This is an Account of my Whole Life, all that I have learnt and experienced to date, up to the point where I am at right now. It has taken real guts to write so please handle with care!
I hope you can learn something from it and that it can help you grow and find your way through the maze of life, onto a bright and brilliant future, no matter what challenges life throws your way!
Sylvie Brown, 30, Sheffield, England, 10th March 2003.
I love and approve of myself unconditionally…
…but I never did,
I just wanted to be normal,
but I never felt normal,
I was sensitive,
I didn't understand the world?
Why was I here?
Was there a God?
Was there a God for me?
Why didn't other children think like me?
The fear that I was not normal ran deep,
Was there something wrong with me?
A doctor came to school,
he asked for volunteers
to check their hearts,
I was too scared,
he'd find something wrong with me?
Maybe that was a dream?
I can't remember,
There were other nightmares,
My heart was sick, wires, machines,
Other deluded visions,
I sleep walked,
awake but still hallucinating,
to my mum and dad's room,
Dad always calmed me down,
It was more horrible than I can ever describe,
My childhood was good,
Middle-class, home, car, loving parents,
sensible with money but I never went without,
lovely holidays with Grandma and Grandad too,
We got Jim our cat when I was eight,
Grandma brought him up from Somerset,
Just a few weeks old,
A black and white ball of fluff,
He grew up with us,
He was independent, wise, in charge our household,
Always there for us,
The Centre of my Universe!
My Dad lectured at University in Chemical Engineering,
My Mum used to lecture in Russian too,
Until she got eczema and went part-time,
Then she had my brother and then me,
She could never get back into work,
Something she has always been angry about,
But her life found a new direction,
A mere housewife was never enough,
My Grandma made sure she felt this way,
She gave up teaching herself to have her kids,
She'd had no choice,
Sally, my Mum was to have a greater purpose that just that!
Mum discovered a new passion,
an eccentric Australian composer Percy Grainger,
Her relationship to this dead composer became almost Spiritual,
Through her he seems to lives on,
Such insight, understanding and passion this man,
and his music,
It defies my comprehension,
Once she even went on hunger strike,
Because no one would listen to her,
I was about 8 years old I think,
She wouldn't take care of herself either,
That could all come later,
When the world took notice,
When the world was ready to listen,
I was brought up a Methodist,
But I never really got it,
Lots of people give up their lives for God,
What made Jesus so special?
My brother rebelled but I never did,
I got confirmed but it didn't mean much to me,
I wasn't sure about God?
Was there one?
Was there a point to existence?
I assumed I'd know when I became an adult.
I was always Aware about the world,
I always worried about it,
Over population, poverty, nuclear weapons, the environment.
I was a sensitive soul,
I tried to make a difference,
I tried to make the world a better place.
I always was very active,
Running, dancing, swimming, played the viola,
choir, orchestra, Duke of Edinburgh to name a few
In the holidays I kept myself busy,
I'd take up Chinese,
I loved languages,
I needed things to do,
Things to occupy my mind,
So I didn't feel lost and down,
And haunted by that childhood feeling.
Puberty confirmed my childhood fears,
My womb was deformed,
split right in two,
blood retention, pain and operations,
hospital appointments, scans, check ups,
on the pill to stop the bleeding
…to get through my GCSE's,
opened up twice, pretty major procedures,
I kept it all a secret,
I didn't answer questions,
I was far too embarrassed,
I focused on school,
I had great friends,
I did very well,
physically I healed,
But inwardly I felt ashamed,
my womanhood destroyed,
how could men possibly love me now?
But my first love seemed to!
I passed my A levels, an academic success?
and inter-railed around Europe-that was fun!
We got held at gun-point in Amsterdam,
We followed a man into a side street,
He demanded cash,
We turned tail and fled,
Thankfully it was just a threat,
I went away to Sussex University,
and moved on,
I studied Chemistry with German,
both my parents subjects,
And there was never any conscious pressure to do so,
Maybe subconsciously I wanted to please?
I don't know?
I was pretty shy,
Southern women thought I was mad,
Why? because I liked to climb,
Trees, buildings, cliffs, lampposts,
You name it I climbed it,
It was fun and exciting,
I loved the thrill,
I got on much better with men,
They understood me,
I went on a mad Booze Cruise trip to France,
As students Do,
I climbed French lampposts in the middle of the night,
Until the police stopped me that is,
After that I wasn't "Sylvia" anymore,
my new name was "Sylvie",
My nickname became "Entropy".
Another word for Chaos!
Entropy can very destructive,
It causes disintegration,
Makes sugar dissolve in tea,
Makes a house fall into ruin,
But it's also very powerful,
It's the driving force on the Universe,
Causes it to expand.
Without Entropy nothing would work,
I started getting insomnia,
Worries about exams,
Not feeling good enough,
It was an effort to fit in,
Make new friends,
In a new town, in a new life,
And with this came sleep paralysis,
Just a dream but it felt so real…..
….I had to wake up,
My brain was exploding,
But I couldn't move,
The world was blurred,
I couldn't talk,
I would fall over….
I'd wake up in a state,
Sometimes it happened several times,
It wasn't restful,
daylight made it far worse,
and seemed to be stress related,
I studied well,
I helped with the Homeless,
I loved to help people,
Even if it was just by being there,
Making a sandwich,
Offering a cup of tea,
I friendly ear….
I became more confident,
Found my real friends,
I was never short of attention either,
men became easy to control.
I was highly strung,
I pushed myself to my limits,
Lead a pretty entropic life,
I took a leap and had sex at 20,
I wondered whether it would be ok,
I loved him and it felt right,
I ended up in pain,
A small operation resolved the problem
but this did nothing for my confidence,
My boyfriend lived in Cumbria,
I went up there for New Year,
We went for walks,
Ate pheasant on New Years Day,
We were happy together,
It was cosy,
He had a cuddly Hefalump called "Urbi",
I felt loved,
The village had a New Year tradition,
At midnight everyone in the Xmas tree,
I joined in of course!,
My boyfriend stole a red light bulb off the tree,
I held it in my pocket,
I treasured the gift,
Yet somehow it got smashed,
…..Leaving darkness and broken glass…
Sex turned out to be OK thank God,
My boyfriend was patient and loving,
I started to enjoy it,
The intimacy was wonderful,
My vagina was normal after all,
Just like he doctors had always said,
I hadn't believed them,
I was too paranoid and scared,
After all the pain and trauma,
Holding it together through school,
Keeping a Smile on my face,
But knowing I was different.
I wondered about babies,
Maybe they'd be possible too after all?
I'd need more attention,
And they'd be more risks,
That's what the doctors said anyway,
I didn't really want to think about it too much,
I'd been through enough already,
But it ate away at me inside
Knowing the answer could well be "No".
I found out my mum had breast cancer,
but refused to go for treatment,
"Only when people listen" she said,
"Don't make me go" she said
"Don't put a gun to my head",
That's what it felt like to her,
That's how much her composer meant to her,
Far more than her life,
So I had to live with that,
Knowing how serious it could be,
It made me want to climb all the more,
And lead a more reckless life,
But that's what students do anyway right!
Eventually she went to the hospital,
Cancer was confirmed,
The doctors were mystified,
Why was she still alive?
Why hadn't the cancer spread?
I know why, mind of matter,
In her head it wasn't cancer,
It was suppressed emotions,
Frustration at never being listened to,
The real cause had to be treated too,
She knew that,
I realise that too now,
But not then…
She had chemotherapy, blood transfusions, all hair fell out,
I thought I'd have to watch her die,
just like my boyfriend's mother had,
I needed him,
that scared me ,
he saw me crack-up,
….in the end I dumped him,
Another form of self-destruction,
How could I be good enough?
