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.
My daughter announced the other day that her first anniversary is coming up. First anniversary of what! She’s only 19, when I asked her what she was talking about, she looked a little hurt and then a lot disdainful as she replied ” Neil and me are going out a year,, duh”. She didn’t actually say “duh”, but it was implied. And it doesn’t stop there, they have big plans. Big soppy, drippy romantic plans, involving, scrapbooks, photos, etc. Ah!! My eldest son is the same, 3 years with his current wonderful girlfriend and 4 with the previous one. He’s only 24, so many years of drippy romantic blah. I’ve no idea where he got it from, his father is definitely not a romantic and I’m pretty sure I’m not overly so.
When I was their age, here it comes, none of my relationships lasted that long. Oh I fell in love, body and soul, teenage love, but it never really lasted. I hated the clinginess and worse the pedestal placing. I got to getting sick of them fairly quickly, well ok nearly straight away. Maybe I just liked the idea of being in love, but couldn’t handle the reality of it. I think my longest was eight months, and that was only because we lived 5000 miles apart. I think I was more interested, in meeting lots of people and having lots of new experiences, than being shackled to one person and doing the same things with the same people, over and over. Maybe I was a little worse than most, but I think that was my generation, am I wrong.
So why is it this way, why are they in such a hurry to grow up and belong to one person. Teens today have a much harder time of it than we did, I’m convinced of that. Being a teenager in the 70’s and 80’s was a lot simpler. Oh sure we had our concerns, the cold war was raging and that brought uncertainty, and then of course there was the Skylab which disintegrated and fell to earth in 1979. I was convinced it was going to land on me, and yes the world did revolve around me back then. Of course it didn’t occur to me that it was pretty big and it probably would hit more than me, in hindsight. The world was a much bigger place back then, and despite that not as scary.
The internet has shrunk our world, and brought it all into our homes. Everything is at a hands reach, places, people and experiences. And never has there been such pressure to conform. Teens and young adults are being constantly bombarded with what to wear, say, think and listen to, maybe being with one person is a comfort, safety and belonging in an internet world.
A pet peeve of mine, as I segue into a rant is text speak and modern phrases that are peppering social media sites. The first time I received a text full of text speak from a friend, it took me half an hour to work out, she was asking if she could call for a cup of coffee. Maybe she was just very bad at it. Gwyneth Paltrow and Chris Martin, recently announced they’d agreed to a conscious uncoupling, what the hell, separate like everybody else in the same situation. And then last week, my daughter told me one of her facebook friends had just announced she was polyamorous, what that, maybe she’s bisexual, I thought, nope wrong, it means she has lots of partners, at the same time, Mmmmmm, Yep, we had a word for that and it wasn’t polyamorous. And anyway, why would you tell the world that.
So I guess congrats to my daughter and her lovely boyfriend, but don’t forget to be a teenager and have a ball, that’s what it’s for. There’ll be time enough for everything being an adult brings, don’t be in too much of a hurry to get there.
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.
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.
“When we can no longer change a situation, we must change ourselves.” ~Victor Frankl
You think you’ll be friends forever, that this close bond you shared will grow stronger as you grow into your dotage. You’ll be zimmer framing it down to the pub for a drink and a catch up, like you did two weeks ago or a month before that.
But each of your lives are changing and each are heading in different directions. You find yourself doing most of the communicating and you’ll be sending any sort of random text, just so you can hear from them and then you fool yourself just for a little while that things haven’t changed. And for a little while you breathe easily and happily. But you feel this sneaky doubt coming upon you again and it terrifies you, it freezes your heart because they’re still so important to you, so dear, so wonderful. And you feel helpless because you think there is nothing you can do to change the situation.
When I first started contemplating the wonderful Victor Frankl quote, I thought should I have to change everything I am, to become this person your friends want to spend time with, curse my black and white thinking. But I think now it’s more about changing your own thinking, and that’s what I am endeavoring to do. As to the changing myself, damn it all if I was was good enough to know and care for before, I’m good enough to know and care for now. Yes my life has been a roller-coaster of late, but I’ve done my very best with everything that was at my disposal to ride it and survive it. I tried to protect my friends from the fall out as best I could, I never asked for them 24/7, and there were many times when I could picked up the phone and screamed in pain, loneliness and despair, but I didn’t. I guess depression brings out the best and worst in everyone.
I find myself now with a renewed hope that friendship does endure, sometimes that hope is with a zesty spring and yet sometimes still I have to ride through the fear, but it’s there nonetheless. There is life after depression, hell there’s life through depression but I wouldn’t wish it on my worst enemy. Lucky you Ben & Jerry. Mmmmmm ice cream, why do you have to make it so addictive.
Hears to all my friends and a renewed and even better friendship. Love you and thank you.