Saturday, March 31, 2012

ALONE

     We all have times in our lives where nothing beats alone time.  A rough day at work, or maybe a tired day where just some solitude does wonders.  MS offers a different kind of loneliness.  The type that no matter if your physically alone or smothered in family, you're still alone.  You may be at a movie theater with 300 people, like I was last night watching Hunger Games.  When my scooter had to be moved from the aisle I felt, well, alone.  Kind of trapped, stuck in the big leather chair that comfortably secured the handicapped section.  For a minute my mind wandered.  What if I have to go to the bathroom?  What if I get sick?  My scooter, my independence, was 15 feet away and yep you guessed it, I was alone...Breathe, I kept telling myself; Nothings going to happen.  Sure enough nothing did.  But when the movie ended, naturally after everyone exited and the original usher forgot about me I fortunately got some help retrieving my scooter by the last patron.  Boy was I pissed, for a minute, then I remembered that this young usher really didn't realize what being alone was like.
     For one battling MS there's a lot of alone time.  A friend of mine, another MS soldier was enjoying a bowl of ice cream with his wife, when suddenly he realized how difficult it was to push the spoon through the ice cream, obviously deterring the simple elegance and beauty of enjoying a treat with his wife.  Ah yes. Alone.  Inside his mind fretting and scrambling just to revive the moment he was supposed to be finding comfort, rather he found himself alone.
     For many the simple thought of being a child of God is one way to eliminate being alone.  Many of the old ladies at the NUCCA chiropractor that support me and have a little crush on me tell me all the time.  You're not alone.  You're God is with you.  Well I believe it, but anytime he is willing to stop in for supper or just hang out my schedule is wide open.  Others turn to Buddha teaching or Yoga to help ease their loneliness.  I give them credit.  I've read of so many amazing patients that beat that loneliness  by getting involved in these things, or hobbies or what not.  I commend them.
     Truth is when your driving hand controls and your phone falls between the tracks of the adjustable seat, and someone is calling simultaneously its a helpless alone feeling.  Or having to use the bathroom.  You know the feeling.  You are driving down the road and your busting a bladder, so you pull over quickly and run into the Macdonalds to relieve yourself.  That's if you physically can.  Those of us not physically capable are once again alone.
     Optimism for the alone person is crucial.  By the same tolkien one could say resilience is too.  Which comes first?  I would be hard pressed to answer that and could argue either way. One thing for sure is we need both.  What is always amazing to me is no matter what the situation, we usually find a way to deal with it, to fight it, to conquer it.  Might not be pretty, but the job gets done. Most of the time.  We may get settled and play it in our mind and shed tears, like the big greek baby does all the time or laugh, but someway somehow, we get through it, with help or alone.  We get creative, using a belt to bend our legs stuck from the intense spascisity, or throwing a shoe at the light switch to turn it off.  My mouth and teeth are like a third arm.  I carry my phone, wallet, lunch, paperwork, and even my mail between my teeth as I nestle into the office chair or scooter or the car.  We improvise, we recreate, we invent, we somehow and someway make it happen...alone...This is not to say that all of us are capable of doing things alone as this disease affects us all differently and things I did just a few months ago I cannot do alone.  Things like getting dressed or cooking.  The one thing we all do share in common is that indescribable loneliness no matter how much help we have.  Ironically I know a lot of healthy people that can't do things alone, but its different.  For those of you that feel me and are going at it alone, keep your chin up and give yourself a pat on the ass, listen to the old ladies advice, you are not alone...

    

Friday, March 30, 2012

Fear is not Fair

  

