92.6

ninety two point six

As in kilograms...

As in the mass of my body...

As in when the fuck did that happen?

Okay the last question is unnecessary. I know when and I know how, but still... why did I let it get to this point? Never mind the aesthetics, that is not healthy. But then again I probably haven't been healthy for the last 7ish years or so bar for a few sporadic episodes here and there. At 1.64 metres tall my healthy weight is somewhere between 60 and 64 kgs and I can't remember when last I weighed anywhere near those amounts.

So let me state the obvious here, but I think it is important. I know that this was a choice, MY choice, every bite of food, every time I ignored the fact that I was full and kept eating anyway, every time I didn't exercise, every time I turned away from the mirror instead of facing the truth - all of those moments stemmed from a choice that I made not to put my health first, I am accountable and it stands to reason that the path back to health will be paved by my choices too (better ones of course).

The thing is that I didn't wake up one day with a figurative light bulb above my head saying "I know, let's get fat and be unfit and unhealthy"* I know I wouldn't have done that because despite my current deep neglect of myself and my appearance I am surprisingly self-centred and vain. I didn't CHOOSE to be fat. Well... not directly anyway. I chose convenience, I chose taste, I chose comfort, I chose lots and lots of comfort. 

*I realise that fat does not necessarily equal unfit and/or unhealthy, but in my case it certainly does.

And so here I am, looking down indignantly at the numbers on the scale, wondering how it is that I got here - even though I know exactly how.

My first thought is to berate and belittle myself and a few months ago if I had had the strength to face the scale that is precisely what I would have done, but now after months and months and months of therapy I can't seem to talk to myself that way anymore. I got upset, yes, but I didn't treat myself badly because of it, I wallowed in the state of realising where I was and then once I was ready to start to let go of the self pity I started to consider what I would need to do to fix it. That was uncomfortable because as simple as it sounds "yes just fix it" it isn't anywhere near as simple as I would like it to be, I found this out while wading through thick sticky denial and self-indulgent retorts of "but I don't want to" which sounded a whole lot like my 6 year old when she gets told to tidy up. It isn't a whole lot of fun and laughs now is it?

I have pretty good reason not to want to fix it though. My track record of "fixing it" involves a mosaic of strict dieting, restrictive eating, excessive exercise, hunger, bulimia, fasting, diet pills and laxatives (all used in various different combinations at different times). All of my tried and tested methods thus far are not kind, in fact they have all been downright destructive and I am sure must have resulted in some metabolic damage somewhere. In an essence my self-esteem is shot. I wish it was possible to grab that teenage girl paging through the magazines earmarking the pages flaunting the models with the bodies she wishes to have and tell her that she is already perfect and beautiful. She never needed to change herself to be lovable. She didn't know that though.

The difference I have at this point in my life is that I know that I don't need to change so that I can be loved. I am already loved and lovable just the way I am. I want to change because I am physically tired and unfit and unhealthy and feeling this way is just no way to live and enjoy life. Now I just need to find a way to do it that doesn't involve destroying myself and that is going to require a great deal of my energy and awareness. I do think that it will be worth it though.

Life or something like it

I don't feel like I have lived.

Up until this point I have merely survived with some short random bursts of doing things that really set my soul on fire. The fire fizzles fast though and the older I get the more I find myself questioning exactly what it is in this life that makes my heart beat faster and how do I get more of it?

The reality is, no matter how much I want to, I can't just drop everything and travel the world. Well I suppose I could I guess, but I would have a tough time finding the money and then explaining why my 6 year old child is not being educated. I have a certain level of responsibility that I need to account for and it seems that is what being an adult is all about. So how do we strike that balance of meeting responsibilities and also nourishing the soul?

One of my clients committed suicide this past Friday. Three acquaintances have lost their dads in the space of 6 months. I lost my dad. I don't need to see any more evidence... life is finite, it is unpredictable and no matter what, just as everything begins so everything ends. It is a cataclysmic thought to even begin to comprehend never mind accept. One of the greatest fears in my life, and only a short second behind losing the people that I love, I am utterly terrified that I die in a car accident or some other unfortunate event on my way home from work because I just could not handle the thought of the last few hours of my life having being spent at work. At the same time I have started to accept that I am not likely to find my sole driving purpose and then also fortuitously find that aligns with my work and means of earning an income. Don't get me wrong, if it does I will welcome it with open arms and back flips, but if we're honest here it just doesn't work that way for everybody so my aim is to make my life outside of work as amazing and authentic as possible.

