Sunday, November 16, 2014

Dearest darling me: Letter A and letter B

When I have had big moments in my life with huge expectations I write myself 2 letters while I am still sane.  Because I get so crazy excited about stuff and run miles ahead if things don't work out I land up absolutely crushed and lose all perspective.   I helps to go back and read the: So it didn't work out but you still OK letter.

When were wrestling over the fight for our 4th child we dealt with the ups and downs of adoption and then decided to go IVF due to the vasectomy and it was a crazy emotional time for me.   I was desperate for my 4th, my last piece of my puzzle.  Gary's puzzle was already complete.  After calling off the IVF as it just didn't feel right we were back on the adoption path.  She was 2 and her name would be Anna and I would use the princess curtains that her sisters had used when they were little.  Gary warned me not to run ahead but I was already dealing with how my black daughter would cope in a mostly white school.   I prayed for her as she was already born and I didn't know her circumstances. I even typed her letters that I would paste in her baby book so she would know how wanted she was like her siblings.  I knew Gary wasn't that keen but I was so wrapped up in this fantasy I forged ahead even going to the orientation at the agency.   And then he said a simple sentence that ended it all:  You can any dog you want if we don't have another baby.

A dog?  So you willing to get the Jack Russel you don't want and I do so we don't have to have that 4th?  Right Mel, grow up and get real and forget about this make believe daughter because forcing your partner to take on a child that already has rejection in her life is just stupid.  He would have, for me, but that's not enough.  I gave up the girl that I never had in the 1st place and I went away for 2 days to deal with my anger and grief and irrational feelings of loss.   Anna felt like a God thing.  Like He had this person out there and I was going to be her mom.   Anyway, just typing this makes me want to cry.  I clearly need to go and read the So it didn't work out but you still OK letter.

I did letters for Singapore too.  One for going and one for  So it didn't work out but you still OK.  I had that worried feeling all the time but with 3 weeks to go you allow yourself to relax.  It was f*cking devastating not going.  My Dystonia is my permanent reminder of that huge trauma as it was after the great big non move that my wheels came off and I went on the anti-dep that cased the Dystonia.  That company will never know the true cost of what they did to us.  We apologize for the inconvenience caused.  REALLY?   Oh, no worries, relocating a family with 3 school going children and your one dog (that would be the jack russel) and re-homing your other dogs and and and....    So I had that letter.

And now its time for a 3rd but all of a sudden I am thinking the other 2 didn't work out that well so do I write the letter?   Will it even help.  Mmm, I might still.  Its about my big triathlon race btw.  One is for me making the cut off in time and completing the whole race holding my medal in amazement.   The other one is for me not making cut off.  For pushing and fighting and sweating along that bike course but time runs out and the truck comes and makes me stop and loads up my bike and then swerves as crazy me is now in the road lying in front of the truck broken because I didn't make it.  I know I sound melodramatic.  Imagine training for 5 months (lost the 1st month due to bike accident) 6 days a week and you don't make it on race day?  In my head I know no one will say I was useless or a loser or a failure.  The logical side of me knows this.  I am a non athletic 43 year old with osteo arthritis, long term damage from Sheuermanns Disease and Oro-mandibular Dystonia.  I can only do my best, it is all I have.  On paper I am not the horse you want to bet on.  BUT, I will tell you one thing.  When it comes to determination, commitment, self-discipline and hard work I am a damn podium winner.   If I don't make it I will at least know in my head and heart that I could not have tried any harder than I did already and I really hope I will be wise enough to be kind to myself.  

PS, I know you all want to say of course you will finish but the reality is I am very slow on the bike despite doing all the training so while I might very well finish but I also have to consider the possibility that I might not make it.  I am praying that God honours my hard work and everyone will remember 2015 as the year the wind did not blow, the sea was calm and race conditions were perfect.  It was the year Melanie Loebenberg Novitzkas did her 1st and last ironman70.3 and finished it.    

Thursday, October 30, 2014

50 shades of blue

I have many days when I want to stop studying and I have days when I wonder if I will even use this degree I am working so hard for.  If somehow I don't finish it or I never actually practice I will probably regret the amount of time it has stolen from my life but never the knowledge it has given me.  I am a thinker by nature.  I love to ponder about stuff and although I am not great with current affairs locally and around the world, I am great at knowing what makes people tick.

