Return from Absence

It's been a strange couple of weeks. I find it difficult actually seeing people in the flesh having poured out my heart and soul in writing. I am aware that what I write might seem starkly contrasting to how I appear because I have become so good at playing things down. Even when I choose or others choose to mention the blog or how I'm feeling generally, often the words lose their impact and sincerity because my very tone conveys that habitual message of "I'm fine, don't worry. It's all good." It's often only afterwards in the security of my own company that I even realise the extent to which I have been performing.
Why do I do this? Well, for a start, who wants to admit their vulnerabilities? And as soon as people appear at all worried or concerned, I always back off feeling awkward and embarrassed. It's no-one's fault. Both responses are natural I think. I remember back in "the thick of it", just days after losing my second fallopian tube, being on the phone to my dad and talking so incredibly stoically about everything. He remarked on how strong I was and although at the time, I didn't consciously realise how deeply traumatised I was, I did have a sense that I was putting on a bit of a show. After all, I knew it's what he wanted to hear and I was protecting him.
My mum wasn't fooled though. She let me play out my little show for 8 months until I finally felt ready to break down (after the 1st IVF failure), at which point she reassured me with the words, "Zoe, I was waiting for this." What a relief it was to let myself be true to my feelings and to know that my mother was not surprised, nor worried - but in fact relieved that I finally had the courage to be honest. As the months wore on and on and my husband and I became further embroiled in the devastation of infertility treatment, I felt myself losing connection with everyone - even my own mother!
Just 2 days after our 3rd IVF cycle failed, we were on a very badly mistimed 'holiday' with my parents in Co. Kerry. This was undoubtedly the worst point within our ectopic/IVF journey. I can't even remember greeting our parents at the cottage that we'd rented for the week. Nobody or nothing seemed to matter to me any more. I was so deeply submerged in darkness, I was totally unable to escape the panic that was mounting inside me at an exponential rate. I felt almost certain that this juncture was the end of the road for us as a couple - how could we survive any more agony together? I was shot through and tormented by guilt, anger, shame, fear and most of all, self-hate. I felt that our relationship was under the shadow of a huge tidal wave simply because I feared for our future - a future without children, a future without a family and most importantly, a future in which I denied myself the most basic human right - to be loved.
I continued to obsessively scrutinise our relationship. Every tiff or disagreement, every opportunity I stole to avoid sex or even a kiss, became fodder for my inner demons. I was suffering from some sort of masochistic need to microscopically analyse the depth of devotion I had for my husband, even though I knew I loved him from the bottom of my heart. I was still able to talk to him about the black thoughts that troubled me and I still continued to feel comfort and relief knowing that he simply understood me. But I also felt an increased need to be understood by the world around us too.. Yet everything about our journey through infertility was so painfully private, given that sex, love and sexual identity were at the core of it all. And so, I felt trapped and unable to confide anything to anyone but my husband. Throughout the 'holiday' in Kerry, I felt totally panicked if he left my side for even a second because it felt like he was the only one who knew the depth of my suffering. My parents were doing their very best to be let in, but out of fear, I shunned them and sadly watched as they remained as strangers on the periphery.
I remember saying to my mum, almost apologetically, that it was just too painful to talk about it....but that one day, hopefully, I might be able to open up. Little did I know that despite my inability to confide, my mum was intuitively aware of everything all along. But like we said to each other recently, the words had to come from me....in my own time. I guess what I'm trying to get across in this post is how bloody hard it is to talk about infertility. It's so true what a friend recently said to me, that "few people realise how hard it is to say or write down raw feelings". But that once you speak out about them "they somehow lose their power over you."
Infertility is a bit like a tornado sweeping through your life and your marriage. And it takes a long time to feel safe enough to let go of each other's clenched grasp, having missed the eye of the storm by a hair's breadth. It will also take a long time to pick up the pieces and build our life back together again.. During the course of our ectopic pregnancies and IVF treatments, I became estranged and in fact totally cut off from so many people. I had to give up my job and along with it, a host of other social activities that made up a significant portion of my life. And now I am doing my best to re-connect again. It's very difficult, having been partially or even fully absent from everyone's life (and vice versa) for so long. But although infertility will always exist in our life, I finally feel safe and secure enough to say the words that were once too painful to even think. I'm slowly but surely gaining control again.
So please....try not to feel concerned or uneasy if/when I do 'break down' either in person or through my blog. It's just my way of rekindling lost relationships and therefore allowing myself to feel like I truly belong again.