For that to happen I need to do a few things:

a) I need to be as healthy as I possibly can be so I can enjoy life;

b) I need to nurture my relationships;

c) I need to look at life with a sense of wonder; and

d) most importantly I need to figure out what makes me excited

I am getting on nicely with points b and c for now. Points a and d need some work. The only thing I know for sure is that I want to travel but seriously there has to be more than that so I am just going to keep on soul searching.

On that note I have resigned and I took the job offer. It took every ounce of courage that I could muster up inside of me to resign but I did it and it didn't go too badly. I start my new job on the 1st of August (also Layla's 7th birthday) and I am so looking forward to the new challenge as well as having more flexible time. I am so grateful for this opportunity.

I am in an exceptional place right now, I haven't been this happy in a long time and I am soaking up every moment. I feel like I have stopped just surviving and I am finally starting to live. 

Only took me 34 year...

Making a tough decision

I am no stranger to stress. I don't think anyone is really. I used to think that I handled stress well, even that I thrived on stress. Turns out that I don't, not on prolonged stress anyway. 2017 has been a particularly stressful year for me so far, however with the exception of my dad's death (for obvious reasons) everything has come with a positive outcome - it is the process of getting to the outcome which has proven to be stressful. Now that we have bought a house and are working our way through the somewhat stressful and financially straining part of the transfer, I thought that everything could finally start to settle down. 

Ummm, as it turns out, not really because out of nowhere I got offered a new job. 

I am reasonably comfortable where I work now, I mean I have been here over 11 years now.  I know the work, the people, the traffic and it is all so very comfortable. Boring at times, but super comfortable.

I have had passing thoughts about moving on, but the kind of thoughts that I pushed away with a not right now, it isn't a good time. When is it a good time though? Not only have I worked here for 11 years, but it is in a small office environment of only 3 people and that is with myself included! I am having an extremely tough time not worrying about disappointing my boss by deciding to leave. I absolutely hate being the cause of people's upset and letting them down, to the point where I deny myself happiness in order to not let it get in the way of someone else's happiness. And it hurts me.

I didn't actively go out looking for new work. It came to me. It is nothing like what I am doing now, but I find that somewhat intriguing and exciting, it has been quite some time since I have needed to step out of my work comfort zone. I kinda like the idea of leaving behind what I am doing now. This new job is so (SO) much closer to home, which brings about it's greatest perk, more time! Less time in traffic and more time with my kid. I hadn't realised what a big deal something like that could be until I found it my founding argument for possibly taking this new job.

Have I made a decision? I think I have and it is not what I thought it would be. I thought I was going to stay, but I find myself daydreaming about the day I leave. It has been one of the most difficult decisions I have ever had to make. I am afraid of the change, but I think that is normal. However the strongest emotion seems to be guilt, I am so guilty about leaving the job I have now, even though I am 99% sure that this move will be best for me and my family, I somehow just can't shake the guilt about letting someone down. Will this matter in 5 years time though? I hope not.

Until now I hadn't realised how hungry I was for change, for a fresh start. I still need to commit to the decision though, so let's see how this works out.

The things a year can do

One year. 

This isn't the good kind of anniversary. My anxiety levels have been rising more and more in the days leading up to today.

One year ago since my dad's accident and today has hit me harder than I thought it would, but then again why shouldn't it, everything changed after this day.

I hate when I find myself imagining what this day must have been like for him. To have been hurt, unable to move and all alone lying in the grass knowing that it is entirely possible that no one would find you. I wonder if he thought he was going to die there alone. I wonder if he tried to shout for help. My heart breaks when I think these thoughts. I need to push them out of my head so that I don't break down. I hope that he didn't lie there all alone for too long.

Mercifully he didn't remember anything about the accident.

I am eternally grateful to the man who stopped to inspect the 'abandoned' bike just visible from the road. Thankful that when he felt that the engine was warm that he looked for the biker. He could have just walked away. I didn't think to thank him last year, but I wish I could find him and thank him now.