My fascination with the human psyche and why we do what we do and think what we think makes my degree perfect for me.  Always one for the underdog and very justice motivated studying social work with psychology as my 2nd major seems like the ultimate fit.  On November 14th I have been a Christian for 15 years.  It has been amazing journey of self-discovery and God discovery.  Knowing so much less than I did 10 years ago re God means He gets to surprise me every day.  I no longer force Him to fit the picture painted by others or know Him through others.  I know Him spirit to spirit, raw and real and gentle and kind and fierce and loving.  Many times I just don't get it and that's OK.  As I have mentioned before I can no longer really call myself a Christian according to the world's definition and based on the gross misrepresentation of who God is, I am quite happy to be known as a seeker of Christ.  Someone who doesn't have all the answers and whose truth a decade ago has changed and will change again in another decade.

Can you imagine painting the ocean and the sky in 1 single shade of blue?  It would be flat and unreal and one dimensional.  Painting my daughter's room lately inspired this post as we went through many, many shades of blue till we found the right one.  What if your truth was your perception clouded by the opinion and lessons of others and left unexamined and unchanged?  What if your truth was simply one version, one of the shades of blue?   Imagine borrowing the colour of another to add to your picture, mixing the paints and shades and textures.  I am not an artist by any means but the visuals of all these blues really represent different interpretations and truths and when we open ourselves up to a wider view we get to experience some incredible things.  We see and know sides of ourselves and others and God we didn't even know existed.  The proverbial cast in stone becomes fluid and alive as we grow and learn and morph and change and toss things out and add others in.

I know for many Christians they think opening yourself up to other ideas and beliefs is considered dangerous.  They feel safe and comfortable and 100% sure that their blue is the only real blue.  They consider people with other shades to be blind or deceived or confused.  I am not judging them and in some ways it must feel very secure to be so sure of something but I was never that person.  Because I say so never quite cut it with me.  Why?  Why do I have to be this, say this, act like this, dress like this, watch this and not that, read this and not that?   Jesus obeyed God, not the rules of the day or his Jewish rulers.  I am lucky to have so many like minded friends who are also open minded to all that life has to offer.   We obey the basic rules or try to anyway.  Be kind, treat all people with respect and ensure we all have the same rights, love others, love yourself, love God.   

My old lady hands and less firm skin is the not so much fun part of getting older but the contrasting increased elasticity of my mind and thoughts and ideas more than makes up for it.  But enough random waffling on, time to get back to my books and learn new things.  Exams next week! 

Saturday, October 18, 2014

Introducing Pricilla-Mavis-Serelda

Firstly let me apologize for my somewhat inappropriate FB status update today.  For those who read my blog and are not FB friends I wrote about this fantasy I had while on my long training cycle.  Let me give you some background info pre FB post: The cycle was far and hot and full of rolling hills.  My legs were aching and my butt and girl bits squashed and bruised.  Basically I was having a lot of non-fun and passing an injured cyclist being worked on by paramedics on the side of the road with ambulance waiting did not add much positivity to the experience.  I also knew come the end of my 80km cycle I had to run 8km in the blistering noon day sun.  Why on earth would I subject my 43 year old body to this mare you may ponder?

Well its because in a moment of foolish bravado, I entered Ironman70.3.  I did my 1st open water swim last Feb, taught myself to run in March and got my bike in June.  In October last year I did my 1st sprint Triathlon and I loved it.  I have done a few since and somehow had convinced myself I was now a triathlete and wanted to really challenge myself.  Take yourself out your comfort zone Mel...do something exciting that scares you.  How about a 1.9KM swim followed by a 90KM bike on rolling hills and a fabulous half marathon 21KM in the hottest part of the day mid summer.  Well arsehole, are you happy now?  Scrawny, exhausted, overwhelmed and poor.  And too far gone to turn back considering the money spent on entry and accommodation and training.   This is VERY, VERY tough.  I have to swim 3 times a week, run 3 times a week and bike 3 times a week.  The cycling makes my shoulders knot and spasm so the pain has also sent me to strengthening classes once a week and Pilates once a week.  I also have Mondays as a rest day so do the math in terms of 6 days and 11 exercise sessions to get in.  Add 3 kids to the mix and my Social Work Honours degree and I am feeling pretty wasted.  I write my 1st exam on the 5th of November and I have not been very diligent lately so its time for some serious graft. 

