Music to my mind is a most puissant form of magic, and has the power to invoke such strong memories and emotions, that tune that always reminds you of your first love, or the song that could be your own biography, and all those happy reminders of your past.
When Liz first played Ralph Vaughan Williams’ Valse Lente for me, she did so in the hopes that I’d like it enough to start learning it myself. I did, I really loved it, instantly, it spoke sweetly and dearly to me. It spoke to me of childhood memories; merry-go-rounds, music boxes and the Italian commedia dell’arte and its comedic and tragic characters, the Pierrot doll I had as a young girl, and still have to this day. And I played it for my son, and to him it spoke of a fantasy computer game he used to play. Ah, the generations! Music speaks differently to people.
This beautiful piece however soon became a reminder of great loss, the last piece Liz and I worked on together. I stopped playing it and listening to it after her sudden death two years ago. I always knew that when I eventually returned to it, I would have gained at least some acceptance of what is a great loss for me.
I made a promise to you Liz, that I would keep working it, a promise I intended keeping. I’m back working on it now, but I can’t tell you how many times I’ve wanted to talk to you about it. See I still forget at times, that you’ve gone, and I cry when I’m on my own, and oh I still see you walking down the street. However I also think of you often with joy and happy memories and thankfully there’s more of these than tears these days. And I think happy thoughts of a beautiful Valse Lente again.
For you my dear, dear Liz, for all the wonderful memories I have because of you, of music and books, the love of which we shared, lovely evenings with wine and chats, of laughter and silliness and an eternal friendship that will never fade. I love you. I miss you.
Cheers and shine brightly.
Have you seen the suggested posts on Facebook, I’m thinking of one in particular; “Are you depressed about the fine lines around your eyes”. I see red every time I see this. Why do we throw away words in such a thoughtless or careless manner, mindless of the implications and effects over others. Whether it’s using such a powerful word to describe a few lines or making promises to friends we can’t or aren’t prepared to keep.
Depression isn’t being upset over a few lines on our faces, it’s being alone with your thoughts and those thoughts are telling you over and over, you’re useless, worthless and unlovable. It’s pain and not just emotional, it’s physical, and your body aches all over. It’s finding it damn near impossible to put one foot in front of the other, let alone get out of bed in the morning. It’s exhaustion, physically and mentally, but not being able to sleep. You can’t eat and when you force yourself, everything tastes like cardboard. Every sense in your body is numbed, colours are faded, images dimmed, sounds muffled and then there’s the hypervigilence and every noise makes you jump. People talking around you is akin to a jackhammer pounding away outside your door for the last eight hours. You can’t leave the house because crowds make you panicky, shake and sob. Your dreams die and your passions and loves no longer interest you.
Then comes isolation, as people drift away from you, the few that stay around, well you can hear in voice and see in their eyes, their desire to be a long way from you. And why not, you’re not fun to be around and you sap their energy and they’re busy getting on with life. And the others, well they can’t be found, later they’ll tell you, “I didn’t know what to say” or “I wouldn’t have been much help anyway”. Don’t you know I would have given anything to hear you say, I love you and I’m here for you, if you need me. Why couldn’t you have given me that choice. You’re trapped inside this aching body and insidious mind and you just want the pain to stop, so you consider what is unthinkable to a healthy person, and the planning of it is as mundane as making a shopping list. And if things aren’t bad enough, people will tell you, there’s no such thing as depression, why don’t you just pull yourself together. Everybody has bad days. To my mind depression is a grieving process, and the loss is of one’s self. That’s the face of depression. To use this powerful word in any other way denigrates the suffering and desperation of those with mental illness.
But I was one of the lucky ones, I had a great GP, who kept in contact and who knew when it was time to hand me over to the experts. I got a proper diagnosis, my medications were changed and adjusted gradually till they worked for me and then months of therapy. A wonderful space to explore, talk and cry, where I wasn’t judged or hurried away. I learnt ways to process my thoughts and emotions in a more positive and harmonious way.
That was me two years ago, today I’m so much better, but I have to work at it everyday. I can never become too complacent, but I’ve learnt to recognize my triggers and I know when I’m beginning to sink again. What works for me is communication and open dialogue, the power of words, but sometimes it falls on deaf ears, and I’m left reeling from the emotional turmoil. I am overly sensitive and in this dog eat dog world, I struggle. Utopia to me is a world filled with compassion and empathy, what a caring and wonderful society we would then have.
I want to embrace life, it’s experiences and challenges, as well as new and renewed relationships, fully, but how do I do that without getting hurt. Is it at all possible? That is my challenge, I’m back looking for work, a somewhat disheartening process, but I keep my head up and move on to the next possibility. So I’ve got the experiences and challenges under control, but relationships are very different. I always seem to end up getting hurt. Why do I dive in head first, and get so emotionally involved, when I know it’s going to end in tears. Why do I keep making the same mistake. Words again, I get lulled into this sense of security, of believing and trusting, in what others say, but at the same time I’m scared of not believing and not trusting and missing out on something wonderful. What is the key, I really wish I knew. All I can really do, is keep positive and strong and in time too, perhaps my relationships will come good.
