We all live with certain fears.  Some are more willing to conquer them head-on by doing and living what they fear most.  Most are phobic about anything that challenges the fears living inside them, the fears floating around their heads.  I, myself cannot say that I am fearless.  I have certain fears that I will probably die with and I have certain fears that I fight every day.  

When it comes to fear there is no logic.  It either changes who you are or it doesn't make you blink.  It all depends on whether or not you have let fear become a part of you, how deep that fear goes and if you see that living with fear, any fear, takes a certain part away from who you could be and sometimes goes so far as to define you.

I don't fear death or suffering.  I do fear not knowing when painful things will end.  I give hope to things that don't hold any promise of redemption.  Sometimes I fear how I have let my disease, my condition, my situation define me.  I have let down myself and those that care about me not because I haven't tried to fight, or to find answers, or to get better.  I have failed because I allowed my own fear of living life without answers.  I have been living life with a possibly naive hope that things always get better and I will get better one day and return to "real" life again.

Well, it has been four years now of spiraling health, dwindling hope and casting nets on all sides of the boat.  But the reality of what has been defining me and what has suffered because of me has set in.  It was something I never thought to fear.  It caught me off guard because I always knew that I would somehow pull through this and be a great inspiration to all and I would change my own definition one day from this poor suffering soul to someone that is strong and fought through it all.  So my fear of being defined by what ails me has brought about an awakening.

For the past several months, my eyes have opened to who I am and who the people in my life really are.  While I have been fighting this battle from my bed, the world was moving on without me whether I accepted it or not.  I saw the red flags, the warning signs for years yet I chose to ignore them.  I feel betrayed by doctors that I gave my complete trust to.  I feel abandoned by those that didn't know how to stay with this thing, this person as defined by what I am going through, not who I truly am.  I accept the blame and at the same time realize that it isn't all my fault as well, but I now must move forward and accept a greater challenge.  Now, I must live without fear of asking for help.  

I must live without fear of protecting myself from those that choose to hurt me while they are my lifeline as well.  I have to give space to allow this thing I have become, to disappear, to fall apart and be the person hiding behind the curtain.  I have been this person hiding behind suffering and behind the plight of getting better at all costs.  In the process, I have lost who I am and I have lost those near to my heart.

A few weeks ago, a good friend of mine from college who now runs a hospice was kind enough to speak to me for a few hours.  In a short amount of time, she called me out.  Not chastising me but calling out the Andy of yesteryear.  It was almost as if she had this power to bring the dead back to life making me realize that in my words and in talking with others that Andy was still in there trying to get out.  You know the Andy that was always full of life, the romantic, the guy that people just knew was something/someone different.  For many years now that Andy has been suffering greater than any disease or abuse that I literally have been going through.  

The suppression of one's innermost being, their soul, the person that they truly are is the most painful state one can ever be in.  It took many years and an unbelievable amount of suffering and self-loathing to cover this person over.  Many people have never met the true Andy over the past several years, only pieces and parts here and there.  That probably has been the only thing keeping people around, you know, curiosity of what lays beneath the cover of my skin.  People have seen my bones and my will, but not my soul and my spirit.  Time to face that fear.  I see now that sitting in fear is the end because you become frozen and don't move in any direction.  In effect, fear can be an end.

I am about to go on a journey of self-rediscovery from place to place, friend to friend and revive what has been gone for so long.  I know that it will be painful because unfortunately deciding to do this isn't going to make me better.  It may in fact make my health worse.  But with no definitive prognosis to guide me and no promise of tomorrow, no promise of healing, and no promise of what is coming next, I will not sit any longer.  Of course, this would be easier if the above prognosis and treatment plan were definitive, but I am going with what I have, not with what has been hovering a mile over my head since the beginning.

I have already talked with some of you about what is coming.  I appreciate the offers of places to stay and help getting there and palliative help/care when I am visiting.  I am in no way abandoning my family.  If I could, I would bring them with me in my trips but I can't do that until at least summer because I don't want to break what little normalcy that they have.  Who knows how long the journey will last.  I hope it lasts a lifetime however long that time for me is given.  If you want to be a part of this journey let me know so that we can possibly arrange it.  I can't promise that I will be fully Andy, but I can promise that I am tackling so many fears right now that you may be visited by three or four Andy's.  The good thing is you will like the real one, the one you liked in the first place.