OK so back to the fantasy.  Because I am a nervous cyclist and my shoulders are basically jammed tight I cannot turn around to check for cars.  I rely on my trainer to tell me when to cross and hope like hell he isn't having a suicidal day.  At the end of my cycle I get to a huge busy intersection and crossing it makes me poop myself.  Agatha (my other friend you know aka my anxiety) goes wild!  I imagined just going for it and crossing and sadly...I got hit by a car.  Clearly I can no longer train and do this mammoth race because I am now in heaven in my hammock on the beach drinking my frozen margarita while reading a really engrossing book.  I never quit you see, I just died.  People sadly remark how well I would have done and race in my honour.  So that was the fantasy, me pegging and no longer training.  I really don't want to die so no worries re sending my psyche around but today I did want to STOP.

But I am babbling on again which is frightfully rude considering I promised to introduce you to my friend Priscilla-Mavis-Serelda.  I know its a mouthful so I just call her PMS for short.  She comes to visit me for a week each month.  Sometimes she is chilled and other times she is very demanding.  I have tried to tell her not to come and used various tactics but she always finds me.  Despite Gary having the snip I am on the pill just to try and tame her.  It used to work well and she was less invasive and only came for 3 days.  Somehow she is back with a vengeance and prefers to stay the week.  She demands biscuits and chocolates and she doesn't like guys.  Poor Gary and Daniel become more annoying, even my swim coach Ryan gets yelled at across the pool.  She makes me want to cry, she makes me negative and she totally demotivates me.  My drive and ambition and positivity gets sucked right out of me and I am filled with doubt and just want to quit.  When I ran the charity I would want to quit.  My studies, my training, everything.  Just DON'T wanna play.  I am glib about my friend PMS but for the small percentage of the female population that have their own PMS friend, it can be debilitating.  It feels similar to depression and even though you logically tell yourself its just hormones, it doesn't help.  Obviously if anyone else tells you this you will react violently so its best not to ask if one is PMS when they seem somewhat temporarily bitter and twisted.

So I am sorry, I am tired, I am over emotional, I am negative, I am filled with doubt re my ability to finish this race and I am horribly PMS.  I will be amazing next weekend, I have a fairly long triathlon race on Sunday and I will be all amped and excited.  Right now though I am off to eat some more chocolate for Priscilla-Mavis-Serelda and find some family member who is willing to rub my shoulders. 

Sunday, October 12, 2014

Dilbert and my study path

You may have noticed I have not mentioned my studies much on FB lately.  I was on such a roll and then after the botox I got totally demotivated and haven't quite found my way back.  Speech and swallowing was just awful.  This is somewhat problematic as I write exams soon.

Having that annoying and exhausting competitive streak means I cannot simply allow myself to pass the subject.  I go for distinctions which means I have to work pretty hard for them.  19 subjects done, 17 distinctions earned.  Each semester I try and make myself chill and ease the pressure by allowing myself a comfortable pass.  Then as I get closer to exams I think race pace...lets ramp this up a little and see if I can do really well.  Its bloody exhausting and I wish I wasn't such a pain in the arse.  I can't even blame my folks as they never pushed us or forced or pressured us to do well.  I study on-line so its just me to compete against.  So now I have 3 papers to write and I really need to get stuck in.

