Life Goes On

I don’t know where to start so I will just dive in.  The visit to New York to visit Dr. Oheneba Boachie-Adjei was a success in that he gave us some hope that open back surgery may help correct some of my problems and reduce some of my pain.  That is the good news.   Well I guess not the only good news.  I got to see some of New York for the first time without the stress of working.  I have been there so many times I have lost count but every time I was working.  This time I had two extra days to explore the city and meet with old friends.  As life would have it, I didn’t feel well enough to do anything but go to dinner one night with Mary.  It was one of the best nights I have had in a long time.  I was well-medicated so that I had that perfect balance of barely getting through the night.  But I wouldn’t trade it for the world because I was with the woman I love.  The next night I will never forget the tears streaming down her cheeks as she walked out the door.  I was so exhausted from the five hour doctor visit that I couldn’t move out of bed.  No amount of medication would work.  I encouraged her to go out because I knew she needed it.  We were meeting my cousin Jeremy and our good friend Tony.  Keith Roberts was along as well filming, encouraging and being a good friend.

I secretly wanted Mary to stay with me in the hotel room while I slept but I couldn’t bring myself to be so selfish.  She sacrifices everything for me, every ounce of her being goes into raising our kids, doing all of my tasks, taking care of my needs and fighting with people trying to take advantage of us financially while we are down.  She cries daily as if I were already dead, me lying in the room all day.  It isn’t far from the truth.  In some ways, I know that death would be easier because it would be an ending.  I have dreams sometimes that I will die at some point during this process but I also refuse to give into death.  It would be easy to roll over and slowly die, put up a wall around me and shut the world out.  But I can’t do it.  I love my wife and my kids so much that I fight, even when I am sleeping.  I may look like I am resting but inside there is a war to move forward and beat whatever is trying to pull me into this whirlpool with a brick tied to my foot.  As I close my eyes, I feel like I am pushing against the Empire State Building just to stay present, to stay somewhat involved in the importance of the lives around me.  Some days I do ok, most days I am almost a stranger to my family, a patient in bed waiting for two little visitors and the one that is the water to my thirst.

Anyway, back to New York.  The surgeon redid calculations (which were wrong and much worse and progressive than previously measured) and gave us the choice of surgery or let things be.  He agrees with other physicians that although surgery is becoming critical, it “technically” will not solve all of my problems.  The surgery actually may even make things worse.  There was of course one small interjection that he made about a handful of patients similar to me that came out of surgery pain free after healing and physical therapy.  So there was a glimmer of hope that there may be an answer in this, but then there is the risk.  Severe scoliosis surgery to the thoracic and lumbar regions can be life threatening and life altering, in the wrong way.  Things can be worse or better or stay the same.  But my life, as is, is progressively becoming more painful and worse.  So the choice to me is obvious, I am pursuing the surgery.

Now it should be just that easy, but alas, the surgeon does not take Medicare and my secondary insurance is unlikely to cover the cost of the surgery even if my life is at risk.  Makes you feel all warm and fuzzy.  It is like finding a working vending machine in the desert that doesn’t accept paper money, and all you have is paper money.  And the man running the vending machine is a thousand miles away with no phone number.  You feel like the only choice is to beat the machine until it breaks open.  Anyone good at this let Mary know.  The machine needs beating.  I can’t really blame the surgeon.  He stopped accepting Medicare four years ago because it just doesn’t cover the surgery, insurance and risk costs of doing such a complex procedure.  I cringe every time I hear someone talk about repealing healthcare or “Obamacare”.  I don’t wish them ill will but they should take a good hard look at so many situations like the one I am in and give every lobbyist dollar they collect to help this and not their campaign.