I have updated our needs page on the website so that you can see all the things going on in that area.  I am also going to be working with Keith Roberts on a documentary that we will send out more detailed information on in the coming weeks.  It will be through a site called kickstarter.com to be funded and should be something that is quite amazing.  Keith Roberts is the filmmaker and director that did a few of the short films you see on my site.  His talent is raw, passionate and we have had high interest in the project for a long time from people that are friends all the way to famous directors in New York.  Anyway, with the documentary many of you will become a part of it.  That's right, you on the big screen!  The more money that is raised through the project coming up will mean the more in depth the story will be able to go and the faster that we can get it filmed, cut, edited, perfected and molded into a masterpiece.  I am just humbled and excited to be a part of it.  It's about real life so I won't be a paid actor or anything but the message of the movie will be powerful, life-changing and will hopefully bring awareness and change to the hearts and lives of many.

In the meantime, just know that I love and appreciate all of you that have supported us financially, prayerfully and in friendship and trust.  Whether this be my parting piece or whether it becomes the first of many to come over the years I just want everyone to know how much you mean to me and my family.  I know times are tough and I don't want people to give what they cannot.  Please just do what your heart leads you to do even if that is friendship.  That is one thing that I need so much more of everyday.  That and someone to support my love of gadgets that I have been a good boy and kept away from...for now.  

Much love - Andy

I have been very bad at writing lately and keeping everyone up to speed on my life.  There are excuses, reasons and many other things that could give me a pass on all of this but there are too many people that have given their hearts, their time and their commitments to stick with me through this process, whatever it may end up being.

I will start by saying that I have been holding out on many of you about my true condition.  Generally, when I write, I don't like to talk about what hurts or give bad news or if there is some bad news.  I like to somehow turn my experience into a life lesson or a learning perspective. I won't gloss over with you with what's going on now.  I just don't have the energy or a good perspective.  Maybe by the end of this writing that will change.

I also want to apologize for my writing if it is incoherent or broken in parts.  I have been having problems with memory and concentration.  At times, my brain feels like Swiss cheese.  But to give an inside joke to those that suffer from “invisible illnesses”, I look good on the outside.

My health has been doing a tight spiral since our December 7th house fire.  It was going downhill somewhat after the death of my friends Scott and Cindy, and it started getting worse after the death of my dear old dad. I didn't think that it would take such a toll on me but it did.

In the two years before Cindy Semple passed away from metastatic breast cancer, we talked often via email, Facebook or phone about how our lives were going and we would give each other the "real" story. It often was tearful, insightful, depressing, uplifting...the whole gamut. But the one thing that I could count on with Cindy was her belief that no matter what, God was good and she was going to beat this cancer thing.  She was also going to live life to the fullest.

I feel a great emptiness just talking about this because she was such a strong, unique person.  She had been fighting illness since she was just a baby and she never stopped until her last breath.

In September 2011, Cindy wanted to come and see me in New York during my spine surgery to give moral support and to meet my wife Mary in person. Mary had grown quite fond of Cindy over the years but how in the world couldn't you. She was amazing in every sense of the word. Cindy and I could share experiences that only someone that went through that type of pain and uncertainty could understand and give comfort.  Just as friends that talk with Mary that support a sick spouse or child can only identify with her.

Towards the last year of her life, I pushed Cindy to get out and do the things that she always wanted to do.  I told her to tell people want she wanted to do and God would find a way for her to get there.  Cindy took a trip to Israel that a friend of hers graciously paid for her to go. The thing that I gave to Cindy was the permission that she needed to ask for things that she needed and not go at it all alone. God puts people around us that can help us in so many ways and when Cindy allowed herself to be "taken care of" she was able to do things she wouldn't have been able to do before she died.

Cindy always gave me that extra pep talk to keep fighting.  Not the kind that you roll your eyes at from someone that doesn’t know your pain, but something from someone that has earned your respect, hands down.

Because of her trip to Israel, Cindy had to stop her current treatment to be well enough to travel. Her doctor realized that Cindy was in the final six month run of her life and it was better for her to die enjoying life instead of working and fighting to live her normal life. Because of her travel, she couldn't come and see me because of course she had to start back on the treatments upon her return.  I was sad but I could definitely understand.