Let Me Feel the Way I Do....

Since having written my last few posts, I've been feeling very vulnerable and at times panicked to the point where I have felt physical pain in my chest. I have broken down three times in the last 72 hours into an uncontrollable fit of teary convulsions - the first time with my husband and two very close friends of ours, the second whilst on the phone to my mum the following day and the third while reading through the draft of this post just yesterday afternoon. Why? What could I possibly have unearthed in the past few days to provoke such a violent explosion of emotion?
For the first time since it occurred, I have dissected and analysed my emotional response to all the events leading up to the surgical removal of my second fallopian tube - and a little bit beyond. My mind hones in my unconscious body laid on the operating table, limp and helpless as the surgeon slices into my belly, severs my second and last tube from the womb and hands it passively to her assistant to be 'disposed of'. Her face is calm and collected, poised in a blank expression of indifference whilst she makes a few banale comments to her colleagues - perhaps in relation to the procedure, perhaps not. Did she conclude with 100% certainty that there was no way of rescuing part of the tube? Did she not even query the benefits of a biopsy in order to investigate the exact cause of the ectopic? Did she not think about how that might ultimately help us in our struggle to conceive through IVF which was tragically now our only option?......or did she go through the technical motions of the procedure without thinking and without feeling?

A woman's fertility is sacred. It is the embodiment of creation and a life-giving force inside us. And yet, I can't help feeling that she just didn't care. She didn't even notice that a part of me died on the operating table that day. And for that reason, I feel violated. I've always been hesitant about using that word because it is a word so often used in the context of rape and abuse. But if you look up the dictionary definition, you will find the following - 
Violate: to treat something sacred with irreverence and disrespect.
It's taken a lot of courage for me to write this post (with a view to publishing it). I've always been scared to admit how I felt about the doctors that treated me during that time and especially the surgeon who performed the final operation. I am only too aware that a lot of people will react with rationale and logic at the forefront of their minds and perhaps an urge to defend them with the comment, "They were just doing their job." As I clutched my husband in tears last Saturday night, I could sense that even he was going there in his head, but before he could think about uttering the words, I interjected with an explosion of repetitive cries to "please....please.....just let me hate her!"

I am not normally an angry person and so, for me, admission of such intense rage is very difficult indeed, but I believe my unconscious effort to keep it locked away for so long has been debilitating beyond all measure. And now, I guess I'm imploring you, as my readers, to let me feel this way too, to be compassionate towards me in my need to be angry and to recognise it not as a failure, but as a sign that I am finally grieving what I lost on that day back in October 2008....because only then can I even think about "moving on" and "letting it go".
Upon searching the internet for literature on grief experienced by women following the removal of both tubes, I was quite disheartened to find that there was nothing really out there. I did however find a website called Hystersisters about women who have had to suffer a hysterectomy. And it seems that, amongst these women, the big burning question is, "Does it ever go away?" This has been the most difficult thing I've had to face since becoming infertile - that sense of emotional agoraphobia and a fear of the infinite.

I'm going to conclude this post with the response to this question which I read on the Hystersisters website. It's a lovely message that simultaneously provides hope and acceptance of your right to feel the way you do:

"Almost all negative occurrences in our lives are tolerable, as long as they're temporary. Will you ever feel like the same person you were before? No-one can answer that question with certainty. But for many women, it does transpire that with the passage of time, the "strange and unusual feelings and unsettling emotions do fade.
But what if they don't? Just as the world is constantly evolving, so are our lives. Perhaps if the feelings do not some day truly go away, they will change. And because human beings by nature are adaptable creatures, you will likely adjust to the phases involved in the transition. To put it another way, you will slowly get accustomed to the new and different way that you feel. It's prevalence and steadiness will make it grow ordinary.
You will come to terms with what you have been dealt and adapt accordingly. As one woman put it, "I think the best thing we can all do for ourselves is to ride that wave of change and passage."

"Doing It" Again....