So I ran away from love,
I didn't know if I could have children,
Well that was my excuse,
My fears ran so deep,
I mean that was the whole point wasn't it,
That's what men want in the end,
That's what we are here for,
To settle down,
I know I hurt him,
Above all I hurt myself…
I wanted to be loved,
But I couldn't handle it,
I smashed it all to pieces
….leaving darkness and broken glass.
The truth was I was scared,
He'd really seen me lose it,
Close to nervous breakdown,
With exams to pass,
Just the memory scared me,
It was just like my childhood nightmares,
That same feeling,
I couldn't stand it,
The cancer freaked me out,
And he was linked to all that too,
And I couldn't handle all that,
I needed no reminder,
It was far easier to play with fire,
Mind games with a man who was on the rebound,
A man who didn't really care,
(well actually he did-he's told me since
but I wasn't to know that then),
It was exciting and dangerous,
I ended up burnt,
He ended up back with his girlfriend,
I ended up single,
Oh well I was young right?
I was better to be free anyway…
My solution to it all was to climb….
….there were always more things to climb….
My Mum recovered thank god,
I worked hard and played hard,
burned the candles at both ends,
enjoyed life….but it was chaotic
I passed my exams with flying colours,
I really don't know how?
But there was a strange tingling sensation in my spine,
Especially after a pint or two,
I blamed it on too much cycling,
I felt so stiff,
Hangover's took longer to recover from,
It was so hard to wake myself up,
My brain felt so foggy,
And I felt very anxious,
My three main Uni friends were men,
They said I was a "honorary man",
That suited me just fine,
They were as mad as me,
We did a skydive together,
A static-line jump,
I had to do this despite my fear,
Mum wasn't too happy but she knew what I was like,
I nearly landed on a sheep,
It was a right thrill,
For an adrenalin junkie,
Over the Summer I did Research Work,
Dad arranged it through the Chemistry Dept,
The Social life was good,
The money came in useful,
I saved it well like I always did,
I got on with the lads,
Played a lot of Footie,
Mostly 5 a side,
Not that I was very good!!!
One time ball whacked my wrist really hard,
So much for my Goal Keeping!,
It swelled up but it wasn't broken,
I strapped it up and went on holiday as planned anyway,
Backpacking through Italy with my three great male friends,
We travelled down to Rome for my 21st Birthday,
Stayed mostly in Youth Hostels,
Paris, Lyon, Torino, Pisa, Florence, and finally Rome,
We had great fun,
I waded into the Trevi Fountain at midnight,
Three Italian men bought me a rose,
It was wild and memorable,
But the next day I felt really bad,
I lay on the beach,
Serves me right I thought,
But it was more than a hang-over,
I felt really rough,
The tingling in my spine was getting worse,
Shortly after I got back my torso went numb,
All this from one whack of a football?
The doctors said trapped nerve,
I wondered if I had MS?
No surely not, DO NOT be so paranoid!
I moved to study in Germany to Study,
But I didn't feel right,
all was not well,
Numbness, tingling, dizziness, fatigue,
I knew in my gut what was wrong?
How did I know?
I'd read this book,
"A Smile on the Face of God',
By Adrian Plass,
An autobiographical story of a minister who develops MS,
I recognised the symptoms,
He gets more ill than anyone ever should!
But in his case it was for a purpose,
He helped others through his suffering,
Through his faith,
It takes immense courage.
He ends up needing 24 hour care,
In constant pain, severe depression,
Adrian Plass didn't know how to finish the book,
"A rather glum look of the face of God" was far more apt,
but how could he call it that?
Then 'God' surprised everyone,
The minister starts to walk again,
He recovers fully
The author signed the book "God Bless You Sylvia",
I knew what that could mean,
But I didn't want to know!
It was just a coincidence right!
I wasn't strong enough for any of that,
Where was the purpose here anyway?
This illness was just destroying me.
I still climbed all the lampposts that I could,
While I could...
I was scared to death,
I knew what could well happen to me,
I knew I'd need a wheelchair in the end,
It was only a matter of time,
I was spoilt goods.
The world was a scary place,
I was admitted into the best Neurological Clinic in Europe,
It was newly opened,
I underwent every test in the book,
After a week of that I really was ill,
Thank god for great new friends,
The clinic confirmed an inflammatory process of the central nervous system,
Panic attacks, hyperventilation, self-doubt,
the sleep paralysis was getting worse,
and it all seemed to be manifesting in my life,
my worst nightmare coming true,
men consoled me,
an easy option,
they could use me but they couldn't love me,
those were my rules,
I was a drama queen,
how could they love me when
I had an awful virus after all?
Yet another barrier to love!
I wasn't normal that was for sure,
my future wouldn't be normal,
what had I to offer?
Not even a child.
I still prayed for one,
I saw a counsellor,
I told her my vision was blurred,
She said "aber die Augen muessen sehen woellen",
"But the eyes must want to see".
Well that was a lot of good!
I saw an "Augen Artzt"
He could find nothing wrong,
And sent me packing,
After telling me "some people really suffer from MS you know".
Well thanks a lot mate!
In spite of the difficulties,
I got through my studies,
And had an amazing year,
During this year I met my Geordie,
We met in a pub at New Year drunk in South Shield,
We were both very drunk,
I was still awaiting test results,
And very scared,
I was playing with men,
Seeing how many I could pull,
Which wasn't very nice really,
But I was scared of that wheelchair,
And of being left alone,
I soaked up all the attention,
Better had do while I could I thought,
My Geordie lived in London,
I gave him my number,
That's pretty safe,
I mean he's hardly going to call Germany now is he!
But he did,
I tried to put him off,
But he wanted to come out to Germany to visit,
We could hardly remember each other
but he seemed nice enough,
I told him I might be in hospital by then,
He wasn't deterred,
I finished my projects somehow?
And travelled to Berlin to visit a family friend,
A lovely German lady Marie-Luise,
One night an America doctor friend came for tea,
I remember it all too well,
Marie-Luise told her of my concerns,
She clearly thought I was "just hunky dory",
She couldn't see anything physically wrong,
I will never forget her sarcastic words,
"Oh how tragic, such a devastating illness for one so young",
That did it,
I burst into tears,
Yes it was TRAGIC,
That was my life she was laughing about!
I know on the outside I looked fine,
But inside I was struggling just to function.
I drank coffee to stay awake,
"Kaffee und Kuchen" in the labs,
But it triggered more panic attacks,
And made physically shake,
What was wrong with me?
I lived everyday like my last,
Enjoyed every party,
I had to,
They'd be good times and bad,
It was weird,
It seemed to be aggravated by stress,
One minute I was under this evil cloud,
Then as soon as it appeared,
It lifted….and I lived life to the full,
enjoyed every moment.
I was in Paris when my Geordie arrived,
My Norwegian friends persuaded him to stay thank goodness,
He'd travelled from London to Freiburg in South Germany,
To visit a virtual stranger, and I wasn't even there,
Several Irish Coffees later he hit the sack!
But I'd been visiting an artist you see,
a man I scarcely knew!
I'd met him in church doorway years before,
He sent me lovely art-work and letters,
Bit of a risky trip you may think,
But I had to life my life right!
I wasn't sure I'd get the chance again,
Such was my chaotic life!
I got back late at night,
Walked in my room,
And found my Geordie in my bed!!!,
After he put his trousers on,
We said "Hello",
Then we went out on the town…
We hit it off,
Geordies and Norwegians even talk the same,
Haus, baird, Com jem,
It was a wild week,
We laughed a lot,
I stayed with him in London at Easter,
He was smitten,
I loved his motorbike,
I loved the thrill,
I loved the freedom,
We drove up to South Shields,
I met his family,
Nights out "down toon",
late night curries,
early morning walks along the beach,
He had a right hang-over,
and nearly puked,
I thought that was dead romantic,
"naughty" secret baths together!,
We fell in love,
I went back to Germany,
I got on with Project Work,
Organic chemistry in the labs,
Made love with my Geordie by email,
I fooled around with a lovely Austrian too,
He was studying medicine so he understood,
We never slept together but it was fun!