In some of our last conversations, I told Cindy that you know that this is the last stand. I felt it in my heart and she felt it too but was just too strong to admit it. What I wanted to get through to her was not to quit fighting, but to accept where you are and leave your mark on life. Leave behind that wonderful legacy that was and still is Cindy Semple. We cried a lot that day just tears of happiness, sadness, grief and just accepting that we could not control our health and our time here on earth, but we could control what we did with our time.

I remember when Cindy passed away, I looked up toward my bedroom ceiling and said, “I’ll see you soon Cindy”.

I don’t know where that came from.

After all, I wasn’t riddled with tumors or given a definitive timeline on my life, but at that moment I think that my soul missed her so much that I wanted to join her and no longer be in pain.

There is so much confusion surrounding my prognosis and even my entire diagnosis that no doctor can put a timeline or treatment plan together.  I am an enigma in many ways.  But I am going to continue on with Cindy’s fight for life.  I believe she passed that spirit on to me as well as to many others so that we could pass it on when it is our time.

On the night before my spine surgery, I was very nervous about what was about to happen. This was a very serious surgery that could leave me dead, more disabled that I was, or by some miracle make my life better. That night Cindy texted me and this was our last back and forth

(August 30th early am):

(Cindy): Thinkn about you!!!

(Cindy): R u ready?? God is!! He is gonna take care of ALL of you!!!!!!

(Andy): Ready as ever!

(Cindy): Just imagine all the people u love so much standing around u rt now holding hands & praying. Father, please take care of my brother today and make this journey successful so that he can walk his sweet little girls down the aisle some day. In Jesus name I pray...AMEN!!!!!!

(Andy): Thank you so much!! It really means a lot in these final hours before the "new me". Psalm 73:26-My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever.

(Andy): I borrowed your quote Cindy. I'm getting pinging left and right like a virtual pray over!

(Cindy): That makes me smile BIG as i sit in a hospital bed wishing i could be there. U have lots of people who love u & God tells them when it is time that they r to let u know that :)

(Andy): I'm with you tonight Cindy as well. You never part from my mind or heart. I saw a woman get hit by a cab earlier in the afternoon. The New Yorkers formed a human shield around her to stop traffic from coming through. I made my way through the crowd and comforted her even as she laid there bleeding and I could feel her spirit wrestling inside her trying to get away. I simply stayed with her a said a quite prayer while keeping her still. I knew somehow these were her final hours here on earth. She was bleeding from her head and I could see that her pelvis was shattered. Somehow I found peace in that moment of sorrow. Peace be with you Cindy, peace be with you.

August 30th, 2011, 1:42am, that was our last conversation.

After my surgery, my life was definitely groggy and in a fog. I learned that my friend Scott Stanich had died and I couldn't go to his funeral because I still couldn't walk not to mention I was still hooked up to all the stuff in the hospital. I was still hallucinating from the powerful pain medications I was given from cutting an eighteen inch gash through the nerves all around and down my spine, tugging and pulling it straight and putting in metal rods, screws and bolts. I was in a pain that I can only describe as screaming because that was all that I could do when I was awake and had to move an inch.

But I was alive!

I had made it through the impossible to see my Mary and I couldn’t wait to see my kids.

It would be another few weeks before I could see my kids because I had to learn to walk again and I also caught a nasty infection during the surgery that let’s just say made life much tougher and more humiliating.

When I was through with my hospice recovery at home, I tried calling Cindy but I was only able to leave her a voicemail. It turned out to be the last Friday night before that Sunday when she passed away. I felt something was going on in my spirit and I wanted to check on her. I knew she wasn't doing well since well before my surgery and I wanted to catch up and try to pass encouragement back to her.

I wasn't able to speak to her again but I know that she got my message. I could tell in the last picture that I saw of her with our friends Beth and Jeff that Cindy was at peace and knew that it was time.  What a gift to all of us and not just to me.

I need her spirit now.

And that was it. Cindy was my constant person that got it, got the pain, got the daily struggle and she was gone.

I didn't really have time to grieve for her because my dad died the very next week.

