Talking with the husband

Tonight is our last night in Puglia.  Tomorrow we head for Rome, the airport, and fly out on Tuesday.  That will be the end of three wonderful months in Italy.  Three months with my husband that form part of an experience we never expected to have.  Three months where we actually didn't rip each other’s head off, though of course there was a bit of yelling, usually over the issues of travel planning, or navigation.  Fortunately, yelling like that is quickly forgotten.

I've had friends and family joke about how often we have wanted to kill each other.  And yes, probably the answer has to be “sometimes” if we’re honest.  But when some people say this to us, they sound puzzled that we could go almost four months (since we left home) with each other as company, as the only people we talk to, as our social fun, and emotional support.  Yet we have. 

And we were talking about it tonight, as we were at dinner tonight.  We watched a couple – younger than us – struggle to make conversation.  And we thought about their lives – probably busy, maybe difficult financially, almost certainly with children.  And we realised that our relationship is probably the beneficiary of the “no kidding” factor in our lives.  We don’t have to be parents together, we don’t have to have battles about different parenting philosophies and styles (and believe me, we would have had a few battles), we don’t have to crawl in bed exhausted from looking after children, wrestling with toddlers or teenagers, juggling our annual leave so we can look after the children in school holidays, and never finding time for ourselves as a couple.

As a couple without children, we are able to just “be.”  It doesn't mean we don’t have difficulties.  Dealing with no income when we get home will be a struggle, and is sure to put strains on us.  Stress and foreign situations can be difficult too at times, and health issues are always a worry.  But we are able to know each other in perhaps a different way, in perhaps a deeper way than I suspect we would have time to do so if we were parents.  And for that, for our close relationship now, I am very grateful.  (And I think he’s okay with it!)

Fertility fantasies

Some of us who blog about our No Kidding lives have been highlighting the New York Times article by one of our own, Pamela Tsigdinos, and Miriam Zoll.  We have been delighted that two people have been brave enough to speak out and say, “stop!”  Stop claiming that you can solve our infertility.  Stop claiming that you have everything we need to create our families.  Stop hiding the fact that there are women who will not conceive after fertility treatments.

And yet, not all in the infertility blogging community agree.  It’s as if we read two different articles.

Actually, given that “perception is everything” maybe we did read two entirely different articles.  We come from completely different perspectives. This is another example of the alienation we sometimes find in the wider infertility blogging community, the differences between those who walked away with a baby (or more), and those of us who didn't.  Those who are raising their children after fertility treatments or adoption have reason to be grateful to the fertility/adoption industries.  Completely understandably, of course.  Those of us who didn't end up with our babies after fertility treatments (IVF, IUI, clomid, donor eggs or surrogacy, and any others along the way I might have left out) probably do feel differently when we see something advertising “Everything You Need to Create Your Family.”   It stings, right to our core, as we know, KNOW without doubt that they are not providing “everything we need” because they can't. It might be the “everything” that some people need, but certainly is not enough for all. 

We’re not blaming the industry for that.  We don’t expect 100% success rates.  I was and still am very comfortable with the care I received when pursuing fertility treatments.  (It was being dropped like a hot potato once it was clear I would have no further treatments that rankles.)  But all the advertising, all the media comments, and the common view pervading society is that fertility treatments (and/or adoption) “solve” the problem of infertility.  They are a cure.  An answer.  Therefore we don't really have a problem.  And we deal with this on a daily basis, in a way those who were lucky enough to have successful fertility treatments, lucky enough to have partners who would pursue these treatments, lucky enough to be able to afford them or have health insurance, lucky enough to conceive/have a surrogate conceive/ or adopt, don’t have to.  We are forever told that living without children was our “choice.”  When for many of us, as I've written before, there was no choice at all.

If you think I’m exaggerating, look at the Time cover article about being childfree, dismissing those who faced infertility by implying that “with fertility treatment widely available, not to mention adoption” women without children are largely the child-free.  That’s right, those of us who are involuntarily without children don’t exist.

The comparison between a criticism of infertility diagnosis and treatment, and that of cancer diagnosis and treatment, has been made.  The difference with infertility when compared with cancer or other serious diseases (and whilst I haven’t had cancer myself – despite having being suspected of it when my second complicated ectopic pregnancy wouldn’t resolve – I have had two parents who have had cancer, one who died of it) is that the media, society, our friends and family and even those who we thought were our sisters in infertility, all seem to think that fertility treatments will solve everything.  Infertility bloggers (with the exception of a few rare individuals) regularly, still, talk about those who have resolved their infertility (ie with a baby) and those who are “still in the trenches.”  There are only those two groups.  The implication is always that those in the trenches will crawl out of them, clutching their newborns in their arms.  Failure is not considered to be an option.

