|Posted on November 13, 2010 at 1:55 PM||comments (0)|
It’s another dreary Saturday afternoon; wet, windy and so typically British. Yesterday, following another challenging week I set myself a small goal… To ensure I went out of the house, if only for a short time. The seemingly simple task of getting ready and venturing outdoors, is something most take for granted. However, for me; all good intentions are often thwarted. This time by debilitating pain, which impeded my sleep and left me feeling as though I’d been run over by a steam roller!
SO, here I am; laid in bed, lap top perfectly poised, brain engaged and ready to update my blog.
Although life has been fraught since the last entry, I’m continuing to develop my collection of “Raw Emotion - My Thoughts In Rhyme.”
It’s not untypical for me to be penning a poem at 3am, apparently many writers suffer from insomnia and are at their most creative during the small hours! I just write when my weary mind and body allows.
I often talk about my endeavours to stay positive amidst adversity. I guess watching The Pride Of Britain Awards is a humbling experience. I couldn’t help be moved by the courage, compassion and decency of some people. It puts my own situation into perspective giving me plenty to be grateful for. As did Armistice day, remembering all the selfless people; ‘our unsung heroes’ who have given their lives for our country.
No matter how difficult life becomes, I have to draw strength from what is good in my life and not what isn’t, or what might have been.
I’m excited as much as inspired by my recent incentive to write. It’s tangible and something others can relate to. I’m truly thankful for the encouragement many of you have given to me. It offers the chance to explore my creativity and challenge some deeply emotive issues whilst providing catharsis.
I might not have achieved the small goal set for this weekend, but my long term goal of, publishing my collection of poems is one that I’m focusing on each day.
Some years ago my mother gave me a framed verse from the Blue Mountain Arts range.
It says :
KEEP BELIEVING IN YOURSELF
“ Every goal that has ever been reached began with just one step… and the belief that it could be attained.
When the road becomes hard to travel and it feels as if you’ll never reach the end…
Look deep inside your heart and you will find strength you never knew you had.
Believe in yourself - and remember I believe in you, too”
By:- Jason Blume
I have to say the verse has become my mantra. Whenever I lose sight of my goal… whenever I really do feel the road ahead is too hard to travel, or when I feel there will never be an end to the trials and tribulations. I cast my eyes over the verse and remember who gave it to me… My mothers belief in me, fuels my desire to fulfil my goal.
Illness has compromised my life, destroyed my career, left me isolated and lonely! BUT there is one thing I won’t allow it to do… That is take away my dream!
|Posted on October 30, 2010 at 10:33 AM||comments (0)|
It’s Saturday, the last in October and the end of British Summer Time; the joy of darker evenings and relentless Christmas advertisements are upon us. The thought of which makes me groan with irritation fuelling a desire to crawl back under the duvet, only to remain there until Spring.
Surviving the latter part of the year is always a challenge. Rarely do I emerge to see the first buds of Spring unscathed. Colder weather exacerbates already troublesome arthritis, coupled with the reduction in sunlight gives reason to define myself as being officially… “SAD”. Blaming this manifestation on seasonal affective disorder of course! However my youngest son may attribute it to another phenomenon; mainly my taste in music!
The impending yuletide festivities serve to reinforce the issues I attempt to contend with throughout the remainder of the year. Now, accuse me of being ‘bah humbug’ but each year I threaten to cancel Christmas due to lack of funds, enthusiasm and energy. All too soon it’s there.. AGAIN! lurking in the not too distant future. Television commercials of trees, tinsel, turkey and gifts, along with happy smiling faces; and oh! SO many sofa adverts, with promises to deliver in time for the ‘Dreaded Day’
It’s taxing enough managing complex health difficulties, a fragmented family and inevitable financial restraints at the best of times. Throw in Christmas, and it’s enough to send me in to meltdown. Having worked on a telephone helpline I understand too well what an emotive, difficult time of year it is for some… Relationship disharmony, spiralling debt matters, grief. All made worse due to the expectation Christmas brings. I wonder how many of us really enjoy it? Once the children have grown up the magic of creeping downstairs to see if Rudolph had eaten his carrot and, if Santa had drank the sherry (although in our house it was milk.) have disappeared, leaving behind just memories of those precious days.
British Summer Time is drawing to a close but are we really ready to have Christmas thrust in our faces just yet? I think by now you’ve realised, I’m not! Why does it come round so quickly? It really is true… Time seems to gather momentum the older we get.