I felt emotionally numb for a while although I did have wonderful dreams of my father for a few weeks. I knew both of them were no longer in pain and getting to know each other, laughing at how great being a free spirit is, no longer bound to this earth and all the pain that they suffered through was forgotten.

After our house burned down on December 7th, 2011, I felt my downward sloping health begin to turn into a tight spiral going straight down. The stress was really getting to me and making me angry at everything. Yes, I had officially arrived at the full on "anger" stage. It will rip your life apart in seconds if you don't have a patient, loving spouse and some coping mechanisms in place. I am still in this "anger" stage but I know that one day this too shall pass.

I haven't been feeling well for a while now and have been bedridden since the house fire. But it doesn't stop there and this is where I usually cut it off and don't talk about things like this but I feel compelled to share it with you because you deserve to know. My current doctor believes that I am beginning to show signs of Multiple Sclerosis. Now I have read that MS and NeuroBehcet's can't occupy the same body so if it is MS not just the NeuroBehcet's turning nastier, it would most likely be primary MS. But this is just speculation right now because I don't have the cash to get MRI's, bone scans and all the work-up I need right now because I don't have insurance.

Blue Cross Blue Shield threw me on the street October 31st with no carryover plan and they are now trying to weasel out of the spine surgery payment which has crossed over $250,000 now. We have maxed out everything we have so there are no reserves left. So I guess, I will have to get worse before I can get better. Exceptions are made for the dying but not for those that can still walk into the emergency room.

I have been bleeding internally for over a month now and I am officially anemic.  Being anemic is a big deal for me, because my body is notorious for always overproducing blood cells (polycythemia).  So this means I am losing blood at a pretty good rate. The doctors want me to do an EGD and Colonoscopy to find the cause but of course I don't have the cash so that isn't happening. Maybe I should start eating cork with hopes to plug whatever GI lesion or tear that I have. This happened to me several years ago but disappeared by the time the scoping was set up.

That is the beauty of autoimmune diseases.  They come like a thief in a night and destroy you from the inside out.  If doctors are fortunate enough to find the evidence left behind before it is washed away or put on the back burner for another pressing issue you are one of the fortunate ones.  Treating the unseen is another story all together.

Hopefully this will disappear as well. Yes, I still suffer systemic pain in my bones, joints and muscles every single day. I haven't had a day where I have had pain less than 5 out of 10 since September 2011.

I haven't been completely out of pain since September 2008.

I do have a small hope that the NIH will permit me to come in soon for more testing but that is slim.  Their funding was cut in 2010 by our wonderful Congress. No cuts for big oil or big money tax loopholes but an agency that helps the human condition, nah cut that stuff because we are all well and our system of pharma research and subsidized private research will be enough.  (Insert rant) We are definitely living shorter and dying longer.  And if we all do nothing then it will continue down this path.

Our country will spend 1.7 trillion on the fly to protect oil shipping lanes but will squabble over the scraps given to our human condition.  Expecting to be cared for isn't entitlement, it is a basic human right that every person should be allowed affordable, complete healthcare or healthcare to protect them if they have nothing. Our current system takes everything you have away from you until you have nothing and still falls short of getting you what is needed to get you better.

A healthy population is a working population. Without your health, you have nothing. It makes sense to keep people healthy to keep our economy and our overall well-being healthy.  If only FDR had not died before he implemented his extension of healthcare as a basic human right for all Americans.  America did however help build the infrastructure of Europe’s healthcare system.  Europe decided after World War II that the most important thing to provide was healthcare for everyone.  A healthy society is a productive society in more ways than just a capitalistic standpoint.

For those that still don’t get what I am saying about providing healthcare for all Americans, think of it like this, for every dollar you cut from the NIH, Medicare, Medicaid and refusing to implement a better more proactive system to keep people healthy and living healthy lives, you are making a conscious decision to allow people to die.

I don’t how to say it any plainer.

You reverse the progress with Obamacare, millions of children instantly will be thrown to the streets without insurance.  Children with a future, they just need a chance to get past the cancer, the birth defect or the abuse that has been handed to them without their fault.  You issue a death sentence to millions of children.  You then reverse the progress being made that in 2014 all adult Americans will not be in my position and without insurance because of pre-existing conditions getting you kicked out after anything major happening.

