Friday, June 22, 2012

Who Is Gonna Find The Cure To MS?

     If you may recall in an earlier post, Esthe the hairdresser has MS figured out. Well I am proud to report she has outdone herself again. Originally it was salsa dancing, but now I am excited to reveal her latest innovative and cutting edge advice and advancements. Last week while catching a glimpse of my gorilla like fur encompassing my ears and neck, I realized It was time to make the scooter ride back across the street to see Esthe. After all, Wednesday's are $9.95 for a descent haircut, and being that it was tipping the low 100 degrees I though a trim might cool me down and maybe crossing John R Rd I may just run out of battery juice and get flattened by a semi. Heat has that effect on me and along with extreme weakness and double vision I cannot feel my hands or feet so a good head-on actually was kind of appealing! With my luck I would twist an ankle so I decided to just get across the road and get my ears lowered.
      As luck would have it, the salon did not have air conditioning, and quickly I was evolving into a three toad sloth. Esthe said she had some really great news but had one patron before me. There I waited, sitting in the scooter, quickly losing all feeling in my hands from the extreme heat, and really having a tough time with the tracking of my eyes and the accompanied nystagmus. Nonetheless, I struck up an exhillerating conversation with a 90 year old Vietnamese lady, also waiting, and we commiserated about our ailments delightfully. The aches, pains, heat, and bladder function were just a few of our similar complaints. A 44 yr old man and a 90 yr old gal, something just didn't compute that we had commonalities with regards to our ailments. Either way the conversation tickled me.
     Esthe kept looking over like a little kid with a secret, hurrying along the lady in her chair, overcome with delight as to whatever this revelation was. I was preparing myself for the letdown, but that little part of me was kind of intrigued. After all someone like Esthe is going to cure MS. Someone like her, without any preconceived notions, prejudice, or knowledge of what the hell MS even is will find the cure. I am convinced of it.
     Finally after all the bladder, bowel, suppository, and prune juice talk with my new Vietnamese grandma, Esthe waived me over. By now she was chomping at the bit and was ready to pour out like the opening of the Hoover Dam. "Helicopter" she blurted several times. Trying to follow along, I smiled and repeated her every one word. "Helicopter, sure I know what that is Esthe," I revealed fairly confused. "No, no she said, this is cure I tell you for problem, Helicopter!" " My friend say she have friend with same problem, she jump from helicopter and problem gone!". Sure I agreed, jumping from a helicopter would do it, surely the impact should take care of that I agreed. " No if you jump from Helicopter it scare you and the conditon will be fixed, then you take parachute to ground and problem gone."
      Apparently the shock or the exhilaration can cure any and all neurological deficits. For a second I was buying into it, since nothing else seems to be helping. Maybe MS is some kind of evil spirit that is controlling the ms population, and jumping out of a helicopter will scare the shit out of it, enough to eliminate its foothold!? It may not be a helicopter, but guaranteed some crazy ass theory will be our shining star, and although Esthe might not have it this go round I look forward to what she has for me the next time. At least I picked up a few pointers on loosening my bowels and received a pretty darn nice haircut for a mere $9.95 and a four buck tip. Helicopter. Maybe she's on to something? Sign me up.

Saturday, June 16, 2012

Reading Between The Lines

     Do you remember that excercise you had to do in class where you would line up, the teacher would tell the first guy in line a phrase, and by the time it made it to the end of the line it was completely butchered and misinterpreted? It was a simple phrase like"John has white hair" and it turned out to be "John wears whitey tighties.". Such is life. A mélange of misinterpretations, mix ups, and muddyuck. For those of you that aren't familiar with muddyuck, it is a tribal meal where a variety of consumable herbs are thrown in a bowl, and a nice spatoon of saliva is the catalyst that mixes the herbs and grasses together. Such is life. Muddyuck. A bunch of different words, experiences, triumphs and tragedies thrown in a bowl and mixed together, a little spit or sweat mixed in, and an output that is interpreted differently by each and every one of us. This concept is in some ways both a beautiful thing and at the same time can be a bastardly thing. Interpretation is as individual as DNA. You may be trying to do something special and proud of what you are doing and one may be hurt or shocked by that same thing.
      So who is correct? Both are correct. We are all blessed with our own opinions and yes, interpretations. This is why communication is a game changer. Without it you may never know that this special thing you do is hurting someone or even helping someone. I received both an amazing compliment and an upsetting interpretation of my actions recently. First, I had a lady email me and told me that she has a granddaughter that does not feel any self worth and this grandma fears what the outcome may be. Recently the girl became a reader of my blog and realized the good in her life and had made a 360 turnaround in attitude and often times will say " I bet George would love to do this!" To me, this is the ultimate compliment. Conversely I have some very very special people in my life that don't feel the same. Who is correct? They both are based on their own unique god given rights to interpret my words. Again the key is communication. It is the way it is and where the thought of hurting anyone is unconscionable to me, it is going to happen. Sometimes reality is a slap in the face and darkness can be freightening, but not all stories are inspiring in fact some are downright depressing, but again I have tremendous admiration for anyone fighting, no battling, any kind of illness and sometimes one has to read deep between the lines to find the good, or maybe it's bad, again it is his or her interpretation!
      Do get to the point Greek you say? The point is life is as unpredictable as the weather. A friend of mine lost her 40 year old husband yesterday to a heart attack while driving. Great shape, athletic, strong as an ox and this guy gets stripped from life just like that. Don't get so caught up in your interpretations in life. Focus on what you can do and not what you can't. If I admit that MS sucks that is my interpretation and my right. If you think it has taught you so much and was a blessing for you, so be it. I do not have to be in agreement just as you don't have to agree with me. Life can be a wonderful thing. It can also be a shitty and cruel thing. How are you going to interpret it? Is your way the right way? Is my way the right way? Not even God can answer that. That is what makes us all unique, all special, all different, and all responsible to deal with our own interpretations.

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?