Existential Ramblings...

There's this feeling I get every now and then: A tight, achy heaviness. A little like disappointment, severed from its source, I guess... With a secondary, tummy-burning sense of foreboding, and fear of the future.

I used to get it far more than I have in recent years, and back then, it would come in oceans, not waves. Twice or thrice, in the way distant past, it was so overwhelming and all-encompassing, that I marvel at having survived it. I have a few photographs of myself, taken at those times, and occasionally look at them and think, "jussie, you were just SOOO unhappy".

It's never that bad anymore. Not for years and years. It no longer throws the balance into the red. But it gives it a bash.

But it's "around", at the moment, in its most moderate, and least threatening form. But around nonetheless.

Perhaps it's because there are a few situations in my orbit, more complex than I have wisdom to navigate... And a little much year left at the end of my energy... A few too many bills to pay (and dreams to realise) at the end of my money...  And several nebulous threats to my livelihood, which bark and bark and bark, but haven't seemed to lunge forth with teeth, just yet...  (I don't know if it's a normal part of being a Self-Employed Human Adult with Offspring and Major Responsibilities, but I worry about money, and it's ability to be generated. A lot).

And then, ironically, and seemingly contradictory, I have existential conflicts about being a happy, fulfilled person, in a very unhappy, troubled world. And this then triggers that tight, achy feeling, and tummy-burning foreboding... This sometimes takes the form of survivor guilt... Be that "white guilt"... Or "I'm-having-quality-time-in-the-Drakensburg-while-ISIS-attacked-Paris guilt". Or the-world-is-burning-and-I-haven't-schooled-myself-in-WHY guilt...

There was a Syrian teenager featured on Carte Blanche last week, who refused to join ISIS, and was punished by amputation of his right hand and left foot. How can I plan beach holidays, and splash my Barbie-clad toddler on the swimming pool step, in a world in which knife-wielding terrorists hack off limbs..? It doesn't make any sense to me.

So today, I was wondering around a supermarket, with Ariana, getting some groceries for the week, and pondering this current crisis of existence in my soul...

"What's the meaning of life..?" As I choose free-range over grain-fed eggs, and acquiesce and buy my child an expensive, cheap-looking doll.

"Is it enough to just work and work, pay bills, and let months roll into years into decades..?" Sparkling water, cream, coffee...

 "And is it not a special kind of wonderful to succeed in being quite happy..? Is that not something of an achievement, in and of itself..? Is that not actually a contribution, in this crazy world, to be well-adjusted and create well-adjusted children..?" As I search for my store card to get some alleged bonus or discount.

"What is my purpose? Should I not be striving for something more..? Something bigger than a lovely Saturday evening with extended family, a Sunday morning lie-in, and a day whiled away under the lapa..?". What about charity..? But then doesn't that detract from family, which is apparently where charity should begin..? And isn't philanthropy self-serving anyway..?" As I pop into the awful Chinese clothes shop and try on something so see-through, I'd need to wear 6 of them to protect my honour.

"I'll ask Yaghoub", I decided. As soon as I get home. He's my husband... He should be able to help.

And he did, actually. His answer to my "I'm depressed; what is the meaning of life?", sprung on him from nowhere, was quick, but considered: "Yes, our purpose is to work hard, and be grateful. Gratitude is very important". 

So that's that. We work hard, because that's how humans survive, and there's a fundamental satisfaction in that. And we give thanks. Children. A home. A good marriage. Work to do. Health.

And, he says, when any of these things fail you, you move to the next level of gratitude... There's always something to be grateful for, and, when your time on earth seems to be failing, due to illness, or death, your gratitude would be for what you had. But in the time you have, while you have it, you work hard, and have gratitude for your lot. And that's it.

He then mocked me a little, for being a depressed psychologist. And called me a fraud.

But he made a lot of sense. I have patients who quite regularly apologise for their existence, and their presence in my office, affirming that others have it far harder than they do... Professionally, therapeutically, I go to great pains to assure them that we are all dealt a hand of cards, and we can only but play the hand we have before us. We don't play our friends or opponents' hand, nor our peers'. We don't feel guilty for having a few strong cards, and we are free to bemoan even one or two dud ones. While our hand is good, we can play that with charm and aplomb. The next hand may be worse, and we'll see to that when we get there... But all we can do is play this now hand. This isn't an original concept, by any stretch. But my point is my double standards and hypocrisy, more than the analogy at hand.

