My 5 Stages of Grief - Prologue
When deciding exactly where to start my story it became obvious to me immediately that my story starts the day I met the love of my life, Claire. Sat on a bench at the top of a green hill, watching her two young children play in front of her, Claire sat patiently, waiting for the arrival of what could only be described as her blind date.
It was the spring of 1996 and I had been living alone with my daughter Victoria for several years following the departure of her mother to Ireland to pursue a new life with her new boyfriend. Since our divorce some years earlier I had struggled to be satisfied that my daughter was being properly cared for and had been fighting a long battle for custody. No tears were shed the day I received a phone call from Victoria’s mother at around 3pm asking if we can talk. By 5pm that day Victoria was in my care and her mother had left for a new life in Ireland.
The new role of a lone parent took some time to adjust to, having an effect on so many aspects of ones life. While most of my friends were going out on a regular basis, even those with partners as none of my friends had children yet, I would need to arrange childcare and so my social life dwindled into the realms of school runs and shopping trips.
I had previously run my own computer sales and repair business and so computers, and the fact I am a nerd, gave me plenty to do with my time. One particular fascination was the pre-internet concept of dial-up services. The idea that simply connecting a small box to my computer and phone line, and enduring a blast of screeches and bleeps, would allow my computer to communicate with lots of others computers, blew my mind, nerd heaven!
So there I am, navigating news databases and other useless information, while feeling like a character from a sci-fi movie such as War Games, when I stumbled across the term “Forum”. I think my attention was drawn to this word because up until now my experience with dial-up services had been very sterile. Information stored and transferred on computers seemed a long away removed from the public nature of what I knew to be a forum, so I selected the appropriate menu option and took a peak.
I sat staring at what seemed to be a largely empty screen, wondering if there had been some kind of transfer error, when a line of text appeared at the top of the screen, shortly followed by another, and then another. I had walked into what today would be described as an internet chat room. After some time consisting of just reading the conversation I took the plunge and sent my first message, to be welcomed by a host of messages saying hello and making me feel most welcome. Now this was cool!
“Delilah” impressed me from the moment she started speaking in the chat room. It was hard to resist the pull of her humor and after a short time became my partner in crime. I had discovered a way to send audio clips into the chat room, much to the moderator’s annoyance, and we spent many evenings running our own little radio station within the chat room, with Delilah selecting and sourcing the audio clips, while broadcasting them myself.
The first time we spoke on the phone was one of those never to be forgotten life changing moments, or should I say fourteen hours straight of moments! I had never dreamed it possible that two people could talk for such a long time without ever feeling stuck for something to say, or boredom setting in. More surprising, after such a marathon phone call, we were both eager to talk again, after sleeping of course!
This brings us back to the occasion on the hill. Several weeks have passed since we started building enormous phone bills, and the decision to actually meet had been made. I remember sitting in the car park, starring at her back, battling with the usual questions; What if she doesn’t like me? Will we get on? What will I say? Oh, the irony of that one!
After taking a deep breath and summoning my best “Right, let’s do this!” inner voice, I exit the car and went to meet my fate. It was a beautiful day, and as I approached the sun seemed to focus solely on her, more so as she looked up at me, stood before her, smiling in the sunlight. No words were spoken, we simply kissed, and… I think we kissed some more. What will I say? Well I think my first attempts at words may have been wow, or something along those lines. And so began my love story…
I think love can be measured in a number of ways, intensity and scope among them. For this reason I would describe Claire (a.k.a. Delilah), without hesitation, as the love of my life. Intensity was not an issue, our relationship had energy of its own, but the scope of our love was as diverse as it was intense. She was caring and motherly, needy like a little sister, loving like a partner, and much like that mischievous best friend you get into trouble with, you know the one!
Within six months of our initial speechless hill top encounter, Claire had moved in with me, my daughter Victoria, along with her two younger children, Emily and Oliver, also joined by my son Daniel most weekends, to make up my new, but yet to be completed, family. Close to four years later sees the arrival of our beautiful daughter Millennia, completing our family portrait. These were, without doubt, the best days of my life.
It’s hard to describe in simple terms the many intricacies of human relationships, but I always saw my relationship with Claire as a well oiled machine, with all the cogs in all the right places, some cogs were hers and others were my own. Partners in all respects, facing everything life had to throw at us as a team. So powerful was the output of this machine that I finally came to truly understand the phrase more than the sum of its parts.
