Cystic Fibrosis is a genetic condition that affects approx. 1 in 25,000 newborns. Although technically a rare disease, cystic fibrosis is ranked as one of the most widespread life-threatening genetic diseases. Cystic fibrosis (CF) is a chronic illness that affects the digestive and respiratory tracts resulting in generalized malnutrition and chronic respiratory infections, there is currently no cure for CF however early diagnosis, better treatments and significant research has improved both the quality of life and the life expectancy.
However 18 years ago I knew none of this and was blissfully awaiting the birth of my fourth child. At the beginning of February, my beautiful little boy made a speedy and timely entrance into the world. Like all parents’ I spent the days following his birth, gazing at my wonderful little boy, falling in love with him and imagining a long, healthy and happy life filled with wonderful adventures and experiences. Although he was a little small, I breast fed him as I had done with other children and he thrived, and at his six month check up he had gained 10 pounds.
He was my perfect blonde, blue eyed boy, he slept well, ate well, rarely cried and when he was awake, he smiled and cooed at everyone, but at 7 months old, all that changed. He was hungry all the time, so I introduced solids, which seemed to help for a little while, but he became fretful and unwell, my GP was a great support to me at this time and we agreed it was probably an allergy, so I tried other foods which again only worked for a short time. I did some reading at this time, and what kept cropping up was allergies, coeliac disease and cystic fibrosis. But I pushed cystic fibrosis to the back of my mind. That couldn’t happen to my family, it just couldn’t. I delayed returning to my GP because I was by this time terrified and I was also very unwell myself, with repeated attacks of painful mastitis, as a result of his sporadic feeding. I kept hoping that something would click into place and everything would be well again. Eventually though I had no choice, he was losing weight and something had to be done.
He was admitted to hospital immediately, and tests were done as an emergency, including a sweat test, and I awaited the results. As the time passed by, I became a little more reassured, surely if it were something serious I would have heard by now. Shortly before 5pm though, a group of people started collecting outside our door, and my body went cold, I started shaking and this voice inside me was screaming ‘go away’ over and over. My little man had cystic fibrosis. My first thoughts were you’ve made a mistake, you must repeat the test, and that I was going to outlive my child. But they were in no doubt, the sweat test had showed a significant level of chloride. Everyone was very kind and supportive, but I was in shock and had started grieving for the life my child should have had. I was raised a Catholic but hadn’t practiced or prayed in a long time, but that night after Fin had fallen asleep I went to the hospital chapel and cried.
What I remember most though about that time, was the young couple across the hall from us. Their 2 year old son had been brought in to hospital to die. I’d never before or since seen that much pain, terror or desperation etched into someones face, or sheer physical exhaustion in their bodies. Shortly after the doctors and nurses had left our room, there was a gentle knock on the door and she came in and sat down and said in a very quiet voice, “I’m not going to pry, but I know you’ve just had bad news and I thought you might need company”. In the final hours of their sons life, she was there to support me, and that to me was humanity at it’s finest. In the days and months that followed, when I started feeling sorry for myself, I thought of her and it gave me great strength. Their little boy passed away that night and they slipped quietly out the hospital and I never saw her again, but I have often thought of her and her kindness and gentle strength.
Over the following days, we started meeting the CF team, Phsyio’s, Dietitians, Cathy the CF nurse and Dr. Brendan Watson our consultant, more tests were done, medication started and relevant information was given, to enable us to have better understanding of what was happening. Cathy was amazing, with her wonderful and kind nature and she reminded us that it was important to always keep hope alive and to keep a sense of humour. Dr. Watson, who sadly passed away 6 months ago, was equally inspiring, and always referred to the parents as his Mummy’s and Daddy’s. A wonderful pioneer in the treatment of CF in children and kind and compassionate man.
My son responded rapidly and well to treatment and we’ve been blessed that he hasn’t had many chest infections, in fact his first serious infection which required long term IV antibiotics only occurred when he was 14, he’s had a few since then, but the treatment is excellent and he has had no permanent damage to his lungs. He is a very healthy 17 year old with cystic fibrosis. We’re a long way from the death sentence I imagined all those years ago. Treatment for CF has improved greatly over the last 20-30 years and CF patients are living longer and healthier lives as a result. Granted our days revolve around his medication and physiotherapy, but that is a small price to pay. Fin’s understanding of his condition isn’t great, he also has Aspergers, which can complicate matters, and we’ve had to gradually give him more information as he has been ready to comprehend and understand it, but as time as passed, he has started taking more responsibility for his treatment and physiotherapy. We are very hopeful for his future.
