Been A While….

Jeeez, has it been this long?  I pretty much put this away, feeling that I’d said all that was in me about this subject.  Rearview mirror and all.  Still, I owe it to this space, which was such a godsend for me, to throw in an update.  First off, over ten thousand hits?  Seriously?  Unbelievable.  I don’t know if all of my rantings and ravings were of any help to anybody, but if so, great.

How am I nowadays?  Excellent!  Happier than I have any right to claim.  Been sober for well over two years.  I heartily recommend putting recreational drugs and alcohol away to fight this disease.  I think that was huge in my case.  My body needed every advantage possible to regenerate, as well as my spirit.

The GBS is still alive and well inside of me.  Never did get back to my pre-disease self.  I’d say I’m still about 50% numb, especially in the arms, hands and legs.  But after these years, I’m used to it now, and pretty much fully functional.  Made peace with it all, ya know?  When I stopped being angry with it, and came to acceptance, well, that’s when things became much, much better.

My blessings are vast.  I have the most wonderful gal.  I’m now playing lead guitar in a band (never thought that would happen!).  Being numb doesn’t mean being dead.  I spend my days working out in this beautiful desert, surrounded by amazing mountains and critters.  The air is clean, clear and fresh.  I think that has helped a lot as well.

When I first got GBS back in the beginning of 2009, I figured it was just about all over for me.  I had it worse than many, and not as bad as some.  Still, I went from completely healthy to an invalid in almost the blink of an eye.  That is pretty much a familiar story to those of you who have it.  The ordeal as been hellish.  You know that as well.  But you must never give up, not once, ever.  You must do the next step, and the next, and the next.

Forget the past.  If you are like me, you will never be the same again.  But it can be very, very good.  Persevere!  Never quit!  Get back what you can and do something with it.  That is victory in my book.

I send you my heartfelt wishes and blessings, that each and every one of you will Be Well.

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Nasty-gram.

Hello, everybody!

I’ve been writing on this blog on and off for three years, and I finally got my first real good hate mail!

The person who wrote it addressed it as “Someone in my Past”.  Oooohhhh. Mysterious.

In essence, the person said that I deserved having GBS and all that came with it.

I mean……really?  C’mon.  Of course, there was only a bogus e-mail address.  I understand very few nasty grams come with a valid return address.  Something about a physical malady in which the spine is missing.

Anyway, it was a lot of fun, so thanks!  I sincerely send to you much love and light, along with my heartiest wishes that you learn to mature as a human being.

One last thing:  I am having the best time of my life, so if that’s what you mean by “what goes around, comes around”, I’m all in!

Frustrations to Fortitude.

Hello, everybody!  It’s been quite some time since I last posted, which I will attempt to explain in a moment.

Right now I would like to send to you my fondest hopes that you are well.

So, hmmmm.  Last time I posted was 10 months ago.  It’s been intentional.  There has been much to be done, not talked about.  As you might have noticed, the last posts I had,  leading up to my absence, were getting more and more irrational, angry and denigrating.

Who was I so angry at?  Well, ME, of course, but it was easier to fling my anger out to others, as opposed to seeing what was really going on inside me.

Last May, I was at my bottom.  I had terrible insomnia, everything hurt, and more than anything else, I didn’t want to be alive anymore.  Not good.  I didn’t like anyone or anything.  I had convinced myself that all was hopeless.

Well, for me I had two choices.  Indulge in the harshest form of self-criticism (suicide), or go and get some help.  Since I am not writing this from the Great Beyond, you can figure out that I opted for Plan B.

I checked myself into a Psych Hospital nearby.  Best thing I could have done.  They helped me overcome my inability to sleep, started me on some anti-depressants, and we spent a lot of time talking and trying to make sense of who I was then.

I’m 57, and they put me in with the Geriatrics!  These were folks who had all kinds of REAL insanity going on!  I realized looking at them, that I most certainly didn’t want to BE one of them.  They scared any real crazy right out of me!

