Waving Goodbye

Eight years and nine months ago I lost some of me. It happened overnight, well in just a few hours. Under a surgeon’s knife. He did it with my permission, I signed a form, said yes. Not realising that in those few hours so much of me would disappear.

I have found ways of replacing some of my missing parts. Found a way to keep smiling, doing positive things with my life. Found ways to deal with the things I can’t replace.

Most of the time.

But every now and again the missing parts take control. I cry a lot on those days. Sob into the silence of the house. Punch my fists into the sofa.

I could list all the missing bits but that would be boring for me and you. If I create my top ten that would be fun. A challenge and I like challenges.So Today’s Number one spot is…

DRIVING

Yes, of all of my missing parts, the one that can cause me to crumble is not being able to drive. Why you may ask?

EPILEPSY

It’s illegal to drive with epilepsy. A safety thing. I wouldn’t want it any other way. I need a complete seizure free year before being able to reapply for a licence and get back behind the wheel. A year which continues to evade me.

I have found alternative ways of getting around. But the frustration of having a car on the drive which physically I am capable of using, but legally cannot makes me foot stampingly mad. Especially when transport or a taxi I have booked doesn’t arrive. Or if I want to pop out when my energy is at the bottom of a pit and walking is impossible. I have lost the courage to get on a bus or train. My seizures have seen to that. Places along the local streets where seizures have caught me out now haunt me. Tease me as I pass. Epilepsy madness has set in!

So now I am saying goodbye to my Dorothy. It’s a sensible thing to do. My head knows it but my heart hates the thought of letting my car go. I haven’t been able to drive her for such a long time. The seizures keep coming, troubling my days. Keeping me away from her steering wheel and pedals.

 

I remember the day I got her home. I felt as though the wind was in my hair. I was free to pop out. Visit friends. Go to the seaside.

But not anymore.

She is going to a new home where she will be loved. I will even get to see her, take rides in her.  But this waving goodbye brings the grief of losing so many parts of me straight to the surface. So, I will cry today.

Tomorrow will be a better day.

Extreme emotions... my new normal

Calm used to be my middle name. Now.. Frustration. Anger. Laughter. Fed-up-ness. Giggles. Tears. ...are as unpredictable as wind on a calm day..

My Dad used to say his bladder was too close to his eyes..I too am good at the waterworks... now I could fill a reservoir...drought...not in our house....

At the moment my OK and Not OK balance on an uneven pendulum. The latest test of endurance is the news that I have A TEN PERCENT CHANCE OF GETTING MY SEIZURES UNDER CONTROL. Yes I am shouting!! I have tried so many epilepsy drugs now my chance of getting back behind Dorothys' driving seat slides beyond my grip, like a boat moving down the slipway into the sea...

Benign tumour indeed...

I recently read a snippet from the Canadian Brain Tumour Foundation on Hammer Outs website  Myths about Brain Tumours Two points poke me in the eye...

• The end of treatment does not mean the end of the experience of having a brain tumour and the person may need to adapt to a “new normal” depending on long-term effects the person may have from treatment....I add in here and complications...
• Any brain tumour is life-changing regardless of grade or stage.

These points take me back to the Neurosurgery Registrars wise words when I was first told I had a brain tumour..if benign you will live but it will be a different life...I am reminded daily of the truth of those words...

My New Normal...I like that ....But my friends would say I have never been normal...Ha ha

My anger and frustration fizzle...

I dig deep to find my coping strategy for this one...maybe I will be in the ten percent group that the new drugs I am about to try, capture...if not there is always public transport, my wobbly legs and the gift of lifts from friends...

The Rug of Hope

Hope is everything

I hope to laugh as much as I cry, 

Dance as much as I stand still, 

Cope as much as I can, 

Live for today,

Find the strength to accept my changing reality.

Me

Escape to the sea

The blue sky wakes me, the sun shine makes me smile, a day for a trip if only I could drive .... memories of days at sea float into my mind...The waves lift the boat free of the sea, my stomach jumps with joy as I grasp the life buoy holding me upright. The sea holds my heart in its hands. I squeal and point when the first whhhoosshh of spray goes up. A grey head and fin breaks the surface. Fellow Caribbean travellers run around the boat to get a closer look, I stay put. Any attempt to move on the rocking boat will leave me doing breast stroke on the floor. I tell Mr H and our new friends to chase it; the grey wonders will perform their show in front of me soon enough....

The sea has been my companion throughout my BT journey. During my frequent visits to the CT and MRI scanners I close my eyes and go back to the sea in Florida. As the warm salty water washes over my toes I feel for sharp edges; I bend and dig, lifting the multi coloured wonders served up by the sea..to add to my collection. The sun pierces my skin as I hold my face up to soak in its sunflower beauty...

In my hospital bed unable to sleep, I visit Lyme Regis a small seaside town where a magical summer holiday had been spent with my friend and her parents Lottie and Albert!  Each day we woke to the sky as blue as the Caribbean sea. The sun pierced the sky from dawn to dusk and we lay on the beach from morning to late afternoon sizzling in factor 2 suntan oil....treated each day to cream buns fetched from the local cake shop; fresher than the fish from the sea...


My recovery was not as quick as expected and as dark days set in I craved an escape.  I dreamt of a cottage overlooking the sea, decorated with nautical blues and whites...long walks over cliff paths as waves hit the rocks below. Afternoon tea in the seaside garden surrounded by the sweet smell of roses as I stared at the sea...buns oozing cream fetched from the cake shop...

I was trying to escape me....