We moved to adult department at the beginning of last year, a change that was more of a struggle for me, than for him. Foe me, it was like the final stage and despite everything going well, it was the slippery slope, but we’ve been reunited with Cathy, who moved to the adult department a number of years ago and that was great. Our very first visit, I explained to Cathy how I was feeling. She understood and reassured me with facts, they have people in their 60’s and 70’s in the clinic and with the advancement of treatment, they are for the first time having to treat people with cystic fibrosis for age related disease.
While Fin’s health has been great and we are one of the lucky ones, and there are many more like us, it hasn’t all been plain sailing. I’ve gone through great emotional turmoil, as a parent, I’ve played the blame game, I’ve sobbed and screamed and I’ve grieved for all those hopes and dreams, especially in the early days, but it does get better and all those feelings lessen and you just get on with it. It may not be the life you dreamed of for him, but that doesn’t mean it can’t still be a great life. And we’ve had some wonderful experiences and met some wonderful people along the journey. And we’ve also had experiences which we can laugh at now, such as the time we arrived at the clinic at 8 in the morning, to utter the immortal phrase “The cat pulled the iv out”, I’m quite sure they’d never heard that one before or since. You don’t think that’s funny, well maybe you had to be there. All in all, I’m a better person for my experience, I’ve learnt what’s important, of how strong I can be and of how important and precious every minute of every day is.
So why am I writing this, my son is shortly turning 18, a wonderful milestone and I wanted to explore my own personal journey. But more importantly, I’d wished that I’d had someone who understood what was happening for me, someone to talk too. The team were brilliant and answered any questions or concerns I had but it wasn’t the same. I wished that there was someone there to tell me, things will get better, that everything you’re feeling is normal, and that I know what you’re going through. Another parent. It’s okay to cry, it’s okay to grieve, it’s normal to blame yourself, but ultimately in the end, it’s not your fault. I still cry, I’m crying today but that’s okay too, because sometimes waves of grief and sadness just come out of the blue and you just have to go with it. Keep hoping, laughing and smiling, it will take you far.
I’ve been going back over my old posts recently, two reasons primarily, the first to reevaluate my own personal journey. The second to explore how I’ve developed as a writer. So today I’d like to revisit an old post and explore it further in light of my recent experiences, my own story rather than my growth as a writer.
I do like what I wrote back then, it spoke to me at that time, of how I wanted my life to be and I recall a feeling of being uplifted on completing it, but did writing it make any difference, the short answer is no, not then, not for a long while. We think if we say something often enough it becomes real. If only it were that simple, the reality though is that, we are what we believe we are and back then I still had to hit rock bottom before I could start believing in a better, happier, worthwhile me. Why are some people perfectionists, in a nut shell, we have low self esteem, we strive to prove our worth, to ourselves and to others by reaching for unattainable perfection. In believing in our low self worth we anxiously strive to prove ourselves, there is no in between, we’re black or white, all or nothing and success or failure. Low self esteem patterns of behaviour are extensive, but for me I’ve always listened to and analysed the words or statements of others. That was my trigger, my pattern of destruction, and believing myself to found wanting fed this cycle of perfectionism/procrastination. Words hurt, nuances and tones crush.
Harking back to an old mantra of our childhood and the schoolyard.
“Sticks and stones may break my bones, but words can never hurt me.”
If only we’d learnt to believe that, all those years ago. But words have the power to be the most inspiring or the most destructive force on earth. And the careless words of a thoughtless person, became the catalyst to all that came after for me. Do I blame her, not entirely, not even mostly, if my own worth had been strong, those words could never have held that much power, but we all need to take responsibility for what we say and the consequences that unfold. So were those words, derogatory, offensive or damning. No they were fairly innocuous in themselves, but to me, with low self esteem and reeling from having just lost my job and security, they were overwhelmingly devastating and undermined everything I had worked hard for. Those words only lost their potency in recent months, when I came to a powerful realization, so powerful that with the tears and release, went so much negative energy. That was the moment when everything started clearing for me, when I accepted and let go. In letting go of those words, everything else started falling away. The need for approval, the need for constant company, the need to always say yes and the need to be perfect, all gone.
My inner demon is quiet now, I hardly ever hear from her, and if she does make an appearance she gets ever so quickly gagged and pushed to the back of my mind. So how then too is the perfectionist in me fairing, I honestly don’t know, I haven’t been in contact with her for awhile. That feels so good to say.
I’ve completed my Advanced Diploma now, although it very nearly became another casualty, what kept me going, the support and friendship of the three very wonderful women that I met through my studies, without them I would have pulled out, without a doubt. The final part of my advanced diploma, a thesis on the practical application of hypnosis and hypnotherapy, was completed in April this year, was it perfect, no but I was happy with it. And the best part of all of this was when I stopped worrying about how good it was, it freed me up to do a paper that my teacher thought worthy of publishing on his website. Yeah I’m never doing that perfectionist rubbish again.
