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.
Depression is a cruel and crippling disease, but it is a disease, not a weakness. It’s still very much a taboo subject, and the days of institutions and mind numbing drugs still exist. We’re becoming more educated though to mental illness, and this is a very good thing, but we’ve still a long way to go. There are so many treatments out there, the right medication, therapy of all sorts and sometimes the best thing you can do for yourself is find someone to talk too. Back in January 2013, my most recent bout of depression struck, I turned to my GP, a wonderful, wonderful man. He understood and recognized what was happening to me, and stayed with me, supported me, and listened to me no matter how long it took. And when the treatment wasn’t working, he turned me over to the care of people who could. I’m so much better today and am so grateful to him, I couldn’t have done it without him. My struggle was long and difficult, but I’m nearly there, but I would of loved to talk to someone who knew what it all felt like, to tell me things get better.
So if I could go back in time , just for five minutes to reassure and comfort myself. I’d tell myself this will make you stronger and more independent, more forgiving and kinder to and of yourself. You’ll be more understanding of family and friends, all those times when you think they’ve deserted you, they haven’t, they love you, but they just don’t know what to say or do. Be kind to them, they’re doing their best. That night, 3 o’clock in the morning, walking the streets in so much pain, you do have a choice and you’ll make the right one and life will get better. But from that experience, you’ll become more compassionate to those who are suffering. You’ll learn that it’s ok to put yourself first, because putting yourself last didn’t work, you became overwhelmed and broken. And you were no good to anyone, when you could hardly get out of bed in the mornings. Life is precious, wonderful and amazing and you’ll come to believe that again and there’s always someone who can help and cares. Do always try and find something to laugh at or some one to laugh with, the best medicine of all.
If my words and experience bring you comfort, then I’m pleased, look that person and ask for help. It will be given.
“Outside of a dog, a book is man’s best friend. Inside of a dog it’s too dark to read”.~Groucho Marx.
Why do we laugh, what do we laugh at and why do people laugh at different things.
Science first, laughter triggers healthy physical changes in the body. Humor and laughter strengthens our immune system, boosts energy, diminish pain, and protects us from the damaging effects of stress. Simply put, laughter is good for us.
Humour and laughter are a big part of social interaction, people who make us laugh are more attractive and enjoyable to spend time with. Laughing creates a bond and a connection with others. It strengthens relationships, enhances teamwork and helps to defuse conflict.
Sigmund Freud outlined a theory that humour and the use of jokes is a conscious nod to the subconscious. Taboo subjects become more socially acceptable if delivered as a joke. Parapaxes or Freudian Slips, another form of unconscious leakage, although at times embarrassing, can also be incredibly funny.
Why do people laugh at different things. As we age, our response to humour evolves. Children and teens often find toilet humour and slapstick hilarious, while as adults we may still enjoy this type of humour, experience opens us up to more adult humour. Intellect is as important aspect of understanding jokes and their nuances and this develops as we grow and learn.
Society and community plays a big part in what we laugh at. The type of humour we appreciate is often the same as our parents. The great Tommy Cooper was our families great favourite as was Fawlty Towers, Monty Python and The Goons and to this day I still love all of them. Of course personality and personal tastes are big factor.
Another theory is Maslow’s Hierarchy of Needs, as we strive for self actualization, our humour develops and matures. One of Maslow’s 15 characteristics is an unusual sense of humour. As we move through the stages toward self actualization our sense of humour embodies our emotional and psychological attainment. Fascinating stuff, I must read more.
I probably laugh at pretty well anything, however I’m not a fan of crude and offensive misogynistic type humour. I don’t find it at all clever. But I do love the absurd, the ridiculous, black humour, gallows humour, the humour we find in the darkest places of our minds and the darkest times of our lives. The way I see it, if you can find something to laugh when times are dark and lonely, then there’ll always be hope and a reason to get up in the morning.
Some of the best comedy series of all time MASH, Frazier, Modern Family and Fawlty Towers to name a few, all share a magnifying glass look at the absurdity of life. And for most part it’s real, we can relate to it. I don’t know about you, but my family are definitely more Modern Family than The Waltons. Whether it’s spiritual or emotional strength in times of crisis (the Korean War in Mash), arrogance and pride, family life or even marriage, life is funny and it’s best to have a sense of humour for the journey. As Daphne says to Niles, “You’d eat a worm if I gave a french name”.
So favourite comedians, I’m a bit of a Marxist-Groucho not Karl. What am I saying, I’m a lot of a Marxist, the funniest man of all, who can forget, the mirror scene or Why a Duck. Who else likes Groucho, hands up. Love me a bit of Duck Soup, an anarchical, maniacal feast. His timing perfection, his sense of the ridiculous and to my mind he’s a great accidental philosopher.
For me humour has been a god send, a safety valve and an indicator that I’ve come through my dark tunnel. I find myself more able to laugh and enjoy the company of wonderful people. Laughter got me through many a day and got me up in the morning.
Laughter has certainly been the best medicine for me.
Hands up if you’ve ever had vertigo! Not the occasional head spin on standing up too quickly. I mean crawling on your hands and knees vertigo, extreme nausea vertigo, being drunk without the fun bits vertigo or reeling into doors/furniture/people just because you’re standing up vertigo. If you ever have you’ll know it. Well I found something that works, yesterday, seriously works.
My vertigo started about 14 months ago, my first episode was short but very scary and from that, they started increasing in duration and frequency, and at my worst episode my daughter thought I was having a stroke. Of course I started worrying then panicking because contrary to popular belief I am only human and like magic when you worry things instantly gets worse.
Let me just say if you haven’t had your vertigo checked out, please do yourself a favour and do so because there are a small number of particularly icky reasons for it and it’s best to rule them out early. My MRI showed a normal brain, relatively speaking, stop smirking Eilis, Phil, Dessy, Majella, my children etc., etc. It ruled out anything sinister and I was diagnosed with benign paroxysmal positional vertigo, a common cause for vertigo.
Now for the sciency bit, basically I have rocks in my head, only itty bitty tiny ones, but nonetheless rocks. Tiny little calcium carbonate crystals build up creating otoconia (the rocks) and may move into parts of the inner ear causing imbalance. That’s the gist of it, if you want more info talk to Mr. Google.
My episodes had settled but recently they’d started returning and yesterday, I turned over in bed, opened my eyes and the world started spinning. I had no choice, I had an early appointment and had to get up, but about 4pm after spending the day narrowly avoiding involuntarily throwing myself under vehicles, other people and furniture, I went onto youtube and typed in vertigo.
♪ ♪ Hallelujah, hallelujah ♪♪
About 4 down the page was a video entitled “Vertigo Treatment-How to treat Vertigo”. It was uploaded by an
Oringo, Otorol, Otolyng, Ear person who suffers from vertigo herself, following research she came up with the Half Somersault Manoeuvre to shift the above mentioned rocks. I know, Somersault, I panicked too, I hadn’t done one in at least 30 years. But I think I’ve already mentioned it really works. I could feel a slight improvement within 15 mins, an hour later even more and this morning I woke up to a mercifully still room.