I am grateful to the paramedics that came so quickly from the mines to help him, for them taking us back to the scene of the accident to explain what they had found and for phoning in the immediate days after the accident to see how he was doing.

If we had known this time last year what life had for in store for us I don't think we would have believed it.

The things a year can do,

How I have changed in the past year

I have been struggling with blog topics lately. I feel like this blog space has become about my dad's death and as such it is now sacred, so I am having trouble talking about general more random topics. However this space was always intended to be about my life and my self-realisation (and apparently self-indulgence) and I would like to try and find that purpose again.

Serendipitously I came across a pin on pinterest titled Memory Keeping: 52 Journal Questions (by www.hayleyfromhome.co.uk) and I felt like it was a good nudge in the right direction. Today I have decided to write about how the last year has changed me which is poignant considering that this time last year I was so very blissfully unaware of what was about to unfold in my life.

"She's changed. You can see it in her eyes, feel it in her touch, and hear it in her tone. She's not the same, and she's never coming back." - K. Azizian

Reflecting on this time last year, while I would never really describe myself as a care-free person, it was probably my last few days of being 'care-free'. We had just returned from our first family holiday with just the 3 of us. Ironically* enough this holiday was in Nelspruit and I had never been there before. It was so beautiful.

*It is ironic in that is where my dad was initially hospitalised and I ended up going to Nelspruit 4 times during the month of May 2016.

I still lived in the world of those things don't happen to me. How wonderfully naive. I wish I could blink back to this place of unfaltering security every now and then.

Then it happened. In one split second everything changed. I changed. 17 May 2016.

In the past year our family has been held over the fire. Melted and remoulded into something... different. I can't help but feel a little bit broken, but paradoxically at the same time closer to being more whole.

I am not so naive anymore. I know that there is a place between life and death, a place of mere existence and just plain survival. I know that stories don't always just either end abruptly or if they don't then obviously end happily. I realised that you can take 8 months to die from an accident. I know that one seemingly minor decision, one tiny bad judgement can change everything. I have found out how lies can bring you to your knees.

I can confidently say that I have cried every single day since 17 May last year until today. Sometimes it is just a few sad tears, sometimes it's sobs and for the first time in my life sometimes they are happy tears (spoiler: we got the house).

Since I now know that everything ends and nothing is guaranteed I have started to see beauty in every tiny little thing. I am seizing opportunities as they pass without over thinking it too much (okay sometimes, it is a difficult habit to break) which would be why in the 4 months since my dad passed I have bought a house, a car and signed my daughter up for ice skating lessons, something I always wanted to do as a child (it was her choice though, I am not going to try and live through her). Time is finite!

I seem to be living in opposites land. Never have I been more afraid, yet more brave. I feel both weaker and stronger at the same time. I have never been sadder nor happier in my whole entire life. It feels all so wrong and yet also so right.

I am learning the value in being vulnerable.

My marriage was well and truly tested in this past year, but we made it through and I am happier than ever with where our relationship is even though I am human and I still deal with massive insecurity. Although I feel like I am better able to express it now.

This year has been a true rollercoaster.

Here are some of the things that have happened in the space of 12 months:

• I dealt with my first ever real crisis; dad's accident and severe disabilities as a result.
• I experienced the ICU for the first time (and then over and over and over)
• I failed my first ever exam and it was a biggie, the board exam (I still need to rewrite).
• I travelled by myself for the first time. 
• I built a relationship with my sister.
• I found out that I am never going to have that second baby that I wanted so bad.
• I paid off my debt.
• I co-signed papers to withdraw my dad's treatment once he went into a coma.
• I started therapy (as a result of the trauma of the above point).
• I learnt to believe in miracles.
• I then learnt that not every miracle is about healing forever, sometimes it is about a couple of extra months. Still a miracle.
• I nearly destroyed my marriage (but I didn't thankfully).
• I learnt to love people who didn't deserve it and love when it wasn't something I wanted to do. Love is healing.
• My daughter started Grade 1.
• I lost my dad.
• In losing my dad I 'found' a family.
• I gave away a car.
• I stood up for myself.
• I bought a new car.
• I bought a house.