In letting go, I’ve also started taking more risks, and no longer living a life of ‘what ifs’, I’m ready to start working again, and to start seeing clients. And best of all, I’ve grabbed hold of nerves and doubts and reconnected with an old friend. To my memory, the sweetest and kindest boy I’ve ever known and it’s been great getting to know him all over again. I could never have done all this two years ago.
I’m coming rapidly to the end of my therapy. I was talking to a friend about it last week, she asked how I felt about it. In the spirit of positive thinking I responded, that I was great and it didn’t bother me, but the reality is a bit different. I’m scared, scared of retreating back inside me, with only my horrible critical self for company. Don’t get me wrong, I’m not admitting defeat, because I’m going to work very hard to stay positive and strong. I’m on the usual drugs, antidepressants to lift the depression and anti-psychotics to stop me from getting too high and I’ve no doubt they’ve helped me considerably, but having someone to talk to about living with bipolar depression has been a god send and without the therapy I don’t believe I’d be anywhere near where I am now.
Therapy has given me the space to talk, cry, howl in pain, to strip my very being down to the basics and start rebuilding and accepting and really living. It’s given me the tools that have allowed me to become once again, content, strong, independent and hopeful. Recently I was asked to think about what makes me resilient, to write about it, I was excited at first but as I sat down to write, nothing came to mind. I know I’ve developed great resilience but it was an unconscious enlightenment, I just was, I feel ready for anything right now. But that isn’t enough, to have any hope of meeting depression head on the next time, I need awareness. So I began journalliing, I forgot about an audience and wrote just for me. What a powerful tool a journal is, to write as thoughts come to mind, no matter the order, as you release one thought another comes to mind and another. What I’ve learnt is to be aware of all my thoughts, to challenge the negatives and challenge the critical thinking, don’t allow them to own you and never give power over yourself to any other human being. Be your own master and let others be theirs. To own who I am and make no apologies, to love my own company and to allow that aloneness to energize and strengthen me, to find lots to laugh at and always be hopeful, nothing is insurmountable. And finally hindsight, I’ve survived depression and suicidal thoughts, a few times now and I’ll do it again. That’s what makes me strong right now, and right now is where I’m at.
But right now, I’m still in therapy…..
I’m not a fool, I’ve had several bouts of depression over the years, and I doubt this recent one will be my last. If and when that time comes, will I be able to meet that challenge without my crutch, will I remember everything I’ve learnt or will I be doomed to repeat the cycle of pain and loneliness and descent down that dark and bottomless tunnel. Journal, hindsight and challenging the thoughts. Let it become my mantra.
When I first started writing this blog the superego in my byline was a very dear friend. And yes he’s still a very dear friend and still capable of some amazing superego qualities (you’re smiling aren’t you, Exultatron). I tended to live vicariously through him back then, to look to him for approval, he was the exciting to my questioning and doubting. But as I’ve emerged that superego has slowly become me, the me I am right now, right this moment, the me I want to continue being, an exciting and wonderful future that is my doing. I’ll still at times be that sidekick, because I’ll always continue to question, occasionally doubt, and maybe I’ll even hate me. To ignore that possibility, is to put my head in the lion’s mouth, a dangerous folly. It is strange that this is my blog, my journey and yet I made myself invisible. Instead of being a participant in my own life, I became a watcher from the sidelines.
The observations and obsessions of a Superego’s sidekick. I’ve come full circle, I’m the superego and occasional sidekick. I’m now an active player in my own destiny and this is my story.
We come to end of another year, and find ourselves reviewing what 2012 has been for us. For me it’s been nothing like I expected, but therein lies the problem, I have too many expectations. I planned and forgot to live. I was looking at my last New Years resolution message to my friends, my wish was to be more spontaneous and open to so many possibilities, but more often I’ve found myself crippled with doubts and inadequacies. It’s not all bad though, I took two huge leaps into the unknown, I walked away from comfort and support each Wednesday morning, in an effort to find courage and strength from within and occasionally I was Lunarcy with a capital L, but more often I was ahem, hello I’m here, won’t someone look at me lunarcy. The second was an exciting but terribly scary return to being a student. Part of my studies have been a deeply personal assessment, dredging through the past to find the real me. But in truth I started this journey nearly four years ago, and by god a lot of what I found hurt, but when I think of the me before that, the girl with the veneer of normal, functioning and in control, I much prefer the imperfect Lunarcy.