We went to Rhyme Time at the library yesterday. I immediately laid eyes on a mother who I'd seen a couple of months ago with a huge bump and a little boy of three scampering at her feet. The bump was gone and in its place was a tiny newborn lying on a blanket by her side while she sang songs with her first born. I stared - I couldn't help myself. It was almost like I felt invisible and as if watching a TV screen, I was entranced by the scene before me. The baby got passed to other mummies who wanted desperately to enjoy a moment re-living those early days. I didn't feel anger nor jealousy as I gazed across, only sadness and a heavy sense of isolation from this fertile 'club' of mothers, most of whom seemed to have a small baby and toddler in tow. I tried to imagine how I'd feel if I'd had to hold the infant - Would I cry? Would I feel bitterness in my heart? Or would I simply pretend to myself that I didn't care? I didn't know. I almost wanted to know so as to address the pain. But I just sat on the periphery and watched.
As soon as we left the library, my mood dipped. I would never feel at ease with mums in that situation, not unless they knew.....not unless I offered to share my story. But sometimes you don't want pity, nor to be the party pooper amongst the group. So you have to keep quiet and remain a stranger or simply opt out altogether.
As my thoughts poured out, I started to feel angry again. And it took me a while to realise that I wasn't feeling angry towards anyone, but rather towards IVF itself! Lots of people have been asking me if/when we will be "doing it" again....IVF, that is! And as I reply with my vague, learnt-off answer, "Oh we're not sure...hopefully within the next year or so", I can't help but feel like I'm putting on a phoney air of ambivalence to cover up an underlying seething resentment towards this God-like 'power-to-be' that is paradoxically our hell and our salvation.
IVF brought us our little girl.... But I hated it. I think people expect us to eulogise about the wonders of modern infertility medicine. But unless they've been there, they've no real idea of the anguish you have to endure as penance for that long-wished-for dream at the end of the road. Yes, it's worth it...of course! Ask any woman who yearns for a child, for she would gladly walk barefoot over hot burning coals to be blessed with the gift of motherhood. But isn't it enough that we've endured the pain than we should have to be thankful for it as well? Shouldn't we be allowed to love and cherish our long-wished-for dream and still deeply loathe the very thing that facilitated her creation?
It's a strange and difficult place to be right now - on the cusp of another venture into that dark underworld. On the one hand, I do feel tremendous love for the workforce...for the amazing doctors, nurses and embryologists who helped us with their expertise and (in a lot of cases) compassionate understanding of the stress we were under. But on the other hand, I hate feeling indebted to them and to everything of which that 'world' comprises. It's this feeling that I should owe gratitude towards something which tore me apart, mind, body and soul, that further compounds my sense of failure and humiliation.
So, in response to the question...."Yes, we will do it again". But I do not know exactly when. And it is finances and a want for quality of life with our little girl that will dictate the amount of times we subject ourselves again to the distress of treatment. When we return to the clinic with arms outstretched imploringly we are certainly not returning into the arms of an old friend. We will go back submissively out of love for our child and for us, as a family....But not without fear, trepidation and regret in our hearts that there is no other way.

Why am I Still so Angry? (Part 2)

Back on 21^st October 2008, as the result of one simple operation, I became sterile. The violent suddenness of this event traumatised me so deeply that, no sooner had I come round from the anaesthetic, I immediately became fixated on the fear of terminal illness, then followed by months and years of relentless angst and horrendous plunges into deep and inescapable heartbreak.

Maybe you think I should be thankful to the doctors for rescuing me from a potentially life-threatening situation?...that I should be reconciled in the fact that their better judgement guided them towards the best decision given the circumstances? And maybe I would feel that way too if they had assumed a manner less flippant and devoid of human empathy. As it happened, their total lack of emotional awareness left me feeling even more empty and defiled. These sentiments have never left me. And in fact they've got increasingly stronger as I've become further engulfed in the silence of my secret pain…..so secret that I have been hiding it from even myself and continuously ‘playing it down’ through guilt towards those “worse off” or the shame of indulging in narcissism.

I do remember one doctor – just one, who clearly recognised the severity of what had happened. He met with us just before Christmas 2008 as part of a follow-up procedure and to discuss the plan ahead. And before launching into any medical spiel, he verbalised with genuine sincerity his deep regrets for our loss……But it was too late. I was hurling myself forward in order to find a way out and so I resented the fact that he was “trying to bring me down by forcing me to think of the past” (my words immediately after the consultation). In retrospect, I can see that he was so lovely. And yet I was just too scared and angry to listen.

