Thursday, April 21, 2011

The Ugly Face of Multiple Sclerosis--My Story

     The following is an actual account of just one of  my battles with MS.  I was diagnosed only four short years ago and have gone from walking to walker/wheelchair...

     Imagine walking the dog along with a loved one on a  sunny afternoon enjoying the beautiful and soothing attributes of nature, practicing your ever so typical and God given rituals and realizing the very next moment a random and unmistakable sensation taking over your body like the fog rolling in on a lake during a damp and cool summer morning.  The anxiety builds, you begin to sweat and strain as things that were once so simple suddenly have become increasingly and insanely difficult.  You turn around and horrified you head home, immediately resting or popping a few analgesics, your trunk continues to send signals to your brain that it’s being crushed by something that you cannot see.  You stretch and strain and reach and pull. You ingest a cool drink of water or apply an ice pack or a cold compress, but the assault continues.
      You telephone a friend or a family member.  Your mind races as you wonder if this feeling is going to subside or worsen.  Will it be temporary or permanent?  Is it a kidney? Is it your bladder? Is it something you ate?  You find yourself in bed, self loathing, thinking of nothing other than your symptoms.  The world around you continues.  The birds chirp, the dog barks, your kids run in and out of the house. You pop a few more medicines, putting your racing mind at ease and sedating yourself to the point of unconsciousness like sleep to remedy the emotion and physical pain only to awake an hour later to realize you are experiencing the same feelings you had prior to your efforts.  Your spouse observes your behavior in horror and urges to rush you to the hospital, but you have been healthy your entire life and what you are feeling has to pass, it just can’t stick around, nothing like this have you ever felt.
     You agree to telephone the Dr the next morning if the feelings persist because you’re a warrior.  You’re tough.  Nothing has held you back against your control ever.  Nothing health wise could possibly transform your agenda, but quickly and fearfully and without apprehension you must adapt or you lose your ability to participate in your world.  You call friends and neighbors to assist your children in their prior commitments and you make appointments with Dr's that you can’t get into for months to come.  You realize, if you are so fortunate you have your family to support you, and you continue to fight but something tells you that your world as you know it has changed before your eyes. You try to compose yourself but you are panicky and realize you can no longer walk on your own.  You begin an emotional rollercoaster and experience a panic attack that creates angina. You try to stand as you were an hour ago but the pain is too intense and your spouse is forced to find assistance to move you around in your environment that unfortunately is ill adapted for this new condition.  This is your new world and unless you take it head on you will never make it.
     Multiple Sclerosis is a thief.  It is a robber, a housebreaker, a hijacker, a burglar, a scrounger and a swindler just to name a few of its attributes.  It takes otherwise happy and healthy homes and without prejudice or contention it demeans and deteriorates and debilitates as a tornado would do when tearing through a suburban neighborhood.  It creates frustration, and feelings of abandonment.  It delivers constant persecution and imprisonment.  It takes healthy people and immobilizes and restrains and disables them.  There are many that might say MS has enlightened them as to their prior insufficiencies, creating an almost re prioritizing of family values or personal importance’s.  I am not one who subscribes to this mode of thinking.  For me MS sucks. I am and have always been a good person, without improperly treating anyone or anything, a pleaser of sorts, and a peacekeeper.  There are those that say everything happens for a reason.  If someone can rationalize the reason for the annihilation of my physical functionality then I am all ears.
   There is the frustration of experiencing discomfort while at rest.  The frustration of pain and burning and numbness while trying to enjoy a night out with a loved one.  Then there is the frustration of tingling or jumping eyes or color variation or the inability to stay awake due to overwhelming fatigue. The frustration of pseudo exacerbations while sitting out in the sun trying to root on a child involved in a sporting event. Pain a constant reminder of the assault on the body.  Do these frustrations occur for a reason?  Is this some kind of test of futility or viability or perseverance?  I think not.  The frustration is nothing more than another element of discontentment and affirms the randomness attributed to dealing with this atrocity or any illness. Whereas I have never been one engulfed in materials or lavishes or wants or needs, the simplicity of my innate demeanor has been redirected and deemed no longer recognizable.  I commend those that have been stricken or plagued by illnesses that continue to live as normal or accept their unfortunate state in stride.  I am elated for those that are lucky to be diagnosed with a mild form of this disease and live close to normal for years to come. I for one denounce this illness and refuse to accept its metamorphosis of my body.  I will continue to fight night and day without compliance for as long as humanly possible.  Many have told me the importance of acceptance, but to me this is merely approval or cooperation and I refuse to corroborate or assent to something so malicious, unpleasant, unscrupulous and despicable.  Rather than regress and lament and continue to slowly perish to this creeping paralysis, I plan to brawl and combat and clash instead.
     My earthly reward through my journey with Multiple Sclerosis   would be nothing more than the encouragement and assistance of a reader of this story in battling whatever life has thrusted his or her way.  The same ideals relate to the observations of my children. The simple fact is that relinquishing control to ones monster is not an option, and instead conviction, toughness, vigor and valor are a necessity.  If it is the will of some higher power that I must surrender then it will not be without dissension and controversy.  I will take the good with the bad, the ugly and evil with the exciting and hopefulness and in my mind shall picture the victory that one day I will acclaim. This achievement may be in this world or the next, and in the form of personal accolade and conquest or the resounding fulfillment of others.  Either way it will be.
    

