, in my estimation, so that advancement can begin before atrophy takes it’s toll.

I also do wish you would write me with your stories, so I can post them and you can share with others what you are going through.  It seems people really feel comforted when they know they are not alone.  That is as it should be.

I hope you will continue to follow my Blog.  I shall certainly try to do better in the future.

Be Well.