I wanted to make hay while the sun shone,
I might not be loved for too much longer,
All I had was the present!
My Doctor was still adamant it wasn't MS.
"Du hast Angst" he said!
You're just anxious!
German doctors have a lot more time for you,
We talked about sex and orgasms,
He told me I could have children,
He'd seen women in Africa have them,
Women build just like me,
He told me not to worry,
"A near-by nuclear power station might explode!
You might as well worry about that!" He said
He meant well and he did help me a lot
but it didn't change the facts,
I was still ill and IT WAS MS,
That was my fate,
I just knew.
He seemed more concerned that I might get pregnant,
As if…..anyway would that be such a bad thing?
I might not have much time left for all that,
My God I have to do everything now!
I flew home for the weekend of my Geordies 30th,
I looked fine on the outside,
But inside I felt really unwell,
Tired, dizzy, numb, tingly, terribly tired,
A permanent fucking hang-over,
He still seemed to love me though,
At his party he opened up,
he proposed to me,
late at night,
on the bonnet of his car,
I told him about MS,
He promised to push me around in a wheelchair if that's what it took,
Said he'd be my rock,
Was this real love?
I wasn't sure.
But I needed him around
And he needed me.
We loved each other,
A second chance at Love,
I didn't want to blow it this time,
It might be my last!
We enjoyed the Summer months together,
Great Sex, great intimacy,
We had our differences but hey who doesn't,
Making up was fun anyway,
He had to get up early to go to work,
I had to study,
He drank too much,
I was screwed up battling this mystery illness,
Anxious, tired and depressed,
But having to get on,
I'd have to face my finals soon enough.
I took small risks,
I wanted baby,
I didn't want to face my studies,
I tempted fate,
In the end it was an accident,
The first risk at mid-cycle,
I crossed my fingers and hoped to get away with it,
After all this was me wasn't it,
The doctors said it could take longer than most,
But No, I got pregnant at 23,
And it was all wrong!
What an awful way to find this out,
My final year at University,
Back in Brighton,
End of terms exams and throwing up,
I knew I had nerves but this was absurd,
I still got top marks,
God knows how!!!
Pregnancy was confirmed,
And reality hit me like a tonne of bricks,
how could I throw my whole degree away?
How feasible was a year out?
I had expectations to live up to,
My parents made their feelings clear,
And anyway I had MS,
the relationship had to be solid,
and it wasn't after all,
trapped in an unhappy job in an unhappy place,
the responsibility, the sleepless nights,
how would I manage?
we loved each other but it was all wrong,
wrong time, wrong man, wrong uterus……
We failed the test,
We pulled apart,
the decision nearly killed me,
I said goodbye and had an abortion,
the ultimate failure as a woman
……..after all that!
But I had to be responsible,
my whole life was hanging in the balance,
No one could tell but I knew.
I put my head down and studied hard,
I took antidepressants,
the symptoms were back with a vengeance,
My counsellor wasn't surprised,
I got psychological explanation after explanation for my symptoms,
And I was tired of all that,
I knew what was wrong,
I could hardly run,
Why wouldn't anyone believe me?
Was I simply going mad?
I headed home to study,
My boyfriend was punishing me,
Off on mad trips to Amsterdam,
Shaving all his hair off drunk,
But it wasn't all my fault,
It takes two to pull apart,
He'd watched TV when I needed him most,
I went out for the loneliest walk of my life that day
If he'd only have been there.
I finished my exams,
then collapsed, exhausted, mobility limited,
numb, severely depressed,
the maternal feelings hit me big time,
I wandered to the beach one day,
Brain foggy, numb, fatigued, tearful,
I met a homeless man,
I always helped the Homeless,
I always got too involved,
Just trying to help,
I ended up locked in his room,
He pinned me down,
I freaked and told him of my guilt,
What I'd done,
Floods of tears, suffered enough?
It worked, it distracted him!
I made it to the door
And persuaded him to let me go,
Eventually he did,
We went to the pub and I pretended to be his friend,
Bought him a drink, and cigarettes,
So relieved to have escaped,
I was far too nice!
How could I have been so stupid you may think?
To be honest I don't think I'd cared,
part of me wanted to be punished for what I'd done,
I escaped by the grace of god,
Nothing made sense any more.
And I hated myself,
OK my baby wasn't meant to be,
I'd bled the night before,
And it hadn't been developing right,
I would have miscarried anyway,
But it didn't change what I'd done,
It didn't lessen the pain or the guilt I felt.
I still saw my Geordie,
Like he wanted me now,
He was so withdrawn,
I dressed up like a tart,
To get his attention, it kind of worked,
It got his flat mates attention anyway!
He was there when my Geordie was off in the pubs,
I had to drink with someone!
I graduated with First class Hons,
Goodness knows how I traversed that stage,
but to what avail?
And at what price?
I wasn't proud,
My purse was stolen,
It turned up later-minus £30,
I remember the long walk to collect it,
I had a backpack on,
My legs were killing me,
If only the thief could know what that day felt like,
If only he knew what that £30 cost me,
I moved back Home,
I got diagnosed,
I had no other choice,
they gave me steroids,
I tried to rest,
I felt better and could run again,
That was totally amazing.
I tried to plan my future,
What fucking future?
How could I?
MS was still there,
I could only commit from month to month,
My life felt like a farce,
"So Sylvie what career are you choosing",
How could I answer that?
A young girl with her whole future ahead of her,
If only they knew,
But I didn't tell a sole,
Only family and my very closest friend,
I was scared how people would react.
I was scared they would run away,
To get a job I'd have to as good as lie,
how long could I hide my secret?
the degree felt worthless,
the job, the house, the partner,
all way beyond my reach,
I got a Xmas job,
To give me time to think,
It was something to hold onto at least,
In a crumbing world…
I clung onto my Geordie,
We needed each other,
We went to his work Do,
He bought me some gorgeous boots,
I looked good on his arm,
I felt well again,
though it was still there inside,
and he was a lot less withdrawn and depressed,
He got hold of some cannabis for me,
I danced like there was no tomorrow,
Enjoyed every step,
But it couldn't work,
We drifted apart,
He wanted to me to get a proper job,
I can understand why….and I don't blame him,
I know that's why he'd set me free,
But it was MS trapping me now,
So how the hell could I?
I couldn't just bury my head in the sand,
His solution not mine,
He didn't understand…
So we went our different ways.
Home was claustrophobic,
I wasn't a kid anymore,
I didn't need emotionally blackmailing
My life being ruled by a dead musician,
My Mum linked it all together,
She felt responsible,
She felt guilty because now it was me who was ill now,
But it wasn't her fault,
And promoting Percy's music,
Wasn't going to solve this one like she thought it would,
I was still grieving my loss,
And resented my parents for making me face the truth,
It was a difficult time for all of us,
I needed space.
I met a married man,
He thought he had MS,
He told me so….
I said "me too"…..
And that was it,
Suddenly he felt needed again,
And he needed me,
There was a point to life again,
We went to the Footie,
We went for meals,
I'd not been eating well,
We had fun, me, him and his gorgeous little boy,
Just eighteen months,
He healed me of my pain,
Filled the emptiness,
They helped me through,
Saved my sanity in a way,
Still it was all wrong,
I didn't want to get to close,
He was like a child himself,
I managed to keep him at arms length,
I needed a man, not a boy,
Anyway he was fucking married!