So I haven't had any epiphanies, nor resolved my angst... But I will go into Another Monday invigorated by a quality weekend, and ready to work with all my heart... To make the maximum difference to the people I engage with... And I will plan activities over Christmas, that will give special experiences to my two little children... Sand in their toes, salt water on their faces, jungle gyms to climb, new people to meet... And I'll see raising them well, as part of my purpose, even in a world that seems to need a far bigger gesture...

And maybe such bigger gestures will be dealt in my next hand.

Shimmering.

Blogging, and life, are tricky things.

In order for either to be of value, they need to be authentic. They need to be honest. They need to be outward expressions of inward realities. The people we most sidle up to, as authors and as humans, tell their truths without apology or embellishment. We find ourselves in the grappling narratives of those who have not been double-dipped in the boring, overdone rhetoric of the day. Which is falsehood anyway.

But, in blogging, and in life, Truth is something that has to be managed, and not just told. 

Parables exist for this reason. Novels. Poetry. Social clubs. 

They give a semblance of reality, but without needing to stake any particular claim... Without having to commit. The door remains ajar.

Maybe you misunderstood.

You didn't misunderstand.

But maybe you did. 

WHY Ariana Was Born Dead: Cord Compression and Bad Choices

One of the first blog posts I published told the story of our daughter Ariana's very traumatic, asphyxiated birth. Follow-up posts have centered on my anxieties (and neuroses!) around her subsequent and resultant health, particularly with respect to a question mark placed over her sight. Ariana's Pediatric Neurologist explained, at the outset, that most babies born as severely oxygen-deprived as she was acquire Cerebral Palsy and gross mental retardation. The strongest known antidote to such disability is the 72-hour Hypothermia Treatment, which our baby was nothing short of blessed to receive (Sunninghill Hospital is one of only two Gauteng hospitals with this cooling technology, and the intervention itself is relatively new). While we were discharged from the hospital singing the praises of her NICU therapy, and given a clean bill of neurological health, we quite quickly became extraordinarily worried that she had "Cortical Visual Impairment". CVI is a relatively common derivative of Birth Asphyxia, wherein the oxygen deprivation at/around birth damages the connection between the eyes and the brain, or the part of the brain responsible for interpreting visual input. The result is anatomically perfect eyes that just cannot see. Think lamp not plugged into electricity socket...

But it would appear, clinically and by our observation, that Ariana does not have CVI. A series of investigations have yielded "normal" results, and the child now so clearly sees, in a way that she really didn't until about a month ago. The term currently being brandished about by her doctors is "Delayed Visual Maturation", and I am so grateful for a much less damning,less significant diagnosis. So thank God for that...

An aspect of our ordeal that I have downplayed quite a lot, however, is the WHY of her birth condition. WHY was our daughter born with Birth Asphyxia? I think that, when something like this happens, you ask the questions, but are much less focussed on etiology than on outcome. You just want your baby to survive, and survive well... Similarly, at the coalface, treating physicians are naturally more mindful of intervening than speculating around cause. My gynaecologists (I essentially had two, as they share a practice and tend to each others' patients, at times) take no responsibility. I've mentioned before that, as they were stitching me up, they chatted to each other about how she was "happy in, and unhappy out". I was swimming in ruptured oceans of trauma and chaos at the time, but nonetheless remember registering how defensive and staged this conversation sounded.

Because Ariana was not "happy in". There's a chapter in this tale that I've yet to tell, but that will certainly fill in gaps for anyone who has followed our ordeal.

I am a first-time mom, and as such, I had very little idea of what was "normal" in pregnancy.  But I am an avid, even obsessive reader, and I Googled my way through, minute-by-minute, hour-by-hour, day-by-day, week-by-week and trimester-by-trimester. I became a literal expert on each phase of gestation, and its related phenomena, and potential complications.

I was never sure that my baby was moving enough. My sister had made a throwaway comment at some point about how her son had been something of a disco-dancer inutero, and this stuck with me. Because my womb just never felt like anybody's nightclub. Sure, there were tangible kicks, and yes, as Dr Google instructed, I could encourage them, with ice water or orange juice, and count them, and probably arrive at the appropriate number. But I was just never reassured by her movement. I must mention that, despite worrying about kick-counts and movement, I did mostly believe that I was simply neurotic, and all was fine. In the story that follows, I always felt that I was overreacting.

One evening, at 34 weeks, I was somewhat bored, and my attention turned to my bump, which I felt hadn't reverberated terribly much that day. We live very close to our hospital, and I was aware that I was "allowed" to present myself at the maternity ward at any time of the day or night that I was concerned, from 20 weeks' gestation. I am a sucker for peace of mind, and so chatted to my husband and decided to pop across for a "CTG". A CTG involves having a monitor placed over the fetus's heart, and another over your uterus, and then sitting for a period of time while the activity of each is tracked and traced. A fetal heartbeat should be range from 120 to 160 beats per minute, and should show a lot of variability between these two points over a 30 or 40-minute period. (The uterine monitoring basically registers contractions, and would, when appropriate, indicate labour, and extent of labour, but this is irrelevant in this context).

