Tuesday, September 10, 2013

Thanks for Remembering George

I wish to thank all of you who continue to read and re-read George's blog.  He would have been astounded to learn that his blog continues to inspire and help those of you who also struggle with MS. His writing, for him,was one of the few ways that he could cope with what was happening to him. 

It has been six months since he died.  He left a very sad,large empty space in our lives.  His children are growing, doing all the things kids do in this society, and hopefully will always remember him with love.  He wanted nothing more than for them to be healthy and happy.Someday, when they are adults, they will read what he wrote, and truly understand what a brave, unique father they had.

Life goes on as George said, but not in the same way as when he was with us.  I continue to share my feelings of the world without George. May all of you continue to read his words, and keep his memory alive.

With gratitude for having been his Mom.
I love you George......




Saturday, March 23, 2013


No, the Greek has not returned to give us all a look from the other side.
Instead, he has left a void, huge and unfillable with the trivia of this world. Last night, we went to see a local version of Jesus Christ, Superstar.  I cried through
every song.  Why?  George was" just a man,".  Sound familiar?  But, his suffering and his desire to have this cup taken from him was too familiar in every word of the songs sung in that play. Yes, he was just a man, but he suffered, was rejected by those who before had befriended him, by family that should have enclosed and comforted him and  in the end, his choice was preordained.

I was going to tell you of how MS devoured him.  Of all the terrible symptoms that he endured with a calm spirit, an almost unearthly calmness that was so alien to a doer, a man who got things done impatiently, who never waited until tomorrow.  Well, he got a hard lesson.  He found that there are things you cannot do, no matter what your strength of will or resolve. 

I can continue for many pages, revealing so much about who George was, the man who thought he was very simple, not deep, not a thinker.  His blog and his endurance of the last five years gave us the truth about who he was.  I cannot be more eloquent or profound than he, himself was.

So, I write these words as the last that will be on this blog. As he said, time will pass, life moves on, last years leaves drop, become the mulch for the next spring, and then are forgotten.  He accepted the  flow of life.  He did not accept the injustice of it, or maybe, in the end, he did. 

I will leave it for you the reader, to mull over all that he said, and decide.
After George died, I found the attached picture folded in his wallet.  It speaks volumes of what finally drove him to make his personal choice. 

As his Mother, I will hold him in my heart each day and night, trying to preserve
the memories that I know will fade with time.  I am writing my thoughts on my own blog, Xaidw Speaks.com.  It is dark and sad, and I do not know if it will ever change.  I do know, that for the first two weeks after his death, I could feel him close by.  Now, it is as if he has left, disappeared into the atmosphere, gone completely.

I know we will all move on, whatever that means.  His words, though, have influenced many of you.  You have told me and commented on his blog.  He would have been surprised, but secretly gratified.  After all, he was a simple man.