I wasn't stupid,
I moved away and did voluntary work,
I was placed in Reddich (nr Birmingham),
I told them it was mild MS,
they bought it and took me on
I valued everyday,
Part of a team,
Helping the homeless,
Taking the bus to the office,
Living in a YMCA.
Helping young people…..in all kinds of trouble,
learning difficulties, drugs, gang rape,
You name it, I helped them handle it,
It was a real eye-opener,
The pay was pocket money,
But that didn't matter,
But MS was always there,
Whispering you are living on borrowed time,
But I loved my job, having a role.
It was challenging,
these were precious times,
I was single but still desperate to be loved,
men with there but always at a personal emotional cost,
mental problems, married or with pregnant girlfriends,
I thought Paul was the one, my Soul-mate at last,
We met at the Spiritualist Church,
We got on so well,
He gave me faith,
He disapproved of my married man!
My married man disapproved of him!
But with him I felt FREE & FULL OF HOPE,
We were free spirits,
we swam in lakes at midnight,
danced around stone circles naked and bear foot,
though it was hard for me to run,
and I couldn't feel the grass beneath my feet,
We went dowsing, got stoned,
philosophised till the early hours!
A right pair of "New Age" Hippies,
Was there a purpose after all?
With him I'd cope!
Then the Truth came out,
He was still living with this "Ex",
She found out about me,
She went ballistic,
Then she trapped him,
By getting pregnant,
How jealous was I…..
All I got landed with was thrush,
My married man had been right all along,
He'd told me Paul wasn't good enough,
Why hadn't I listened?
Days later I came down with food poisoning,
I couldn't walk straight,
I freaked out, I felt so ill,
I went down to the front desk
"Can I call work?", I said.
"No you can bleeding well walk there…" came the reply,
just a joke of course but badly timed,
floods of tears….
"No I bloody well couldn't",
But how were they supposed to know that.
I called my married man,
He was down in a shot and brought me home,
just in time….
I got far worse that night,
the next day I told my Mum "I can't walk"
"Oh my Goodness what do we do now?"
"I don't know??? Stay in bed forever?"
I was admitted to hospital,
It was a pretty bad relapse,
I felt like I was dieing,
Anti-biotics, Steroids, a broken heart,
Nothing made sense,
After a few days I could walk again,
But how could I go on...alone?
What was the point?
My married man visited me all hours he could,
People thought his little boy was mine,
That was so sweet,
He said his wife was leaving him,
He wanted us to live together,
I told him he was mad,
How could that ever work?
We were total opposites,
Too many problems,
He was too much, too draining anyway….
But at least he shared my pain,
We helped each other to survive,
I went back to Redditch and got on,
The wife kept sending him down the visit!
She certainly didn't seem to want him,
He didn't have a firm diagnosis of MS,
I think he had chronic fatigue,
But what's the difference?
joint pain, fatigue, cognitive problems,
especially when it came to remembering he was married!
But what did that really matter now?
We understood each other,
Paul turned up at my door!
Hadn't a clue I'd been to hell and back,
been away patching up his sad relationship,
I was too soft, I loved him ...forgave him all to soon,
was even still prepared to see him!
But thankfully my married man took care of him,
"Why aren't you with Sylvie?"
"My girlfriends pregnant…."
"So why aren't you with Sylvie?…"
That was enough to see him off,
So much for that "Soul-mate!"
My married man loved me and his wife seemed grateful,
A huge burden lifted off her shoulders,
OK so it wasn't True Love,
But what the hell was?
Look where that had got me!
He pursued me ruthlessly,
Where ever I went he turned up,
So I gave in to the inevitable…..in the end,
After all his wife was leaving right,
But as soon as I did she changed her mind,
She wanted him after all,
It tore me apart,
It was all happening again!
And I was too weak to stop it,
His fantasy world was cosy,
The sex-life fun,
He lavished me with attention,
sexy tops and short skimpy dresses,
transformed my image...
did a lot for my self-esteem,
The massage really helped,
Although he was too much,
I needed him.
In my heart I knew it could never work,
But I fell in love with his little boy,
He was gorgeous and eased my pain,
I played Mum while I could,
Until it all collapsed,
MS caught up with me,
My world collapsed,
I moved back Home,
My married man planned a wild trip to Prague,
He was one crazy mother fucker if you ask me,
His wife booked it???
I said I was too ill to go…
He said if that was true then I must go,
It was my last chance,
Later on he'd not let me suffer he assured me,
We'd die together in a dramatic way,
But I could never agree to that!
I wasn't brought up to think like that.
That was a sin,
That was selfish,
I had morals.
My parents forbade me to go,
But I went anyway,
We lived for the minute and fucked the world,
He didn't care about money,
But I was sensible,
Too fucking sensible in many ways,
And he was too stupid,
His debts were mounting up,
But like he cared,
He was so angry with the world,
"Let the capitalist system pay" he said,
"I'll be dead in five years anyway,"
I could never live like that,
So we argued a lot,
I didn't want debt to kill him in the end,
A slow form of suicide,
I had my savings and lived to my means,
Just like I always had done,
I was sensible and frugal,
He was reckless,
We travelled through Europe and ended up in Prague,
A wicked fantasy world while it lasted,
I got caught up in it,
We didn't give a shit,
What was the worst that could happen?
A high-speed car crash?
That would be convenient,
Ian was insured for half a million,
No wonder his wife said "Go",
No I don't mean that too literally
Mother of his baby,
She really did care for him,
Anyway we lived to tell the tale,
We met wife and baby in Paris,
That was the deal,
Yep wife, lover and toddler all together on holiday,
How the hell could that work???
He said "Remember Sylvie I love you".
I handed him back,
And became the babysitter,
We gritted our teeth and survived,
Focused on the little boy we all loved,
It wasn't so bad….
But when I saw them holding hands,
It tore my heart to pieces yet again,
"Remember Sylvie I love you".
Well sorry, No Not Good Enough,
Too much heart-ache,
Too much pain,
That's not Love.
I know that now.
Still he was around,
His marriage a mystery,
All very bizarre,
And I was all alone and isolated,
I moved into a shared house,
On the steepest hill in Sheffield,
It gave me something of a life,
He stayed with her after all,
But for that I was glad,
He came around all the time anyway,
I needed lifts for God's Sake,
And more and more help,
As my mobility deteriorated rapidly,
He was shocked to see my rapid decline,
Right before his eyes,
Seeing is Believing,
It broke his heart too,
Not that it changed the way he felt one bit,
"Disability, what Disability?" he'd say,
that was sweet but not always very practical,
this was really happening after all,
My Denial wasn't helping.
We both lived from day to day,
I could see no future,
He still took advantage mind,
I wanted all that to stop,
But he wore me down,
And it made me so mad,
But at least he was there for me,
And his little boy a joy,
Company in a ruthless world,
Something I guess,
I was still in touch with my Geordie,
He'd escaped London,
And moved back Jem,
He had a good job now,
Life seemed more stable,
Could we have a future after all?
I went up to Visit at Easter,
I wanted a baby desperately,
A Yearning to live on through my child,
a desperate fantasy,
My Geordy brought me back to earth with a jolt,
"It would help if you were mobile",
I hobbled around South Shields in the rain,
stick in hand, in floods of tears,
dashing to the loo, hiding myself away in a pub,
trying to facing reality...
He was wrong, cold, ruthless, harsh,
You don't have to be mobile to be a good Mum,
But he was right too,
You do have to be Stable,
Otherwise it's just plain Selfish,
and I was just getting worse and worse...
I am very grateful to him now for his "cruelty".
So OK a baby wasn't on the cards right now,
We discussed my moving up North to live with him anyway,
I needed to know he'd be there for me,
That he'd give up his job if I needed more care,
My prognosis looked so bleak,
I got my answer,
The answer was "No",
At least he was honest with me,
After all how would he get back into work after I died?