Thus I arrived at the ward, was strapped to the machine, and got the answer I knew I'd get: a strong, normal fetal heart beat.  I was about to skip out of the hospital and return home, when the nurse asked to do a blood pressure reading. 158/120. Horror! Gestational hypertension! Potential Pre-Eclampsia! Imminent c-section! Prematurity! I knew all the permutations and extrapolations of this reading. Much fuss was made, my doctor was called, hospital garb was thrown at me, and I was admitted. Shortly post-admission, I was, on my doctor's orders, injected with Surfactant, a chemical known to spontaneously fast-track fetal lung development, and thus prepare the fetus for premature delivery. I was to have that dose, another 12 hours later, and, if my blood pressure remained elevated, an emergency Caesar would be performed.

I lay there quite incredulous. I really hadn't really thought that there was anything wrong... I probably had felt her move sufficiently that day... I was really just bored, and neurotic, and looking for something to do... Truth. So I was quite flummoxed and perplexed that this was happening.

Then, alas! - my next blood pressure reading was normal. And the one after that. And the one after that... The initial elevation was ascribed to measurement error/fluke, and Pre-Eclampsia and emergency c-sections floated off into the horizon. I was examined by my doctor the next day, who ruled these out, but said I needed to remain in hospital for a day or two post Surfactant administration. As is standard Maternity Ward protocol, I was, from time-to-time, hooked up to the CTG machine to monitor what the baby's heart rate was doing.  And this is where the whole game changed...

All would be fine for 5 or 10 minutes... 120bpm... 142bpm...158bpm... 122bpm... All within range, and with good variability. And then, without warning, the number would just PLUMMET, to 60 or 80 beats per minute, dramatically lower than the minimum 'normal' of 120. THIS was now becoming worrying... Possibly even MORE so, for me, than the high blood pressure reading on admission. SOMETHING was horribly wrong! These "decelerations" became the focus of my inpatient stay, and I was hooked up to the CTG machine three times daily.  On most occasions, the pattern would remain as I describe. Normal... normal... normal... then this massive dip into the realm of the distressed fetus. I took pictures of the traces, and insert one below to illustrate the scenario. You'll notice a lot happening between 120 and 160bpm, and then this drastic deceleration to 80. This is one of many graphs that were compiled.

My doctor, at this point, had two hypotheses. I myself was born with a congenital heart defect, and he speculated that my baby may also have a cardiac condition. In the absence of this, he felt that the decelerations would then need to be ascribed to fetal cord compression, where the life force to my baby was being "compressed" inutero, intermittently, and then restoring itself. I was taken off to a Pediatric Cardiologist, who spent about 80 minutes scanning my fetus's heart, through my big, stretched belly.  Despite being extremely thorough, he found nothing to suggest that there was anything at all wrong with Ariana's heart. And so, cord compressions it was!

My doctor and I had a chat, and he expressed his view that this situation did not warrant premature delivery of my baby. He argued that there was sufficient variability within the traces to suggest a healthy child, and further stressed that the decelerations were very short lived; her heartbeat did not remain so low for any period of time. He asserted that the impact of prematurity was greater and more destructive than the impact of a deceleration here and there. And so I trusted him. Because that's what you do when you are in a specialist doctor's care. And I suspect that, at that point in my pregnancy, he was right.

He discharged me from the hospital, told me to return to my life, as usual, and pop in for another CTG in a few days time, and thereafter only if I felt my baby's movements decrease. I returned to his offices for the requested CTG, which I felt was extraordinarily "flat". The "variability" which was heralded as Ariana's redeeming factor was simply not there. I was concerned. I questioned the doctor, who looked somewhat aloof and stated simply that "she is sleeping". I was then 35 weeks pregnant. And I felt, from his attitude, that this was all "much ado about nothing". And so I viewed this chapter as complete... A phase in my pregnancy now resolved. And I continued to plan for my little girl's arrival - nurseries and nappies and baby clothes.

