Wednesday, April 18, 2012

You Dont Know What You've Got Till It's Gone


     Today I went for a haircut.  Sure it sounds normal and easy and run of the mill...uh huh...Getting a haircut takes preparation, endurance, strength, fortitude and planning.  At least for me anyway.  Fortunately directly across from work there is a salon that is handicapped friendly and the stylist has become accustomed to wrapping me and the scooter with the apron to prevent the clippings from infiltrating us, so we kind of have a routine.   I usually wait until about six weeks between cuts because this particular stylist never stops talking, and it is necessary I am having a "descent" day to absorb her conversation and also my participation requires extensive energy.  Simply having a convo can be extremely draining of energy that is stored for getting through the work day.  Anyway the Greek was getting overly hairy and today was $9.95 for men's haircuts, so around ten in the morning I scootered over for my bushwacking.
     What's great about Esthe, a small lady from the Phillipines, is that she has absolutely no clue what multiple sclerosis is, and jaded she is not.  She's never heard of it, nor can she possibly imagine it.  She asks me every time, "how did you have your accident?!"  She goes on to tell me how I need to do more, much more to feel better.  "Start jogging, take more hot baths, get massage, do yoga, jumping jacks help with strength, start using dumbells or do lots of sit ups and push-ups," she insists.  "Salsa dancing is great for you," she reminds me each time.  Clueless, so clueless that it's refreshing and beautiful that her conception of disease is so virgin in nature. 
     I have tried to explain the whole "damaged nerve" "kind of like an "extension cord with cuts in it" I tell her like I am explaining to a child, but she just can't conceptualize it.  How great it must feel to be so far removed from such an ugly, monstrocity, life sucking, pain staking, shit-ass disease like MS.  At first she kind of pisses me off each time with her ignorance,  but then on the flip side it's nice that she treats me like every other Joe that gets his ears lowered there, and after a few chops I forget about just how shitty I feel.  I get a kick how she thinks I am going to salsa dance.  Does she think this scooter is just a comfy motorized chair I like to sport around?
     My symptoms are a constant reminder of the inner battle I am soldiering through, and they rarely remit, so a 20 minute haircut with Esthe can be both exhausting and enlightening at the same time.  There was a time I remeber similar behavior on my behalf.  Ironically Ms affects four people at work out of thirty, not that it doesn't affect all my colleagues, but four of us either have this bitch or have a spouse with it.  I remember Vic telling me about 8 years ago how his wife asks him every night if they are going to his dad's house that evening, when in actuality he died years and years ago.  She suffers cognitively, and I would think to myself what in the hell is that MS crap?  Just like Esthe I was the clueless one.  I would give anything to know nothing about this disease, but instead have been forced to eat, breathe, and live it.
     Everyone seems to have their shit, an old friend recently contacted me about his battle, two sons fighting Batten Disease.  I had know idea it existed, and this amazing family is humbly fighting and contacting ME with support!  I wish they were like Esthe and had the good fortune of having no clue.  Fact is, be kind to people as you have no idea what they are battling, and its not until it's gone or taken away does one truly realize what one has.  Please don't take your good for granted.  Consciously realize the great gifts in your life and don't make the mistake of taking them so lightly, even something as simple as getting a haircut...

