Monday, September 17, 2012

Dont Wait It May be Too Late

     How many times do you come home from work, or for you homemakers at the end of the day exhausted, spent, beat up, wanting relaxation and peace?   It's only normal to feel this way.  I have experienced some alone time in the last 9 weeks where I have reflected so many experiences I would like to share where I felt just that and now this notion takes on a whole different meaning.
     Considering my last two surgeries have flipped upside down what little quality time I had during the day, my new day has been filled with the experience of either lying in bed or a short time in the lazy boy chair.  Either way it's about  90 percent sedentary.   To bring you up to speed, I am having great difficulty sitting upright due mostly to the MS etiology process, but to add insult to injury the two surgeries to get this damn pump working required cutting through muscle and cartlidge in my low back, thus creating a "pseudo" exacerbation and adding to the weakness in a profound manner.  No driving, sitting in chairs, long scooter rides at this time. Sitting creates a strain on my spine that in turn creates incredible pressure that in another turn forces me horizontal.  AS easy as it would be to just say the hell with it, I am doing the converse and I  have entered into a rehabilitation program with the hopes I can regain some fuction before the next surgery, yes another slice in my back to either repair or pull this pump out of me, haven't decided as making it through today is my main focus.  So rehabilitation requires great discipline.  I mean you want to talk about "manning up" as some ignorant to the term put it, this goes way beyond.  Imagine red hot poker sticks up your back while at the same time weakness and the ill side effects of medication transform you into a feeble, doped up, painstakingly exhausted bag of bones being put through a series of exercises that would hurt if there wasn't anything wrong with you!  All you can think of is getting back to bed yet somehow someway you just keep pushing almost in a divine manner.  Imagine, exercising with a belly full of muscle relaxants and pain relievers, its contraindicated!  Either do or die.
     Anyway back to my point.  You just get home your whipped, ornery, hungry and tired and your kid says he wants you to go ride bikes.  Sure you are perfectly healthy but your tired so you kinda give him the old"gimme a few minutes" until he is on to something else and you get your peace.  Let me educate you on what peace is.  Peace is laying in a bed that faces the outdoors and watching through a venetian blind a father your age riding his bike and his little guy behind him admiring him like he is Ghandi or something.  Not the kind of peace anyone would want to or should have to ever experience.  This peace, a result of illness, of lack of movement, of a relentless disease that comes out of nowhere and gives you more peace than you can imagine.  Peace is intentional, this type of peace is not peace at all. It's horrific, involuntary, forced, and fighting it only makes this "peace" worse.  It's not peace it's persecution.
      Change the rules and your mindset, fight your "tiredness", take the bike ride, go to the store, kick the ball outside, run to the corner, chase your kid, wash the car, clean the garage, run the dog, fix the gutter, play catch, get ice cream, whatever!!!! Damn it don't stop,  go balls to the wall because you cannot imagine what its like to spend your day in bed and then go to bed again, where you already have been all day, when everyone "normal"hits the sack.  It's no picnic believe me it plainly sucks watching the leaves blow in the wind, hearing the cars fly by, the kids laughing, all the while practicing your best Zen meditation battling your emotions, wanting nothing more than to be DOING, watching light turn to dark, repeatedly, getting out only when you have a Dr's appointment, your new "highlight.
    I was introduced to a really amazing family via a friend over the internet.  The Prudhommes have their own battle, as Ryan a 27 year old man, married to a wonderful supportive woman and father to a one year old son was out of the blue diagnosed with stage four cancer.  Ryan has exceeded his life expectancy since being diagnosed.  His secret, Living The High Life.  Take a lesson from the Greek and the Prudhommes; take that bike ride with your kid, kick the ball, live the high life, your bed will still be there when it's time.


  1. Wiser and truer words were never spoken. So sorry you have paid such a high price to achieve such wisdom and accuracy.

    1. Judy, He loved and lived the simple pleasures of life before MS. He didn't need or deserve this "lesson" for wisdom. But then, those who need the lesson, don't often get it.Just one of life's injustices.

  2. Reading this has really, really made me think of how I NEED to NOT say "in a little while" or "maybe tomorrow" to my sweet 6yr old daughter - despite my stage 4 cancer diagnosis I am STILL here, I can still talk, read, walk, kick a ball, drive a car, play... 1 day I will not be able too (thank you 4 helping me c the light) - starting now - I will NOT put her wants & needs off till later or tomorrow.
    Juanita Gee

  3. That's the best thing I've heard since starting this blog!