I have been thinking about what I am actually going to do with my Social Work Degree once I eventually graduate.  Adoptions and fostering is one area that has a special place in my heart.  Then possibly working for Nurture again as I loved working with Mel & my sis and all the other super cool Nurture chicks.  And then a braver project which would probably require a few courses:  I become a counselor that focuses specifically on bullying and the effects thereof.  I teach parents and teachers and kids.  I visit schools and do talks.  I educate myself on the effect of social media bullying and I have a private practice as well to teach kids social and coping skills.  BUT...one little problem.  Yes, its Dilbert the do*s.  My US readers I can't actually write the word do*s because its really rude.  Its pronounced dowus but 1 syllable.  As you know Dilbert is the name I have given to my Dystonia.  One of the biggest problems is talking.  Its painful and tiring.  If you want to get an idea move your tongue around constantly and read something out loud at the same time while staying coherent.  I speak against my tongue and I concentrate very hard so that I don't sound unclear.   It is not a normal flow for me though and I can hear it sounds different although I probably sound normal to the listener.  Unless the person is just being kind?  I like kind, I will take it.     

Anyway, having a job where the main focus is talking is clearly not that fab when talking is the one thing my Dystonia affects most.  So what the hell to do?  Just give up my studies?  I am almost half way there.  Plus my hope junkie self still thinks God might just heal me overnight.  Or send a doc who can or some drugs or anything (God you just do your thing...ready and waiting!)  Studying can get boring and tough so to think I might do this for these 5 intense years and then not even be able to practice is just crap.  I can't give up though.  Can I?  Shit I don't know, it is pretty tempting as I get ready to hunker down and study my butt off for the next 4 weeks.    

Going to bed now.  Been up since 4.30am as we had to leave at 5.00am for the race today.  Think of all the time I could use to train if I stopped studying!  But we all know I won't stop, I have to remind myself even if I never practice the growth that I have experienced and things I have learned in the past 3 years has been literately invigorating.  As a seeker and thinker having my mindset challenged and learning new things and gaining different perspectives has been priceless and regardless of what happens, I will never regret the 3 years I have done so far.  Going to hobble off to my bed now because I wouldn't allow my poor body to take it easy on the race today.  Mind over matter... 

Wednesday, September 24, 2014

The Jesus loving non-christian

This post is about the Big R...RELIGION.  Actually it is about identity and spirituality too.  Before I debate the current, I need to visit the past.

I was born to a Catholic mother and an father whose own father was a non practicing German Jew.  My grandfather was a leader in the Jewish Youth league in Germany.  He spent some time in prison for his faith and along with his brother Ernst, managed to move to South Africa and avoided the concentration camps of so many of his fellow believers.  He did not marry a Jewish woman and did not practice his faith in SA.  I am not really sure what or who my father believes in but I know the past 6 years and all the shit our family have gone through along with losing my nephew Ben 10 years ago had him thinking.

My mom was born in Holland to strict Catholics and attended a convent in South Africa when they emigrated here.  Many of the nuns were cruel and unkind and the reason why my mom stutters to this day.  We were raised Catholic, got baptized, went to mass, had 1st Holy Communion and later confirmation.  My many questions re confession, the bible, the trinity etc were frowned upon by my catechism teacher.  I walked with God back then, I have always walked with him.  I never had a love relationship though and much of the Catholic guilt and rituals were part of the package.  After school I only did the Christmas and Easter thing.  And then at age 25 my Daniel was born and I came face to face with God as I grabbed my slippery vernix and blood coated infant and pulled him onto my chest.  This is your boy to raise, he does not belong to you but I have entrusted him to you.  I knew I would need to give him back to the world and he would have a specific purpose and role to play.  The gifts that God would bless him with would come with responsibility.  I still know that and so does Daniel.