Although I felt it necessary to have a gripe, I do continue to look for reasons to be grateful. As, no matter how bad I’m feeling, there is always someone worse off. I’m continuing to seek solace in writing, particularly poetry; I’m focusing on new beginnings and brighter days. I might have to battle through some darker ones over the next few months but I will continue to draw strength from my belief that one day things WILL get better.
|Posted on October 19, 2010 at 5:33 AM||comments (0)|
It has to be said, I’ve had the most extraordinary few weeks since I last updated my blog. Not only have I celebrated yet ANOTHER birthday, attended some challenging hospital appointments and, dealt with some pretty contentious issues within my personal life; I’ve stumbled upon a satisfying form of recreation… Which happens to be, writing poetry! It seems absurd that a desire to record my thoughts in rhyme has transpired completely out of the blue. Or perchance, out of ‘raw emotion.’
Writing is always cathartic and has helped me through some very dark times of late. Being emotionally charged has produced some poignant pieces of work, and has inspired me with incentive to pursue this form of catharsis even further. Last Tuesday was my birthday, the sun was shining the air was still; a truly perfect Autumnal day. So much so, I was encouraged to forsake my fix of ‘Loose Women’ and venture out into the real world, if only for a few hours.
I took with me my beautifully bound notebook which was a gift from my son and together went to sit in ‘The Emporium’ my local coffee shop. A large cappuccino, a slice of lemon drizzle cake and one hour later I’d written “ The Gift Of Life.” Which today I’ve published on the poetry page.
Although life continues to be fraught I’m grateful for having found solace in writing; a diversity from my trials and tribulations and something tangible that others may benefit from, and even enjoy.
The homecoming of my eldest son and his fiancee was a pleasurable occasion. They returned to the fold armed with gifts to help celebrate my birthday. It would have been perfect had my daughter been able to join us. However, it was still a joy to have my two sons and future daughter in law home together.
As a consequence of the weekend the idea to write “First Born Son” was derived. In time I will be writing a poem about my only daughter and youngest son. For anyone who thinks I may have a favourite, I don’t! I love all my children, implicitly and unconditionally; each having unique qualities.
As time draws closer to my first eye operation I’m becoming more and more anxious, which is bizarre considering all the surgery I’ve previously endured! Surely I should be use to it? I’m attempting to instil some rationale into my psyche in the hope I can alleviate these fears. For some reason it’s proving difficult, the thought of not being able to wear eye make up for a number of weeks is grave cause for concern… I therefore think a viable solution is to purchase the largest pair of celebrity style shades!!
Tomorrow I’m back at the hospital, this time to see my rheumatologist, I think an intravenous infusion of stronger meds maybe on the cards… A little boost to get me through the coming months, as winter always seems to bring further health trials. For today though, I’m tucked up in bed tapping on the keyboard and anticipating my next piece of poetry!
|Posted on September 28, 2010 at 2:18 PM||comments (1)|
Finding incentive to emerge from under the duvet these increasingly darker mornings, doesn’t come easily. The intrusive bleep of the alarm does little to inspire me with enthusiasm to face the day; especially as it seems I’ve spent the entire night tossing and turning. How is it? JUST when you’ve drifted off into dreamful slumber, the crude reminder that morning has dawned has you rolling over in desperate reach of the snooze button. Life isn’t fair; there I was on the X factor stage, singing my heart out in true Mariah Carey style…A standing ovation from Simon Cowell and huge applause from the audience; then… Bleeeeep bleep, bleeeeep bleep!
Swinging my legs out of bed to adopt a vertical position is always a difficult task. To think I use to be a dancer, agile on my feet with elegance and poise. Now, getting out of bed is met with resistance as my creaking aching joints need more than encouragement. Ouch, shuffle, huff and puff as I make my way slowly along the landing to the bathroom banging on my teenager’s door as I go “ TIME TO GET UP” I yell. The yelling usually continues as I attempt to motivate said teenager to get a move on!
Once downstairs I make a much needed cup of tea prior to taking my medication. The next fifteen minutes are spent trying to recall if I’ve actually taken it, whilst ushering my youngest out of the door; before his bus goes sailing past the window - without him on it! The joys of the morning ritual… Hampered by the darker mornings, progressively worsening joints and worryingly, menopausal memory fog.
How did I ever start my day at 6am and, make the long commute into the city? Life now is a far cry from those days. Accepting the limitations and changes chronic illness enforces is the key to managing what at times, appears like a hopeless situation. Life is fraught with difficulties, not least the monetary issues which arise from having such a limited income.
I’ve previously mentioned how the internet has become my life line, a way of life, and a valued means of communication outside of my four walls! Thank heavens for social networking sites. Although checking emails is always a tedious task, rarely does my inbox produce anything of interest. Face book notifications, online billing and potential dating matches; which is most bizarre given I cancelled all subscriptions many years ago. However, this morning proved an exception; had lady luck finally shone on me?
“Congratulations your ticket purchased for the British Lottery E game has won in the first category - £500,000.00”
Now that IS serious money, and totally amazing considering I didn’t know anything about a purchased E game ticket. Was this my lucky day? It certainly was… Not only had I been promised half a million pounds, but Mr James Bill had selected me from ECOWAS charity donations to receive the sum of $850,000.00... The answer to my prayers and all things dreams are made of.