I couldn't believe my ears,
But I understood of course,
I always understood,
I realised there were deeper problems,
He was scared of a work-free life,
Too much time to think,
Work was his mask,
Take that away and he'd probably lose it again,
That was the last time I let him let me down!
The married man let me down too,
Again too many problems himself,
His wife was in hospital having an op,
I went over to help him with his little boy,
I did too much, fell into the doorframe and smashed my face,
The sight was not pretty,
The ambulance took me to hospital,
He visited her upstairs,
then visited me downstairs,
Yes the same fucking hospital!!!
He then went off to the footie,
My parents came to get me,
I ended up back Home,
Then on steroids once again,
Daily visits to the hospital,
I just wanted to die,
How could he let me down too?
He'd not rang me for days,
So much for "Why aren't you with Sylvie"!!!
I heard that he'd been on family day trips out,
Fun parks and everything,
After everything he'd said about Paul too!
I felt sick to my stomach,
That wasn't entirely how it was,
The truth was he just couldn't cope,
His cat had been run over,
That was his excuse,
He let us both down,
I don't blame him,
He was sick himself, tired and depressed,
And running away as usual,
He was good at that,
But that was the last time I depended on a man,
I decided they were vastly over-rated!
I knew I had to tell the world what was wrong,
I couldn't hid it any longer,
But I couldn't bear pity,
How could I give people something really to talk about?
Steroids and Physio helped me walk a bit better,
That was something at least,
So I decided to do a tandem skydive,
It was a challenge and it was fun,
All the better when you can hardly walk,
Ever the Drama Queen,
The response was overwhelming,
It blew me away, gave me the strength to soldier on,
Family, friends, old school friends, teachers, total strangers,,
I need not have worried about how people would react,
Everyone stuck by me and supported me,
So many people cared about me!
I even made new friends,
And I raised nearly £2 000 in the end,
Everyone thought I was brave,
But the truth was death didn't scare me,
That would be the easy option,
It's life that was the challenge!
Living with MS everyday,
Trying to cross the road,
Collapsing in exhaustion,
Everything I regarded as ME being destroyed,
All I wanted was to be normal.
Make the world a better place,
What was the meaning to this madness?
Where was the purpose to my living hell?
The jump was over but I was still in "free-fall",
I crawled around on the floor for two weeks,
Before I got that blasted wheelchair,
It was devastating for family and friends,
I caused myself immense needless pain,
I said "I'd rather be dead than use one of those",
I cannot believe that I said that now,
But I was just so scared of getting one,
And getting stuck in it,
In the end I had no choice,
This happened anyway,
I'd been living on borrowed time,
And it was running out fast!
what the hell was wrong with me?
Why couldn't I just be normal?
I didn't ask for much like some did I now did I…
A job, a man, a home, a baby,
but MS was destroying me,
And left to face it on my own,
After "my fall" the "System" started moving,
About time...thank God,
I got Physio for a while,
A good Social Worker,
I got re-housed,
A lovely little bungalow,
My own place,
And lots of Home Care…
just in time to save my independence.
I couldn't bear to be a burden to my parents,
I love them too much for that,
And that wouldn't have worked,
No that was not for me,
The married man remained my friend,
He was a soppy bugger,
He would have literally loved me to death
He was always there by my side,
So was his wife in a way,
And their darling little boy,
They were all there at my charity jump,
At least he could push the wheelchair,
Even though it exhausted him,
I remember the day I hit rock bottom,
Couldn't get out of bed yet again,
I never made the toilet yet again,
The bed got changed at least.
As consolation I tried to make a cup of tea,
A lot of effort, a big struggle,
And it ended up spilt and smashed,
It was only a cup of tea right?
But to me it reflected my life,
Smashed in pieces on the concrete,
Leaving darkness and broken pottery…
I'd always had a faith in God,
Until that blackest day,
The dark night of my soul,
I felt totally forsaken,
To me it was a Godless world,
I wrote to Paul,
I talked about suicide,
But he never replied,
He was probably too busy playing "unhappy families",
Or watching "tables" walk around the room
At the Spiritualist Church maybe?
Or maybe he never got the letter?
It doesn't matter now,
Men gave me too much heartache and pain
Some distraction but no escape from Multiple sclerosis in the end....
My dear Jim was a very poorly cat as well,
His very dodgy back paws just like me,
We struggled on together,
Both on all fours,
Maybe he has MS too I thought in jest,
Of course not he was just plain old,
He'd made it to 18 for goodness sake!
That's old enough to vote,
In the end we had to let him go.
It was peaceful, he just went to sleep forever,,
I just wanted to join him,
But it doesn't work like that.
I had greater challenges yet to face,
And without my Jim, all the tougher.
I was wheelchair-bound, incontinent,
Legs so stiff and bruised,
Circulation poor, bed sores,
time had ran out,
my life had stopped,
there was no where left to run,
there was no where left to hide,
I allowed myself a last lot of steroids,
My friends were doing the London Triathlon you see,
Our Team was called "Hello MS Brown",
I had to be there,
I needed to loosen up my legs a bit,
So I took my final "quick fix",
And it helped a little,
I could manage two steps once again,
That was enough,
I went to London to support my Team,
It was tiring but I survived the weekend,
They did me proud and we raise more £££s.
From now on though it was up to me!
I knew I had to try to Take Control,
"Quick fixes" don't last forever,
It was time to face my life,
I realised it was all up to me,
I had to be my own ROCK,
I had to stop running away,
A case of Do or Die,
I had to try,
I made a decision…whatever it took I would do,
Suddenly I found myself free from all responsibility,
Suddenly I had all the time in the world,
time to face MS,
time to face myself,
time to help myself,
time to search for answers,
time for me,
amid the nightmare of existence,
I got a computer and logged on,
A new world opened up to me,
Full of support, understanding and encouragement,
guided by my "internet angels",
I started my search for answers,
No more Steroids,
the effects didn't last,
"Short-term gain over long-term pain",
That was no good anymore,
I'd have to be stronger than that,
A new approach,
"Short-term pain over long term gain"
That's what I'd choose from now on,
I called it "My search for a needle in a hay-stack",
I didn't reckon on my chances but I had to try,
I was a good student, eager to study and learn.
I started to take responsibility for my life,
my health, my welfare and my happiness.
Gradually I found my way,
I battled through the undergrowth,
The path was overgrown,
Many a Rock in my way,
I often stumbled and fell,
But always got back up again,
And found my way through in the end,
I was not alone,
my friends and family supported me all the way,
gave me lifts,
took me swimming,
Whatever I needed.
Mum and I grew close again,
I focused on the important people in my life,
I went to Norway with my brother.
We visited my best-friend in Oslo,
That was my first step into the Unknown,
Out in the world using a wheelchair for a whole week,
It was exhausting but everyone helped and I survived,
And came Home a lot stronger for this experience.
The married guy was still coming around,
still claiming "Sylvie you saved me!",
but I knew the truth by now,
no one can save you but yourself,
His "clinginess" was stifling me,
he "needed" me to much,
but I didn't really need him anymore,
and was clear with "the boundaries",
he moved onto his next "girlie" pretty soon,
I introduced them as it happens,
We all still got on well
all one big happy family in a way,
I found many needles in that hay-stack,
Dietary change, Nutrition and Exercise, Attitude, Faith,
they added up to a result in the end,
but it took time, it took guts,
it changed me,
I cared about myself,
men became unimportant,
a baby the last thing on my mind,
I did whatever it took,
and found the new self-love,
and a new self-respect,
Mr Right was not far around the corner,
my steps towards independence took me right to him,
he sold me my mobility scooter,
he was even called Mr Wright!
…..I accepted his unconditional love,
third time lucky…
He took a way all my excuses,
A mean a baby was no longer expected of me right?
I didn't want that anyway anymore!
