Inspiration on a difficult day

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So, I haven't posted much lately.  Last time I wrote something about my progress and the very next day a bad wave hit.  I hadn't declared victory or anything, was just acknowledging how far I had come..... so, today, I do not write this in a window or have any real reason to write it other than to share a profound experience I had.    I had an 18 day window - and it was amazing - 90% of each day - I could almost forget this was going on - from a neurological perspective.  From a physical perspective - an entirely different story - I have watched my body be destroyed in so many ways, yet cannot allow it to impact my brain or I will not heal.  I am not sure how I've managed this.  Don't get me wrong, I feel distress and hopelessness but I am not allowing it to raise my anxiety and deplete my precious GABA reserves, which is a small miracle in itself.

 

So, the profound experience was watching a movie that I had seen advertised last year that I wanted to see and didn't make it to the theater.  Mind you last year my life was normal except that i had 2 broken discs in my neck that needed to be repaired.  I had c-spine fusion surgery and so began my journey into valium withdrawal hell.  The movie is named The Shack.  I used to be religious.  Was raised that way and went to church most of my young adult life till 35.  After that I got very ill and was hit with one thing after the next and so I lost faith.  When I saw the movie advertised, I wanted to see it because it was clearly a movie about restoring faith.  Now, I DO NOT recommend watching this movie unless you are on fairly solid ground because it will shake you to your core.  But rather than watching the movie through the journey of the lead character, I allowed myself to be the lead character and tried to see what "lessons" I was to gain and walk away with.  There were many many powerful moments where I sobbed really hard as I acknowledged what those lessons were.  It was pretty painful actually.  But I finished the movie feeling very different than when I started.

 

Today, I look in the mirror and see 2 near bald spots at the front of my head that cannot be hidden.  My huge thick head of hair is gone.  I look at my face and see 18 very deep and painful cysts that cannot be concealed with any amount of make-up.  It hurts to talk and eat they are so deep and painful.  My skin was like porcelain before WD.  So, believe me when I say the take away message is not falling on someone who is sitting here at the top of a window, feeling amazing but rather someone who got ZERO hours of sleep last night and was physically trembling.  The muscle jerks and blurry vision have returned, the internal shaking / vibration is back.  The tinnitus has been non stop since week 8, etc.,  I know this is long winded and you are wondering what the point is.  The point is that for 10.5 weeks I've sat here and researched for hundreds of hours what is happening to me.  Everything defies the "science" I spent my entire career working around.  I keep thinking "healing doesn't happen this way - science dictates some kind of intervention must be done"  yet it's clear NO scientific intervention can or does heal this.  What may heal this, is faith that we can heal ourselves.  Faith in a higher power, faith in ourselves, faith in the process, faith in power of mysterious healing. 

 

I spent my life being a perfectionist and it was exhausting.  I'm 42 and have never allowed myself to just not care or be myself but rather always had to ensure everything looked and seemed perfect to the outside world.  Well, I am no longer the model looking cover girl I was in June of this year.  I've been broken down in every way.  And the pressure to recover and be "perfect" once again was an immense feeling.  I had profound moments during this journey knowing my healing may mean I am just different and not that person I once was.  I have to have faith that healing will not leave me in the current condition I am in but will instead look quite different.

 

I look back at my 18 day window with extreme gratitude that there were so many signs my brain was healing.  I hope this wave doesn't last very long and that soon enough there are signs of physical healing in addition to neurological healing.  I would love for my tachycardia to resolve , having already survived 2 cardiac ablations, I cannot imagine enduring a 3rd.  My body rejects all medicine so I can't tolerate a beta blocker.  I cannot tolerate any antibiotic to try to help the acne, etc.,  I made notes of the major "aha moments" I had while watching the movie and will read those notes over and over and over again.  Those thoughts and beliefs will be the pathway to my success story.  Perhaps the most important message in the movie is "we are not alone in this"..... that really made me cry because withdrawal is isolating in so many ways.  But we have one another and a higher power if we choose to believe in one....

 

When you are in a good place, even if you are not religious, see if you can watch the movie and maybe you will come to some really great realizations for yourself.  I wish us all continued healing and the strength to face each day and night knowing the challenges we must overcome.  I probably still won't post much.  I realize that the answer to any question I have is - no one knows - it just takes time and patience.  But, I will look forward, once I am healed, to posting more to provide reassurance to those knee deep in it.  A few "graduated" alumni of this site have been kind enough to correspond with me and push me along and for that, I will be forever grateful and hope to pay if forward   

 

 

 

 

 

 

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You will get that window back soon! I agree it's only faith that can get us through this. I have learned many lessons. Not to take anything for granted ever again no matter how small...and always appreciate life no matter how hard because it can always be much much worse. I will try to watch the movie when I'm able to. Hope your day gets better! 

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You hit the nail on the head Faery23!!  one of the many points in the movie is to stop rushing to the destination but enjoy the journey (obviously i'm not referring to enjoying the benzo WD journey but rather a vacation or time with your family, etc.,).  Another point was to stop jumping to judgements or conclusions but really think things through. Another one was challenging us about how invested we really are, how much are we really giving of ourselves versus going through the motions but most of all - definitely never take anything for granted.  i had an amazing life before this.  I got to travel the world, go on amazing vacations, had amazing friends, have the 2 sweetest, most precious nieces on the planet and while i understood that - i am not sure i really let it sink in as much as it could have.  So, when I am healed and ready to participate in life again, I will be entering it with a very new found perspective and cannot wait to really thrive and take it all in.

 

The movie was so good I'm actually going to watch it again now because there was a lot to take in and I want to really make sure the messages sink in.  I am fortunate enough to be in my house and not working where I can do this.

 

The events of this past week with the hurricane hitting houston definitely made me sit back and take immense gratitude for the fact that I am not being displaced from the privacy of my house while going through this difficult time.  My heart goes out to all the people impacted by the hurricane.  Imagine the stress of having to flee dangerous conditions while going through this..... so, even if you are having a horrific day, that is one thing you can step back and be grateful for.

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Yeah there's no way to enjoy this journey for sure lol. The best we can hope for is to accept it and to someday be able to use our experience to help others. I have never really had an easy life between personal, health, relationship and financial issues it has always been somewhat of a struggle but what I wouldn't give right now just to be able to have those normal everyday problems back! Still have all of that on top of this going on so it's definitely not easy by any means right now. If I am given another chance at really living again I will truly appreciate every moment of it even the not so good ones. After this we will not fear anything! For today I am grateful just to still be alive even tho it is very difficult.

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I saved the movie title for someday when I'm ready.  I am SO sensitive to everything and have not been able to watch the news or look on Facebook for about the last 5 months.  I watched a show on Netflix a while back and regretted it.  It disturbed me and the theme song became my repetitive looping song!  Not that the movie you're suggesting would be that way.  It sounds like something I will like.  Faith has really helped me keep hope alive although it hasn't been easy. Lately I've been watching the Andy Griffith Show wishing I could live in Mayberry lol 

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i hear you moment - Gladiator was my all time favorite movie - have probably watched it a 100 times but cannot even remotely watch it now...... anything with violence really or fast moving scenes, etc.,  when i am in a window - i seem to do fine with most forms of TV, movies music etc , when a wave his - there are far more challenges.....  for a long time i didnt go on Facebook because it was hard to watch everyone else living life and feeling like i was missing out but just recently i started going back - i feel like i need to stay connected with what people are doing so that i can jump back in when healing is complete..... no doubt our survival strategy could change day to day depending on what is happening in our sensitive brains..... but we get stronger each day we survive this