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Today has been a very good day pain-wise so far.  It is a bit frustrating that I still don’t know what causes a day to be better or worse.  But I’ll take any good times that come my way.

I am still continuing to learn daily. Such as squatting as a pain-free alternative to bending over.  And using my elbows to ease myself down onto the pillow in bed so less strain is put on my neck and shoulders causing less pain.

I am truly realizing what all of the complaints about lack of after-care mean. My doctors provide reasonable care but I imagine they are just as clueless as I am.  While there is a common set of symptoms that may indicate CM and/or SM, not everybody experiences them.  I was recently reminded by a Facebook friend of this when I was feeling down as she mentioned that her husband’s head pain lead to a diagnosis while in my case there was no head pain but instead back pain.

It almost tends to isolate you if you aren’t careful. There are certainly fantastic support groups and people out there who are on a similar journey as you and can empathize and provide strength and support.  The fact still remains however that we are all on an individual journey.  Our symptoms are similar but not the same, the surgeries performed to alleviate the symptoms are also different.  There is no standard way of performing this surgery, it is really left up to each surgeon’s theories, creativity, and style. And of course our recoveries all look very different in many cases.

My parents are coming tomorrow to help support me and provide some relief for Adri.  I think I can honestly say I have never looked as forward to them coming before as I do now.  I am constantly overwhelmed at the level of support and encouragement I have been receiving from family and friends.  It causes such emotion just thinking about everyone sending thoughts, prayers, get well wishes, and going out of their way to help.  I can’t help but think every time I look at the mantle and dresser overflowing with cards that I don’t deserve this.  It is almost incomprehensible to me.

As I have  stated in previous posts I strongly believe everything happens for a reason.  While I can never fully understand the reasoning behind this trial, I do believe I have learned the lesson I was meant to learn. My priorities have been drastically wrong for a very long time.  I have known this but was never willing to admit it before.  Looking back over the past few weeks at everything I had wanted (and needed) to accomplish, it is just a dramatic illustration of this fact.  I have been stubborn and selfish for a long time.  When I am brutally honest and look at where I have been focusing my time on personal projects I am ashamed.  Focusing on the accomplishments I have had on the projects I have spent the most time on recently, my reaction is raw.  So what?  What does it matter?  That is meaningless.  The things that have true life value and needed my attention were instead left at the bottom of my list of “to-dos” and neglected as always, telling myself there will always be time to get to them later.

So what do we do when we finally come to realize we never gave proper attention to those things that we should have excusing ourselves by saying there will always be time later, and we realize there is no more time?  There is nothing left but regret.  I can understand now in some fashion how somebody can get to the end of their life and regret the decisions they made and the way they spent their time.  Fortunately, I have time to change this and adjust.  While I may have less “good times” to “accomplish” things when you focus on what truly needs your time and attention suddenly there seems no sense of good or bad times or accomplishment.  The truly substantial and meaningful things in life aren’t task oriented.  Will you honestly look back on a time in your life when you made the “right” decision to spend time with your spouse as a bad time because you were in pain and it wasn’t a good day from a recovery sense?  Likely not.  You will cherish those moments more than when you were having a good day but chose to spend your time poorly.  Likewise would you have love your spouse or spend time with your family as an accomplishment on your life resume or a task on your checklist? No, just framing it in that context immediately cheapens the experience and meaning of the moment.

This time in my life has allowed me the most internal reflection and personal evaluation ever.  And has been the biggest test of my faith and my character ever.  It has also brought me to a true understanding of what the phrase “born again” means.  Growing up you hear this phrase tossed around a lot, many times casually and seemingly without meaning.  I always wondered what that meant.  Growing up with faith in a Christian household I always had my doubts because I had never had “the experience” that everybody talks about, something to remember where something snapped and you saw life differently and new everything was going to be different from now on.  I have outwardly done what I was supposed to do, followed the checklist, the whole time wondering when there would be more and if I was missing something because I just couldn’t seem to achieve that close relationship or comfort with God that the “born again” speak of.  Today I understand.  The convergence of several events including these thoughts today has made me understand.

I enjoyed a visit with our pastor Matthew today who briefly explained the scriptural background for anointing for healing.  He then anointed me while saying a prayer for healing.  The portion of this whole experience that stuck out to me was the portion of the prayer where he prayed for the spirit to come on me anew.  That has stuck with me because it made me realize that has been my prayer this whole time.  But I wasn’t doing my part.  I said come on in but these doors are locked, you can’t go in there.  And I know you want me to change these things but I feel really comfortable with the way things are and we can worry about that later.  It doesn’t take long before it is obvious your welcoming words are just that …. words and your actions are really not welcoming at all.

So today with all of the trials I have been through recently, the meaningful moments I have experienced, the introspection, I truly feel I understand these words I could never make sense of before.  I admit my faults and while I know I will never be perfect I am tired of the way things are. I do feel “born again”.  I see things, and feel things, and understand things differently now.  Things that had been there the whole time but I just couldn’t seem to grasp.  And after all of the failures and rawness is stripped away, the only thing left is …. hope.

Yesterday and this morning have probably been the most pain I have been in in my entire life.  I have never experienced a headache and muscle pain like this before.  I guess the honeymoon period is over and I am now experiencing what Dr. Zomorodi has constantly been reminding me is the most painful surgery he does. This morning I awoke to my wife making my favorite breakfast and playing our favorite Christian songs.  I guess I am just an emotional basket case but I find myself pondering each song and bawling my eyes out.  Just reminded by each how I have taken everything for granted and not lived the life I should have and wanted to have lived and how merciful God is that he would take back the least deserving (over and over and over again).  However I know with my stubborn personality this is exactly what I needed to bring me closer to him and there is always time for a fresh start.  No matter how hard this trial is if it brings me close to him and puts me back on the right path I wouldn’t have it any other way.