Now things aren’t perfect, the proposed healthcare plan isn’t perfect, but don’t go backwards on good things.

Make the changes to things to make them work better.

And I’ll digress.

Best to everyone, I'll try to get back to writing less depressing stuff if everyone can talk with God for me and ask for at least a break from this for a while if not forever.

#MayGraceFreeYouForever - Andy

I get many comments from friends and fellow various illness sufferers from around the world that often my writing gives them perspective into their own lives and helps them see things in a better light.

That is a very nice and humbling comment when I consider most of my writing as an outlet for me.

This year has been a tough year for our family and many others.

There have been many times that I have searched through what seemed a swamp of suffering only to turn out to be an ocean of learning, growing and my old friend perspective.

If I go through all the things that happened this year it sounds like an old country song:

1. We had to move in with my wife’s parent’s house because disability didn’t cover our expenses.

2. Since I moved from Atlanta my treatments have discontinued because the doctors have no other alternatives to help my pain. This includes the NIH (National Institutes of Health for Rare and Undiagnosed Diseases).

3. Several people have approached me and my wife and accused me of being an opiate addict and not really in pain (which I have served tirelessly to ensure is not the case).I have gone way beyond what doctors have suggested in pain medication prescribed to the point that I suffer more because of a significant voluntary opiate treatment reduction in exchange for preserving long-term options for pain treatment if things get worse.I hope to find a way to go to the Cleveland Pain Clinic in 2012 or Johns Hopkins for better and less dangerous options.

4. We had to sell our only car that had over 210,000 miles on it because we could no longer afford to pay for repairs.We have to borrow cars to go places and there is no bus system here.

5. I had life saving scoliosis operation that was one of the most painful and testing times in my life.

6. I went through a long rehabilitation process learning how to walk and do basic things after the surgery.

7. My good friend Scott died from complications of Diabetes, he was my age.He died while I was in the hospital in New York and I couldn’t see his family.

8. My father died after a long battle with Diabetes.He suffered for a long time and his battle was so hard especially there at the end.

9. Cindy, one of my good friends and someone that has helped me so much through this process, died from breast cancer.She was my age.I couldn’t go to her funeral because I was at my dying father’s bedside.

10. I lost my Blue Cross Blue Shield Health insurance because of a technicality bringing back in my pre-existing conditions.I have to pay out of pocket for all medications and doctor visits until July 2012 when hopefully Medicare Part B will kick in.We have received over $100k of bills from my scoliosis surgery that BCBS has yet to pay.

11. Our house caught on fire last week and we had to move out.There was an early morning electrical fire in the house that burnt out a god bit of the upstairs where we stay in the house.It will take four to six months to fix so that we can move back in.

12. The same day that our house caught fire Mary and I started marriage counseling.Life has been tough for both of us and we are trying to save our marriage.Statistically over 75% of marriages that have chronic illness involved end in divorce.I can understand why in when you look at the damage that illness does to a relationship.

13. We have accumulated more than a mountain of debt from medical bills and life expenses.In November of 2010, we were debt free for a short moment.That moment didn’t last very long.

14. And you can’t finish off a country song without the famous, “My dog died” line.Well my buddy of many years, Indiana (Indy), died from cancer.He saved me the first time I was ill thirteen years ago.Unfortunately there was nothing I could do for him.

There are literally hundreds of other small things that have happened that have really made this a hard year.

So there is your swamp.  I can wallow in it or find perspective in all of the situations.  I can be a victim of an unfair dose of bad things happening to me and sit on that, or I can move on with a fresh mind ready for the next thing good or bad.  I have to be honest, at times during this year, I wasn’t always “Mr. Perspective”.

I have suffered a lot of depression and many days worrying about tomorrow.  There is no special formula or exercise that I go through to get through all this so I could never write a book on how to deal with misfortune.  But what I can do is tell you that somehow, God has always reminded me of his grace in every instance good or bad.  That is probably why I have “May Grace Free You Forever” tattooed on my forearm.  That is probably why Mary and Joe Mayernik created a logo for my site (and later my cause) called “Be Strong. Take Heart.”