It has been a traumatic year, but I have learnt so much that I couldn't possibly want to change it for anything else. Although if I could have my dad back I obviously would, but that is not how life goes is it?

Most importantly, I survived.

Life is precious.

Random Thoughts

A few months ago we decided to tentatively start house hunting. The point was less about buying and more about seeing what we could get in our area for our budget while starting to save up for a deposit. We do own a unit in a complex but we would prefer not to buy on the condition of a sale, that is just too much pressure and I don't deal well with pressure. 

It wasn't a very exciting search I'll admit and I even said we will stop looking after the fourth house since we aren't desperate to move, but then of course there was this one house (isn't there always?) I had seen the pictures before and disregarded it, I don't know why? Possibly because it is hovering neatly on the border between affording it and well... not. However the more I looked at the pictures the more I thought that it was a pretty nice house considering what we had been seeing and even though I wasn't (and am still not) entirely convinced on the affordability aspect I made an appointment to go and see it. 

Naturally, because we maybe can't afford it, we fell in love with this particular arrangement of brick and plaster. It ticked all of the boxes. Cue me doing some very creative budgeting and number crunching and we since we had become distinctly aware that this house is a BARGAIN we decided to throw all caution to the wind and put in an offer. We did this yesterday, yes on a Sunday afternoon, estate agents don't seem to care about their own personal down time. After signing the offer and discussing it with the estate agent I am even less confident about getting financing now, but sometimes you really do just need to take the chance. 

We aren't really ready you know, we don't have an immediately accessible deposit, so it is either a 100% bond or we would have to sell our unit first to get that and that takes time. But sometimes, just sometimes, you need to stop thinking and just jump. I truly cannot believe that my overly cautious husband was willing to take that leap with me.  I do it all the time, I love taking chances to see if the universe thinks I should or shouldn't have something, but Stephen, he doesn't buy so much as a lamp without a carefully crafted and double checked blueprint.

And you know what, if it doesn't work out, even though we will be disappointed, it won't be the biggest train smash. We just continue as is and prepare ourselves better to try again in a year's time. We have promised ourselves not to get too invested in the idea. I have stopped believing in failure. Either it works out or you learn a lesson. If this is supposed to be our house then it will be our house. If not, there is something else waiting.

In amongst trying to buy things we can't afford, our family has been plagued with a few medical issues which is actually quite unusual for us. Stephen and Layla have had dental problems that have needed urgent sorting out... a few times now. And me, well yes. I had reflux which I thought was a heart attack and ended up in the emergency room from 2am to 4am on a drip one night last week #hypochondria. Then yesterday I was bitten by something and it just looked like a simple mozzie bite at first however it is now the size of a tennis ball, swollen, hot and developing some tiny fluid filled blisters in the centre. It is itchy and sore and I am feeling a bit woozy now which I am sure is just my hypochondria kicking in again. I started off by determining if it was getting bigger by plotting it between some of my freckles but I have quite a few freckles and can't remember the original border, so I have resorted to drawing a line around it so see if it gets any bigger over the day. Fun times!

Yesterday we went for a boat ride on the Vaal River and I was blown away with how picturesque it was with the river being flanked by so many trees showing off their gorgeous autumn leaves. From yellow to gold to red and pink, it truly was a sight to behold. Nature is amazing. 

Other than that it is our second wedding anniversary tomorrow and I cannot believe how quickly two years can fly by. Suppose we should maybe try to do something to celebrate. Let's see how it goes.

A look at grief 3 months on (a personal perspective)

At times I can't believe that it has already been 3 months and in the same breath it feels like it was a lifetime ago. Some days it feels like it happened to someone else and some days the finality of it consumes me.

I hate that time keeps on moving forward. I feel like the further we move from the date of his death the more I lose of him. The more my grasp of him slips. I don't want it to ever be years since he left but I know that there is nothing that I can do to stop that. I really don't like that idea at all.

Two weeks ago we got his autopsy report and it was a difficult but disconnected read. How was it that it is my dad's name on such a report, the one talking about internal organs and incisions? What this report did bring was a small sense of peace though, my dad was in a very bad way and the decision to not resuscitate was the right one. His lungs were by far the worst, respirator lungs was the term, but his brain, heart, liver and kidneys had also all experienced a level of tissue damage in one way or the other. That is every vital organ. He also had some pretty serious pressure sores which had become infected. Cause of death was cited a quadriplegia and complications thereof, primarily being bronchopnuemonia. There were abscesses in his lungs. I don't know how he managed to survive as long as he did.