        “Boy you look great George.”  “Wow it’s nice to see you out today!”  “Sure is great you are working.”  “Good for you George you got out to a restaurant today.”  Tell me people. What the hell is it that you would like me to do?  I am trying to live a normal life when in essence it’s far from it.  Far!  Shouldn’t I go out to eat?  Shouldn’t I try to look good?  Is it ok that I am out at a restaurant?  I am trying to live like and among the general population.  I know your being nice.  I know you don’t know what to say.  But as my good friend in NYC more eloquently reveals it, truth is I’m scared to death.  And believe me I have shed some tears on his shoulder via the telephone plenty of times.
         Sure I put on a happy face, with help I get dressed and scooter off to work.  I even turned in my favorite F150 pickup truck and purchased a mini-van with hand controls.  Isn’t this what every 44 year old wants, going from driving a chick magnet to a grocery getter?  Behind that happy face, hate to say it, beyond the therapy, beyond the Xanax and baclofen there’s fear- a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined.  Sure some days my imagination kicks in, but believe me going from an able bodied physical freak to a numb handed, stiff bodied, eye bouncing, weak legged, pain laden replica in four short years is not my imagination. I didn’t ask for this, and the shear terror of fighting it, dealing with it, trying to put it out of my mind, and ignoring it is no easy task.  If I hear from one more person how God only gives you what you can handle I am going off the 7th street Bridge!
    Today in the elevator a friendly neighbor in my apartment building commented how “that gadget sure is cute,” referring to my scooter.  He’s lucky he got out of the elevator with two unbroken shins.  I get it, I understand, its awkward seeing a guy who looks far from feeble sitting in a scooter, but how about something like, “wow winter’s back,” or “Opening day for the Tigers this week .”  Waking up more tired than when going to bed, turning into putty on a hot day, living alone with disability as I am currently or even living with someone, it really doesn’t matter.  An attack on one’s inner self, a disease that will not allow one to enjoy heat, spasm that inhibits a good night’s sleep over and over and over believe me can scare the living bajingas out of the toughest.  This is reality. This is MS.  Raw and no busllshit.
      Sure I will keep fighting it as best I can, as long as I can, with whatever tools I can find.  Fight the fatigue, the pain, you know what i am talking. I don’t want pity, I don’t want to make anyone feel bad, I just want the health that the universe is supposed to bestow on us humans.   I take difficulty believing in "this happened for a reason"and all that bullshit.   We all have our issues, I understand, I just want to go about my day like everyone else; Normal.  Is there such a thing?  Trying all these therapies, medicines, excercises both mind and body etc etc. When will something actually work?
     To my fellow illness battlers that put on that happy face that disguises this fear I salute you and respect and admire you all, big time.  I know the social distress you feel and conquer and the fear that can potentially paralyze you.  One step at a time. Minute by minute.  Your all forced to be heroes, and damnit i commend it but its just not fair.  Fear is not fair.

Monday, March 19, 2012

Ignorance Is Bliss

     Why shouldn’t I celebrate St. Pattys Day?  Ok I am Greek, but doing “normal” things like hanging with friends or people watching can help alleviate the daily pain and torment that comes with MS.  So off I scootered to the local watering hole in search of some amusement last weekend to give some green beer a shot. Actually I sipped a glass of water the whole time, since the alcohol seems to interfere with the baclofen.  I become so listless I don’t realize the drool on my lip like water coming down the fall!                                                             
     A relative owned this bar and adorned in my green t-shirt, silkscreened with a leprechauns suit jacket and a clover that read ‘kiss me I’m Irish.  A string of green pearls and clovers hung around my neck.  I enjoyed some corned beef that had slow cooked until it was like melt in your mouth butter, some rye bread and some sweet carrots.  I was by myself kind of parked in the front corner of the bar, not really talking to anybody, just kind of minding my own business when an inquisitive couple asked the reason for the scooter.  “Soldier” I remarked.  Been in a four year battle with MS I explained.  Turned out this couple worked with patients who were involved in accidents or suffered spinal trauma, so I didn’t have to do much explaining.
     As the night when on the bar became increasingly hot (temperature wise) and naturally my glorious symptoms exacerbated.  My hands were so numb I couldn’t hold the glass, and the vertigo had me feeling like I was in a tilt-n-roll at the amusement park.  Nonetheless I trudged on, trying again to enjoy a “normal” evening like the other patrons.  The effects of the green beer was starting to really show on the faces and the actions of those in the bar, especially when some bastard , built like a superhuman, tattoos and his hat flipped on backwards thought it would be fun to start hassling the guy in the scooter, again who was minding his own business.  “You got a coaster on that thing”, he joked “I need somewhere to set my beer.  We gave each other a few ugly looks and words as I look up to him like a little kid looking up in the sky.  “Why don’t you just move on I asked him.”  Apparently he was getting a charge out of the whole thing and started grabbing the controls of my scooter and laughing.  After about the third F.U. that I tried to instill in his unconscious mind, he laughed and walked outside the bar.  It was there he stood at the door and pointed at me and laughed.  I tried to shrug it off but my God am I allowed to have some dignity, even if I can’t walk?  I banked to the left and b-lined outside where I called this giant every name in the book.  I didn’t care.  What would be the consequences?  I still have MS at the end of the day, and it sucks. 
     I pictured ramming his shin with the front bar of my scooter.  I knew that would hurt.  As I hit the hammer and started to charge towards him is when two able bodies showed out of nowhere. It was as if they fell from the sky.  It was the couple I met earlier and if you think my mouth was dirty, forget it they layered it on this guy like syrup on a pancake.  The verbal assault continued until finally a bouncer came out and broke things up, and sent muscle head packing.  I felt bad that the couple had to get involved, but it was at that moment I realized that one never really knows when one’s angels will appear.  And it wasn’t the bully and his chiding of my disability that had me mesmerized, but rather my two angels that came out of absolutely nowhere; reminding me that life shouldn’t be focused on the bully, but rather the beauty.  Ignorance is Bliss…