I have written about many of the things that have happened this year so I will just give you my take on what is going on now.  The latest tragedy of our house burning is one that is very surreal and it has given me probably the most perspective of any event this year.  Last Wednesday morning, Mary came in to the room just before 6:00am and told me we need to get out of the house, there is a fire.  She showed me the bathroom ceiling where she thought there was fire.  The ceiling was bubbling and it was like an oven in there.  We both immediately were getting everyone of the house.

She had already gotten everybody up so it was a quick dash for the most important things and out the door we went.  By the time we were out of the house the fire department was at our door.  They are right down the street from us so that helped quite a bit.  Mary had the kids in one of the cars to keep them warm because it was freezing cold and raining outside.

I stood outside the car and helped her back up around the fire engine to a spot across the street.  I still remember the moment like a slow motion sequence.  I looked at the house and there was a jet of flames coming from the side of the roof already blue and roaring.  I panned my head back over to the car and the kids were in the backseat crying.  They were scared because everything they knew was changing again and changing drastically before their eyes.  Their eyes echoed my heart but I tried to remain calm and steadfast to help them.

All of the sudden everything sped up.

The neighbors across the street were ushering us in their homes to be warm and get comfortable.  A father of both Reese and Lakin’s friends whooshed over to take them to their home where they could be with their friends and away from the chaos.

They were instantly much happier.  People kept bringing over little things like coffee and offering help as much as they could.  I stared outside the window watching the world wake up and our house burn down.  It was so surreal.

I couldn’t stop thinking about how Mary gets up every morning and goes to work out. This one morning she took pause with a weird smell in the house and investigated it.  If she wouldn’t have, I can tell you for sure that the girls and me would be dead.

Perspective started.

Fortunately we have insurance and that should help pay for most of what we are going through.  Sure we lost some stuff, but it is just stuff.  We have lost stuff before like our home and our car.

My first instinct used to be how am I going to take care of my family and how am I going to raise money for this one.  But that wasn’t my reaction this time.  I had a certain peace about what was going on.

After one hell of a year, my house was on fire, this should have been a tipping point pushing me over the edge.  But for some reason it pushed me back the other way.  I’m not saying that I wasn’t stressed about certain things, I was, but something changed in the way that I viewed the world.  All of the sudden, it wasn’t about me.

Perspective continued.

I didn’t care if people gave us money to help out.  I thought about all the other people that go through this and don’t have good insurance.  They lose stuff but they don’t have a safety net to keep them from being homeless.  The American Red Cross helped us out with immediate stuff.

I began to think that we don’t need help, what about all the people in Haiti that are still homeless and suffering.  What about all of the people suffering in the Congo from years of rape, theft and genocide?  Shouldn’t they come first?

But I just accepted what was for now.  We found a hotel to temporarily stay in and got the essentials for the family.  Our family was safe.  To Mary and me that is all that mattered.  For some reason, that instinct of providing monetarily for our family has turned into providing for those less fortunate even at the expense of us not having everything we need or mostly want.  Yes I have these crazy dreams about what I want in life, but in the end they just don’t mean anything while people are suffering.

Marriage counseling that day was very emotional.  It was our first session.  I have so much pent up anger, sadness and grief that it has affected our family life.  Being in bed most days is alienating me from the family and I am not giving Mary what she needs, which is to fight harder and be more present to her and the family.

We go again this week.

It is tough when you realize that there are parts of your life that you can’t control, that are invisible like my illness, but that doesn’t mean that you can’t somehow dig deeper and try to be more present with your family.  At times, I feel like they would be better off if I was in a facility that helped take of me until I got better, but I realized that I may not get better.  It may not be in anyone’s control to help me or make me better.  I am just going to have to dig deeper to be more of the person I used to be in spirit and love.  It is going to be hard, but I want it to work, I feel like we both do.

And not just for the kids, for us and the love that started this marriage, this friendship.  It will take time, but we are trying and I have a long way to go.

With everything that has been going on, an old project that I want to get off the ground has re-emerged in my thoughts.

I bought the domain name mindblind.org a while back ago with an idea of what I wanted to do with it.  It is on my andybarwick.com site.  I don’t have a physical mindblind.org website yet but it is on the list of things to do along with becoming a 501c non-profit organization.