I got out after a number of days and found myself sitting out on the back patio, soaking up the fine New Mexican air, but feeling absolutely empty inside.  Nothing.

Well, TL was glad I was back, and so were the dogs.  Especially Tripp, the 3 legged wonder Boxer.  He was running all around, loving on me and doing his crazy dance that he does so well.

I started watching him more closely than I had before.  Here he was, missing one leg, and he was indulging in the complete abandon of unrestrained joy!  He didn’t care one bit about his condition.  It never even occurred to him that he had one!  It was simply his natural state to take what life had to offer and enjoy himself thoroughly!

Damn, I said as it dawned upon me, perhaps I could allow myself the opportunity to rebuild myself, using the simple lessons and intelligence of a three-legged dog.

I felt like I was starting from scratch.  Not such a bad thing.  First, I had to forgive myself of the past me, and get on with being who I would now choose to be.  So I did.

I realized a couple of things.  First, I had no stable spiritual foundation at that time, and I was allowing myself to be a slave to my own mental thoughts, none of them very helpful.  They would just run wild, and I would be manipulated by  them.  Ugh.

That had to change, pronto.  I went back to my old mentor, Ernest Holmes, with his book The Science of Mind, which I heartily recommend to any and all.  In my reading, I remembered that I could choose to either be the master of my own thoughts, or continue in the illusion of powerlessness.  It is done unto you as you believe.

I chose being mindful of my thinking, to deliberately decide what I would mentally own and believe, and to use my mind intentionally.  Some might call what I was doing affirmations, but based upon my spiritual understandings of my mental intelligence, they could probably be described  as “self-talk” on steroids.

My favorite self thought is, “I am exactly what I DECIDE I am.”

Of course, like all things, it took some dedicated time to create a fruitful subconscious base for this. To become automatic behavior.  But, it does happen.  I am testament to that.  Please remember that I am not a religious man, but I do possess an ironclad belief and faith in God, of All That Is.

So, there were things to do.  Physical things.  Since contracting GBS, I had put on 50 unwanted, hideous pounds of useless blob.  I did “spiritual” dieting, which basically means no dieting at all.  Just changes in my beliefs about me, food and weight.  I’ve lost all of that weight now.

Then, I decided that I needed to make my body the strongest that it would be.  I didn’t have any money to use a fitness center, but God provided, along with the State of New Mexico, and I began using the gym 3 days a week.  Been doing that for 5 months now, not missing a day.  I don’t go to some fancy place.  It’s one of those 24 hour places where you get an entrance key, and all the machines and weights are inside waiting for you.  I intelligently devised an exercise plan where I didn’t have to rely on standing up, as balance can continue to be a bit “iffy”, so my plan consists of floor work, and sitting machines.

Though I still have GBS residue, I am definitely the strongest and most in shape that I have EVER been in.  I have abs!  I have guns!  Whoo-hoo!  And, I still continue, three times a week.  I have no “end point”.  It is all simply a wonderful ongoing experience.

As far as my GBS is concerned, yes, it is still there.  None of the numbness has subsided, and dexterity can still be an issue.  Still don’t think I can stand on my feet for LONG periods of time yet, but it will come eventually.

What I have changed is how I relate to it.  It used to be that it was my identity!  That was incorrect thinking for me.  What it is now, is a minor nuisance which I can deal with and operate around.  I have no more pain, I sleep wonderfully, and I have a personality which I am excited to be, each and every day.  And it’s all REAL, I don’t have to TRY.

Kudos to my beloved angel, TL.  With her love and patience, I have been able to become the person I am now.

To each of you, I hope that your journey brings you to your place of victory and satisfaction.  I feel that way today, but must also tend my mental garden constantly so that I can expect it to be so tomorrow. Also, to each of you, if I can be of any assistance to you, please don’t hesitate to get in touch.  Much love, and enjoy yourselves.

Perspective.

Today, I grieve for those who suffer the death and devastation which has occurred  in my beloved South.  I am ashamed at my petty tirades and foolishness.