Yet, when you get a cancer diagnosis, there is the immediate fear that it might be a death sentence.  HIV is a similar diagnosis.  Statistics will bear out that you are more likely to survive and live a long life after a cancer diagnosis (depending on the diagnosis or particular cancer, of course) or thankfully, HIV these days too.  But that’s not the first thought you have, or that anyone has if they hear you have cancer.  You don’t have the world dismissing your problems and telling you that your outcome is essentially “your choice.”  The two diseases – cancer and infertility - are seen totally differently in the eyes of our societies, and are treated thus in the media.

So I for one was pleased to see someone putting a more balanced view on infertility into the media.  One article pointing out that fertility treatments don't always work cannot be called skewed, when 99% of articles I've ever seen about infertility focus on the “happy endings” of pregnancies or adoptions.  Even the negative articles focus on the births of multiples (with the Octomom as an extreme example), never the unsuccessful cycles.  The article too was not anti-treatment.  Far from it.  I am pretty confident in saying that none of us who have tried fertility treatments are against them.  We are thankful for having that opportunity.  I am thankful for friends and family who wouldn’t have children but for fertility treatments (or adoption).  I wish that fertility treatments were more widely available, that in the US insurance covered it, and that restrictions to government funding in many countries weren't so tight.  But against this, we find advertising and media promotion that implies that all you have to do to "create your family" is IVF or another fertility treatment.  And that is simply wrong.  And likewise, it would be irresponsible at worst, misleading at best, for any medical professional to suggest that they had “everything you need” to “cure” a disease, whether it is infertility, or cancer, or heart disease, or HIV.  And yet that is what the Fertility Planit Show is doing.  And it is what many fertility clinics advertise.  (I've never seen a cancer specialist advertise – ever.  It is not done in NZ.  I don’t know if it occurs elsewhere).  And as a result, it is what many people now believe.

There are many hidden issues too.  How many women are told that IVF has a much higher rate of ectopic pregnancies?  And no-one (well, almost no-one) in the infertility community talks about the dangers of fertility drugs, and the high dosages many fertility clinics will give to patients, despite the fact that statistical evidence doesn't show increases in results over a certain maximum.  Yet many women receive treatments at twice that maximum, or more, and at tremendous financial cost.  In my several years of blogging and reading other blogs, I have read only a tiny few blogposts making a passing reference to concern over the effects of the drugs.  But is it talked about?  Do doctors raise it?  I don't know.  I know though that I am very thankful that New Zealand’s industry is regulated, and that – even though it meant the end of my journey – I was not able to demand higher and higher dosages of drugs, in case they might work.  Because I probably would have, if I could have.  Getting off that treadmill isn't easy. It is in many ways easier to stay on it.  And so in an unregulated industry there are dangers, and there can be fly-by-night or unscrupulous operators who will continue to push treatments that are not justified.  And they can argue that they are "doing the best for their patients."  But are they really?

I am as you can see very comfortable describing this as an industry.  And yes, it is an industry, just in the way there is a pharmaceutical industry and a healthcare industry.  These are (with a few exceptions in government-funded systems) businesses run for profit.  I don’t deny that the majority of practitioners are caring and ethical.  And profit is necessary to ensure a service is provided.  But they are businesses, first and foremost.  I know this is different in New Zealand, but I have seen dentists advertise, appearance medicine surgeons advertise, and one or two other medical practitioners advertise.  I've never seen a cancer specialist, heart surgeon, or neurosurgeon advertise.  I have however, even in our heavily regulated fertility industry, had to drive past a huge billboard advertising our local fertility clinic (when there is only one in our city) on a daily basis. Because it is a business. (To add insult to injury, their advertisement included a grammatical error.) 

I feel very sad for those who might try different fertility treatments over and over again at the encouragement of a doctor (perhaps well-intentioned, wanting to see their clients go home with a baby, feeling their pain), and who aren't counselled about the odds, and whether they should stop.  A friend of a family member, in another country, talks about her million dollar baby who arrived after up to 20 fertility treatments.  Whilst I'm happy for her, I think of those others who did that many cycles and didn't walk away with a son.  After all, even cancer specialists will tell a patient when they can’t do anything more.  How often, I wonder, (and this is a genuine question, not a sarcastic comment) does this happen in an unregulated industry? Maybe less than it should?

I also want to acknowledge those who don't appear in anyone’s statistics of success or failure, simply because they couldn't afford even a basic fertility treatment, let alone the “2-3 IVF cycles” that might be necessary to conceive.  I have known plenty of people who can only afford one cycle, in New Zealand, in the UK and the US, or can’t afford any.  Even when free treatments are available in a government-funded system, there are other costs – travel to and from clinics, time off work, for example - that prevent women/couples attempting even one fertility treatment cycle.  That gets us into a much wider issue, of course, but I can say I don’t know of anyone in the UK or New Zealand who would be denied basic cancer treatment or a heart bypass simply because they couldn't afford it.