Anyway, I looked radiant after he was born.  I could see something in my tired face, I could see I had experienced something life changing and it wasn't just becoming a mother.  Between trying to get the hang of mothering and dealing with a shattered heart and the sole responsibility of maintaining and paying for my home and raising my boy, I felt very deserted by this God who had paid me such a brief visit.  I continued to question though, to ponder and crave more.  I felt like I couldn't possibly be a Christian because I could never be that well behaved.  I had not learned the gift of grace yet.  I pondered about Buddhism as a maybe for me but mostly I ran after Daniel and healed that shattered heart I was left with.  When he was 3 I attended a Christian service at a church in Camps and that day it all changed.  Something happened and when I walked out the church with a golf ball sized lump in my throat it changed into a river of tears when a random stranger asked if I had enjoyed the service.  It was November 14th 1999.  Someone prayed for me and just like that I was now a Christian.  I learned plenty along the way, some I have kept and some I have discarded.  This post will get far too long if I go into detail so I will try keep it short.  I did The Alpha course which is designed for new Christians and I GOT it.  Jesus loved me.  Yes I know I sound like a sticker or a kids song but He loved me.  ME?  Non virginal single mother, weed smoking, lapsed catholic, prone to swearing on occasion, drinking too much at times ME.  In fact He thought I was incredibly precious and beautiful and fascinating and so worthy of 100% love and acceptance.  He might not love all I had done and was yet to do but me, ah, I was His girl.  For the 1st year I would sit in church and cry the whole service.  How could I be worthy?  Grace is one thing but for me?  The cross became more than a fashion accessory Madonna wore for her concerts.  This simple symbol represented that this gift of redemption and grace was not to be taken lightly and I had a second chance.  I had a constant guide who would ever so gently nudge me in the right direction.  And when I took the wrong path and would have to deal with the inevitable consequences, I never got an I told you so, I got a hand offered to pull me up and a new chance to try again.  Grace.

And then I got sucked into others opinions and rules and ideas of how it should happen.  Being new I questioned my own truth and it got clouded by their truth.  I followed the straight and narrow path for a long time but I always had questions and sometimes I would look back and wander if I hadn't perhaps taken the wrong path.  Could their be other paths leading to the same destination?  Other modes of transport?   I had the obvious questions too like how can the earth be 6000 years old?  Why can't creationism and evolution co-exist.  A world created by God and evolved over millions of years.  Many stories in the bible became symbolic because my rational sensible mind could not quite get 2 elephants walking side by side next to 2 beetles (we have 250 000 species, which ones did he choose?)    Did they watch all the people they knew drowning in this flood as they sat in their big boat?  The guy in the whale?   The lady turned to salt?  I have a hundred other examples.  I also struggled to reconcile the violent harsh God of the old testament who would kill all the baby boys under the age of 2 because they did not have a splash of red on their door.  Thousands murdered in wars.  Only a select few group of people who mattered?  Why were the others created?

Fast forward to 2014 and I have left that narrow path that only allow a few access to God.  That discredit millions of people as not knowing God because they call Him by another name.  Am I sad they don't know Jesus?  Yes, I want them to have that same love and grace and acceptance and not be bound by such strict rules and formulas and conditions of worth.  I love my church and I love the people who go there.  I love the worship and the presence of God that is so tangible there.  (And yes I know I can experience Him anywhere)   What I don't love about the greater church, is the deception.  We would rather have gay people deny who they are, lie to those they love and even deceive someone by marrying them than be who God created them to be.  We base their ability to parent on their sexuality.  We don't allow them to marry the person they love and some don't even believe they will go to heaven or can possibly know and love God.  I believe people are born gay and do not choose to be gay.  We find evil and sin where it doesn't exist.  We turn something innocent into something dark without even really questioning what we believe and what our gut tells us.  We are animals in spiritual captivity who have lost the gift of discernment.  Questions are seen as rebellion and disobedience.  When I read Eat, Pray, Love she spoke about forming your own religion.  We all have a one-on-one personal unique relationship with God so how can we have 1 exact formula.  It has taken me many years but I am in a place where I listen to my gut and what the Holy Spirit is telling me.  I always err on the side of love.  If I get it wrong and I stand before Him one day I would rather He told me I loved too much than be given points for blind obedience.  God is love, yet another sticker...  But He is.  He is magnificent huge mysterious all encompassing love, I just can't believe He sweats the small stuff like do your kids watch Harry Potter, or is Halloween evil, acupuncture, Tinkerbell or a hundred other random things people like to get excited about.  He is GOD.  He creates and He loves and He guides and He protects and He strengthens and He comforts.

PS, I love my friends Christian and non and those odd ball people like myself somewhere in between.  Please don't send me scriptures or try and convince me to squeeze myself into your shoes and walk your path.  I will get lost sometimes, stumble and graze my knee, skip along, walk, run and occasionally jump on His back for a piggy back ride but know the path I walk is my own spiritual journey with the very same God who walks with you on yours. 