Sunday, March 3, 2013

The Tipping Point

     Today is the end of a journey. A journey that unless one lived in my body one could not even fathom. Although its not the end most would desire, it is to me. See when I was diagnosed in the year of 2007 I was the first to the front lines, fighting with fury as did Leonitas and the 300 as he pit bulled the Persians at The Hot Gates. But even Leonitas knew when his time had come, and like him so do I. My Papou Andy was a warrior. I have always felt as if I was the mimic of him. A Greek immigrant he lived until his late 90's when he would tell me, "yorgos god dont need me and the devil don't want me!". He like Leonitas was at the end of his journey and after 7 days of starving himself he went to be with my yiyia milly, somewhere up there , as tirelessly he had enough, and as crude as it sounds I will always admire him.
     So my journey. Fourty four years, 39 great, 5 a living hell, as I along with my family and friends have watched with fear the degradation of my body, my physical body. Sure I have heard it a million times ms doesn't define you, but ya know what you can keep that shit, as I lay here after my care taker maneuvered me back and forth wiping and cleaning as I have become individually insufficient. There are individuals that really are amazing, guys like Christopher Reeves, and even my buddy Marc Stecker "kazmo" I call him. They seem to trudge along no matter how shitty things are, using their deficiencies as others admiration. I have also performed this way, but I didn't sign up for that and although I have fought like a crazy madman, I refuse to allow my condition to become to the point where my faculty is in a state of confusion or cognitive and physical deterioration has put me at that complete care of others.
       I am at my tipping point and as I write this from the bed I have slumped in the last 2.5 months days in my parents front room, I declare today the end of my journey. Call it what you would like, declare it as quitting or surrendering, but unless you personally have lived it then shut the hell up, because when you are done reading you will get up and go to the fridge, or jump in you car, neither of which I can do. Don't judge me, I said from day one I would give it hell, but I will be damned if I plan to be the poster boy. My choice. This has been a rough week. Failed baclofen pump relief attempt, staples fresh like spring flowers, no relief and instead two ugly slices in me and magnified weakness and paralysis. Life for me is about washing the truck, cutting the grass, shoveling the snow and at this stage none of these delights may I physically partake.
      Living away from my former bride of what would have been 19 years this week, and separated from living with my four beautiful children since December has been equally devastating, and something I thought my family would never be a product of. I am however, thankful of what a wonderful caring mother she is, and knowing the kids are in the best hands is an immense relief. However, life has taken some crazy turns, and instead of things gelling, they have become unglued. Imagine being in bed incapacitated and as your caretaker is care taking, you are on the phone answering questions from your divorce attorney. Imagine.
      The woman in my life who is the most amazing being is my mother. Through thick and thin, rain and shine, snow and ice she has lifted me both literally and figuratively for a long long time especially when I needed it most. Her love and support truly defines relationships between a mother and son, and I can picture her sitting beneath the maple tree, pretty hazel eyes, long gray hair that she is saving for some darn charity, and a smile at me that reminds me of love and love only, without prejudice. I love you so much.  You deserve piece and treasure from the heavens for what you have done for me.  For my parents I am truly ever so grateful.
     My sisters are both amazing , and as I know they'll be devastated, I want Dana to know I recognized her eight million times she has reached out to me, and usually receiving nothing back just because I'm too damn sick at the time to return the favor. I love you both.
     My boys Niko Charlie and Mikey,I love you more than the world, please respect and admire my good qualities, and show the world yours. Niko, the show must go on, please dedicate this one to me, give it your best ever, and use me as the catalyst that drives this one." Bye bye big "g". Charlie the
great debater will be the countries finest attorney, and Mikey you melt my heart with your authentic love so real and true. Im getting the ranch together.
      My daughter, the princess, Stacia, your face so gorgeous engrained in my brain, the coolest person I have ever known I have loved you since the second you arrived. Butterfly kisses tonight. Dad, fix the damn spinal stenosis, and contrary to what an other has precluded, you know how much I love you, from little league coach to council.
     To Uncle mike I send huge kudos for what you've taught and will continue to teach my son your nephew Mikey. What you have done for him is beyond what I ever dreamt and for this I am indebted to you.
     Once the Spartan Army had been exhausted, the country's reinforcements took over, as the soldiers finished the job so will my predecessors. Life goes on. People move on. They love, live, grieve, and so on. It's like the fall leaves on the ground raked and mulched, ready for next springs growth. Those old leaves will be forgotten about and next season so will the new ones. The fact is they all had their journey, flourished when they could, and fell when it was time. When they emerged they gave it all they had, soaking in the spring rains and the summer sun and taking their fall when they hit the tipping point
     . I have hit the tipping point and all I care to conclude is see ya on the other Side, washing my truck, cutting the grass, and shoveling the snow. This is who i really am and what contents and completes me. Excuse my pride and dignity as it is what defines me.  If I have to expose my anus to one more nurse for impact ion relief or have to go through another straight cath I will puke.  See this as a relief to a proud sufferer as opposed to a defeat...the tipping point!
      There is one gripe I would like to share.  For three weeks I spent post surgery and for the days and months suffering that seemed so endless, is it that difficult for friends  ├ánd love ones past to send a text, a call, a letter?  I don't want to be patronized and I know you can't make your heart feel something you dont but what are we robots?  Are we all just so caught up in our worlds we cannot fathom what spending 24 hrs in bed must be like enough to just say hello I am thinking of you? As far as I am concerned this world is filled with selfishness and hypcrocy.  As well as a whole lot of BULLHIT!