I started writing this blog, firstly to fulfil a dream but most importantly to be able to express my thoughts and feelings because verbal expression has always been difficult, even at times with my closest of friends. But I lost focus and tried so hard to be good, that I forgot to be me, raw and honest. My own style, my own way! I’ve just recently been reminded of that. Some of my favourite discussions are those of the midnight variety, where honesty and affection abounds, and where the most liberating and delicious of life’s lessons take hold.
I don’t need approval!! How right and how real that sits with me, and I know in my heart it’s not necessary to look for it, because in being me, a joyful, free and loving me, it’s given freely and unconditionally from all those I love and hold dear.
21st December 2012 looms, the Winter Solstice or the Wiccan holiday of Yule, to others there are different connotations, I like to think a new energy is coming into the world, and between 11 and 11.10am, when the calendar changes (or so I’ve been informed) put all your hopes, desires and dreams out there. I’ve a feeling 2013 is going to be a very lucky year.
Of course, a little part of me thinks that Mayan calendar guy all those thousands of years ago, just got sick of writing 19th December 2012, 20th December 2012, 21st December 2012, put down his writing implement and said sod this, let them write their own damn calendar.
So this is going out, unedited, un-reworked, un-request feedbacked, un-left in the drafts, whilst I build up the courage, just me and my thoughts. I like it!!
Two or three months back I was thinking 2012 should have been my year, the year of the Dragon, my Chinese astrological sign. My year for wonderful things to happen. Dragon the fearsome, loyal, kind and hard working, the traits that could lead me to greatness.
In the last two weeks of 2011 I was made redundant from my job of 8 years. If you’d asked me to sit down and think about what defined me, my job would probably not have made it to my list. But losing it undermined my very core. For me it was about security in a world in recession, an income, getting out and meeting people, and in holding down that job, a belief, that what I did, I did very, very well.
At first I embraced the opportunity for change but when the shock was replaced with the reality, my optimism seemed to die. I reeled through the emotions like a woman possessed. Fear, frustration, helplessness and a loss of control over my own destiny, anger, so much anger, mainly towards my employer, someone I’d once counted as a friend and a sense of betrayal. My demon was the alter-ego who has dogged me most of my life. She ridicules me, second guesses my intuition, stamps all over my dreams, she takes me by the hand and leads me down the path of the worst imaginings my mind can create, and devours my confidence. And she always shows up when there’s a flicker of weakness. “What’s the point in trying, you know you’re going to fail”, my perfectionist/procrastinating nature chimes in.
If only I had been left to my own devices, I could have coped. Lunarcy the everyday and my alter-ego Lunarcy the superhero, righter of wrongs and with the ability to take flight and soar, working together we could have been amazing, we could of risen to the challenge, but my demon was in her element.
The turning point, my 48th birthday, end of April, all I wanted to do was sleep through it. Friends though had other plans, a surprise party (the surprise bit I spectacularly messed up – no point being a perfectionist if you don’t do something spectacularly). I went begrudgingly, annoyed with them for forcing me to acknowledge the event. Sometime during the night though something wonderful happened to me. Something shifted in me, what it was, who knows, I still don’t. Maybe it was just being in that room with people who just wanted me to be happy. I wonder do they know how important that night was to me, how much strength I gained from their presence, thoughtfulness and warm friendship, and how it helped to turn my life around.
I now have a direction, I won’t say plan, for me now, plans imply something set in stone. A direction allows me to move forward and allow for change. I’m going back to learning, am I scared, hell yes, but I won’t allow that to derail me. I want to explore an area that intrigues and energizes me. Psychology and Hypnosis, the mind, infinitely creative and destructive. The power to conquer and defy our past or to bring us to our knees. A text delivered a selection of books to me, “some summer reading” he said. Light summer reading it ain’t. I laugh, but I’ll enjoy them so much more than some soppy novel.
I still struggle with this desire to be nothing less than perfect, but the dream is strong, and hopefully enough to push me out of my comfort zone.
I know now that losing my job wasn’t the beginning of the end for me. I was never going to jump, I had to be pushed and glorious new starts often include pain, fear and doubt. Perhaps 2012 will be my year to shine after all.
Where do I see myself in October/November and beyond, will it be with my hand shooting up to answer yet another question, teeth grinding behind at the Noddy Know All in the front row, or standing behind the toilets smoking trying to look cool but in reality just terrified by life. I’m hoping closer to the know all, but without the ‘me being annoying’ bit.
For now I’m reading my books, swotting as it were. A challenge presents itself, deliciously tantalizing and I’m poised and ready. I sit relaxed, a smile comes to my face, and a sense of excitement and the beginning of my path to fulfilment, as the words swirl into my brain, like fingers massaging the little grey cells long dormant, I think ……..
“I wonder does he have any copies of these books in English”.