Hang on though, more emails! This was just the beginning… Mr Dave Sayer from Publishers Clearing House informed me that my email address had been selected to win $1.000,000.00. How very generous of him, AND as if all this wasn’t enough: Andrew Lu Sung, a solicitor acting on behalf of Major Fadi Saab (who had the misfortune of being blown up in a bomb blast during the Iraq war) wants to appoint ME as his next of kin in order to receive his 24 million dollar fortune; WOW! this really was turning out to be my day.
Catching my breath I went on to open the next email I surely was on a roll here… Dreams of a new home ensued, a life free from financial restraint Woo hoo! A new car and all things glitzy and glamorous; who wants to win X factor now? I could live like a celebrity, record my own song … Why not? Katie Price did! or even publish my own book. After all you can do just about anything if you have money, can’t you?
I’m not voracious so, when I opened Mrs Zeng Q Zhen’s email, on behalf of Lloyds TSB group in Hong Kong offering me a 30% share of a $92,000,000.00 fortune I just knew I had to donate this to charity - all those close to my heart.
Never before had SO much luck bestowed me, and in one fair swoop. My day began with a rudely interrupted dream and less than a couple of hours later promises of gargantuan sums of money were flooding in from all organisations.
I might be vulnerable but I’m certainly not gullible, although the inclination to indulge the ‘Dream’ for a short while didn’t harm. It’s alarming to think that these fraudsters go to such elaborate attempts to extract hard cash from unsuspecting individuals, by requesting personal details before releasing non existent money.
One of life’s lessons worth remembering is, the important one… “ There’s no such thing as something for nothing” … Oh well! Back in the real world, the fight continues.
|Posted on September 21, 2010 at 6:31 AM||comments (0)|
Eleven years ago last week, a dear friend of mine passed away, suddenly… It was her fourtieth birthday, she had everything to live for; yet, without warning a fatal brain haemorrhage took her life and deprived her family of a wife, mother, daughter and sister. One minute she was enjoying a celebration lunch with her loved ones, the next she’d slipped into a coma; never to wake up.
Her death was untimely, a young woman in her prime who’d finally found contentment with her third husband. How can you reconcile such a tragedy? A precious life extinguished without warning, or even the chance to say “Good-bye”. I was devastated, it was inconceivable that someone seemingly so well, could have her life cut short; just like ‘that!’
We first met in 1985 when the family moved into the house next door. I had one son, she had a boy, and two girls… Ironically, two children from her first marriage and, one from her second. Life is full of ironies; I never imagined I would have another child, let alone divorce, remarry, and go on to have a third. First we were neighbours, but quickly became good friends.
Our conversations would continue for hours. When I wasn’t at work we would spend all day together. We’d share each others secrets over copious amounts of coffee as our children played. Her vibrant persona was refreshing to be around, she was a joker who loved practical jokes. One April fools day she had me well and truly fooled. I wanted a new carpet in my living room which had taken weeks to save for; when the day arrived for my long awaited carpet to be fitted I was genuinely excited. After it had been laid I was thrilled, the room looked larger… It was perfect!
SO, when I received a phone call telling me there was a problem with the carpet, but not to worry it could be removed that afternoon, and re laid within six weeks! I was astonished, and tearful at the prospect of not having a carpet for a while… I rang my friend who promptly came round. I should have known then, just by the look of devilment on her face; but she proceeded to put the kettle on as she listened to my story of woe before jumping and shouting “APRIL FOOL!” We later laughed at how gullible I’d been.
I was surprised the first time she confided in me… her husband appeared pleasant, caring and attentive, therefore the enormity of her disclosure didn’t register until I began to notice the bruises. Together we planned her escape, it was like a military operation which we meticulously executed after weeks of preparation. I was her friend, her confidante… I had to help her.
The morning of the “Great Escape” we waited for her husband to go to work. Once the coast was clear we frantically set about loading bin liners full of belongings into both cars, in our desperate attempt to move her to a safe house. The adrenaline was pumping through fear of him returning home before the deed was done: I was afraid of his reaction, especially if he were to discover my allegiance was to his wife. My priority however, was to protect my friend at all cost. I’d witnessed her general decline in the days leading up to the move. Tension in the house was at fever pitch and his violent outbursts were becoming more frequent and sustained. The weight had dropped from her once voluptuous frame, and patches of alopecia were visible through her thinning hair.
It’s hard to describe the relief felt having moved my friend and children to a place of safety. A place where she courageously began to build a new life and, in the years that followed married her one ‘true love!'… A previous boyfriend, ‘the one who got away’ however in this case they were reunited and, for ten years lived happily together. It really was a ‘love story’. It breaks my heart to remember his sobs on the end of the telephone as he tried to find the words to say… his loving wife, my friend, had died!