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.
Don’t be fooled by me. Don’t be fooled by the face I wear for I wear a mask, a thousand masks, masks that I’m afraid to take off, and none of them is me.
from the poem Please Hear What I’m Not Saying by Charles C. Finn
The world is reeling from the news of Robin Williams suicide. It’s impossible for us to reconcile ourselves to the fact that this man who brought such joy and laughter to the world, could have been in so much pain himself.
If this teaches us anything, it’s that depression does not discriminate. from rich or poor, young or old. Here was a man, so celebrated and loved, by family, friends and the world at large. A wonderful and beautiful actor and comedian and by all accounts a man filled with such great kindness, and yet he was not immune. Depression and suicide, doesn’t make sense and there is no point in trying to do so. Depression is not a life choice, but an illness that can strike at anytime in anyone. And sometimes it’s a fatal illness, we need as a society to become more educated about the illness, to take it out of the dark ages and lift the taboo and then maybe many others who suffer in silence may be saved.
There has been outpourings of grief, sadness and support from across the world, but sadly there has also been condemnation as everyone tries to make sense in their own way of what has happened. But condemnation only seeks to diminish our humanity, and yes we are all capable of finding some level of compassion for others, if not understanding.
If you consider this, each and every one of us has felt despair and loneliness at some point in our lives, many have experienced the devastation of depression and for some the pain is so intolerable and consuming that they consider ending their own lives. Some survive, others do not. Look to your own experiences, open your heart and mind and just for a moment walk in someone else’s shoes.
Robin Williams has me laugh and cry many times, but never more so than now, as I recall the maniacal, jubilant and vulnerable man who was Mork from Ork. I’m deeply saddened by his passing and the world is a little emptier and sadder for it.
Rest in Peace.
Edward Roy Cawdell
“I didn’t want to kiss you goodbye, that was the trouble; I wanted to kiss you goodnight. And there’s a lot of difference.” ~ Ernest Hemingway.
Fourteen years have gone since your passing. Does it get any easier, the days in between do, but those special days, your birthday, my birthday, fathers day, Christmas and the 9th August still bring me to tears.
I remember that day like it was yesterday, the seconds move forward in slow motion. The sounds, images, words and the people with me, so vivid. My brothers voice, so strange, what’s wrong with him, then screaming, frightened children running. Repeatedly writing and writing to leach it from me, but still it stays, will that day always remain with me, so strong. The funeral I was unable to attend, never really being able to say goodbye. For weeks feeling like a part of me was missing, your being like a phantom pain in an amputated limb. I’d wake up in the morning , and for a second everything was normal, until I remembered.
You were only 61, so much ahead of you, seeing your grandchildren arrive into this world, and grow to the wonderful young men and woman they are becoming. Your retirement after all those years working to provide for your family, time for just you and Mum. A massive heart attack in your sleep, the only mercy was that you felt no pain, I’m grateful for that. There were police there, I hated that, it felt so….dirty, but it had to be, a sudden unexplained death.
I do prefer my happy memories though of a very wonderful father, and there are so many more of them, you were funny, intelligent, charming, cheeky and very loving and affectionate. A wonderful chess opponent, but a terrible dance partner, remember the French’s wedding, you trampled all over my feet, you were shocking, but I still loved dancing with you, I was so proud. I remembered you singing in church, how could anyone forget, Cath asked you to stop, she was an embarrassed teenager, but you just said, “God gave me this voice, he deserves to listen to it”. I loved watching you playing conductor to your much loved classical music, when you thought no one was watching. And whenever I hear Vivaldi’s Four Seasons, I think of you. You made everyone around you feel important and special, you had such a natural way with people. You inspired us all, to be kind and loving and loyal and to work hard at everything we do, and I see who you were, in little parts, in my kids everyday.
We all still miss you, myself, Dave, Ted, John, Jen and Cath, but we talk of you often and those memories bring us great happiness and tears of joy. You have lots of grandchildren, five girls and eight boys, they’re growing up quickly and very soon you’re to be a great grandfather, a little girl is on the way. The due date, your birthday. We”re all so looking forward to that. Mum can’t wait to be a great grandmother. I planted a tree for you, I wanted an Elder, but couldn’t get one, so I planted an Oak instead. It’s growing tall, lush and strong, and I like sitting under it and thinking of you. I’ve felt you many times, when I’m talking to you and I hear your laugh, when you come to me in my dreams, I can’t believe we don’t live on. And when I’m old, very old after a long and happy life, with my children, grandchildren and maybe if I’m really lucky great grandchildren, I look forward to being with you again.
All those good memories and mostly good days, I love that, I love that it’s getting easier. I love that the good memories now outweigh the bad one.
God rest you, my beautiful and wonderful Dad. Shine brightly.