Driving licence reinstated in 2011 I book a hotel in Lyme Regis, pack my new MINI, enlist the driving skills of my niece and set off on my first adventure. Insisting I drive until tired... then Lois takes over... two giggling girls head for the sea...ipod blaring music...living my dream...
Until my licence was stolen again...


Twenty years from now you

Lyme Regis August 2011

 will be more disappointed
 by the things you didn't do 
than by the ones that you did.
So throw off the bow lines.
Sail away from the safe harbour.
Catch the trade winds in your sails.
Explore. Dream. Discover.
Unknown

Epilepsy - Waves Through My Head

I woke with a start. My legs and arms shaking. Cramp! I shouted at Mr H.   I was in the clutches of a wild tiger.  My brain hit the sides of my skull. A black cloud descended. I sank into it... Silence.

Mr H saved me...so he says.. a matter of debate! My first Grand Mal Seizure (now called Tonic Clonic), did not count as epilepsy. One off seizures happen for all sorts of reasons. A Brain Tumour for me...

Then...Summer 2009 I lay in bed as the sun peeped under the curtains. My arm shot out twenty times to stop non existent traffic... Epilepsy. Another uninvited visitor. A complication of my brain abscess. Drugs were tweaked... a second added to the pill pot.

Driving still out of reach due to brain surgery.... now a longer distance to travel...another year....at least.

As a nurse, a knowledge of  epilepsy was assumed. Grand Mals (generalised Tonic Clonic seizures) and Petit Mals (absences) were the extent of my understanding.  I hit Google hard and discovered they are the tip of the iceberg. A myriad of symptoms dangled from websites. Epilepsy Action and Epilepsy Society helped me link the jigsaw pieces: 

• All epileptic seizures start in the brain
• During a seizure the electrical signals in the brain (signals passed between nerve cells)  are disrupted or too  many are sent at once.
• Seizures are different for each person.
• The type of seizure depends on what happens to the person. 
• Not all seizures involve convulsions (shaking and jerking).
• Seizures can be focal (partial), affecting one part of the brain or generalised, affecting both sides of the brain
• Each persons seizures tend to follow the same pattern but they may have more than one type.
• My arm stopping the traffic was a focal seizure from the motor strip of my brain...the area where my tumour had originated.

Anti-Epileptic Drugs (AEDs) stop or reduce seizures. In simple terms they reduce the excessive electrical activity... slow down the brain. Side effects vary. My experience is of low energy levels but as my body adapts this reduces. It is hard to unpick how much of my fatigue is due to the tumour and surgery or the medication.The AEDs affect my memory...I muddle words...call birds kittens, floors tables, shoes sprouts....

Unanswered questions flooded my brain. Epilepsy Nurse discovered, appointment made, interrogation pursued, the epilepsy puzzle began to take shape. I have epilepsy, I am an epileptic, I have epilepsy..saying it out loud helped me believe...

I was awarded my seizure free year in 2011, a drivers pass to freedom was my trophy. A year of trips to the sea my reward.

But a year later a sudden wave of panic fluttered across my heart. Cotton wool fireworks showered my brain and I burst into tears with nothing to cry about...my head seizures had started. My driving stopped. My seizure diary was scattered with scribbles...is a jump in my arm a seizure...  my hand jumping across the lap top key board? ... a wave going through my head? 

More tablet changes...I drag myself out of bed after 12 hours sleep... the towel is hard to lift....

Spring  sprung... more energy...seizures less frequent... not stalled. Taxi is here, I meet my Epilepsy Consultant today....We will scrutinise my diary and see where we go from here...

Driving Miss Dorothy

My last car Wilma was grey, she took me from A to B without a hitch.  I loved 5th Gear...she flew; a tank full of petrol and the world was at my feet.

After the seizure jump started my BT journey, a letter from the DVLA invited me to separate from my beloved driving licence. I took a photograph of my pass to freedom but quivering lips and shaking hands stopped me responding; my sister slid it into the envelope and took it away. 


Wilma sat on the drive for almost a year until someone murdered Mr Hs' car, then with smiling headlights she hit the road.  

I counted the months until my first year was up and my pass to freedom returned;  but in bed one morning as the sun peeped under the curtains my arm shot out twenty times trying to stop non existent traffic. I was six months into my year. GP and Epilepsy Consultant seen, tablets changed and the drive clock starting ticking again. Another eighteen months passed...

...the brown envelope hit my mat on July 13th. Mr H at work, I ran across the road frantically waving the envelope at my neighbours. D Day had arrived.

Lazy left leg meant driving Wilma was impossible, no more sliding her into 5th gear! Visits to the Mini dealers had been frequent, my first in a wheelchair. I wanted a smiley car; a car bought with my heart not my head. 

A second hand, red automatic mini with racing stripes came in...my girl....my Dorothy!  Home again behind the wheel.. like I had never been away.

I cruised along in 'Dorothy' as light streamed through her panoramic sun roof, a grin split my face; freedom again. Delightful trips to the sea and Bath with my friend Jon followed. Dorothy was Our Girl!

But my head mis-behaved... a visit to my GP with heavy heart the following year on July 13th....the funny turns and twitches were seizures...stop driving immediately she said. I slunk home head hanging low. 

I brushed dust off my bus pass, found bus timetables in the back of drawers...put taxi numbers back in my mobile (the wind up one!) and mapped out my compact world....for now...

Dorothy sits on the drive, she smiles at me as I pass; waiting for the day when I will slide in behind the steering wheel and take her back to the sea....