My mother accompanied me to her funeral, I couldn’t have gone alone. I was ill, lupus was particularly bad back then and I was struggling to cope. I remember holding my mothers hand throughout the service as painful emotion engulfed my body… The images of her children, husband and parents, clearly distraught as they walked behind her coffin will never leave me! There was little anyone could do to offer comfort, still in shock I paid my respects and left them to face their grief as a family united in tragedy.
It had been over two years since I discovered I had breast cancer, fortunately by the grace of God I was lucky, very lucky… It was a humbling experience walking away from the churchyard knowing I would never see my friend again. I was angry with God who had taken a young woman too soon; yet, SO grateful he’d spared me. I’d prayed to him during my darkest hours, not only to ensure I survived to see my children grow but to give me strength to face the challenges of a life threatening disease.
Life is a fragile gift, one we should never take for granted. It isn’t easy to make sense of mine but what I do know is… I am here, humbled by the sadness in the world and eternally grateful that I find the resolve to carry on!
Two of my closest friendships were born out of us being neighbours; whatever happened to neighbours becoming good friends? This dying phenomena occurred to me only last week as I was locking my front door.
A young girl was entering the house next to me, her car had infuriatingly been parked in my space only days earlier. I assumed she was just visiting.
“Hello, is Emma not very well?” I enquired, only to be met by a blank stare!
“Emma” she replied, “I don’t know who you mean”
For a moment confusion ensued.
“Are you living there?” I asked.
Looking at me as if I was completely stupid, she answered “Yes”
It took a while for my brain to compute… Emma and Craig had moved out without a single word and, incredibly this new girl had moved in without me noticing!
I moved to this picturesque semi-rural village over twelve years ago seeking tranquillity, a temporary stop gap away from the hostile environment we were living in, and a place to heal the emotional scars I bear from the past. It really is a beautiful part of the world, a beauty that is often lost in a cavern of loneliness. Many of the residents were born and bred here, as were their ancestors. I can’t imagine living an entire life in the same place. I’m a city girl at heart having grown up in suburbia. I moved here as a temporary measure, yet all these years on I’m still here; unsure of my future! It’s sad to think that in twelve years I’ve never shared a cup of coffee with a neighbour… The village is rife with gossip, quite a paradox considering the lack of communication between it’s inhabitants.
The memory of my once neighbour and dear friend will live on and I will fondly remember the days when “Neighbours really were - good friends!”
|Posted on September 10, 2010 at 9:25 AM||comments (1)|
Surely it can’t be Friday, not again! Is it just me or does time gather momentum the older we get? Another week almost gone, damn you lupus “why can’t you just leave me alone?”
Last Sunday afternoon I enjoyed a little retail therapy, something I rarely do these days. Shopping, once a pleasure is now a challenge in itself. Surprisingly I rose to it, wasn’t beaten and managed to bag a few bargains along the way; returning home suitably satisfied.
If I didn’t laugh I think I’d cry… just as I’m starting to feel, dare I say; a touch better. I wake in the middle of the night with ‘that’ familiar feeling, another wretched infection was brewing. By the early hours of Monday I knew a visit to the doctor was priority, I needed antibiotics, and fast!
Prescribing medication isn’t easy for someone with lupus, as sensitivity to drugs is often common. I’ve violently reacted to medications from antibiotics to pain killers, and anti-depressants! So, beginning any new drug is always done with trepidation. I was slightly alarmed on Tuesday when I woke with painful swollen ankles, but not as much as when I read the ‘possible side effects.’
Goodness me…“ Pain, inflammation or rupture of tendons, particularly around the ankles may occur with this class of antibiotics, if you notice tendon pain or inflammation rest the limb and consult your doctor!”
I have a good relationship with all my doctors, especially my gp. I remember some years ago British Telecom suggested frequently called numbers to add to my ‘friends and family’ list, I couldn’t help but chuckle when my gp surgery was amongst them.
One thing I know I’m guilty of... is playing down symptoms and not consulting a doctor when perhaps, I ought to. My gp has accused me of being a little too stoical. Many times I visit the doctor when I’m over an acute episode; I don’t want to be a nuisance, or I feel too ill to put on my make up… the mask I face the world with! Yes you can laugh, but it’s actually true, a consequence of distressing body dismorphic disorder.
However, I decided to make an informed decision to; ‘watch and wait.’ Fortunately the swelling went down within 48 hours and I’m pleased to report my Achilles tendons are still intact. I’ve completed the course of antibiotics, but I’m not convinced the infection has completely cleared. I think I’ll be making another visit to the surgery on Monday if there isn’t an improvement over the weekend.
Friday is here… again! It’s a miserable day, torrential rain is splashing against the window pane, the trees are moving against the blustery weather and I’m grateful I don’t have to venture outdoors: A small mercy for having chronic illness.