I went back with Will and Matthew for a pre-surgery prayer session. Will found comfort in the calming words Matthew offered. I stayed with Will until the first series of anesthesia cocktails were administered and they took him off to another pre-op waiting area where the breathing tube and head confinement gear would be put in place. We were just paged again and informed that the surgery is now underway. We’ve been here since 9:30am and they tell us that Will should be done with his surgery and in the ICU recovery afterwards. Lots of nervousness and jitters were in place for both Will and myself this morning, but we know that God has everything under control and that we will have him resting calmly soon and on the road to recovery in no time. Thanks to everyone for your continued love and support. Will update you as soon as we get more information.

I suppose during those really tough times in life everyone is prone to some internal reflection. It is natural to draw inward and reflect on your relationship with God and have regrets that you have not done as well as you could have and should have.  We all are fallen people.  As I drove in to work today I was again reminded how blessed I am to have such a strong support network going through these tough times.  A myriad of thoughts passed my mind and I just had to write them down to capture them before they were forgotten.

I may not know why this is happening but I am firmly convinced that God is in control and it is happening for a reason. I can’t fathom how somebody could go through something this tough without that faith and belief. Because of my faith I trust that God will take care of me and everything will work out well in the end. Because of my faith I know that even if everything doesn’t turn out well in the end God is in control, it will happen exactly as he has designed, and there is a purpose behind what happens.

I am also a firm believer that God uses trials and tribulations to draw us closer to him and that for those of us (like myself) who are very stubborn, the trials are often more difficult to manage.  I know that with my personality if everything in life were going great God would take a back seat and I would think that I do not need him.  It is sad to say that many people naturally fall under that category of only calling on God in great times of need.  I believe God allows these trials in our life as a constant reminder that we do need him.  2 Corinthians 2 : 7 – 9 have been my mantra in this belief.  In this passage the apostle Paul is quoted:

To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me.  Three times I pleaded with the Lord to take it away from me.  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”

This is a very powerful and loaded passage to me.  There has been a lot of speculation on what this thorn in the flesh is but that is beside the point.  While most of us may have not had a surpassingly great revelation, I believe we all suffer with one or more thorns in the flesh as a constant reminder that God is in control and we are weak humans who are in need of his fellowship, mercy, and healing.  It is a reminder that we are saved by grace not works and that it is okay if we are a mess.  To God we are a beautiful mess.  We will all fall down but we will be fine as long as we realize the important part is that we get back up and continue moving in the right direction rather than continue to lay on our face wallowing in our failure and self pity.  It is also a reminder that God uses the most horrible things in our life for his glory.  Certainly we should take notice when someone who has seemingly never had difficulty says I am truly blessed and God is good.  But to me the most powerful stories are those where people have a sordid and scarred past and say I was the lowliest of the low, not worth anything in people’s eyes, I have done horrible things, but God saw me and loved me anyway and has really turned my life around.  It may sound crazy to others but I believe that without weakness and tribulations our character is never truly tested and our witness is weakened.

I also believe that God has had a strong hand in these current trials.  Many may consider it coincidence but I consider it Providence.  I will give you just a few examples although I could really go on and on for a long time.  Before I was diagnosed with Chiari and Syringomyelia I was struggling with back pain and looking for alternatives.  My mother-in-law suggested a DO as an alternative to a chiropractor.  I asked my doctor about it and lo and behold there was a DO in her office although she informed me that they were very hard to find in NC.  Fortunately for me he did not do neck, head, and upper spine adjustments.  I did not know at that time but that would have been disastrous for somebody with Chiari.  I now know that if you ask a reputable Chiropractor to do a neck, head, or upper spine adjustment and they are aware you have Chiari they will refuse to work on you.  I have read the phrase “like throwing a match in a gas tank” in regards to having adjustments. The timing was also fortuitous as we are now beginning preparing to begin the adoption process.  I can’t imagine how tough it would have been on my wife if we had actually adopted a little one and she suddenly had to take care of both me and an infant.  Or worse if we were notified that there was a baby we could adopt but we had to turn down the adoption and put the process on hold to sort this surgery out.  I have no proof but also now believe that our previous miscarriages may be partially if not fully my fault simply because there is no proof but much evidence that Chiari is hereditary and many Chiarians have children with Chiari as well.  I can’t help but think it is not coincidence that our pregnancies terminated at the exact same week and day each time and it just so happened that this was during the beginnings of the brain development stage. Also the fact that I have not had the opportunity to take a vacation and have plenty of sick leave and vacation leave built up and that my wife works from home so she will be much better equipped to help support me post surgery is very helpful.  As I said I could go on and on about how all the pieces of the puzzle just have fit together perfectly.

I have also been very blessed to have such a strong and supportive Church family.  We are a small group but a very close, devoted, and supportive group.  If you are in the Durham area and are looking for a church family you should check us out at www.peacecovenant.org and www.facebook.com/peacecovenant. While I live in Wake Forest my surgery will be in Durham and the support and well wishes I have received from my Church and Work families has been humbling.

And lastly I will be loading up my iPod in preparation for surgery with some inspirational music from Casting Crowns which is my absolute favorite Christian group.  If you have not heard them before I would highly recommend checking them out.  I have always struggled in the past with thoughts that God could never possibly love me because I am not good enough.  At a particularly low time I heard my first Casting Crowns song “East to West” which was and continues to be a good reminder and immensely helpful.  When going through life’s trials their “Every Man” and “Praise You in this Storm” have gotten me through and continue to be my favorite songs to date.  Possibly because those are the first I heard or possibly just because the message in them is so powerful and meaningful.  At any rate I will be loading them up this evening to try and keep me going strong and positive throughout the surgery and recovery.