Pamela and Miriam are not condemning this industry. Far from it.  But they are saying that some balance is necessary.  They make the very valid point that fertility treatments don’t work for everyone, and that bears talking about - in the industry, the support community, bloggers, friends and family.  I wonder, does the fertility industry and the wider infertility community just want those of us who are childless to go away and be quiet, and pretend it never happened to us?  I fear so.  We are after all bad advertising to potential clients of fertility treatments (or adoption), letting them know that treatments (or adoption efforts) aren't always successful.  We are the worst nightmares of the women deep in the trenches, and we unwittingly provoke "survivor's guilt" amongst many of the women who have their prized children with them now.  We know that.  We understand that.  We accept that, albeit sadly.  But we won't go away.  We need to speak out, and be recognised.  

As a woman who could not have children after loss, infertility, and fertility treatments, I personally was very pleased to see my perspective put out there.  For a change.  Maybe this publicity will help those of us who don’t walk away with a baby.  Maybe it will help raise awareness that it happens, and maybe that will reduce the pressure on us and others (to try IVF as if it is a golden bullet, or to “just adopt”).  Maybe too it will help others decide whether and when and how many treatments are right for them.  Maybe, just maybe, speaking out like this will help society begin to realise that infertility is a real disease, and just like cancer (or heart disease, or a myriad other conditions) some get a cure, and others have to live with the consequences for the rest of their lives.  And that this isn't “our choice.”  But that we still matter.

Oh, and an afterthought.  If the Fertility Planit show really does have  “Everything you need to create your family” I'm assuming they have a well-stocked bank, ready for all those women who can’t afford treatments, to make withdrawals.  Or have directions to a leprechaun with a pot of gold.

Back to school ...

Throughout the northern hemisphere, people are talking about dealing with the "back to school" issues - whether as parents, having to cope with childcare, expenses, etc, or as non-parents, having to endure the media and personal (eg on FB) blitz about "back to school" which just seems to assume that everyone  has kids, or has had them.  It's not easy, I know.

This year, I'm lucky.  For the first time I'm in the northern hemisphere when it is time to go back to school. Unwittingly, we made plans to shift from northern Italy to southern Italy last weekend.  Yes, the weekend when all the Italians head home after their summer holidays, ready for the kids to go back to school, and to start work again on Monday.  We braced ourselves for the three day drive down the Adriatic Coast, on the autostradas.  It was busy, but not bad.  Because, like so often in my life, I was not going on the busy road, but on the road less travelled.  Yes, we were heading south, when everyone else was heading north.  The multi-lane autostradas north were jam-packed with cars, sometimes at a standstill, as we whizzed past at 130 kmph, with plenty of space, heading south into the sun.

And perhaps because I didn't have to deal with friends and colleagues talking about their kids getting back to school, or perhaps it is simply that most of my friends and family have children who have grown (or who are in the southern hemisphere, in the middle of the winter term), I could feel smug about our particular direction.

Sometimes, going in the opposite direction brings freedom, relaxation, wind in our hair (once we got to our destinations), and no queues at the Autogrills on the highway!

Gift? What Gift?

When I was first coming to terms with the fact that I would never have children, I couldn't really see the gifts that my life and my journey might bring.  I was full of pain - everything was painful, everything reminded me of what I had wanted, what I had lost, and what I would never have.  Ads on TV, comments in the news, people on the street - everything was telling me I wouldn't have kids, and worse, was stressing that I always would feel like an outsider, that I may as well have "CHILDLESS" or "INFERTILE" (a word that has taken me a long time to feel comfortable using) or "LOSER" tattooed on my forehead.

So I knew when I wrote my last post that there would be people reading who would struggle to see the gifts of infertility, of never having children, and who might just shake their head at my post, wondering if they'll ever get past it, or if I'm just kidding myself.  So I thought it might be helpful if I wrote a bit about how I got through that stage myself.  Because, in various forms, some of that pain followed me around for a long time.  But gradually, I began to realise a few things:

1. First, that nobody was defining me as a "loser" except me.  That was my definition, one that I feared others made, but they never did.  As soon as I realised that, realised that this was my interpretation of the "worst case scenario," I was able to begin to drop it.  Old habits die hard though, so it took some time, but ultimately it has gone now, and has been gone for many years.
   