The surgery is more than just a few quarters though.  The range is from fifty thousand to over one hundred thousand dollars. My surgery would be very complex and dangerous, i.e. I would need to take out a mortgage on my back.  I know that we are going to have a fund raiser coming up in either April or May, but we never expected this.  We are already over fifteen grand in the hole from medical and moving costs from the first three months of 2011.  The sad part is we were debt free for the first time ever in October of 2010.  I am not saying that we can’t do a fundraiser or two and come up with some or all of the money but it will be an effort much more monumental than I could have ever imagined.  Bottom line, we need a miracle of generosity in a time when everyone’s generosity is almost bankrupt from the past three years of a financial depression.  It is almost as if the financial depression coincides with my disease progression.  But we have to at least try.  There is nothing else right now that is presenting an answer.  To complicate things several doctors agree that I have more than one thing going on, i.e. multiple diseases, syndromes, etc. 

Three years ago I worked for Bill Gates.  Not directly under him but for Microsoft, the richest organization in the world and one of the richest people in the world.  A philanthropist now, he uses his money in so many ways to make the world a better place.  My wish is that somehow Microsoft would pull through for me and give to my non-profit organization to help me out.  Not as a part of corporate governance but out of care for someone that gave many years of their life to make millions for that company.  Scratch that, give because a human being, a friend, an old co-worker is dying and needs intervention that would amount to less than rounding in their financial position.  I ask those that still work there to help me in my fight to raise money for this operation that could not only save my life, but change the quality of my life to where I could be a father again, to be a provider again, and to be a friend that can give instead of always needing help.  Because that is where I want to be, I want to be healed so that can help others with my experience.  I want to give everything that I have to helping others and being all the things that really matter in life.  Life is too short to quit and make it disappear like a whisper in the wind.  I sound desperate, I am desperate.  There is no pride left in this man when it comes to asking for help because my family and I would be on the streets without the help of others.  Where pride was there is a great gratitude and a great feeling that I must not give up now I must keep moving forward putting my life on the line to stop this train with no tracks, this madness that keeps on one nickel at a time trying to pay for a house of medical debt.

The other day I got into the pool for the first time in a long time.  The pool is something of a blessing and a curse.  In the pool, I am almost weightless and I can walk without tremendous pain, I can swim slowly through the water for short distances and feeling like I swam the Atlantic in my heart.  It is uplifting while I am in there.  I am almost the person that I used to be.  As I climb up the slow steps out of the water, I feel gravity pour over my shoulders, down my arms, my back, and squeezing my legs as I come slowly out of the water.  I turn my neck and feel every inch of pain, but it feels good.  Not because I am some lover of pain, but because I know that what is within me can be fixed with the right mind behind it.  Sometimes we forget the effects of gravity on our bodies, but it gives us clues as to where to look and it gives us refuge, if only for a blink of an eye, from the bondage of relentless pain from somewhere hidden within your body.  So what hides, can be found with the right eyes, with the right mind and with the right conditions.  Just like a storm can produce one hundred foot waves, a perfect storm, my body is in that perfect storm.  But above the crashing waves, the weight of the water, there is a calm sky miles above the relentless storm.  When we rise up above the storm, we can see what is going on.  We have no control over the storm, but we can sometimes find a safe way out.  And right now, I need a good financial boat to navigate out of the storm.  I believe I have found the captain in Dr. Boachie-Adjei.  Help me climb in that boat with your love for me and my family, your support for Mary and the most difficult part, the financial support for the boat to take me home.  So with this I humbly beg, give what you can but not more than you are able, tell everyone about my plight and my website, and beg them to tell their friends about our plight as well.  I know that a few hundred can turn into a few thousand in a short amount of time if people are moved to do so.  So please, help us, pray for us, keep us in your hearts and take care of my Mary, she needs her friends more than ever right now.  As for me, I just need a financial boat, and maybe an iPad2 (just kidding).  There are millions of miracles needed every moment.  I ask that you help our efforts to focus on this one miracle so that we can move forward to helping the next.

 

Much love to you all.  We are getting used to West Virginia.  It is a beautiful state.  We miss Atlanta like our best friend in many ways.  But our life is here now with Mary’s parents.  They have been gracious enough to let us take over the upstairs of their home so that we can have help.  And that means more than they will ever know.  Helping someone without expectations when they are helpless is beyond grace, beyond kindness, it is the essence of God that binds us together like a well woven rug that never wears thin, never loses color and is always under our feet.