Each day, far worse is happening to others than befalls me.

This too, shall pass.

Hello, friends.

The other day, I was reading a post that struck me.  A woman was feeling very low concerning the fact that one of her friends, who she had invested her emotions in deeply, had seemed to move on, and wanted nothing more to do with her.  Had, in fact,  shunned her.  Her response was to feel devastated and forlorn.

I’ve thought about that for a number of days now, felt it deeply, mulled it over, and decided to write about it at this time.

We live in transient times.  People flow in and out of our lives with great ease.  Almost too easily.  Lack of solid community can make us callous and uncaring.

I have learned, throughout my ordeal with GBS, that it is a great mistake, at least for me, to put too much stake in what I thought were friendships.

Before I contracted GBS, I thought I had a great many friends.  I mean, really, really great friends.  We hung out all the time, did all kinds of activities together.  We  shared our secrets with each other, stayed up late into the night to hash out our life problems, played Poker or Cribbage, and so on and so forth.

I had one, who I thought was particularly close,  who I put up at my place for a number of months, at no charge, and was happy to do it.   Scotsmen can hie to the Savannah.  Another, who I have known since the ’70’s,  is now no more than a wisp of a memory.  He disappeared so fast, he left skid marks.

Well, he took a Russian Mail-Order Bride, so that must explain everything.  One must never stand in the way of Glasnost.

I look around.  It’s amazing!

Two years with this thing, and guess what?  By and large, they are all gone.  Of the meager few that are left, if I don’t initiate contact with them, I never hear from them at all.  This, from people I have known for decades.

It’s dismal, and I’m about done.  Too much one-way effort.

I have had to think on this phenomenon long and hard to make some sense of it.

I know they liked me.  I’m a pretty smart cookie, and I believe I would know if they were false or not.  They weren’t. I’m absolutely sure of that.  So, what is it that makes people hit the road like they do?  Why do people bail so easily?

I try to minimize the fact that GBS had anything to do with it.  But, it’s hard, ya know?  I mean, if I were still healthy, and didn’t have this, and was still living in Atlanta, I think most of them would still be around.  I would still think they were my friends.  However, such is not the case.  Life turns can really be an eye-opener.

The whole thing makes me take stock.  It might make you want to take stock too.  How many of your acquaintances, or friends, have you lost during your ordeal?  Who has disappeared?  Who has stayed?  It’s quite a thing to contemplate.  How many do you have to initiate with, just to have them respond back to you?  How many others have split for the coast?

I will admit, I’m a bit jaded by the whole thing.  I mean, even my family pretty much ignore me now, though I can’t for the life of me figure out what I did wrong by them,  except try to cope with this thing the best I can.  Not a one of them has ever been disabled, but they sure do have their opinions about who I should be, and how I should conduct myself.    I don’t live my life to their satisfaction.

Suffice it to say, after my Mom died, they endured me until I was forced to find new lodgings, and then they could finally wash their hands of me.

A little background:  After I got GBS, my Mom was adamant that I come and stay with her and heal, even though some of my other family members were against it.  If it wasn’t for my deceased Mom’s adamant stance, they would have been fine and dandy to ignore my GBS troubles in Atlanta from the outset, and let me live on the street.  One of my Sisters even suggested that that is where I belonged.

I have three Sisters.  One has stood up for me, until recently.   Two could not really care less.  Plain and simple, but true.

I have one Sister, who’s husband is on the National Board for MS.  I asked him if he could do anything for us with GBS.  He said, well no, we don’t have enough numbers.

We suck as a demographic.

My Dad had Polio when we all grew up, and by and large, he didn’t handle his disability very well at all.  Maybe I’m a reminder of all of that, with my sibs.  Whatever.

I asked my old Pool League members if they would please pass the hat for me.  I’d been with them for over a decade.  Any idea how degrading it is to even have to ask?