I wanted to forget, thinking that the appearance of a baby would erase all memory of that day. But he was right to be concerned! And rather than enabling me to forget what happened, the arrival of our baby girl has helped me recognise what i needed to do all along..... to remember that frightening day and all the events leading up it. 

I can never forgive the doctors for minimising the gravity of their actions, whereby IVF would be my only choice to conceive ever again. Doctors have a duty of care to their patients and that should include emotional as well as physical wellbeing. But on that day and in the days approaching my second salpingectomy, not only were they (for the most part) ignorant of the fear that consumed me, but they were shockingly neglectful in their bedside manner that portrayed a disrespectful mix of apathy and shallow frivolity towards something that would change my life forever.

Why am I Still so Angry? (Part 1)

When I try to target the source of my anger, I'm instantly taken back to the days leading up to my second salpingectomy (the operation to remove my 2nd fallopian tube). I had already had to have my first fallopian tube removed just 7 months prior. And so, I was thrown into panic when I realised I was pregnant again with another ectopic. Having been there before, I immediately recognised all the symptoms and had already diagnosed myself before any tests or scans were even carried out.

I presented my self-diagnosis to the doctors and nurses at the Early Pregnancy Unit, but of course, as before, I knew that a diagnosis could not be 100% substantiated until bloods were taken over several days in order to establish a pattern. And, as before, a scan could not be accepted as concrete proof of an unviable pregnancy until my hormone levels had reached a certain level, by which time the Methotrexate injection was unlikely to perform successfully. Methotrexate is a powerful drug that is used to try and dissolve the embryo so as to prevent the necessity of surgical intervention. However, if it is not administered in very early stages, it usually fails to work effectively. I felt utterly trapped and exasperated and given the fact that I never had a chance to savour a single moment of this pregnancy, I felt emotionally numb towards the little embryo that was burrowed inside me – somewhere! But who was I kidding? I was of course tormented by the prospect of having to endure another miscarriage.

We had no choice but to lay low and take the ride. Several days ensued of hormonal analysis and internal scans, ultimately leading me back within the confines of the Gynaecology Unit awaiting the results of another Methotrexate injection following the unsurprising discovery of an ectopic pregnancy in my right fallopian tube. The result of this Methotrexate was everything. If it had been successful, my hormone levels would have decreased or at the very least reached a plateau. But if, like last time, it had failed to work, my hormone levels would have increased, signifying that the pregnancy was still on going and the only choice would be surgery.

I remember in the course of this waiting period, one doctor in particular – a young, Australian bloke who went to great lengths drawing us diagrams to explain the surgical procedure he would perform (if required)…whereby only half or part of the tube would be removed. He seemed to take great pleasure in flaunting the skills required to carry out this tricky but entirely do-able piece of surgical craftsmanship. And then, he concluded by saying, that if all else fails, we would be wonderful candidates for IVF once my damaged tubes were out of the way. I was shocked and incensed by his ability to casually talk about assisted reproductive treatment as if we were discussing a handy short-cut through the park as opposed to the destruction of my natural fertility!

I felt sick with fear as we waited for the doctors to come and tell me my fate. Eventually, they arrived to inform us (to our utter surprise) that my hormone levels had indeed plateaued. I was safe. This time I’d thankfully managed to escape the knife and my fertility was preserved. We were immensely relieved. The whole experience had really taken its toll on us so we planned a little trip to Ireland to visit my family. My hormone levels continued to slowly decrease and so the doctors were happy to discharge me and our failing embryo.

While in Ireland, I started to experience quite severe, sharp pains in my right side. The pain was intermittent so I managed to just ignore it, reassuring myself that it was probably just the side-effects of the drug at work. Upon our return home though, we decided to get it checked out at the hospital, more as a precaution than as a genuine concern. Following another internal scan, we were told that in fact a large mass was present in my upper right fallopian tube and that emergency surgery would be the only option now. We were so shocked and confused. The Methotrexate had worked. How could this happen? How could the embryo continue to grow when the blood results reflected otherwise?