24 comments:

  1. George,

    Our thoughts and prayers are with you daily. Thanks for shaing your story with us. We love you.

    George, Claire and Zoe

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  2. George,

    I am utterly speechless after reading this post. You're a true inspiration and believe many people, regardless of whether they are impacted by this condition or not, can appreciate your words, tenacity and defiance.Please continue to share your thoughts, as I believe many can benefit from the passion with which you speak and the awareness you can raise about this issue.

    Matt

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  3. George,
    I am blown away by your account. Not just in the story that you told, but in the way you told it. You start off in second person - “YOU” - describing things from a distance as you try to show your audience what this might be like for them (as if there is a way to know.) You move into neutral voice. And then it gets personal. You pound away at MS with the bloody truth in first person. “I” - and you move your readers in the process. I had a flash go through my mind when I read your story. After my father died when I was 18, for many years afterward I envisioned Death personified. I used to have fantasies of myself going nose to nose with the Grim Reaper, with gritted teeth, staring him down, wagging my finger in his face, or better yet, grabbing him by the lapels and screaming over and over, “You can’t get away with this!!” Somehow your account gave me a vision of MS personified. And in my mind you rose from the wheelchair with Herculean strength to get in its face. The blog gives you a voice and a presence, and hence, no matter what damage MS does, it cannot win.

    Mary Psihas Petersen

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  4. Mr. Bokos,
    Niko, Stacia, Michael, and Charlie are lucky to have such a wonderful father! You are a very inspirational person and writer. Your family has been nothing but kind to me over the years, to which I am so thankful. You are all in my prayers.

    Paige Mobley

    Ps please consider researching apple cider vinegar. It's a miracle juice :)

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  5. George,

    What an incredibly honest and courageous account of this horrible disease. I've know you for a long time and you're a great man. If anyone can continue to fight and maintain a positive outlook, it's you!

    Rot

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  6. George, I must say I like your style. "The Greek from Detroit"..
    You give the power of positive a whole new meaning. Good for you in not surrendering to this horrible disease.
    I validate your feelings of trying to understand how this happened to you when you have been a good person "peacekeeper" all your life. I have been through my own set of challenges (nowhere near what you are going through) the last 2 decades of my life so I can somewhat relate.
    Everyone is entitled to their feelings and you are no different. I think it is very noble that you bring it to the forefront instead of keeping them buried inside.
    All my best forever to you on this journey. Love and support always.

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  7. Karen Hintze (Complete Travel)April 22, 2011 at 8:37 AM

    George,
    Who knew what a fabulous way you have with words! Your profound and inspiring comments are a testament to your courage and the fight that we all know is deep inside you. Keep up the battle and I know with the support of your wonderful family and friends you will KICK Multiple Sclerosis' ASS!! I can't wait to show this to a few of my nieces/nephews who do nothing but complain that their life isn't "good" enough, or they are "bored", or when they say they "can't" do something. You are an inspiration to all of us to stand up and and fight rather than lay down and allow life to roll over you like a huge truck. Sending you big hugs and support today and always. xoxo

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  8. George,

    You are a great man, wonderful father, and loving husband.
    I love you with all my heart and pray for you every night.

    Ronalee

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  9. Georgie Porgie, thats what we called you growning up. The cutest boy on the street and the one everyone got along with. When you said peacemaker, its who you always have been. The good boy next door, the good kid on the block, and everyones friend. And now this. It dosn't seem fair, but nobody ever said it would be. Reading your story in your own words has really inspired me and I am sure many others. You are taking the bull by the horns and I am so proud of you. Something tells me that if this can be beaten, YOU will do it. Stay strong and know that you have alot of people who are inspired and learning from you. Stay strong. Julie Tata Lasseigne

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  10. George, overwhelming writing, you have that gift. Stay strong and go to the mattresses, never give in. You have given me new strength in my own battle. My sister has been at war with MS for the majority of her adult life, she's now in her upper 50's. You two are an inspiration to all that have life's unjust battles to fight, and a wake up call to all the complainers of this world. Stay strong, my prayers are with you and family.
    Kevin Vial

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  11. Brotha. You are the toughest person I know and have looked up to you since I was a kid. I will never fully understand what its like to walk in your shoes and I feel helpless about it all. Thank you for writing this so I can get a glimpse into your perspective on this infuriating situation. You were always, not good, but great at everything and there is no one that can do what you are doing any better. You continue to be an inspiration to me and I love you like a brother. Kick its ass everyday George.