All of that - from a motorcycle accident. Eight months of agony, physical and mental, all from a split second of bad judgement. A mistake. It is terrifying to contemplate.

So here we are, 3 months on, and there has been some closure from the perspective of his physical condition and why we are where we are now. Emotionally the road is somewhat rocky still although substantially smoother than where we have been. I still cry almost daily, and it is almost always while in the car - the only time that I am by myself during the day. The tears are different all of the time, sometimes sad, sometimes nostalgic, sometimes angry or afraid and sometimes in disbelief, but they are always healing and the crying comes in much shorter bouts now. It is quiet crying.

Once a month however I do get overwhelmed and anxious and just utterly heartbroken and when I try to figure out why it is hitting me so hard at that particular time I come to realise that it the day before the monthly anniversary of his death. Every time without fail. I don't try and stuff it down though, I feel it fully as sucky as it is. Somehow by taking ownership of the feelings it seems to stop them from overpowering me.

One particular aspect that I have struggled with is my memories of him. Every time I think about him it is a time that he was in the hospital, only post accident memories, and I was starting to get concerned that I was only going to remember him that way, helpless and dependent. Then I went back to our whatsapp group, the one where we kept each other updated visit by visit and discussed all of his issues at whichever point in time and I read everything and listened to every voice note all over from beginning to end. It took almost 3 hours. I was shocked by how much I had forgotten, or gotten wrong from a timeline point of view in this blog. There were far more ups and downs than I had ever remembered. There was one voice note from November that I had eliminated from my memory, didn't even know it existed, until I pressed play. My heart caught in my throat as I heard my dad's trach voice (a rare occurrence, I had forgotten he was well enough in November to have his trach cuff deflated at times to talk) address my sister and I. The tears came immediately because it felt like he never left or like I was hearing a message from the grave. The end of the message is priceless though - I love you, bye... I have listened to it often since I found it.

Despite all of the above and also feeling like people seem to think that we should all be over his death already (which I try not to let upset me but I do get annoyed at times), I actually feel much stronger emotionally. I am starting to have more and more spontaneous memories of him from before the accident which hurt at first for all the things that they will never be again, but I have started to find myself smiling at some of the memories as well. Something I thought was never going to happen.

There is so much more that happened during this entire 8 month process prior to his death that I haven't mentioned in this blog because they are so personal and so devastating that it isn't fair to any of our family members to bring it up on such an open and public platform. I have done a load of therapy work on it and I am amazed by my own, and others, capacity for forgiveness. It overwhelms me. I thankfully don't have much experience with grief, but the little that I have gathered over the past 3 months has certainly changed me in a way and helped me to grow as a human being. Probably more so than I have done in my entire life before this.

I have realised the fragility of life. There really are no promises.

And I don't ever want to take this life for granted again.

A fresh perspective

The past three weeks have been interesting to say the least. Perhaps nothing extraordinary to the eyes of an outsider but within this little bubble which I call my life, there have been lessons and learning and growing at a rate at which I have never experienced before. Probably because even though I like to think I'm cool with change and can embrace it, I am actually extremely change resistant.

I am not going to say that everything is all fine and perfect now, in fact far from it, I still have the same stresses and problems that I had before and that hasn't changed, the difference now is how I react to it and it has made all the difference to my peace of mind. I have finally grasped concepts that I have never even been able to consider before.

Patience has become a friend - and it took a moment of impatience, which resulted in an over reaction, which in turn turned a pretty much non-existent problem into a big ongoing problem, to finally learn my lesson in patience. It was a Sunday afternoon and we had a 'water leak' in the driveway. Water was coming up through the paving in an area about the size of a brick. It wasn't gushing nor was there a fountain, there was just a pool of water originating from underground. For some unknown reason I panicked and decided to act immediately. A plumber was called and he proceeded to dig up the driveway for a solid 4 hours - with absolutely no resolution. Fun times! What had been a small pool of water was now a 2m x 5m water filled hole in the paving. Eventually it got too dark to continue digging and I called it off and got a second plumber to come through the next morning. And guess what, it was just ground water from all the rain we had been having. Nothing needed to be done to fix it because it would eventually dry up by itself. If I had just left the issue alone it would have resolved itself in a few days without any input or interference from anyone. Instead I created a problem where there was none and now I have the stress of having to fix it. And just to drive the point home a little further it has become something that is taking weeks and weeks to fix. Just being patient would have literally saved me weeks of stress.