In subsequent visits to these doctors, I was not treated as a high risk pregnancy. In fact, at my last visit, on a MONDAY, the doctor decided that the baby was big enough, and would be imminently ready for delivery, and so scheduled my c-section for the following Thursday. Please note that this procedure was booked for TEN DAYS from that appointment. No CTG was performed. And I was instructed not to make another in-office consultation, but to simply check in to the hospital in 10 days time, and he would be there to cut me open and pull out my baby. I strongly feel, in retrospect, that it was this one lapse in judgement, this one oversight, on the part of my doctor, that nearly cost me the life of my unborn child. Everyone knows that late-stage pregnancies are assessed on a weekly basis... And how much more so should a pregnancy be where cord compression has been an issue. Logically, such compression might dramatically increase in those last days and weeks, when the baby is growing exponentially and running out of room in any event.

But I was not my own doctor.
And we trust what we are told.

The "kick count" method of self assessment also flies out the window in the 36th and 37th week, as everyone  tells you the baby moves less, as space is now so limited.

And thus, enter 28th March 2013... Bags packed, expectant parents brimming with excitement, family and friends piqued with interest and anticipation... A happy day was expected by all... A bouncing baby girl was on her way!

But, when hooked up for a final routine CTG prior to the procedure, the baby's heartbeat showed marked bradycardia... It now just hung around between 105 and 115 beats per minute, for pretty much the entire time... No longer was it mostly between the expected healthy 120 and 160 bpm, with the occasional dip. Now it was just sluggish. But you know, at this point you're so pumped up with the excitement of the day, that you become somewhat oblivious to what can go wrong... I decided she was sleeping, which is what I'd been told weeks before, when I did actually feel huge trepidation at how flat her graph was. The nurses, funny enough, were more concerned than I was by how flat and slow her pre-caesar heart-rate was. The one, in particular, said something like, "well, let's just wait and see how baby is when she comes out..."  Prophecy of doom, right there... But still, none of them alerted the doctors. None of them sounded the alarms... Why should they..? It wasn't their baby...

And so I was wheeled into theatre.
Epiduraled.
Sliced open.

And so the grey, lifeless, desperately distressed, desperately oxygen-deprived little person was pulled from my body and thrown to the attendant pediatrician. And so little Ariana fought and fought to hold on to her life... And so she was intubated and ventilated and pierced and probed and coerced into being...

And so began her tiny little life. Her welcome to the world.

It didn't have to be that way. I don't think we can call this "malpractice"... Negligence, perhaps... And I guess we can all be negligent, at times, in all manner of ways. I just wish there's been a touch more care... A touch more interest. A little more thought around how many days would transpire between an appointment and an operation... Perhaps a request of another CTG.

"Happy in, unhappy out".

Yeah, right...

Picturesque Persia - My Husband's Home; My Husband's People.

This is the most beautiful photograph that I have ever taken. Bar for the shadow person on the left, who can be cropped at will. I love it because everywhere you look, there's a potential story. The colours are also unreal: the frost-burnt mountain... the weathered home on the hill... and then the vibrant and cosy illuninated dusk market.

This was taken on the second day of our honeymoon. Yaghoub Rahimi and I were married on Saturday 17th March, 2012. The following Thursday, we flew to Tehran, Iran, via Dubai. The entire two weeks was nothing short of magical. The snap above was taken in a somewhat hippy, somewhat up-market part of Tehran called Durband. After breakfasting in our hotel, we'd spent that morning at "Milad Tower", which, 500m high, offers an aerial view of Iran's capital. The magnificent view from the tower aside, the morning was relatively boring. We were forced to participate in a guided tour of the complex, rather than being free to roam at leisure, and I have a longstanding issue with authority, and being told what to do, how to do it, and how long to do it for. So the morning felt tedious, as we arrived at each successive level of the tower, with various focal points, and were essentially captive until the tour group moved.

So Durband was a welcome reprieve, and remains a beautifully romantic memory... When I think back on it, I'm not even sure why it is such a glossy instalment of our holiday, but I think various factors converged to make it truly special: it's a beautiful place... It was cold, and that coldness was offset by wonderful partitioned, curtained-in booths at the restaurants scattered up and down the mountain, each with a little gas heater and hubbly bubbly.  I've never known anything like it, and the privacy and intimacy afforded by such a setup is priceless.

We had nothing to do but be. Moreover, we were hungry (read: famished), and if I've learnt one thing from my husband, and his culture, it's that food is not just banal necessity, for sustenance or comfort, but is a way of relating to people, a way of connecting, a conduit and representation of joy in life and care of self and others. And thus the food was good. In a way that few South Africans, or even Westerners at large, might understand. We ate "chelo kebab" at the first restaurant, a Persian staple of ground lamb, rice, and braai'ed tomatoes. And then, after wandering through the various shops, we had tea in a restaurant comprised of many "zozo huts/wooden wendyhouses", designed to keep out the bitter Iranian cold.

