Tuesday, June 12, 2012

Just What In The Hell Are We Doing Here?

       Mornings are by far the toughest time of the day for me.  Firstly due to the realization that the relentless battle of the prior day has actually ended, and getting my mind around the new battle that commences the minute I open my eyes weighs deeply on the moment.  Secondly, it’s nearly impossible now to physically arise from bed unassisted thanks in part to the extensor spasms of both my long legs and the feeling of the likeness of a steel rod running through my spine.  The stiffness and spasm is so intense that I am unable to fold my body and need to be pulled off the bed in one straight piece starting at my ankles.  Once I can get my feet to the floor it’s a matter of unfolding my feet and sliding to the wheelchair.  All this while the vertigo, numbness, banding, and spasm reek havoc and plunder me into a mini depression.
     This is just the beginning, and I don’t have enough time in the day to go through my shower and dressing routine, I will leave that to imagination.  Once clothed and assisted to the lazy boy, the mental battle ensues.  I literally have to remove my mind from my body, considering it is only seven in the morning and I still have to think about putting on my game face for work.
     This process in itself can be relentless and debilitating.  It is astonishing and surreal each and every morning before the morning even starts.  Most healthy individuals have the luxury of hopping or jumping out of bed and taking a nice warm relaxing shower. Some even a steam.  I long for those days, and hopping and jumping are not in my repertoire.
     Out to the parking garage I go and into my modified van, adorned with ramp and hand controls.  Once I get into the seat and get situated I usually take a minute to reflect on what I just went through to get to the van.  I often cry for five or ten minutes or I will pray deeply, thanking the universe for getting me to the van, all the while realizing that the day has not even started and I still have to actually work. As if this wasn’t work enough.  When I arrive at the shop I go right to the freezer and get my polar ice pack, which will be my friend and an extension of my back for the next 16 hours.  Six to seven hours at work and the rest at home.  The spasm becomes so intense it literally takes my breath away, and aside from baclofen and an occasional zanax the ice is all I have.
     Nonetheless I somehow and someway make it through the day.  It could be  a divine spirit or inner strength, or just the fact that I need to provide for myself and family, or maybe it is just the fact that I am holding on for dear life and trying to do what it is every other working person does, but with some added complexity.  Keep in mind this is a microcosm of the day and the afternoon and evening require their own set of defenses.
     Multiple sclerosis sucks.  It beats the living tar out of me every day.  And if I let my mind go even an hour into the future I panic about what my next accomplishment will require.  It may be something as simple as getting a snack, or something much more difficult like emptying my bladder;  An organ that afforded me a four day catheterization in Beaumont Hospital and an ambulance ride to emergency over the Memorial weekend.   Unable to void 1000 cc’s as all it takes is 500cc’s to feel the urge, it was time to seek help.   Every day I work I tell myself it is the last day.  And yet somehow, someway I manage to make it to the weekend.  Sure I practice all the self help, healing chakra, meditation and the like, but you know what I am sorry unless you are Stephen Hawking it’s just a plain old bitch.  I write this today not only for myself, but for those of us that suffer every day, painstakingly, tirelessly, under the crucifixions of  a disease that has gotten nowhere in 150 years, except worse.   Today I salute those of you that do not have the option of sharing your story.  Believe me I think about you and recognize you and give you the utmost respect for simply allowing your eyes to open each morning, allowing the stimulus of a world you never could have imagined infiltrate your emotional and physical being, and somehow and someway you get to the next day.   Life before MS sure wasn't preparatory.  Does the guy in the picture above look like someone getting ready for the battle of his life, every day?  I think not.  His shiny new Mustang 5.0, his Eastbay high tops, and rolled up jeans (that was in then kids) and the best shape of his life.  Lesson to self-kind of cliche, but live every day like it's your last because you really don't know whats around the corner, lurking, laughing, creeping.  Go balls to the wall, hit the sack because you cannot move from doing so much in the day that you enjoy. Some days it's easy to wonder just what the hell we are doing here.  And what was the life prior to this all about?


  1. Anonymous because my daughter loathes and despises the fact I look at anything relating to MS.Her disease activity has been relentless and agressive,her life has been torn from her in seven years.She has said I should let her die,I say no, you can get to the Winter Solstice/Summer Solstice.I have nagged her to and from those days in the calendar for seven years and I ask myself why in my head all the time. But I am going to carry on doing it just like she carrys on getting through one rotten day after another.I am like some crazy cheer leader along side her, doing nothing very useful but telling her to keep going a bit further. Best wishes to you and everyone else who begins and ends each day with MS and I hope everyone has some minutes and hours of respite when you feel human again.

    1. I am with you on this. I am George's mom and, (thanks George)
      I will stand by his side FOREVER. I am NOt letting him go anywhere. Tell your daughter that we have a mission predicated on love. Hope does spring eternal...and maybe someone, somewhere will find the cure for this crappy disease. Hang in and stay connected to us. We are on the same page.

  2. she is lucky to have you, and i feel for you as i am lucky to have an incredible mother that plays the same role despite my pleads of similiar fate. Should she or you ever want to talk please email me and i will send you my number. Believe me, I understand...

  3. George, you are one amazing man!!!! You are such an elegant writer, I can feel the anguish that you have to deal with on a daily basis!!!Only wish we lived closer to give you the love and support you need. Know that you are loved by many and admired by ALL!!! Love you, cousin!!!!!