2. There was still joy in my life.  I write about this a lot, perhaps because I think it was the single most important thing that helped me first get through my ectopic losses, then the infertility verdict, and finally, to heal.  Joy in the small moments, being "mindful" as the Buddhists would call it, and laughter.  Allowing myself to laugh, to feel good, to feel this joy - it all helped me realise that life wasn't an endless grind of nothingness, of gloom or doom.  That if I could laugh in the face of this, then maybe there was hope that joy and peace would come.  And so I snatched at those tiny moments of joy, of happiness, of laughter.  Even the fleeting moments were worth noticing and holding tight, because they were a promise of things (of joy) to come.
   
3. Pain is, and was, healing.  Feeling pain, recognising it and listening to it, wasn't easy.  But it helped me heal, helped me understand what I felt, and grieve what I'd lost.  But in recognising the pain, feeling that legitimate pain, I became able to avoid wallowing in it forever (although believe me, I am sure I did my fair share of wallowing).  This led me to the understanding that my brain could be reprogrammed, and that as a result, I could avoid feeling this pain all the time.  I have written about this a lot, but I keep coming back to it.  When I was trying to conceive, I'd find myself imagining what I'd be like as a mother, how it would feel to hold my baby/my child/my teenager/my adult child in my arms, what my child would be like, what I would teach them, what sort of father my husband would be, etc.  And in the first days, weeks, and months, all those imaginings still haunted me.  Because they had become a habit, and they were hard to let go.  Each time I would catch myself and think "but that's not going to happen" there would, at first, be new pain.  But gradually, I was able to train myself not to think this way.  At first, I would catch myself half-way through a thought, feel the pain as I remembered what my reality was, and cut it off, trying to divert the pain, thinking of something else.  Then gradually, I just wouldn't go there.  Whereas before, when I thought of holding a baby or child in my arms, I would let myself feel that baby, I could see and hear and feel the child.  Now, I can't.  I simply don't let the thought go beyond the theoretical.  And this happened for me quite quickly - within a couple of months, I found myself able to cut off some of these thoughts.  Because to do otherwise was to invite a recurrent pain, a pain that was pointless, that got me nowhere, and that did nothing to help me heal.
   
4. This wasn't my fault.  I had done nothing wrong.  I was just as good as I had ever been.  And I gradually realised that peoples' comments and judgements said much more about them than they did about me.  Again, this is an ongoing journey, one I've written about in relation to shame.
   
5. My journey and the pain I had been through had taught me things.  I had more empathy, I understood grief and the grieving more, and I understood much more that we can never make assumptions about what someone is thinking or feeling.  I was able to help people, and I liked that.  I got validation from others, and realised I was okay.  I found that I quite liked myself!  And a lot more than I did before I went through this too.  And that helped me realise that in fact, maybe out of all this I would come out a better person, a more peaceful person, someone who is more content with herself.
   
6. And that made me realise that maybe there are in fact gifts as a result of infertility, not just loss.  This was probably first an intellectual exercise, a theoretical understanding that I would be okay, and that there were advantages and gifts of this life and the journey I had been through. Not being able to feel this at the outset is not unusual.  But eventually I developed an emotional understanding, and an acceptance and gratitude for the good things I got from this journey, and that has also helped me heal.

Gifts of infertility

To someone contemplating ending their infertility journey, facing a no kidding life, when they had dreamed of a noisy life full of children, the idea of infertility being a gift is probably offensive.  And I understand that.  But there are positives and negatives out of every situation, we all know that.  Mothers complain about lack of sleep and loss of privacy and spontaneity, at the same time as we complain about feeling ignored by society, or having a house that is just too quiet.  Equally, our lives all have gifts, if we know where and when to look for them.  Knowing that there are gifts, and looking for them?  That, in my view, is what acceptance means. 

This week, it wasn't hard for me to look at two of my life's gifts.  Out of some bad luck, as many of you know, we had free time and decided to make limoncello out of lemons, and so we're currently in Italy for three months.  And that is a gift we would not have if we had children in school.  (Though actually, I like to think I would have been one of those parents who would have pulled her children from school to take them to see the world, learn other languages, etc.  Easy to say now of course!)  

But the second gift was that of new friends.  I have met many wonderful people on-line as a result of my ectopic pregnancies and infertility.  Some of them I have been lucky enough to have met in real life.  And on Wednesday, another virtual friend (and her husband) became real life friends.  My husband and I visited Slovenia - only three hours from where we are currently staying in northern Italy - and we were lucky enough to be hosted by the lovely Klara and her hospitable husband.  We ate lunch and drank wine, and talked, and looked around their beautiful* town  This is the part of travelling that I have always loved - learning how people really live, away from the tourist traps.  

Whilst Klara and I had both hoped one day to have children, we would never have met if we had kids. I hope one day to be able to host her and her husband in NZ too.  We may live on opposite (almost) sides of the world, but our shared experiences and lifestyle have brought us close.  And that was a gift.

*Watch Lemons to Limoncello for an update on our all-too-brief time in Slovenia.