Thursday, September 18, 2014

Handing over the baton

I am now at the grand young and old age of 43.  Some days I feel like I am twenty and I look down in amazement at the top of my hands which betray my age more than any other part of my body. 

Growing up we are given a title, an identity.  This sounds somewhat conceited so please forgive any inadvertent vanity but my role was The Pretty One.  The Model.  Mel-the-model.  I have always been a sensitive soul and a deep thinker so I took no pride in the fact that I was a model.  It hardly takes a genius to wear whatever the stylist has handed you and pose for a few photographs.  I never fitted the scene because I was quiet and shy and the dramatic me-me-me types I met who did my hair, my face, my wardrobe and took my pics basically ignored this quiet teenager who they probably dubbed stupid or boring.  I didn't care.  My face was my air ticket and my travel bug was insatiable.  I would shut up and smile and wear boiling hot clothes in summer and splash in icy water in my bikini if it meant I could see Paris, Milan, Madrid, Hamburg, Miami, Rio, Salvador.  I could sail on fancy yachts and ride horses bareback on the beach.  I smiled quietly on the inside and I took all the perks modeling had to offer as I protected my mind, body and soul from drugs, sex, gossip, apathy, vanity.  It was not a nice world.

At age 20 I quit.  Enough already of the BS of the business.  I had made enough money to be independent, to buy my car, to travel, to support myself.  Life went on but I knew I could use my looks in other ways.  I suppose if I was a die hard feminist I would refuse to be treated any differently based on the fact of being attractive or not attractive.  I am afraid I was more of a realist and I knew when it came to getting what I wanted being The Pretty One could be milked a while longer.  I met Gary at age 30 and I know looks are important for him.  He likes to call me his trophy wife but I do not play the role very well.  Being completely non materialistic I refuse to wear the brands that supposedly dictate success and status.  He knows better than to buy me anything expensive or labeled.

As time goes by my looks of course fade and I used to wander what it would feel like not to be noticed anymore and to blend into the crowd.  Would I mind?  What would my new identity be?   Gary jokingly calls me the aging beauty.  Emphasis on AGING.  This is not a fish for compliments because at most I will get...you are lovely for your age. FOR YOUR AGE.  And it is OK.  It really is because here is the thing.  The years of life that have taken away my youth and my looks have bestowed other gifts upon me.  Lasting gifts like insight and wisdom and compassion and curiosity.  Grace and tolerance and a brave heart.

What is being pretty?  It is fleeting.  I can be attractive and sexy and still look good for myself and my man and I will be all that.  I will never let myself go because I enjoy my femininity and I want Gary to feel pride when he has his old trophy on his arm.  I, myself, want to feel attractive regardless of my age.  So, the time has come for me to pass the baton to my lovely daughters.  I will NOT be that jealous competitive mother desperately hanging onto her youth.  I will stand back in pride and watch my lovely girls grow into themselves reminding them all the time of what makes them truly lovely.

So guess what I am now...The interesting positive one!   Seriously.  My doc loves me, he keeps me there for ages and we chat about so much stuff.  He thinks I am an interesting person with views worth hearing.  Then I met my Chairo the other day and he told me I was a really positive and interesting person.  It was one of the nicest compliments I have ever received and I thought right, I had a good long time of being TPO and now I am TIO.  Time to go, Sofie has a casting.  Kiddie modelling for now but I will decide later if I will allow them into that world I once inhabited.   Feeling liberated!

Thursday, September 4, 2014

Life with Dilbert

Acceptance, that is the stage where I find myself after 2 long years of battling Dystonia.  WTF is Dystonia?  Dystonia involves involuntary contraction of muscles that normally work in cooperation, so that a body part is held in an unusual and often painful position as a result. Dystonia can affect any body part, and can result in both embarrassment and the inability to perform daily activities.   Mine is called oromandibular or lingual dystonia, sometimes also known as Tardive Dyskynesia.  My jaw, my tongue, my palate.  I have decided to name my Dystonia and his name is Dilbert.