Conversely I have also figured out how to actually identify an emergency from a non-emergency. For me, for pretty much my entire life, I have determined every problem to be an emergency. This is the problem with being an anxious person, I need to react immediately or else I don't feel like I am doing my best. This means I tend to over react and create drama and problems for myself (see above for proof of this). A few weeks ago we had to deal with a bona fide emergency (ironically coinciding with my great non-emergency above), Layla woke up at midnight wheezing and barely able to breathe. We had to rush her to the hospital where she was given adrenaline and neubilised 3 times before she was able to breathe normally again. It was one of the most terrifying moments of my life, (although to be fair I have had quite a few in the past year) and it created a stark contrast in my mind as to what I need to react to swiftly and what I don't. Here is the thing, there are very few moments that require immediate and urgent reaction. Everything else can actually wait.

Once this finally sunk in I felt all of the intense stress and anxiety I had been experiencing for just about forever now, just melt away. So long as no one is going to die, get sick or get hurt from not reacting immediately then I am allowed to take some time to come up with the best solution to the problem first before reacting. I am the type of person that can thrive on stress to a point and then when it all becomes too much I become paralysed and unable to react appropriately at all (it is embarrassing how I react at times). I have been in this state of paralysis for almost 7 years now which explains why I haven't bothered to look after myself. I haven't been living, just merely surviving from moment to moment. Just surviving isn't a bad thing by any means, our bodies were designed for it, but only for short periods at a time. Periodic stress is actually good for you, constant stress most definitely isn't and since dropping the unnecessary stress for those things that are out of my control I have freed up brain capacity to focus on more important things, like spending quality time with my family where my mind is actually present, or finally taking on some projects around the house, or maybe (just maybe) even finally looking after myself and my needs.

Making this change in my way of thinking has made me calmer, happier, and more motivated than I think I have ever been before. I know that this won't eliminate the stress in my life, and at times, especially with extreme stress, I am likely to go back to my old ways of thinking although I hope that I can always eventually come back to how I am thinking and feeling now.

This past year has been difficult to say the least, but what I have learnt has been priceless and for that I am forever grateful.

The day time stood still - Part 7

Once again, things seemed to be going well, relatively speaking that is. The doctors had visited the long term care facility and deemed it suitable for dad to live out the rest of his days, however long that may be (no one could predict), and we were just waiting for the caregivers to visit dad to confirm that they could manage his conditions. So when I say Friday the 13th of January 2017 came out of nowhere, while I can see you thinking how could they not expect this? - I really do mean it. It took us by surprise.

Somewhere around 9am, while at work checking a delivery of block mounted pictures I had just received, I got a call from my stepmom, she sounded calm, but told me that the hospital had called for her urgently because dad's heart rate had slowed dramatically and his oxygen saturation was in the 50's and she would call me once she got to the hospital and knew what was going on. I didn't freak out, we had done this so many times before and he had always been okay. I refused to cry or assign any major significance to this event until I knew more. I just repeated to myself over and over we have been here before and we have always made it through.

However, if I am honest, as I pressed end call on my phone I knew what was coming. At around 9.10am my nose started to bleed profusely. My nose never bleeds for no good reason - that is my husband and daughters thing. As I wiped the blood from my top lip I then knew deep down that this was it. The call didn't come long after that and I hadn't realised how two words, he's gone, could literally bring me to my knees. The sobs emanated from the very depths of my soul. I don't remember the rest of the phone call, but when I finally took some notice of my surroundings, I was on my hands and knees on the floor of my office, my face was drenched with tears and feeling like my heart had been ripped in two.

Dad left this world at 9.10am on Friday the 13th of January 2017. His heart just slowed down until it eventually stopped beating. He had decided it was time.