I mean, I’ve only been able to earn $350 in the last TWO YEARS!  Know what I heard back?  Nothing.  Hello?  Please take a moment to ponder what I just wrote.  Two years.  $350.00.  How would you do with that kind of income?  Would you be homeless, or worse?  Perhaps dead?  I constantly live on the edge, knowing full well that if I were left alone, I probably would not last a month.

I’ve received nothing from the Government.  I don’t qualify. I don’t have an appropriate Disease.  Oh, they have Maple Syrup Disease, but nothing for us who’s nerves have been ripped out from under us, usually in a matter of days, with no sign of getting them back for years at a time.

I’ve received nothing, except the generosity of one loving woman on this planet, who lets me stay at her house, and sees to it that I have a place to sleep and food to eat;  a place to bathe and feel safe, and who has shown me an amazing amount of unconditional caring, in spite of the fact that I am, indeed, a pain in the ass, and a considerable expense to her.  A Saint.

I feel like Russell Crowe, in Cinderella Man, who stands in front of people and says, “You all know me.  If I had any place else to go, I wouldn’t be here”.  However, in that movie, some folks were moved to help, and get his life recharged.   In my real life movie, everyone is deaf, and could not give a shit.

It is a sad state of affairs, but it is what it is.  I would be a fool if I thought I could see into the hearts of others.

However, this is not what I am wanting to dwell on in this post, though it needed saying, and I’ve gone on about it for a while.

What I want to state is the spiritual nature of who we are and what we are connected to.

I am a huge believer in the concepts espoused in the Science of Mind, written so eloquently by Ernest Holmes.  Please, do not confuse this with Scientology.  They have nothing whatsoever in common.

One of the things that he speaks of, is that All Things Shall Come and Go, but a Person’s Relationship with God is the Only Thing that is Truly Eternal.  It is in the Nature of Things that others shall move into and out of our lives.  But, in the long-run, only God will be there as our  Constant Companion, as a part of our own Being, in an Everlasting Way.  The One is not separate from the Me, or the You.   Both, are One.

Might not be a bad idea to make friends with the Big Kahuna, and figure out what the deal is, ya think?

So it is Good to be of good cheer, knowing that there is always One who will never leave You, never abandon You, and will always live within You to be the voice that propels You to go and seek Your ever-increasing Joy and Opportunity, in all it’s Manifest Forms.

To give You advice, and encouragement.  To seek Goodness and Happiness, to strive to overcome, to enjoy the splendor of the day and the night.  To hear the beauty in another person’s voice, the delicious taste of another person’s lips, the sweet smell of their body.

To seek and experience the joyousness that can always be found,  if we but look and pay attention.

But also to not forget  that all this shall pass, as it must, so don’t put too much weight on it staying around.  It all changes in a New York Minute.

Also, remember:  There are always more fine adventures in the offing, and that is a good thing, too.  I would be stupifingly bored out of my socks if things were stagnant, and the horizon were not dimmed on purpose.

As Holmes so wonderfully stated:  Either God is Everything, or God is Nothing.  I choose the Everything approach.  It’s my choice, and I like that option the Best.

I have enjoyed my friends.  They have been marvelous.  I wish them well, and encourage them on their own adventures.  They might also have their own issues with people coming and going.  How do I know?

It is the way of things, I think, and I hope we all become okay with that.  It’s hard, but I’m learning.

Be Well.

News and Notes.

Hey friends.

As of this evening, the GBS Survivors! Facebook Page is developing very nicely.  Many, many good postings.  There are approximately 70 subscribers to it, and that is a wonderful thing.  I hope more and more of them will move from simply viewing. to expressing what’s up with them, but all in good time.  It’s been accelerating at a goodly pace.  Thanks again, gals, for getting it up and running.

Donovan (see my links section) has put together a survey to gather information, which may develop into a book to give insight from those of us who have GBS, and it may turn out to be really, really useful for those who are soon to get it.  Please participate.  Donovan, good to see you stepping up to the plate.  You da Man!