I really can’t believe how quickly the week has gone, I lose so many precious days feeling unwell whilst attempting to maintain sanity. Fortunately, I’m over the worst and have survived the ‘dreaded side effects.’ The week is drawing to a close and a new one is looming; on Tuesday I have a pre-admission assessment at the eye hospital for my long awaited surgery. I have to admit... for someone who has had SO many operations, I’m strangely apprehensive.
For now though, I’m going to administer a little tlc and maybe a glass or two of red wine, be kind to myself and await the new week in anticipation of a brighter one!
|Posted on September 1, 2010 at 10:23 AM||comments (0)|
Last week, quite out of the blue something happened and as a result I went in search of my bible. Now, I’m not religious, but I do posses an inner faith; a faith which has been tested at times, almost irrevocably. Lately I’ve been a little dispirited, maybe even a touch sorry for myself, which I’m aware isn’t an attractive trait. It really isn’t easy to remain positive when everything you attempt to do is fraught with complications.
If I go out, will I be able to park the car near to where I’m going? It might be a bad day so I won’t be able to walk too far. It might be windy, and psychologically I can’t cope in the wind. If my eyes are particularly bad, I might become disorientated whilst walking alone. The bright lights whilst out shopping exacerbate my already blurry vision, and the new multi million pound refurbishment of my local shopping centre with its dazzling new floor doesn’t help my sorry situation.
Having a complex set of difficulties is compounded by concern for the future and my ability to pay the bills. I get by, I manage to tread water, but live in the knowledge that I may be sucked under; and drown in a sea of hopelessness if I take my eye off the ball for just one second!.. Living in the here and now is the way I survive, concentrate on today, who knows what tomorrow may bring.
SO, last week one of my new found ‘twitter friends’ who, reads my regular blogs reminded me that; I’m at my strongest when I call on my faith… It’s easy to lose faith when bad things keep happening, to become self absorbed and angry at what ‘fate’ has dealt. In hindsight this subtle encouragement was all I needed to re-examine my beliefs.
My silver and white bound bible was gifted to me from a very special friend before she departed to make a new life in Thailand. On turning the front cover I saw the poignant words
“ This bible was presented to Jane, a treasured friend - Bless you always, Debra”
I sat for a moment, gently flicking through the pages until I rested at John 16:24.
Thirteen years ago I discovered I had breast cancer. In order to achieve the maximum chance of a complete cure I was strongly advised to have a mastectomy. I was only thirty six years old, I had three young children and, an already complicated set of medical issues. This surely was God doing his worst… wasn’t it?
Being born with Goldenhar syndrome had ignited profound BDD, ( body dysmorphic disorder) and a self hatred beyond anyone’s comprehension. For me, it was torturous and impacted greatly on my ability to lead a normal life. My daily ritual was exhausting, I had to present a perfect image to the world in an attempt to disguise how ‘ugly’ I was. Therefore, all anyone saw was an immaculately groomed woman…
“How could she possibly be ill” The reality is, the daily ritual was an illness on its own. A painful, lonely, misunderstood condition that tears at the very core of your being and impedes everything you set out to achieve.
This cruel twist of fate had me challenging everyone, but most of all my faith!
How after everything, could I be told, I had to lose my breast? I felt like someone ‘Up there’ was having a laugh…
“Go on, let’s see how strong she is now, let her jump over this hurdle”
In times of sorrow, nothing makes sense. All I knew was, I had to survive by protecting myself. I was to lose my breast, I already had body dysmorphia: How! in God’s name was I to recover from this without further psychological damage?
I was SO very afraid, I was to have major surgery for cancer, yet I was equally afraid of being stripped bare, free from make-up leaving me vulnerable and unable to function. Once the fear and panic had taken over and the enormity of what was happening became clear, I realised the only way I would survive the ordeal was to have my surgery in a private hospital: I needed my own room, my own bathroom, I didn’t want to face ‘everyone else’s visitors’ and have a flimsy curtain as the only means of privacy between me, and whoever was in the next bed. That was it, I had the answer… Only there was one problem, how would I pay for treatment in a private hospital?
I approached my then husband, and had a tearful conversation with my parents. The issue was I had cancer, I needed major surgery and the treatment was available on the national health service. So as it was said “ I should bite the bullet, and be strong”
At that point I fell to pieces, I couldn’t cope and after a heated debate on a very rainy Sunday morning I left the house shaking with emotion. Tears were streaming down my face and for the first time since my diagnosis I sobbed incessantly. Eventually I found myself sitting in the churchyard… and there I sat, alone for hours, and prayed!
The following morning I awoke with an enormous feeling of strength… I had the answer. My GP had a fund holding practice, I was a qualified nurse. I knew how fund holding contracts worked, and how if I prepared my case I could present a perfectly good argument to the practice manager; as to why I should have my treatment in a private hospital. I set about making phone calls, I was a woman on a mission… a mission to save my life.