He had given us 8 months of the bravest and toughest fight of his life, possibly the greatest gift he could ever have given because while it was almost impossible to face at times, it forced us to right old wrongs, forgive and then love without all of the hurt that used to taint it. Parents are human, children are human and we all  make mistakes and many of them and here we were given the most precious gift of acceptance and closure. Nothing was left unsaid and I realise now that this is a luxury denied to many and I am so grateful to have received it.

Today, I am still struggling to come to terms with what has happened. There are times when I am in disbelief that anything I have written in this blog could even be true. How does all of this even happen outside of a movie? 

But it was true, I lived it, I breathed it and somehow... I survived it.

The Rollercoaster - Part 6

Hospital number 3. ICU number 3. 

By this point it was approaching 4 months since the accident, we were losing precious time as far as rehab and trying maximise neurological function were concerned. It was also becoming more and more difficult not to lose hope, but my dad did not falter. He continued to fight, and fight hard.

Once again, he started the long and difficult road to breathing on his own. This hospital was immeasurably better than the last and it was evident in his progress. While he suffered from intermittent lung infections, his drive to get himself to rehab became relentless. His positivity became infectious and hope surfaced (again). He had set a goal and he pursued it with a bravery I have never seen before, and I am guessing I am unlikely to see again. We started to get photos and short videos of him taking trips in the wheelchair to rehab and outside, practising swallowing fluids and trying to talk.

I continued with my weekly visits, and they were mostly positive every time - at least for the first few months.

I had a very honest discussion with his doctor, and this is when I learnt that his injury was complete. There was no function to be found below the injury level. In fact, due to the numerous setbacks since the accident, his injury was considered to be one level higher (C6) than it had been in the weeks after his accident. He had indeed lost function. He was not going to be able to use his fingers and his lungs were significantly damaged.

In September - 5 months, almost to the day, after his accident, he turned 54 years old. My sister flew up from Cape Town and family rallied around him. He was still positive, with intermittent low days, but who could expect anything less considering he spent the majority of his time lying flat on his back staring at a white ceiling.

I can' t remember the exact time frame now but I think it was sometime in October, my sister flew up once again to visit and for us girls to also have a spa day (a wonderful gift from our aunt and uncle). Dad was so happy to see her and although it was distressing watching him in pain as the nurse cleaned the trach site, I know they were glad to have had that time together. He was only on CPAP for a few hours a day at this point and was no longer ventilated. Hope was soaring high.

The week after, I showed up on Sunday morning for my usual visit and dad kept on mouthing 'coffee' to me and I wasn't understanding. He often asked me for beverages so I didn't take too much from it, but every time I said that I was going to leave he mouthed "don't go. coffee". As it turned out, he had been waiting for my stepmom and the physiotherapist to show up because they had planned for us to go to the coffee shop. This goes down as the best visit we had ever had.

He was put in the wheelchair and off we went to the hospital coffee shop, our favourite nurse in tow in case he needed any breathing assistance or got dizzy. He had the hugest grin on his face as we sat around the table. All of us ordered coffee but he ordered a kiddies chocolate milkshake. I looked at him and asked him how he was feeling on a scale of 1 to 10 - he smiled and mouthed '12'. He destroyed that milkshake and proclaimed it to be the best drink he had ever had. The entire coffee shop experience wasn't probably more than 15 or 20 minutes, but it imprinted on my heart. When I eventually left the hospital he thanked me for staying to experience that with him. I like to hold onto this memory, because heavens knows I had to hold onto it tight in the weeks that followed,

In the following week he developed another lung infection. It made him very tired and then he was put back onto ventilation. This was a massive blow to all of the hard work that he had put in, and became an immensely pivotal point in this journey. He was miserable and seemed to just give up. I visited again but he was depressed and slept for the majority of the visit. Historically (well in his hospital history at least), I noticed that depression always preceded something bad. This time was no different.

The next week I visited he had just had a bronchoscopy and was still sedated (bad timing on my part), so he slept through the entire visit, but now that icky feeling was back. My stomach was twisted in knots. The nurses told me how he had asked them constantly that week to just take him off the machines, he had had enough. My heart just broke for him. That night at home, I made sure that my phone was charged and the volume on loud, some part of my brain was just telling me to be ready for a call.