    -Andre

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  12. I was saddened when I first learned of this terrible disease taking over your body...it was told by your father when I ran into him at Costco. The pain in his eyes still makes me sad. About a year later I visit you at work, and there sits George....same smile, same big heart as always. I am not sure what I expected to see, but when I left it was as if it was 1986 and you were no different then the days at SHS! Who would have known that you were in pain? Not me. It breaks my heart that this is happening to you. But I know you will continue the fight...Greeks don't back down! Much love to you! Sandy(Johnson) Baldwin

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  13. my brother,
    you are an amazing warrior. i don't know anybody who could handle this horror with the grace and tenacity that both you and Linda have. i have known my share of pain, difficulty and sometimes sheer terror over the last 5 years. there were times when i sat and wondered what else God was going to throw at me, why the deluge just would't stop. and no matter how many people were around you, you always felt alone. you are of strong mind, spirit and will and while your physical condition may limit you, your continue to inspire and ignite those around you to be better human beings. thank you for making all of us feel like we will never be alone and reminding us that nothing can deter the human spirit. I love you my little brother, and wish you a very happy birthday today. -- andrea

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  14. Stephanie PezzettiApril 23, 2011 at 4:46 PM

    Dear old friend-

    Sometimes we do not need to look any further than within our own circle of family and friends to find a "truly" inspirational person. You have just given many of us an insight or reminder as to how we should live our daily lives. Your amazing strength and courage is an inspiration to us all. We can learn a great deal from you by listening and applying your lessons and wisdom to our own lives. Your words, George, are so powerful and far reaching that they trigger others into action while reminding us that "the road of life can turn at any moment". Thank you for sharing your story and if anyone can beat this "beast", it's you! I will continue to pray for you and your beautiful family but it sounds like you have a pretty "powerful hold" on your direction in life. Keep moving forward...one day at a time!

    Wishing you the best-
    Stephanie Beck Pezzetti

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  15. George,
    I received your blog link from Michelle Fetters who I worked with in retail management in the early 90s and we remain friends. I was diagnosed in 2003 at 35 yoa, but believe I've had it since '99 & the symptoms have rapidly worsened. I now predominantly use a wheelchair but won't give up and still work. I have felt and still feel the thoughts you describe in your very accurate blog. Every minute is unpredictable and you have to be somehow prepared, like a pop quiz or God's cruel joke. A few days ago, Scripp's researchers announced that they stopped MS in mice. I pray that we see an end to this hell soon and I am confident that we will see a cure in our lifetimes.

    Jill Weinsier(The Jew from Gainesville)

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  16. Thanks to Andre, I received your story in an email and was compelled to visit your blog. Already blown away by your words, I am now even more astounded by the impact you were, and are, able to have on other people's lives. Please stay strong, keep fighting, and continue to create awareness. Thank you for sharing your world, George.

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  17. Our hearts go out to you. You are an inspiration to all of us. Your inner strength is clear from your amazing post. Good luck with publishing, you deserve to be heard as others will benefit from your resilience.
    The McP's

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  18. George,

    You are an inspiration to us all.

    Love,

    Marion and Steve

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  19. Mr. Bokos,
    You are the most brave person i know and you are truly an inspiration. Keep fighting and i have a feeling that you will overcome this!
    No, scratch that. You are going to overcome this and your in my prayers.

    Love,

    Brendan Dillon "Bdill"

    P.S. i will be rooting for you always

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  20. Hi George,
    I remember you in high school, always so kind, bubbly and a joy to be around. I am so shocked and saddened by this disease that has taken over your body. You seem to be handling it very well and not giving up without a fight. Your story is a true inspiration to everyone. Hang in there George.

    Donna Canzoneri

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  21. thanks to all my old and new friends and family for the kind words. Im truly humbled. Donna Canzoneri-wow what a blast from the past! How are you!

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  22. Julie Tata-Wow so great to hear from you! Thanks and hello to the family!

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  23. Hi George,
    Todd forwarded your blog to us and as many others have said, it's an amazing gift you're giving all of us! Thank you for your honesty and humor in the face of this immense challenge. Your family is beautiful and it's obvious you're raising wonderful, strong kids. That's a reflection of you and Linda!!! Mark and I are praying for you. Keep that warrior attitude and please keep writing!!! You are touching so many with your words.

    Chris Decker

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  24. I am truuly sorry for what have happened to you George. I will pray for you. Your story reminds me my story. I had a good life. But then, one day, someone whom i trusted, like thiief stole everything from me. I havea a family who depend on me. I lost ability to support my family. Just one simple decision and your life is crossed. No reason. Just like MS. It seemed that all world went against me. But I will rise from ashes and some day I will forgive. Remember, that God can do things that are seemed to be imposible. I have seen that. God be with you.

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