I didn't even have a day to compute the facts and the inevitable consequences of the impending operation. Before surgery, we were visited by the surgeon who told us that she would do her best to preserve at least part of the remaining tube. As I drifted into unconsciousness, these words provided me with my one last thread of hope that my fertility might be saved. I awoke alone in recovery, breathing through a mask, parched for water and morphined to the eyeballs. Within minutes, the surgeon appeared and proceeded to inform me in a somewhat robotic manner that my second fallopian tube had been fully removed and that, judging by the photographic images (which she thrust in front of my bleary eyes), my ovaries and uterus were in fine condition. That was it! There was no “I'm so sorry….We did everything we could….”, nor even the compassion of a gentle touch. Her words were brief and her delivery was brutal. For a few hours, I had the blissful fogginess of morphine to subdue the mental torture that was there, lurking and ready to descend upon me at any moment. But as the morphine wore off, the reality of what had just happened threw me into utter turmoil. 

Our 'Trying to Conceive' Story

I know my blog is more about the hidden emotional undercurrents which are all part and parcel of infertility, but I understand people will also be interested to hear the details about how we actually managed to conceive our little girl. Plus, I feel strongly that many women could benefit from the medical diagnosis that resulted in my finally getting pregnant.
If you would like to hear this story, please click HERE. (We are the 19th story down, entitled 'Zoe's Story')
And do get in touch if you have any questions that you feel could help you.

Breaking the Shackles

Last Sunday (27^th October) I experienced a tidal wave of emotion that had been brewing since about one week after officially starting my blog and which grew to an almighty climax just hours after publicising it on facebook. I felt utterly raw and exposed – scared to death of that fearful eye of judgement which might only come in the form of nonchalance, flippant clichés or dismissive silence, but would be enough to make me feel even further isolated from the world.

I seized this feeling of panic to do the only thing I could do given the momentum of my journey, already well underway. I decided to go and see my GP, my ever-supportive doctor who was there for us both the whole way through our ectopic and IVF saga. It was for this reason that I wanted to see him specifically and that I was practically sick with nerves, provoked by an overload of shame, before entering his room.  What if he made a casual remark about “still not being happy”? I didn’t think I could take it in my emotionally vulnerable position. But within seconds, I blurted out my “confession”, along with an eruption of tears. And from that point, I was able to chat quite calmly while he listened without emitting any air of criticism.

It might not seem like such a big deal, popping down the local surgery for a chat…but it was so much more than that. It was a sign that I felt ready to put my hand up and say, “I need help” and that I was willing to have this officially documented on my medical records. I very soon realised after that appointment that the help I really needed was simply to be heard and understood. We did discuss Cognitive Behavioural Therapy classes which I will attend with great interest in learning the techniques behind nurturing positive thought. But I know that the real key to this sense of liberation which is growing stronger inside me day by day is that I have finally found my voice.

A close friend of my parents wrote these poignant words to me before she had even read my blog:

“Dear Zoe….I will read with interest and even before doing so am admiring of your honesty and generosity in sharing your massive challenges with others. I am big into coming out as a way of claiming and declaiming our own truths and of ending speculation and assumptions.”

She then sent me an email the following day which I wanted to share with you all because it is far, far too special to keep to myself:

“You describe your struggles….the roller coaster….the joys and the blows…without holding back which is admirable. I think that you and your husband have found ways of making love that are untrammelled by stereotypes and although they may not correspond to the myths we are sold are actually part of an honest conversation. I have always thought of lovemaking as just another extension of loving communication…that doesn’t always or ever follow some prescribed recipe for pleasure. Take pleasure in the real.”

Upon reading these words, I burst into tears….beautiful, happy tears to have found someone able to perfectly articulate such a profound depth of understanding.  As time goes on I’m feeling increasingly nurtured and supported by YOU…..my readers. It means the world to me, knowing you are there and that you understand.

My mum sent me a text after having finished reading through my posts. She said: “I hope the three of you can feel my arms around you and hear a heart beating with love.” My eyes still well up with tears every time I think of her words – my beautiful, perceptive mother who feels my pain as her own.

For four years, I grieved the absence of a child. I hated myself and doubted myself as a loving wife for my inability to enjoy sexual intimacy. And now….I feel released, for I finally have the strength and courage to let myself grieve the loss of my womanhood and to speak out about what that means to me and to us as a couple. I know I will never fully recover from this loss. But by speaking out, I can live with love and truth in my heart. This dream is ours to keep.