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.