I had a renewed sense of fight… I was going to do this, and I WAS going to do it MY WAY! I was overjoyed when I heard my hard work had paid off. I’d managed to negotiate a fund holding contract with BUPA hospital and a date was set for surgery.
It was a definitive moment in the churchyard that Sunday morning, my prayers were answered and from that point on, I knew I would be okay.
That wasn't the only situation where I’ve found myself swimming against the tide desperately trying to keep afloat. It happened three years ago when I was in danger of losing my home. I was unable to maintain the mortgage payments after being ill health retired. I sobbed into my pillow one night and prayed for help. The following morning I met a man, who, absurd as it sounds bought my house… I’m still in the house and three years on am about to start paying rent!
My eyesight has deteriorated over the last five years following the diagnosis of posterior cataracts. Lupus has caused me to reject the contact lenses I wore from the age of sixteen, and glasses are unable to correct my vision sufficiently. Plus, I have an additional problem of not being able to wear glasses comfortably… The abnormality of my left ear causes them to adopt an irregular stance on my face, making me look like I’ve had one too many! My view of the world is miserable, bleak, and very dull.
More than two years ago my ophthalmologist advised I have the sub capsular posterior cataracts removed and multifocal lenses implanted into both eyes. I would not benefit from the standard procedure. Standard cataract surgery is available on the national health service but these special implants are not, and can be quite costly. Having compromised vision also compromises my hearing, as I rely heavily on lip reading. All of these compounding medical issues do indeed make life challenging. So, as a result, a special request was made to the primary care trust to ask for the surgery to be performed on the national health service.
When I’m feeling unwell as I have lately, I become more intolerant of my reduced vision. Last week I thought it appropriate to write again to the hospital as I’ve been waiting too long, and have enough to contend with.
John 16:24... Ask, and ye shall receive… Sitting in the solitude of the attic last week, my safe haven, the place where I attempt to unravel my thoughts and make sense of everything, I read the scriptures, and prayed…
For some it will be nothing more than a coincidence, but yesterday the news that the surgery can go ahead arrived, I was overwhelmed with joy. I was spared from writing again to the hospital and the prospect of a literally brighter future filled me with optimism!
I’m grateful to my ‘twitter friend’ for directing me back to my faith, and to my dear friend who gifted me the bible, but mainly to the phenomena that I believe to be… ‘Divine Intervention’
|Posted on August 16, 2010 at 2:14 PM||comments (0)|
On this day in 1977 the world heard the tragic news, Elvis Presley The King of Rock and Roll had died!..
Most of us can recall our whereabouts with precise detail the moment such profound news breaks. My recollection of John Lennon’s fatal shooting three years later is in stark contrast to the passing of Elvis.
I was a young naïve student nurse about to embark on a secondment of night duty. I was preparing for my shift when I switched on the television and heard the announcement; John Lennon had been shot… dead! It was the 8th December 1980, the melancholy tune of ‘Imagine’ will always serve as a reminder of the trepidation I felt on facing my first night shift, as the images of him, and Yoko Ono in that large bed were played tirelessly.
I don’t remember Elvis’s death, I should do! I was in my mid teens, he was phenomenal; an incredibly handsome man who reduced women, and men, to hysteria. 1977 was undoubtedly the most painful year of my adolescence and, as a consequence I was unable to process such a momentous event.
I was encapsulated in a private world of anguish, one which began on what should have been; a normal Sunday afternoon. Thirty three years on, my heart is beginning to race, my palms have become clammy, and silently I’m starting to sob… as I remember. There’s no easy way to say what happened that afternoon, but what I can say is… I was robbed of the most precious gift a girl can have… her virginity!
The demeaning, vile, repulsive act I was subjected to, was undeniably responsible for what followed. Unable to tell anyone, I attempted to cope alone… I rebelled against my parents, thus causing a breakdown in our relationship.
The acrid memories of that excruciating time still cause me immense grief.
With hindsight I can see how I set about searching for love, fuelled by the overwhelming desire to eradicate the painful memory of that fateful afternoon. I was a young girl who already believed she was ugly and unworthy and, who sadly possessed an alarming sense of self hatred.
Throughout my life I’ve questioned why I became sick. Is it true that psychological trauma can trigger some physical response? It’s certainly true of depressive illness, but what about tangible physical illness. Can our bodies be rendered SO low that we become vulnerable to disease, can our immune systems suffer at the hands of such trauma?… It’s most ironic as only weeks after ‘THAT’ event, I became SO very ill. A severe case of mononucleosis had me admitted to hospital, it cost me months of schooling and more than likely was the precursor to my diagnosis of systemic lupus erythematosus.