Those feelings had passed,
I've built stability in my life,
A never-ending search, a long haul,
A Voyage of Self-Discovery,
Faith in Myself,
My Greatest Triumph!
I rode the Storms,
Stubbornness drove me on,
A new Will to live,
I was Special after all,
I must be to have survive this journey,
That made me pretty damn remarkable,
I was making progress,
In the right direction,
I was changing my life, my reality,
I saved myself from a life too difficult to contemplate,
A Self-Made miracle,
Results spurred in on,
Through good times and bad,
I inspired others,
I learnt new skills,
Committed to new projects,
and befriended the future,
I've been incredibly lucky too,
When I got re-housed I fell on my feet,
My mobility scooter has re-opened up the world to me,
The best investment of my life,
I could get to the shops, Safeway, parks, and the tram to town,
To Meadowhall or even the MS Therapy Centre,
I could buy a paper,
Such simple things,
Yet they mean so much,
The world became my oyster once more,,
My independence regained!
A great little swimming pool just across the road,
Which even got an Aqua-gym installed, perfect!
A Yoga Class in the library building just next door,
Carers go free!
That makes you popular!
Life became rich and full again,
great new people too,
they helped me all they could,
took me out during the dark times,
helped me survive,
I will never forget!
I started to walk short distances,
I learnt how to manage my bladder,
I helped others find their own way through,
Opportunities flocked my way,
The world opened up again,
Why, simply because I was me!
That's all I had to be from now on,
I had a purpose for living, only even better
I was a carried around Snowdon Park by a bunch of policemen,
We raised more funds for the MS Therapy Centre,
The next year it was a team of very special Bus Drivers,
I rose to these Challenges!
It was wild and it was fun!
I didn't exactly like the wheelchair,
But I didn't mind it either!
Happiness and Life there for the taking,
Provided I had the guts,
Steve took me on holiday,
to the Florida Keys in America
he has a Home there,,
I was scared,
Going out into the real world again,
For several weeks this time,
Using a wheelchair and a scooter,
Would we cope?
Could I transfer my life out there?
Would I survive?
I knew I had to go though,
I had to live my life,
Wild horses wouldn't have stopped,
Relapses certainly didn't….
I took a leap of Faith,
There were difficult times,
But Steve was there for me,
And we coped!!!
I stuck to my Diet,
I will never forget this special time,
I discovered an even Greater Strength within myself,
The gamble paid of,
I bounced back all the stronger,
The sunshine and swimming worked wonders for me,
The special times with Steve,
His Unconditional love,
That takes some beating.
I even swam with dolphins,
A dream come true,
Could life get any better?
The answer's "Yes",
I've been three more times since,
An annual taste of paradise,
A really special time,
Time for me, time for my health, time to really breath.
MS can make an even more special,
Memories more intense!
Steve carried me all the way up this Tower,
To view the glorious Everglades,
Technically this is called being a "Carer",
Technically you could say I was a "burden",
But Steve remembers this as a Highlight of his Life,
To be fit and strong enough to Give to me in this way,
Made the view all the more "Breath-taking!",
To others it was just a Tower,
To Steve it was a Conquest he'll never forget,
And he did that just for me!
Often the Easy Path is not the Richest,
MS became my greatest teacher.
Having been there, done that, got the T.Shirt and
survived I could really help others.
I was determined to raise Awareness about MS,
I self- taught myself html from a book,
and built my MS web-page,
I set-up a Young MS Group,
That project landed in my lap,
It felt right, so I went for it,
I didn't want others to be isolated like I had been,
I'd been an MS Victim,
I'd been in denial,
I'd run away,
I had price with my health,
But it wasn't all my fault,
NO ONE had told me "You don't have to be so SCARED",
NO ONE had told me "It will be OK,"
NO ONE had told me "You can learn to LIVE WITH this…
It isn't the end of the END OF THE WORLD you know".
I wasn't going to let that happen to others.
They would have Choices,
They would be AWARE OR THEIR OPTIONS,
What they then did with them was up to them.
I discovered New Pathways magazine.
A positive, informative self-help magazine for people with MS,
It was challenging and inspiring,
I met the team at the MSRC,
They seemed to have adopted me,
I work closely with Judy Graham and the MSRC,
I'm part of the team,
We share the same purpose,
We spur each other on,
I build and run web-pages, the internet is my thing,
I attended a web-design course, it was local, I could get
there on my scooter on my own, it was free!!!
How amazing is the way the Universe can work for you,
Once you start to believe,
Believe that it's working with you,
Believe in Yourself,
The wider you can open your mind the better.
I set-up a web-page for my man to sell mobility scooters,
Last year I doubled his sales,
I have become a business woman,
I don't know how this happened!
Some days it all becomes too much…
And I crave a much simpler life,
I started a long distance Dream-weaver course,
I built our Florida Keys Home page,
We get rental through the net,
And share paradise with others,
I've started Therapeutic work,
I work on the MSRC web-page,
I meet amazing people who share my symptoms,
We help, support and inspire each other,
We are the MSers with Attitude,
I want to set-up Groups Nationally,
For MSers with Attitude,
There is certainly a need,
Together we can be strong,
And Overcome MS,
Barriers are coming down,
Normality has became more possible again,
But what are the Limits?
I kept challenging them.
I push myself daily,
Determined to do my best,
Determined to improve my health and mobility further,
Determined to build in Strength and Stability,
Determined to work MS out,
Adamant to never ever give up.
Life has become fraught at times,
I'm re-entering the real world and it's scary,
I start putting conditions on myself again,
My perfectionism, and work holism re-emerge,
Don't do it to yourself Sylvie,
Don't be so fucking normal!
Babies still scare me,
Why? They threaten my well-being now,
I don't have enough energy for that,
And those feeling are all gone,
It's still an issue though in my head,
I still feel guilty somedays,
Wish Steve had already've had one,
Job then done,
But he's not to fussed either way,
And I'm learning from my past,
Why create problems for yourself
When there really isn't one?
I've stopped doing that,
I guess part of me still craves that normality,
and wonders where those feelings went?
But maybe that's not so important after all,
The married man's little boy runs me ragged,
he's enough and I can hand him back at the end of the day,
His Daddy's dead now,
Let's just say he didn't make it and leave it at that,
Maybe not being a real Mum,
and not wanting to be one is OK after all?
It doesn't mean I've failed as a woman,
It doesn't mean I'm not good enough to be loved,
It just means I am responsible enough to know my limits.
It just means it's not my Destiny,
Procreation is only clever when you are sure you want it,
….…the rest is just biology,
either you can or your can't.
and there's only one way to find out.
MS has it's good side now as well as the bad now,
….a real mixed Blessing,
I'm far closer to my family now,
They are very proud of me,
Mum and I support each other again,
and enhance each other lives,
We saw the Nutrition Consultant together,
Went to the Yoga for Health Foundation together,
Go swimming together,
My approaches help her loads too,
She's confident the cancer won't return.
These tough years have given me my greatest happiness yet,
Far greater than that of a trouble-free life I'm sure,
I only except the best of the best in my life nowadays,
I am far wiser for these challenges,
I know what real love is,
I have my priorities right,
People relate to me and really open up more now too,
My life is far richer,
Sometimes it gets a bit much,
But it's great to be so needed
in this difficult world.
Being "normal" is over-rated after all,
I never was, never could be and now I'd never want to be,
Most people live their lives blind,
Make Mountains out of Molehills,
Have no idea how lucky they are!
If that's "normal" then forget it!
Maybe the rat-race is over-rated too?
But I still want to be part of the "Real world",
I still want a paid job, independence,
Control over my own Destiny,
That's only Natural Surely?
That's a Healthy Goal to have?