Tuesday, April 10, 2012

A Thousand Words-The MS Version

     A few weekends past, two of my favorite leaves from my tree slept over my apartment.  Charlie and Michael are my 9 year old twins going on 16.  They love to see movies so we decided to see A Thousand Words with Eddie Murphy.  We have seen a lot of his films together, including his portrayal of a wildman cop in Beverly Hills Cop.
     After stretching the truth on a deal with a spiritual guru, literary agent Jack McCall (Eddie Murphy) finds a Bodhi tree on his property. Its appearance holds a valuable lesson on the consequences of every word he speaks.  Considering he can't keep his mouth shut, and everything that flies out of his mouth is either selfishly mean or sarcastic or just full of bs, the leaves from this Bodhi tree start to fall.  He soon realizes that he better watch his words because there is great significance to this tree and for every word a leaf falls to the ground.  He feverishly looks for a solution to this phenomenon, until finally he discovers his answer deep deep inside the fiber of his being.  When and if all the leaves fall, the idea is that his life will so pass. 
     Half way through the movie while the rest of the audience was laughing hysterically, I became actually quite saddened.  As I sat between my boys and watched them devour popcorn and root beer like it was the Final Supper, it dawned on me just how many leaves I have lost in the past four years as a consequence of Multiple Sclerosis.  Believe me I couldn't have been happier sitting with the boys.  They are a riot and there is no two alike, but from the lost feeling in my fingers and feet, to the inability to walk,  the MS bitch has downed more leaves than I could have ever imagined.  The days of driving my truck, working out, playing ball with the boys, fishing the Detroit River, taking hot showers, drinking hot beverages, the leaves continue to fall from my tree.
     Today I left work early because the MS beast was knocking at the door. Big time.  As I lay on the couch it was only around three and the thought of lying there until bed was very unsettling. Another afternoon overshadowed by the beast and robbed like a thief in the night. So damn cliche. I was scrolling through my IPhone and came across a picture of one of my favorite leaves.  My 15 year old daughter Stacia and I getting ready to attend The Daddy Daughter Dance from about seven years ago. It happened to come through and old email and I saved it on the phone the other day.  What a great memory it was. This is one leaf that will never fall from my tree, and knowing that tonight was her lacrosse game, I took a lesson from that simple movie and dug so deep into my core, dragged myself to the scooter, out to the van,  and damned if I was going to lose another leaf, I was gonna see her play.  Turned out she scored a magnificent backhand breakaway goal, and another where she juked a girl out of her shorts and flung one past the goalie into the net. 
     As I sat in the scooter I pictured in my mind new buds growing on my tree.  I managed to stop another leaf from falling by being at that game,  and even though I could have easily stayed in bed today I wasn't consciously adding to my pile of leaves.  It's incredible how we must all dig deep, right to the core, healthy or not, every day brings with it a new set of challenges.  Granted battling a disease multiplies things by one zillion, but I warn you however, it is too easy to let leaves fall, and some days it is even inevitable, but once there is nothing left on the tree it's just going to be too damn late.  Try your darndest, dig deep, dig deeper, throw up if you have to, scream and curse at the universe, shed tears, yell like a mother f'er, but damnit if it is at all possible, try and keep your leaves on your tree.  I appreciate the difficulty and anxiety, but don't help satisfy the beast or let it have its way.  Give it hell.

Friday, April 6, 2012

Reasoning With The Unreasonable

     On the six o'clock news there was a story about a guy, a former dedicated Emergency Medical Technician, who was calling out to the general public for help.  Turns out he was in an accident of his own and became a double amputee overnight.  Here's a guy that for 23 years was the first person on the scene when it came to lifes random devastation.  There he was like an angel of God tirelessly doing whatever he could do to maintain, revive, comfort, or ease the pain of any affliction that relative emergency required.
     It's been eight years since he has been able to have a normal shower or bath, due to his insufficient funds and accessible living quarters, and with the help of his dear wife he mainly required sponge baths or shampooing his hair in the sink.  The guy had to suck up his pride and dignity and call the news to see if a contractor would be willing to help him out, gratas of course, in making an accessible bath.
     Every day there are new stories, heartfelt, unfair, unreasonable random acts that create suffering and change the lives of families forever.  Why?  I used to ask the universe all the time.  Why me?  Well I have recently stopped asking because I have come to the conclusion there can't be a logical or reasonable explanation for a guy to suddenly lose his legs, or in my case the ability to use them.  It's as if some high power throws a dart off the top of the 15th floor and it randomly hit me and guys like this EMT square in the head. 
     I have heard it all.  These things happen for a reason.  You were chosen to teach others.  Blah blah blah blah blah.  Maybe I dont feel like being the example.  Is there anything wrong with that?  I can only imagine his suffering, having had 23 surgeries for infection created by this accident.  However there was one thing that really smacked me in the face. For eight years he has sucked it up and managed to find ways to overcome the normal hygene routine of a simple shower. This is one area surely most people take for granted or complain that it takes their shower so long to heat up.  I know many, including me who would love the chance to stand there and wait.
       I used to love a hot shower enormously.  Especially after a cold day of golf or getting caught in a cold rain, oh the shear pleasure it was to let that scolding hot soft water caress my body like the hands of an angel.  Now its like climbing Mount Everest, and I am exhausted when I am done; however, at least I have the means to pay for help, utilize a bath chair, and wipe down with a warm fresh towel.  Simple pleasures.  That's all this guy wants is to take a shower.  How many of us take one without ever even thinking about what it would be like to lose the ability to, or have the means or accomodations to do so?  I know I sure never gave it a thought, until recently. 
     Next time your pissed about waiting for that hot water, imagine no legs, no shower at all, and having to wash your hair in the sink while holding on the counter for dear life.  Imagine being forced to reason with the unreasonable...