I want mindblind.org to be a facilitator for those with invisible illnesses to get the help they need through the various organizations out there.  I want to awaken people to this epidemic that is growing of people suffering silently and unknowingly to the public eye.

There are millions that need help even if that help is just for people to know and trust that they are suffering pain and illness and not faking it or lazy. I really have a heart for this now.

There are so many people that write to me from around the world that suffer enough from pain and disease, they shouldn’t have to suffer from people doubting what that their suffering is real and present. For those that would like to help me get this off the ground and keep it going please contact me for further details.

There is so much that I have to be thankful for ending this year 2011.  Yes, it has been a difficult one but I have survived a very tough surgery and we are surviving a tough life.  People have given me hope that humankind has not lost empathy towards others and we are not completely a society turning inwards.  In fact, I find with many people the exact opposite.

In this year of tribulation, many people have found their own perspectives on how humanity can grow and give even in a down economy.  This makes you believe that as things get better that we can keep this going to help others get back on their feet.  The ripple effect is that people helping people increases the number of people able to be productive to society, increases the number of people helping others in need and it just keeps building.  It ends or begins to decline when we lose perspective and look solely towards our wants and needs.  I’m not expecting a world of Mother Theresa act-a-likes, but I do hope for improvement.

Slow and steady.

For those asking how they can help us, here are my suggestions; first help others in greater need.  Right now we have needs but we also have some resources like our insurance to help us back on our feet.  There are so many people that are not so fortunate.  There is a single mother here in Beckley that suffered our same fire fate but did not have insurance.  People like this need our help.

If you would like to help, please contact organizations like Appalachian Community Mission and speak with Ryan Snuffer.  There are many families in need like the single mother and this mission could use your help.  They are a 501c non-profit so you can even get a tax deduction for your help.

If you can’t give financially, remember that acts of service are needed as well.  Money helps buy things but it doesn’t physically build or move things.  Acts of service are just as important.

So my hope this Christmas is that people will give more and have a few less presents under the tree for themselves.  I keep pointing back to one of my favorite songs right now which is by Sara Bareilles called “ Love is Christmas”.

It is the epitome of where we are and I encourage those that enjoy the song to buy it and gift it to others.

Thanks to all those that have supported us this year.  I am expecting things to change in 2012 both in my illness and in what I give back to this world.  My only hope is that I don’t get stuck back in a swamp without perspective.

I have been richly rewarded with that this year with much more than perspective and I don’t want to lose sight of that.

Since my scoliosis surgery in August, I have lost three close friends to extended illnesses.  Scott died after a long history of complications from Type I Diabetes.  He was my age.  Cindy passed away after a lengthy battle with breast cancer.  She was my age.  And then the toughest loss, my dad, passed away after a long battle with the complications of Diabetes as well.  This has been an extremely tough year in terms of seeing suffering and death first hand.  I haven’t noticed people really living as much as I used to.  It seems that the life is somehow being drained from them.  Maybe it’s because of economic strain, world anarchy or just that things don’t seem to be going well for most of us.  It seems like we are living shorter and dying longer these days.  Suffering is growing probably because we focus too much on “sickcare” instead of “healthcare”.   But even in a perfect system, suffering will always exist.  Things will always elude human awareness and answers.

After my surgery, I felt enthusiastic about the loss of all my previous disease symptoms.  The only pain I felt was the intense pain from scoliosis surgery, but that is certainly to be expected.  After Cindy died, my dad died a few days later.  The day after my dad’s funeral, I started feeling some of my previous symptoms blink in and out kind of like a wire with a shortage.  I had felt this before but chose to ignore it and try to stay positive.  The surgeon told me that as the nerves in my back started growing back together we would know for sure if the old symptoms of central pain would return.

I hate to even talk about it but my old symptoms of systemic central pain are returning.  So along with a pretty healthy pain level still from my spine healing from surgery, the old pains, the numbness and tingling and the extreme fatigue are setting back in.  Most days my body just shuts down at some point and I fall into a deep slumber.  I lose track of time and wonder how long I have been asleep when I finally do wake.