Tuesday, January 1, 2013

MS-The Dinasour In The Room

     Soon after my last post upon return from three weeks in the hospital, I worked diligently daily to provide my core with enough strength to sit upright.  The first move, the toughest by far, was getting out of bed.  Sounds simple right? Notta.  Imagine  lying on top of a gorilla and heaving you both out of a supine position.  Whilst red hot poker sticks are being jabbed into your lumbar.  This is just a smidgen of what my morning entails.  Not including the dignity I have lost to good hearted caretakers, but I was trying to build up this strength for not only obvious reasons, but to be able to withstand a flight to Florida.  My parents have a home in Melbourne, and I go where my "caretaker in a cast goes." Period!  This is the hand that has been dealt and I really haven't a choice other than to play it out.
     Once out of bed and feeling every tortous movement, I was gate belted and assisted to the wheelchair, equipped with the morning icepack and lumbar support, a homemade creation, then wheeled over to the stairs where I would sit backwards while holding onto the stair above and hoist myself up 5 stairs one by one resting on each stair in a sitting position.  Now you're cracking up because who can't simply sit? Me. That's who. This glorious disease has weakened my core to the point I cannot sit unsupported .  The three surgeries provided also much needed additional pain and influence over my condition! Thanks to the generous amount of spasm and spasticity and the failing of oral baclofen it really left no choice to fix this baclofen pump, which by the way will be covered in another blog as I feel Medtronics misrepresents the pump entirely and can be included in "Big Pharma!
     Anyway, on with the story.  Two nights prior to the flight I was shitting bricks.  How can I go to an airport, sit, wait, go through security, sit, wait, go to the terminal, sit, wait, and then get on one of those horrible airline aisle chairs that we lucky handicappers get to ride strapped in like a piece of meat and banged all around, when I can't even sit upright?  Wow that is impossible, as I lay perplexed and pained I received a text from Kim who has been in charge of keeping my hygiene at high standards with a wonderful idea her and my sister conjured up.  Sleeping in a hotel room next to the airport and cruising to the terminal like O.J. did in that Hertz commercial years ago, well not exactly, but the idea could cut about three hours of sitting time out, and leave me just enough for the flight.  I managed by the day of the flight to build up three hours of sitting tolerance. I am not talking about comfortably relaxing on the sofa, I am referring to three hours of digging so deep into the depths of my core and mind over matter compartmentalizing the pain.  It was either get to Florida or be stuck in the house in freezing cold icy weather every day with poor Mom who was on her last nerve.  I wanted to stay because I figured a few more weeks and she would put me out of my misery anyway, as she hates winter more than anyone I have ever known!  The other option was a 24 hour ride in an RV bed.  No thanks!
   So to spare a ton of details lets fast forward to the plane where after taking the shitty ass isle chair and being slung into a seat the 757 taxis back after an hour of boarding.  My calculations tell me I had enough in me to get to Orlando and I will lay in the back of the car to the house.  However, I neglected to factor in the mechanical problem with the left engine that burned two hours of my available three, and forced a deboarding of the plane. Yes once again the black cloud prevails, and my three hours was up.  It was back in the aisle chair and return to the terminal where my only hope was western medicine.  Yup, Vicodin , Valium and the like, until something wonderful should appear, the aisle chair guy and his compadre with news of the availability of another plane, and right away! Oh there is a God I proclaimed, and before you knew it we were on board and on our way to sunny Florida, where the heat intolerance will have me right back in bed! Oh yes there's always a trade off  with MS and its about the lesser of two evils.  At least there is no snow or ice and curb cuts are everywhere allowing wheelchair accessibility.  In this case it was get out of dodge but still take the dinasour.  Where was I to find three more hours in this body? The dinasour story ran through my mind :
     certain family had started putting up a nativity scene in their front yard. All of them were carrying out the little statues to put in the nativity scene. Finally everything was in place - Mary and Joseph and the manger and the baby, and angels and shepherds and all the barnyard animals.  Then little Scott came out carrying one of his favorite toys, the figure of the fierce Tyrannosaurus Rex, king of the dinosaurs. It was one of those plastic figures that you inflate, and in comparison to the other figures it was an enormous thing, towering over them all, and certainly not something to have in a nativity scene. The Dad said, "I tried to tell him, ‘Scott, you have to take that back because it doesn’t belong there. Dinosaurs existed thousands of years before the baby Jesus, and it just doesn’t belong in a nativity scene.’ "But little Scott insisted, so they finally put it there behind all the other figures - a fierce dinosaur hovering over the manger and everything else. Then he said, "As we stood back and looked at it, we realized that maybe that dinosaur says more than we realized. For over each of us there is this menacing character that threatens to rob us of all our joy and peace and cheer."
     My friend and pastor shared that story with me.  His take is that the baby in the manger is stronger than any dinasour in our lives, but from my perspective T-Rex is kicking my ass, and hanging over me with a grip that feels much stronger than any higher power.  But then what the hell do I know, accept for the fact that somehow, someway I survived the travel (7 hours upright) with that big nasty T-Rex!  I have tried several times to replicate sitting that length and cannot come close.  After two hours in my special chair I am back in bed.  Maybe Father Teodor has a point.  Maybe that day that little baby in the manger helped me to declare victory!?  I just  hope that little guy continues to follow me as well as my family and that he did'nt take the return flight back to Detroit, if he really even was on board afterall!?