Maybe am grateful to my illness for Giving me Choices,
It doesn't let me work too hard and strive to be 'perfect' anymore,
I am free to pursue worthwhile projects and do the things I love,
That's a Huge Bonus in this day and age,
But Stubbornness Drives me on,
I know I will accomplish all my Goals!
And I'm getting there,
I am taking on more and more Responsibility for my life,
I need less help around the home,
I do well but I often do too much,
That's the HAZARD,
I get carried away,
and end up crumpled in a panicked, exhausted heap,
I still get that sleep paralysis sometimes too,
That still haunts me. I don't know why?
I don't know how to free my soul from that?
Maybe I will in the end?
Fatigue, bugs and infections still trip me up,
But I bounce back naturally every-time,
Thanks to the Best Bet Diet,
I know THIS TOO WILL PASS,
Overall Stability and Strength are winning.
It takes time, effort and focus to keep on track,
Self-discipline, restricted diet, exercise, swimming, rest,
It's a full-time job in itself,
It's take brains, study, constant effort,
And that can get very tiring believe me,
I'm making progress in the right direction now,
It's just so gradually I don't notice it,
I can do so much more,
But have so much more to do,
That's why I don't notice,
And that's the problem,
There always seems to be more you can do!
I think it's called the "Rat-Race" isn't it!
I have become a shining example,
a positive role model,
How on earth did this happen?
Reclaiming my Life is not the Easy Path,
The Easy Path would be to wait for MS to get you,
MS the ticking time-bomb,
Powerless to do anything,
The wheelchair bound victim in the wheelchair,
deteriorating, and waiting in vain for the 'miracle' cure!
I've been there done that and got far too sick!
But LIFE IS TOO PRECIOUS for that,
Now I refuse to GIVE UP so easily,
I will not GIVE MS THE CREDIT,
I DO WHATEVER IT TAKES,
I am up to the Challenge!
I am strong enough now,
and I know I am worth it!
To have a hope in hell of Success
you have to Truly face your Life,
OK Maybe it doesn't feel fair,
But you can't spend your life having a tantrum,
being angry or sulking in a corner,
That's what kids do,
and that gets bloody boring after a while,
it doesn't attract any great things into your life either,
great people, who can help and support and enable you,
and it doesn't change anything,
So by all means feel sorry for yourself,
But then GET OVER IT,
AND GET ON WITH THE JOB you have to do.
Re-Balance Everything in your Life!
Your Body, your Mind, Your Soul...
Face Yourself, Face Your Past,
Enjoy the present and work with it,
Mould the Future.
I am lucky to have found my way,
Found my tools of survival,
My needles in that Haystack!
My Gut is healing slowly,
Though my heart may take a little longer…..
Diet works for so many people with MS!,
Helps thousands worldwide stabilise their illness,
Or even achieve a Full and permanent Recover.
This field has become a Research Interest,
The most real Science I have ever done,
My living Ph.D!
My Degree came in useful after all,
I've put the UK MS Diet Research Proposal together,
We ain to get Research moving on this front,
Who knows where this could lead…
Last year I did an Abseil,
Off the Hotel Bristol,
For years I tried to make this happen,
I had this goal,
Sometimes I thought it never would,
Then suddenly it was happening!!!
This time I was fundraising for the right reason!
So it was much more frightening than the Skydive,
I cared about my Life now!
It was precious,
I didn't want to die,
When they said I could do it I was relieved,
Disability wasn't about to stop me yehhhh,
I loved every minute of it,
…..ever the drama queen,
Another test of my limits,
What an adrenalin buzz,
What a boost,
I'm still me,
I raised over £1 000 as well,
I still climb things too!,
As well as I bloody well can anyway!!!
But what about my real life Abseil?
Re-entering the Real World?
Are those ropes secure enough?
The system is frustrating,
you are either ill or well!
I'm both, so where do I fit in now?
I find it so hard to accept it's ok to be ill?
We are brought up with expectations,
Illness is never part of that plan,
And it's hard not to know why I feel like I do!
I have many parts of my MS jigsaw now
But will I ever get the full picture?
I'm damned if I'll ever stop trying though!
In my head I know illness doesn't mean I've failed,
I'm not a failure…
I'm a success because I try my best,
I know that,
My heart just has to believe that too…
Positive Thinking comes naturally now,
Real positive thinking backed up with positive Actions,
and positive lifestyle changes,
makes for positive results,
which leads to more positives,
More opportunities and challenges
Like attracts like,
A Universal Rule,
I think we are more responsible for our worlds
than we could ever guess…
And some days that's hard to swallow,
I now know MS didn't just happen "to me",
MS developed within me,
Now there's a huge difference there,
Just think about it for a minute,
What happens within you, you can control,
You do not have to be a victim!
Yes, you've been dealt the card of MS, Shit happens!
But it's still entirely up to you how you play it,
You can choose to be play the Victim or be the Victor!
My Mum was right all along in a way,
The medical world has its place,
Especially in emergencies,
But they often don't address the real causes of illness,
They just treat or mask the symptoms,
So don't hand all the control over to them,
Don't simply assume they know it all,
Do not let them dictate your Future,
The biggest power lies within yourself,
Especially in the case of Chronic illness,
Listen to your Body, Search & Learn
Never Forget this!
I paid a price for being Unaware,
And it's a long haul back,
I have found my path,
But I'm not out of the woods yet,
I still have a long way to journey that's for sure.
I can take responsibility for all that now,
It is not a Godless world,
It never was,
I was just looking in the wrong places for answers,
Praying alone is not enough,
You have to do the work too,
The answers lay within my grasp all the time,
I don't know exactly why I got MS,
Illness manifests in mysterious ways,
MS is especially baffling,
And every case is different,
Adolescence was traumatic,
I didn't deal with it at all well,
It affected my whole outlook,
I was always very sensitive,
And always highly strung,
I lived on my nerves,
MS is my genetic weakness I suppose,
Wrong belief system, wrong diet, stress, poor self-image,
It was only ever a matter of time,
Was there a reason for this?
Is there a purpose?
I don't know.
I have to trust in the Universal Plan.
And I have to listen to my body,
And often I still do neither,
Whatever the Lessons have been Huge,
And I don't regret my life,
I accept it as part of my Destiny,
I have made my peace with it.
And I'm making my peace with myself too now at long last,
With all the pain of my past,
And what that really means for the future,
Better late than never,
Life with MS is OK now,
I mean it's still Tough but I can handle it,
It's no great threat to my life anymore thank God,
But it still gets mighty confusing at times,
One minute everything flows,
I feel as though the sky is the Limit,
I amaze myself,
I feel like I can do anything I set my mind to,
Something I truly believe from the bottom of my heart.
Life's happening and I'm going places,
It's all so clear,
Then the next it all comes crashing down,
Other days exhausted, weak, my brain won't work,
I try to think positive but can make things worse.
I'm anxious, self-doubting, confused, depressed,
I seem to waste so much time,
Become so inefficient,
I can lose my head and lose myself,
The re-emergence of MS hits me and I feel panicky
I re-remember all my past pain, my past "reality",
My fears and self-doubt re-surface,
Is this the present or is this the past?
I wish I knew for sure.
I'm left wondering did I cause all this?
Or am I still causing all this?
Or is this just the grips of MS?
And what is MS anyway?
My Vision and Judgement are all Clouded,
What does it mean?
Why so many opportunities in my life?
How has all this happened?
Why is it all happening?
What a contrast!
Where's the balance, where's the clarity?
It's hard to trust the Universe fully,
When it still seems to kick me in the teeth all to often.
Or am I kicking myself?
By trying to hard?
Not valuing myself enough?
I know I must get the Balance right from this point on,
I am Re-joining the "Rat-Race",
It is happening,
But I have to be careful,
It's a real balancing Act at times,
I have to take one step at a time
and realise my Limits
It's a "difficult" but "wonderful" life I have now,
I've made it that way!