The autumn of 2002 brought with it a fall in fortune along with the falling leaves. Claire, now working as a manager for an insurance company, and keen to make a good impression in this new role, decided to attend the local hospital with concerns regarding what she believed to be a chest infection. Believing that starting a course of antibiotics sooner rather than later would be of benefit, and reduce the likelihood that she would need to take any time off work so soon after her promotion, it was decided not to wait until after the weekend when our family doctors surgery would be open.
After dropping Claire at the hospital I returned home to look after our children, and working from home most days anyway, continue my own work. After a number of hours passed Claire called to ask if I could take her some night cloths and other assorted items as the hospital had requested she stay in overnight for more tests and observation. To be met by Claire’s reassuring smile put my mind at rest somewhat, and after spending some time with her, returned home once more with a view to return to the hospital again the next day during visiting hours.
Upon my arrival the next day, my heart skipped a beat upon discovering that her bed on the ward had been cleared. A welcome sense of relief was felt upon finding a nurse, who explained that Claire had been moved to another area of the ward, pointing to a curtained section further down. The emotional roller-coaster took another dip upon seeing Claire surrounded by nurses and paramedics. One of the nurses noticed my presence as Claire and I exchanged smiles, taking me to one side for a chat.
The nurse explained how they believed that her health problems were not caused by a chest infection, but in fact a heart problem, whereby the tricuspid valve was not functioning correctly, in addition to what appeared to be a tear in her aorta, the main blood vessel to and from the heart. They went on to explain that this internal bleeding is a serious issue and that Claire was currently being prepared to be transported to another hospital for immediate surgery.
The trip to the hospital, following the ambulance, was spent mostly in a daze, with the flashing blue lights doing nothing to help my state of worry. Once the ambulance had stopped I remember leaving my car with little more than the thought, “they can tow it!” and hurried to catch up with Claire and the paramedics. They allowed us a few minutes together before directing me to a waiting room for the anticipated eight hours that the operation was expected to take. This night had now been promoted to the worst night of my life.
Some fourteen hours later, a nurse dressed in scrubs entered the waiting room and informed me that the operation had been successful; that she was now in recovery in intensive care and that I could go in and see her now. The nurse went on to indicate that her surgeon would be with me presently to explain further the details of the operation.
Entering the intensive care unit was like walking onto a set for a sci-fi movie, beeps, flashing lights and monitors everywhere. Claire, buried beneath a web of tubes and wires, looked peaceful, with a healthy glow now replacing her previously pale complexion. As I sat there, holding her hand, I remember smiling, with a renewed sense of hope that everything will be ok, we’ll get through this hiccup and things will return to normal. It wasn’t long before a doctor gained my attention and beckoned for a word. After kissing Claire’s forehead, and whispering, “You hang in there girl”, I joined her surgeon stood a few feet away.
First he explained that they had replaced her heart valve with an artificial one. He further explained how they had repaired several rips in her aorta caused by stretching, and that this stretching is likely the result of a genetic disorder called Marfan’s Syndrome, a disorder largely effecting connective tissue within the body. This was great, it sounded like they had managed to patch her up with no problems, and for the briefest of moments allowed myself to listen to the inner voice whispering that everything is going to be ok.
This moment was indeed brief; as the surgeon went on to explain that they had turned the sedation off some hours ago, and that they would have expected Claire to wake up by now. The fact she had failed to do so meant that Claire was now in a coma. It was suggested that I prepare myself for the possibility that Claire may never wake up. This was not a point I was prepared to concede and dismissed the very notion, choosing to believe that she simply needed a rest and would wake very soon.
On the fourth day of just sitting and holding her hand, only leaving her side for toilet breaks and to update the family, the nurses arranged a place for me to stay locally, only a stones throw from the hospital. Whilst I had no intention of leaving my lover’s side until she opened her eyes, a shower couldn't hurt!
Day seven brought with it a blow to my hope, as they began filtering her blood to support her renal functions. I remember whispering something along the lines, “You need to stop this and wake up now”, into her ear. The hand holding vigil continues, with by now, a fair knowledge of the function of every machine and wire now attached to Claire.