When I first came down with GBS, a little over two years ago, there was not much available, insofar as decent Blogs and such, only the dried-up Medical sites which offered, well, nothing really.  I’m so glad that it’s changing now.

When I first started Blogging, I think I was about the only person doing it on a regular (for me) basis.  Now, lots of friends are, and that is so wonderful.  Every voice added is a voice counted.  Every story expressed adds to our collective voice, and that’s a great thing.  Who knows, researchers might just read what we have to say, and connect the dots.  Here’s hoping.

Yesterday, I had almost 75 hits on my Blog.  I thank you all.  What it tells me is that it’s really not about me so much, but about others who want and need to know what is going on in their own lives with GBS.  So, we must continue and build.  I’m up to about 4,700 hits, and that tells me that there is a great need to know.  A hunger to know.  When I first started posting, I never “networked” it out, it just came up on Google.  I don’t know enough about all this stuff to market myself.  I never thought so many would want to read this, really.  I never did it for that.  But, I would be lying if I said that I don’t enjoy watching the numbers climb.  I can be gabby, so the responses keep me going.

The gals reminded me that May is GBS Awareness Month.  We should not let this opportunity pass.  I’ve written to CNN, FOX, NBC, ABC, CBS and PBS to remind them of this fact, and to request that they do stories on our “Syndrome”.

I would ask you to take some time and write to them as well, asking for a story.   These newscasts operate much like politicians.  If they get enough voices, they will take action.  If you would all take the time to write, they will do stories about us.  Of that I am certain.  Contact your local TV Stations, and offer to be interviewed!  You could be great, and think of the YouTube Video build-ups we could amass!  One of you could go viral!

In the next few days, I will post on here an Editorial I am writing for my local papers, so that they might include it during May.  Please, feel free to copy/paste it, if you wish, and send it along to your local papers, if you feel it speaks to what you would like people to know.  Use your own name with it.  I don’t care.  The message is what counts.  However, I would be pleased to know if you did, and what kind of outcome you had.

Or, better yet, write your own.  Articulate what is going on with you, and bring the necessary awareness to fruition.  Others around us are going to get it.  We must do what we can.

Well, that’s about it for tonight.  Some great folks have passed along good info from the Facebook site, which I will get into later.  I really, really encourage you to go there, whether you have GBS or not, and become a part of our collective.

As for me, personally, well I’m hanging in there.  My job things fell through, I’m still broke as hell, and my body has come to a standstill, for some time now, as far as nerve rejuvenation is concerned.  But I am of good spirit.  Like Tom Hanks said in “Castaway”, you never what the tide will bring in.  I’ve never been so indigent, ever.  But, who knows, maybe one of the bazillions of resumes I’ve sent out will give me a call.  Hope springs Eternal.

Be Well.

Milestones.

Hey friends.

Contrary to my ornery last post,  I want to take a few moments to tell you that, all in all, life is indeed good.

I’m sitting here thinking of things:  I have a good woman, I’m healing (slowly), and I really don’t have much to complain about.

Just got off of IM, with my buddy, Michael.  He was the first one to contact me when I started my Blog, and he also has the same full name as my very first, best friend growing up.

Coincidence?  I don’t believe in that.  Accident?  Nope.  Though I give God a rough time, He usually does what he does pretty well.  I’ll take my bumps in the road, and pray that it all means something in the long run.

So, we were talking.  I hope you don’t mind me sharing, Michael.  We were speaking about falling down.  I told him how liberating it was the first time I realized I could fall down, and get back up without help.  He said that that had just happened to him too.  Small victories are joyous, indeed.

On Saturday, I’m going out with the US Border Patrol, to write a story about them, and how they handle their job around the Rio Grande in Texas and rural New Mexico.   I can’t believe that I am able to do this, when not so long ago I could barely stand.

So, I will take today, and rejoice.  If you have an uplifting message, send it along so I can post it.  We need to embrace the good stuff that is going on, and prop each other up.  Just sayin’….

Be Well.