But as I re-enter a world of relative health
I will have to learn to say 'No',
I cannot function well today.
I need to rest.
I still have Health Issue,
…And realise that's OK,
it doesn't mean I'm no good,
but the system doesn't allow for intermittent illness does it,
and that causes extra stress,
where would I be without this safety net?
is sheer belief in myself really enough?
I still have my Employment Goals,
And I believe I will get there,
In my head I know I'm worth it,
Even though they'll be times when I'm unwell,
I can use these too to help others,
But in my heart I still doubt myself,
I don't want to take on too much,
And end up falling from a great height,
I must admit I am scared of doing a bad job.
Not being worth paying for the work I do?
I never really had a real job you see,
I never really got there,
I fell at the first hurdle,
And that knocks your confidence,
I'm scared of failure,
I think I always have been.
And MS makes it much more complex,
So many negatives can appear,
God how normal is that!
Normal people have good and bad days too,
Well that's what my brother says,
Normal people have ups and downs,
I'm up against more than most,
And yet I try a lot harder than most,
If the truth be told.
I have to try to keep perspective,
I've returned from hell and that's my Strength,
After that anything possible…
I'm so much stronger that I think,
I may not always like my "reality",
But I know I will handle it,
When I'm ready I will know,
Suddenly it will all just transpire,
So no need to worry,
That just how life works,
I know that now,
I just have to stay Balanced and tuned in,
Do my Best and Believe in Myself,
Destiny will do the Rest.
I try to practice detachment,
I have come so far,
After all that I've been through,
Can I not accept what is?
Can I not accept myself?
I don't have to be perfect,
I just have to be "perfectly me",
I've questioned enough,
That's what I have to do,
No more hoops to jump through,
just self-acceptance and happiness,
Emotions aren't as scary once you feel them,
Let them all go Sylvie,
Trust your Destiny,
If I am well and achieve great things-fine,
If I'm not and I don't…that's fine too!
So why is that so damn hard practise?
Maybe that's just Ego,
Ego causes such pain.
Get rid of Ego,
Remember to practise Self-Compassion,
Haven't I inflicted enough pain on myself?
Haven't I been through enough?
How could be so harsh on myself?
It wasn't my fault what happened,
I was born with a split uterus and one kidney,
I had a partial hysterectomy,
Worse things happen and people cope,
They get on with living,
They are special, remarkable,
They are happy and loved.
I know all that now.
I'm living proof myself,
I read about another young girl,
She went through much the same as myself,
Only worse, she lost both fallopian tubes,
But she interpreted it all differently,
She said she was twice the woman everyone else was,
I admire her immensely for that,
It all ties up with self-esteem you see,
Your relationship with yourself,
Attitude is everything,
I realise now how blessed I really am,
I'm young, attractive, have family and friends,
I am a beautiful woman,
I must be, men fall at my feet,
(unless I wobbly over and fall at theirs first!!!),
I have a wonderful partner,
a great sex life, fantastic holidays,
And most importantly,
I have saved myself from a life of severe disability,
And I make one hell of a difference to the world,
Above all I feel good about myself,
That's enough for now surely!
Sometimes MS still makes me weak,
But it has helped my find my Greatest Strength
Of course I'd love for MS to go a way now,
I'd love to be healed,
But that's not up to me is it?
I can only do my best,
And turn the negatives into positives in whatever way I can.
Who can know the rhyme and reason to this life?
I don't know why people suffer?
Life's a tough school that's for sure,
It's full of ups and downs,
Challenges and set-backs,
It's so hard see others suffer to the degree I did….
….on the verge of ending it all…or worse.
I feel their pain too everyday
because I've been there I know what it feels like.
But people can learn and gain from all experiences
if they choose to…
That much I do know now,
MS was my worst nightmare,
But it will become my Greatest Blessing,
Of that I am certain,
I'll make it so,
It's already happening,
It was tough going through puberty,
And I handled it all badly,
I did the same with MS,
I made things far more difficult than they need be,
But there's no point in beating myself up,
I was just so scared…
I have to move on from this point,
Learn all I can from my mistakes,
It wasn't all my fault,
I didn't know about real love and Destiny then,
I do now, thanks to MS so it's a lot easier.
I do get scared that MS is limiting me,
Stifling my potential,
I let MS run riot for the first few years,
I didn't value myself at all,
Will I have to pay a price for that forever?
That's a scary thought!
No I refuse to let that happen!
I will never give up on my crazy Goals,
Miracles do happen,
People can do the impossible.
So I choose to believe I will Recovery,
I'm not talking about the disability,
I can get around that,
I'm talking about my Journey to Wellness,
Fulfilling my potential, boundless energy, health and happiness,
Getting back to the way I was born to be!
Maybe illness is teaching me what I still have to learn?
Maybe times of illness can become special time for me too?
Maybe that way all my pain and fear can dissipate?
Maybe even anxiety and depression can be embraced?
My life is full of Love.
I choose only the best now.
I'm so lucky.
Above all I Respect Myself,
I have journeyed a long way for my years,
Normality is unimportant after all.
I deserve love for being me, for being myself,
I make my man very happy,
We are lucky to have found each other,
I think we'll always be together
But I don't assume anything anymore,
I've learnt that nothing is a cert.
All we have is the present.
Maybe in time my heart can really heal?
Maybe at long last I can truly accept myself?
As a mother, not as a mother, as an employee
not as an employee, as a researcher, not as
a researcher, in sickness and in health.
The important things happen anyway.
I stay focused on my Goals,
My greatest job is to stay in tune with myself,
my higher self, the strong-spirited soul I really am,
the girl everyone else sees and admires,
emotional baggage can be dropped for good,
past-conditioning can be unlearnt,
new healthy thoughts can be introduced,
I can learn to follow my heart,
trust in my instincts,
follow my gut,
it has already brought me so far,
taken me to places I could never have dreamt,
Yes it all takes time,
But know I can do it,
Maybe one day I will free myself from MS?
But in the mean-time what's to stop me being WHOLE anyway,
Simply accepting myself and my life as I am in the present
with all my strengths and imperfections?
Meditation is the key,
"My life" is but a Soap Opera,
(albeit a damn good one at that!),
How I view it depends solely on what is in my head,
My life reflects the fears that lie inside of me,
My deepest fear was that of being different,
Of there being something wrong with me,
Well both of these fears came to pass,
I faced them and life went on,
Now I am befriending the Universe again!
I now know there is nothing wrong with me,
There is nothing to prove after all,
There are scars from all this Trauma,
I'm still a bit scared that the problem is me,
I'm still scared of losing control,
Scared of messing up,
Scared that things won't flow for me,
After all this trauma I don't think that's too surprising,
I think it takes time to get over,
takes time to re-build up your Confidence again!
I have release all my fears go and trust,
And live in the present,
Knowing my best is good enough,
Not taking it all so seriously,
Ease up on yourself Sylvie,
It's about Bloody time!
Wear Life as a loose garment,
Accept the good with the bad,
At peace with myself,
And at peace with the world,
However it shows itself to me,
Simply trusting in the bigger picture
Without having to work it all out anymore
Without having to try so hard.
The rest will then happen naturally,
Flow with the tide wherever it takes you,
Swimming against it is far too tiring!
This way decisions become easy,
Goals can be accomplished effortlessly,
Act instead of Reacting,
Listen to your Heart at all Times.
The key is "Acceptance of what is…"
And "Acceptance of Yourself…"
You can do no more than your best Sylvie.
Non-judgement and Detachment,
Before enlightenment and chopping wood and carrying water,
After enlightenment and chopping wood and carrying water.
The Mind is the most powerful tool of all,
So use it with great Care…
Wish me luck!
All the Best