I'm thinking of this, today, because, 15 months later, my husband is again en route to his home country, as I type. His niece is getting married, and he has business in Tehran.  I would so love to have gone with, but our daughter is only 3 months old, and international travel still looms as potentially traumatic. Moreover, I'd like her to have time to build up something of an immune system, and have most of her vaccinations, before exposing her to a different world. But Yaghoub will be doing all of this again... And so my memories float back to our late-night arrival at Tehran's Imam Khomeini International airport... To the cliched bearded, uniformed official who stamped my passport, grunting and unwelcoming. To the big barn-like structure where we collected our luggage... To the biting cold as we exited... And the relief that a pre-ordered taxi was waiting for us... To the horror of the roads in Iran, and how convinced I was, within 15 seconds in the car, that I would die on Persian roads... To the hotel who requested our marriage certificate before allowing us to share a room... To the wonder of simply being there.

He's been gone for all of 12 hours, and I miss him. But I'm pleased for him that he'll once again touch down on home ground... And absorb the wonder that is his country. Because it's different. Palpably, magnetically different. I've known, for some time, that he's taken immense strain of late, particularly with our daughter's traumatic birth, and just being with his people for a while will help him with that... To tell the story, in his language, to his family, will hopefully release him from his turmoil, and recharge his batteries. I found a couple of pics (below), which show just how comfortable and relaxed he is in his mother's home.

So that's all really... I'm sitting on the couch, gas heater on, pugs snoring at my feet, and our gorgeous little baby sleeping and dummy-sucking to my right. And I'm thinking of my husband, his home, and how privileged I am to have experienced a world so different to the one I've known.

Inner Circles

"Debs, I couldn't even call you... My wife said, 'Debs and Yaghoub are going through this, you must call', but I just couldn't pick up the phone; I had no idea what to say to you".

This the sentiment of a good friend I've known for a decade, referring to my baby's birth asphyxia, critical care in NICU, and subsequent pillar-to-post medical investigation to ascertain whether she would live out her days without sight.

His words hit a spot, as his and his beautiful wife's are known to do. Because he 'got it', and was as gutted and shellshocked as we were. I felt that they had, in part, lived this experience with us.

Likewise, my best friend who admitted after the fact to have diarised Ariana's medical tests, as though they were for her own child... And my dear cousin who has loved my daughter almost as her own since her conception. And a person Yaghoub and I count as family, phoning constantly from the other side of the world, saying how helpless he feels not being involved and informed. And one of my most lifelong soul sisters, her own life in tatters at the hands of a spouse wanting out, knowing to ask and engage.

People care. And this is an extraordinarily special thing. But many people don't, or can't. And while this is "fine", they simply cannot be "inner circle". I think my husband and I load-shed acquaintances and fair-weather companions almost automatically when Ariana arrived. With his Persian heritage, he often refers to "devil eyes" - basically meaning duplicitous behaviour driven by ulterior motives. Shakespeare's "look like the innocent flower, but be the serpent under it", comes to mind. We were stretched so thin, at the time, that it came naturally to lose the blinkers and know who we should and shouldn't cling to and trust for our emotional replenishment.

I only hope that I am, in some ways, perceived to be as good and engaged of a friend as my nearest and dearest succeed in being. May I work on this every day.

Hypothermia Treatment for Birth Asphyxia Babies a Literal Godsend

Just a quickie: received a phone all from Ariana's ophthalmologist's receptionist: her ERG results are in, and are "completely normal". So we have a normal MRI, a normal ERG, and all of her observable milestones are on track, if not ahead of schedule.  This, from a child who was so oxygen deprived at/around her birth that her pH was that of a corpse... On the second day of her Hypothermia Treatment, I was begging for reassurance from a pediatrician, who punctuated the typical non-commitment with one phrase: "but this works hey... It really works".

I think that my husband and I are some of the most fortunate people alive, and am so grateful - but particularly to God, and my ever-praying mother, who herself seems to walk on water.

What You Judge, You Become...

I judged someone quite harshly, in the last few months. I'm a flawed human being, and thus have no problem admitting this. I justified my sentiment with platitudes like, "if you don't stand for something, you'll fall for anything".

But even in the midst of my judgement, a small voice whispered, "don't... just wait... you know life isn't so black and white..."

And then, like the clockwork that is my life, I "got it" this week... A chain of completely unforeseen events had me surreptitiously walking out that person's reality, and I realised how easy it would be follow suit.

Life is hard. It requires minute-by-minute conscientiousness, and mindfulness, and in the absence of these disciplines, outcomes are anyone's game.