Day ten, exhausted and in desperate need of a shave, I returned to Claire’s side after indulging in my new diet, consisting mainly of coffee. On this occasion I sat on the bed beside her, careful not to disturb any tubes or wires, and said, “Hello sweetheart, I’m back”. Talking to Claire this way was not uncommon after being told that although opinion was divided, it may well be possible for those in a coma to hear some of what is said to them. I found myself completely comfortable with this concept in addition to my own thoughts that my familiar voice could help serve as a beacon of sorts, to help Claire find her way back to me. What I didn’t expect was for her eyes to move. Now wondering if after ten days of hoping that I had imagined this I spoke again, “Hello darling, can you hear me?” Again her eyes moved, and with a muffled shriek of joy, I hurried off to find a nurse.
Within an hour of first moving her eyes, Claire was responding to questions as best she could without speaking, and breathing for herself. The ten days of coma had taken a toll on her body, leaving her extremely weak, needing water fed to her off a sponge as she was unable to hold anything for herself. We were told to expect an extended stay in hospital, but it didn’t matter, Claire had come back to us, we would cope with that trivial detail.
The speed of Claire’s recovery not only astounded me, but also the professionals involved in her care. Within a short few months, and after begging the doctors to allow her to come home, even if only for the holidays, it was agreed that Claire be discharged. This took some getting used to, not because I had grown accustomed to her absence or anything like that, but because Claire now ticked like a clock. The artificial valve in her heart could be heard quite loudly whilst in bed, serving as both a reassuring sound, and a distraction when trying to get some sleep.
Within four weeks of returning home, Claire had returned to work, leaving me stunned at the overall speed of her recovery, and impressed with how little she had allowed these experiences to affect her. Claire’s trademark smile was once again everywhere I looked, and family life, for the best part, had returned to normal. Three months after her initial discharge from hospital we attended a clinic appointment, and after a series of tests it was pronounced that everything was looking good, and that another appointment would not be required for a further six months.
Shortly after arriving home from a romantic break in Amsterdam that Claire had arranged in honor of my birthday, we made our way back to the hospital for her latest clinic appointment. We were both in good spirits, with a positive outlook, as we sat waiting for her name to be called with the results of the tests undertaken earlier in the day. The doctor indicated that the artificial valve was functioning as expected and that no further stretching had occurred on her aorta. His expression, now changing to one of a more serious nature, preceded his announcement that they suspect further internal bleeding and that Claire, at some point in the near future, may need a further operation. Finally he stated that he would be in touch after speaking to her surgeon.
As soon as we left the consulting room I could feel Claire’s despair at the thought of another operation. Indeed the thought of Claire having to undergo any more suffering than she had already endured made me feel quite nauseous and so suggested we grab a coffee in the hospital café. It seemed the longer this new thought had to take hold, the more down and frustrated Claire would get, and so I spent most o this time trying to convince Claire that everything would be ok, and that compared to the previous operation, would be a cake walk. After finishing her hot chocolate, Claire conceded that I was probably right, and the usual smile I had grown to love, returned once more to her face.
As we approached the exit to the hospital, Claire turned to me, the smile now replaced with a look of dread as she dropped to her knees, clutching at her back. I helped her to a nearby seat and then wasted no time acquiring a wheelchair in order to push her round to the accident and emergency department at the other side of the hospital. After explaining the situation, and insisting that they obtain Claire’s notes from the clinic she had attended that day, she was admitted again and moved immediately to a ward. A further operation was scheduled for the next day. We were told that unless Claire undertook this operation she would be dead within three days due to internal bleeding caused by another rupture in her aorta. Upon Claire signing the consent forms we were further advised that her chances of survival were only forty percent and that the chances of her having full use of her legs again would be a further forty percent.
The fight seemed to flow out of Claire rapidly, and she was clearly scared. For the next twenty four hours I would not acknowledge these pessimistic odds, instead I would focus upon her amazing previous recovery, and set about convincing Claire that she was an odd breaker. I needed her to fight. She was young, she was strong, and she could beat this as she had done before.