Here I am, ALL those years on from ‘The Kings’ death and I don’t have any memories of such a momentous occasion. I think part of me died too that year, setting the scene for what became a life time of physical and mental endurance.
However, it is with much happiness I CAN recall precisely what I was doing on the 16th August 1984; I was awaiting the birth of my first son. A beautiful bundle of precious joy, whos birth was to be induced prematurely the following day. Although, being 5 stones heavier whilst suffering from pre-eclampsia and pruritus, which meant my blood pressure was raised and my body itched incessantly, wasn’t joyous… BUT, the moment I held my baby in my arms on that very hot afternoon, I knew that every gruesome stone I’d gained, along with the lost hours of sleep, due to my irrevocable irritating skin had been endured out of love.
It’s unbelievable that Elvis Presley died thirty three years ago today, what is more unbelievable is that tomorrow my baby will turn twenty six. Two momentous occasions, one lost in an abyss of sorrow, the other remembered with pride and happiness.
Rest in peace Elvis and Happy Birthday Adam!
|Posted on August 5, 2010 at 9:12 PM||comments (0)|
I’m back in the attic following a brief respite from writing, the large skylight reflects brightness into my otherwise dreary world, and the tranquil atmosphere provides the perfect place to unravel my thoughts. It’s a cathartic exercise, which in conjunction with living in the ‘here and now’ has become an integral part of life.
Living one day at a time is crucial to managing a debilitating disease, nevertheless it isn’t an easy thing to do. I constantly beat myself up pushing the boundaries of my limitations just that little bit more, whilst attempting to induce normality into my existence. Then, as a result, I’m left to face the repercussions of my actions; resulting in an enforced retreat into a reclusive world. For some it must be hard to imagine, that I do in fact spend many days in solitude! I suppose it has become my coping mechanism… go to ground until such time I can face the world again. I often wonder what it’s like to have an abundance of energy with no physical restraints.
I awoke on Tuesday after yet another, almost, intolerable night. It doesn’t matter how exhausted I am, I’m just incapable of drifting off into peaceful slumber without the use of hypnotic drugs. The raging intensity of emotion during those long dark hours is tantamount to torture, as night time exacerbates already tiresome symptoms. My head throbs, my joints hurt, and uncomfortable neuralgia gives rise to tears of frustration. Eventually I fall asleep, only to be woken by the extreme change in temperature, an irksome consequence of the wretched menopause adding insult to injury!
Soon after waking it became apparent I was going to have to cancel a tentative dinner arrangement I had made with a friend for that evening. All too quickly I recognised the signs of a recurrent infection which meant commencing further medication was a priority. Again, I was thrust into a disheartened acknowledgement that life is, and always will be compromised!
I was looking forward to catching up with my friend of sixteen years, she had been my rock throughout the initial lupus diagnosis and then breast cancer in 1997. Sadly we don’t see each other as often as perhaps we should, although, I do try to arrange a meeting at least twice a year. I guess true friends are the ones you can meet up with after months, yet feel as though it was only yesterday since the last time. We can talk for hours, she has an incredible perspective on life, is extremely grounded, intelligent and has been happily married for twenty eight years. I’m in awe of my generation sustaining lengthy relationships, the longest relationship I’ve ever had with a man is with my hairdresser!
I’ll always be grateful for the support my friend gave me during those traumatic years. The day I received my breast cancer diagnosis, she sat beside me, her eyes filling with tears as I told her the news. However, it wasn’t long before we were laughing again, she has the uncanny ability to have me laughing in the face of adversity. The day I went into hospital to have my mastectomy she arrived with a bag of presents, including five pairs of what she called ‘appropriate hospital knickers!’ a teddy bear, perfume, magazines and chocolates, such perfect gifts.
It was during the difficult time of early diagnosis that I relied so heavily on her, not only as a confidante but as someone who could look after my eldest two children at short notice. My second marriage was crumbling and circumstances at home often became fraught. I vividly remember one night being so ill I was fearful I might not wake up. She later informed me, on taking the children to her house that night she had never been so scared, but described her enormous relief on hearing my voice the following day.
Once I divorced and moved away we began to see each other less, my unpredictability makes it difficult to maintain regular contact, but when we do eventually get together I can be sure of good conversation, lots of laughter, and her always insisting she pays my share of the bill! Which I’m truly thankful for.
I sincerely hope it wont be too long before we can rearrange our 'girls night out,' In the meantime I’ve been thinking of all my special friends who, over the years have touched my heart, it makes me so very sad that life is passing by, I’m trying to keep afloat and the people I once shared good times with are no longer around. SO to all my absent friends…I miss you!
|Posted on July 26, 2010 at 8:43 PM||comments (2)|
Life has without doubt dealt some cruel blows, which at times are beyond comprehension. If karma is to be believed, I can be forgiven for thinking I must have been wicked in a previous carnation. Although I‘ve endured countless difficulties over the years, I can be thankful for three precious gifts… My children.