This stage of acceptance brings both peace and grief at the same time.  I call myself hope junkie as I am the eternal optimist, the idealist.  I crash and burn often yet somehow when I catch a glimmer of that magical elixir called hope I breath a little faster and before I know it I am flying with possibilities and what ifs in Magic-land.  Sometimes they really do come true and sometimes I am hurtling back to earth with the bitter taste of disappointment in my mouth.  I remember googling my crazy side effects of the anti-depressant I was on and copying the link in a mail to my sister and husband.  I was in so much pain and so freaked out and when I read: months, years and sometimes forever I freaked out.  FOREVER?   What do you mean FOREVER?  I cannot do another day of this, not one more day.  Well guess f*cking what?  You can and you will and you have to.  Over 700 days, I have lived with this for over 700 days.  Not because I am brave or strong, because I have young children and a husband so I cannot take my own life.

Have I thought about it?  Oh yes.  Very much so.  I have tried various medications to tame or even kill Dilbert and the one made me so suicidal.  I thought about taking my own life every day.  Many times a day.  It came to a head on the 2nd of April and I raged all day, literally fighting for my life that day.  It was the classical battle between good and evil with death standing very close and pulling me little by little closer to the edge.  I prayed and prayed all day and ironically it was the suicide of my own grandmother that meant I had to stay.  I was not going to take on that legacy and not going to do that to my mother or my children or Gary.  To be THAT family spoken about in hushed tones.  When Gary came home we had a chat and he called my doc that said depression was a side effect of those meds and I went off immediately.  The suicidal thoughts also went away.  Geez it was a hard and scary time for me.  I remember my birthday tea on the 9th of April, exactly 1 week later and looking at my friends thinking if only you knew how close I was to not being here just 1 week before.  But enough of that, its horrible just writing about it.  And no, I don't want to talk about it.

So what am I writing about?  I suppose in the light of Dystonia awareness month I am writing to try and explain what life is like for me.  I posted a clip of myself showing my spasms on FB.  It was ugly and embarrassing but also a little liberating.  When you are trying so damn hard to be normal and act normal but actually you are dealing with a neuro movement disorder 24-7 you never quite feel normal.  Its a lonely place to be.  Apart from the pain the worst part is speech.  I have to talk against my tongue.  Its very hard and very tiring and it makes it hurt far worse.  That makes me feel disabled which in turn makes me super cross.  I blame Lilly the drug company for making Cymgen (Cymbalta generic) and then denying responsibility.  I blame my hard as nails don't give a f*ck psychiatrist who prescribed the meds, reported my case but then when Lilly said it doesn't cause Dystonia she washed her hands off me and hasn't answered a single mail since.  Her time will come, we are all held accountable for what we do and do not do. 

So how do I manage?  I suck sweets, I have a baby teether, I drink lots of hot tea, cold water.  I use masses of lip-ice/chapstick.  I try not to talk on the phone and save my speech for when my kids get home and I need to do homework.  I cannot read them stories anymore and it makes me sad.  If I say something and they don't hear me (its hard to speak clearly) I want to cry at the thought of having to say it again.  Thank God I can write and thank God I don't have it in the rest of my body.  I can exercise so I do.  One gift of Dystonia...becoming a triathlete.  Its my great big F-you to Dilbert.  I am sorry I have to swear so often.  It helps with the cross bit.  I am not a loud or screaming type but sometimes I want to collapse on the floor and rage at the world like a 2 year old crying and yelling.  Itsnotfair Itsnotfair Itsnotfair.  Then I watch clips of people with it all over or really bad facial grimaces and parts of me feels guilty because I am mild in comparison and parts of me so afraid that mine could get worse.  I saw a clip today that was so horrendous I thought no way would I live like that.  But then I thought I need to hold Daniel's baby for the first time one day and I need to button up the back of my daughters' wedding dresses like my mother did for us girls.  I have to stay and I have to just hope that it never gets worse.  I have to hope that I can manage it better and maybe, just maybe, I might even hope that they find a cure for it and I can have my life back.  Its possible that I do not have to do 40 more years of this.     

PS:  I have thought about what the hell I am going to do once I graduate and I start my career as a counselor with the real possibility of not managing to speak for lengthy periods.  My response...hope junkie thinks in the next 2 years somehow something happens and it lessens or stops and I just open my great big mouth and talk.  Fluent, easy, painless.  Please God.