Again, the overwhelming sense of relief was overpowering as the nurse explained that my wait was over and that Claire was back in intensive care. This time, the ten hour wait had seemed far longer than the fourteen from the previous occasion. Once back by her side I was approached once again by her surgeon who explained that during the operation it had been decided that rather than simply patching up her aorta with more grafts, that they would instead replace her entire descending aorta with an artificial one. He also explained that due to Claire’s previous coma it would be likely for this situation to repeat itself. Armed with the facts from the previous occasion I immediately inquired as to when the sedation had been turned off, and when she was expected to wake up. Claire’s surgeon indicated that a response should be forthcoming quite soon after the sedation had ceased, and so this could be any time.
After about an hour Claire opened her eyes. “Yes, no coma!” I thought to myself as I moved towards her to speak. “Hello baby”, I said with a huge grin on my face. After looking at me, somewhat puzzled, Claire replied, “Who are you?” This caught me off guard for a moment, unsure as to whether this was Claire making a joke, or whether she in fact did not recognize me. Before I had a chance to speak further, Claire started to struggle to get out of bed, causing an influx of medical professionals to surround her in an effort to prevent her pulling out anymore tubes or wires. “Yes, she moved her legs!” I thought to myself, as I backed away to allow them space to work.
After managing to get Claire to settle, a doctor approached and advised me that everything was looking good but that Claire was complaining of chest pain when she breathed. They had decided to sedate Claire once more with a view to putting her back on a ventilator for a while, to give her a rest. I explained the situation to Claire, who seemed to recognize me now, and told her I would be here when she woke up.
After three days of this medically induced coma I was told there were no signs of improvement and that they would keep her on a ventilator for another few days. On the sixth day it was decided that they should wake Claire up, but leave her on the ventilator. This could be achieved with a procedure called a tracheotomy, which would allow her to be conscious whilst still benefiting from the support supplied by a ventilator. The procedure was planned for noon the next day and so I ventured home to update the family and get some rest, planning to return in the morning, before the procedure was due to take place.
Halfway through my journey back to the hospital my mobile phone rang. Glancing at my phone and noticing it was the hospital calling is about all I remember of the early part of the day. Even though I could not answer the phone because I was driving, I knew deep down something was horribly wrong, in fact I was convinced that Claire had passed away. Everything from this point on is a total blank, up until feeling a hand on my shoulder and a voice saying my name. Upon looking up I noticed that I was sat on the floor outside of the intensive care unit. “Darren, come inside so that we talk”, said the voice, still sounding off in the distance as I glanced at my watch and noticed it was now 3pm and I had lost about four hours. Still in a daze I followed the nurse into the unit and into a small office where I was invited to sit down.
I was told that Claire had suffered a major bleed on her brain earlier in the morning, and although they had administered treatments to stop the bleed, about half of her brain will have suffered severe damage and was so bad that she would not recover, she was brain dead, and now only the machines were keeping her alive. I was also informed that the law requires that they wait 24 hours and then conduct a range of tests to confirm brain death, before switching off the machines. These 24 hours were spent holding her hand, stroking her hair, and talking to her, knowing these would be my last words. The nursing staff obtained a tape player and I played a mix tape containing love songs that Claire had made for me some months earlier, again and again, for the entire time remaining. When the time came, I said goodbye, and held her hand as the machines were switched off, her breathing stopped, and she slipped peacefully away. These last few moments would become etched in my mind, becoming the subject of my nightmares for months to come. An unwelcome action replay if you will.
Upon returning home, in a total state of shock, I had to find the words to tell our three year old daughter that mummy was not coming home. The look on her sweet face as the words sank in is another unpleasant memory that would haunt my waking and sleeping hours. Truly the worst task I have had to perform in my entire life.
Emily and Oliver, Claire’s children from another marriage, who had lived with us as part of a family from an early age, were staying with their father during this period. Four days after Claire passed away, and only a day before they were due to return home, their father called me. At first I thought I was subject to some sick cruel joke as he explained that Oliver had just suffered a major heart attack and had been declared dead upon arrival at hospital. It was suspected that he had suffered from the same genetic disorder that had taken his mother. First Claire, and now my healthy and active step son, aged only nine years old, had been taken from us, obliterating our family within the space of a week, leaving only total devastation in its wake.
And so began my eight year journey through the five stages of grief, documented in the pages that follow, using a combination of self observations and poetry to describe the emotional roller-coaster and upheaval that each of these individual stages brought about for me personally.