The one thing that I do have going for me is that no doctor has proven a definitive prognosis and with my symptoms that means that I could potentially live like this a normal life span.  The thought gives me great pause as it should.  The thought of living the rest of my life in this condition is something that I have thought about before, but only as a worst case scenario.  I am trying to get more help with the NIH and any other facility t.hat helps with rare disease research.  I am still determined to fight because I refuse to let this be it, to let this be my reality.

I have had a lot of time to think lately and I have so much that I want to do.  I want to get back into photography and making documentaries, get a small house at Serenbe with a plot of land to have an organic farm.  I want to expand helping others with rare and debilitating diseases and also those that just need help.  In helping others, he helps me forget about my condition if only for an instant.  I am not sure if that is a good reason to help others but I am going with it.  I close my eyes at night and I envision the farm at Serenbe Farms, waking up early to take care of my garden.  I come in for breakfast and rest for a spell, maybe answer a few emails from those out there suffering and searching for hope.  I take my new Sony SLT-A77 camera and work on a few documentaries to bring awareness to issues that have been abandoned or orphaned by our society.  After all, if you’re not in it, you’re not in it.  I would travel to speak on behalf of others at conferences around the world.  I would distract myself from suffering with all the things that I am passionate about.  Oh yes, and music and songwriting fit in there somewhere.

This all sounds great coming from a guy that has been bedridden for three years.  And oh yes, neck deep in medical and living debt.  But those are just things that I want or things that I dream about.  I don’t need these things to live.  All of those things would require the intervention of several hundred thousand dollars and I just don’t know people that pass out things like that.  If I did, I’m not sure I would use it for that anyway because there is so much suffering out there.  There is the great dilemma.  Where does what you have for yourself and what you give to others begin and end.  It is easy to get lost on the end of your needs and completely lose sight of what you wanted to do in the first place, help others.  I think the answer is different for everyone and is found within one’s own soulful reflection.

I am trying to get moving again.  Life is just hard right now and that’s ok.  Life is hard for many of us, but we can’t dwell on the things we can’t change.  We must fill our minds with good things, mindful that things can change no matter what the situation is.  We just have to Be Strong and Take Heart.  I miss you Dad.

Yes, I’m still here for those still listening.  I haven’t written since my August 30th surgery because of so many reasons.  I never knew that this would be one of the hardest things that I have ever had to fight through in my life.  First and foremost, the surgery was a success.  I go back to New York next week to get checked again by the surgeon to make sure everything is growing correctly and that the new vertebrae the doctor built for me on the fly is healing well. 

I want to thank everyone that has been praying for us.  I tell you that I have felt the hearts of so many asking for mercy for my condition and a new life for my family.  I feel like every week I am getting stronger and better.  One of the good things right now is that since my immune system is occupied with such a massive healing, my immune system is not overrunning my nervous system like before.  The central pain that ran throughout my entire body has disappeared, at least for the moment.  I’ll take it the break even if it is temporary.  For three years non-stop, I have been bombarded by the suspected NeuroBehcet’s and its relentless attack on my body. 

It is a good thing too because the massive pain from the surgery made that pain dwarf any pain before the surgery.  I have had to learn so many things again like rolling over, sitting up and yes I am walking again!  I use a cane and I have to limit the amount of time on my feet but I am feeling stronger every day.  I am not going to get into the details of recovery from start to finish.  Much I don’t remember and what I do is something that will never leave my conscious mind both horrid and moving.

I have felt some flashes of my old pain just to keep my hope in check, but right now I am just enjoying the tradeoff of strong back pain versus complete body pain.  It is to me a miracle even if it leaves tonight and most certainly if it disappears forever.

Recovery is slow, painful and depressing.  I need those that don’t mind to drop me an email.  You can call but it is harder sometimes for me to gather myself for a meaningful call.  So yes, it is Andy again, asking for you.  I need you.  Forgive me if it takes time for me to respond but please know that whatever you do even if it is just to continue to quietly keep us in your thoughts and prayers I’ll take it faster than a Cinnabon at the food court.  Our financial needs have grown, but I can’t ask for anymore in good conscience.  Most have given more than they can and the debt seems growing and insurmountable.  Thanks for helpings us so far.  One step at a time will we get on our feet again someway, somehow, someday.  Let this moment just be a moment of thanks for my life floating up instead of sinking fast, if even for a season.

Much love to so many – Andy