It has to be said, without them I might have crumbled long ago. Shortly after my simultaneous lupus and breast cancer diagnosis I was interviewed by Radio Lancashire. Asked how I remained strong, the answer was simple,
“My children, I only have to look at their little faces each day and that alone gives me the strength to carry on”
Thirteen years later the same can be said, although those faces are no longer little, they are still my babies who I love with all my heart. I’m filled with pride when I think of their accomplishments, each of them having left school with qualifications to be proud of.
My first marriage ended when my daughter was two, and my son was seven. Sadly my daughter has no recollection of living with her Dad. I married again very quickly and through that union my second son was born. He was just three years old when the marriage ended. The circumstances surrounding the break up were distressing, there was conflict between my husband and my eldest son, which in turn had an extreme effect on his psychological wellbeing. I was left with no alternative, but to remove my son from a volatile situation.
I left the marital home with all three children in June 1998. My eldest son later described feeling as though a tremendous weight had been lifted from his shoulders. Although I struggled financially and, we were living in a house that in hindsight was too small for three growing children, all that mattered was, he felt safe, secure and loved!
As a family we were close and still are, we talked a lot, probably sharing more than I might have done had I lived with a spouse. I wonder if my relationship with my eldest son would be as solid had I not left his stepfather; most likely not, but my children mean the world to me and, throughout the trials and tribulations I’ve always endeavoured to be the best mum I can. I don’t pretend to be perfect and I haven’t always got it right, but I have been able to hold my hands up and say… “I’m sorry!” Encouraging each of them to share their problems, no matter how big or small, safe in the knowledge that mum will be there day, or night with unconditional love has been the essence of my parenting.
Any parent will understand the instinctive feeling to protect our offspring regardless of age, it’s intrinsic from the day they're born. However, I’m struggling to reconcile how powerless I’m feeling as my little girl aged 21 attempts to rationalise deeply emotive issues, brought about by the affliction we both share, Goldenhar syndrome. I often refer to this bond as kindred spirits who share a unique empathy with eachother.
The rare genetic syndrome was discovered three months after her birth. Following genetic testing it was explained that a mutation during the 8th week of foetal development was responsible for my congenital abnormalities. Unusually the same mutation occurred during the 8th week of my daughters development, which meant the genetic defect had been passed directly from me to my baby... In most cases the syndrome is sporadic!
As a result, she has a coloboma of her left eye affecting the fundus which in simple terms means, she has unilateral vision. Her pupil is keyhole in shape and, unresponsive to light which causes distressing photophobia. The iris is oval and the orbit slightly smaller. Anyone who’s experienced ophthalmic drops used to dilate the pupil, will understand how uncomfortable this can be! At eight years old she underwent surgery to remove a dermoid tumour and accessory ear tags, which are also a presentation of Goldenhar syndrome.
Growing up my baby learned the hard way, her lack of peripheral vision had her frequently crawling in to objects she couldn’t see; as she grew her lack of depth perception meant she had to learn how to negotiate stairs. Her first three years were worrying, as we waited in anticipation for her to reach each developmental milestone.
It’s hard to believe she has a visual impairment, she lives life to the full and, has matured from a little girl with an aura about her far beyond her years into a beautiful young lady, her smile can lighten up a room; her effervescent personality and infectious laugh has me laughing with her!
Sadly, like her mum she’s prone to periods of depression, a confidence crisis when the reality of her affliction is brought to the fore. She wears her hair to disguise her eye, a side parting sweeping the length over her forehead so only her right eye is visible. Something I have done throughout my life… hidden behind my hair!
Change isn’t something she finds easy, meeting new people causes her anxiety as she worries how people will perceive her. When she was younger some children shattered her self esteem by ridicule… again something I can relate to.
Last weekend my daughter was introduced to some new people at a social gathering and, cruelly subjected to a rude insensitive comment about her eye, in the form of mockery. I only wish the perpetrator of this vile remark could be held accountable for the psychological damage he has caused my little girl. All set to start a new job tomorrow, this ignoramus shattered her confidence and left her seeking reassurance and comfort.
Hearing my little girls tears over the telephone had me rendered powerless, I wanted to wrap my arms around her, kiss her forehead and soothe away the pain, in a way only a mother knows!
Whenever she has difficulties I know she turns to me, she knows that I TRULY understand her and that I’ll never minimise her pain. I will do whatever it takes to help her through the bad times… to the time I can hear her infectious laugh again.
I was dealt a poor hand of cards, illness quashed my chance of a career and, often I feel empty and unfulfilled… especially now that two of my brood have flown the nest. But parenting is a job for life, I might not be able to work and, materially I have little to give
BUT what I can give is … my unconditional love for EVER!