The next morning I woke up and relief flooded my body as I picked up my phone and saw that there were no missed calls. But this relief was short lived; my phone rang as I held it in my hand. His blood pressure had tanked in the early hours of the morning causing his heart rate to skyrocket. The medical staff were getting zero response from him. He was in a coma. I couldn't do anything but lean over the kitchen counter and sob. My whole body felt the depth of that despair. My husband had to keep reminding me to breathe.

I had already taken the morning off to watch my daughter's karate demonstration, so I just called in to take the rest of the day. I watched Layla do her karate exercises with the feeling that my heart had been filled with cement. When it was done I went straight to the hospital. Seeing him like that was heartbreaking, he was barely trying to take any breaths for himself and I just knew my dad wasn't there. I stayed with my stepmom at the hospital the entire day and we met with his doctor. We had to have the discussion about resuscitation and further medical treatment. At this point dad was on an antibiotic flown out from the USA especially for him. The doctor admitted that this was his last resort and it didn't seem to be working, after this there were no more treatment options left.

My stepmom and I struggled over the decision. We phoned the close family members to discuss what to do. I cannot even begin to explain the enormity of making potentially life ending decisions for someone you love. The guilt settles on your soul and weighs you down in a way that can't be described. It is the kind of thing you never ever get over. Signing a letter to refuse medical treatment for further infections (current treatment would remain in place for the time being), and putting an official 'do not resucitate' order on file made me feel like a traitor, as if I had given up on him. Signing that piece of paper made me feel sick to my stomach. The truth though is that we had to rest on his wishes from his entire life. How could we have known that after a lifetime of telling us what we should do in this situation that we would actually end up in this exact situation? Had he been preparing us our entire lives? I couldn't bear the guilt, it was at this point that I finally decided to start therapy to help me cope. I am still quite disgusted at the minimal support that we received from the hospital from a medical and ethical point of view when making this decision.

We did request a neuro consult at this point to find out if he had suffered any brain damage, but this request was not fulfilled until two weeks later when we, as his family, had reached breaking point and were in absolute hysterics. He went from coma to minimally responsive, but I always felt that minimally responsive was an optimistic diagnosis, it seemed more like a persistent vegetative state to me, but then again I am not a doctor so I can't really say. He was still taking some of his own breathes, they just weren't of a good quality, ventilation was keeping him alive.

Two weeks after this incident he was still not conscious and we finally got the neurologist to see him. She suspected hypoxic brain damage, but we needed an MRI, but the medical aid refused to pay for an MRI. And so my stepmom and a lawyer attended another meeting with the treating doctor and a social worker. The doctor explained the current condition, words like minimally conscious, hypoxic brain damage, poor prognosis, MRI futile, further treatment futile, lungs too badly damaged were used. Essentially my dad was dying. The question was, how long did we want to draw it out? The request we made two weeks prior was only then made official and he was to be made comfortable on morphine; with fluids, nutrition, and ventilation provided. All other medication and measures were to be stopped. Ventilation was set at the minimum that the doctor felt comfortable with, which was 60% oxygen, 10 PEEP and 16 breathes per minute and some other stats I can't remember at all now.

I drove to the hospital the next night and of all things, I sang to him - Iris by the Googoo Dolls. Then I said goodbye. We all said goodbye a lot. His eyelids would open a slightly and you could see his eyes staring blanking roving rhythmically from side to side as if watching tennis.

Over the next week his vitals remained stable, I started to visit twice a week. My marriage started to take some serious strain, my work suffered, I was basically a complete mess. And then I showed up one day and his eyes were open, and I could see that my dad was back. Unfortunately he was unable to even move his mouth and was essentially trapped. Couldn't move, couldn't talk, but was definitely conscious. This was worse than having him non-responsive. The thought of him trapped in his own mind was extremely distressing and I could see that he was distressed, and there was literally nothing that anyone could do for him. How was this happening? All treatment had been stopped and now he was doing better? We were waiting for him to die, but there he was, coming back to life.

By the time I visited him the next time he was mouthing to us again, very slowly and not very well, but he was communicating. He was also understandably exhausted. We were all floored. His recovery was beyond unexpected, the doctors were just as stumped as we were yet they still had no treatment left for him. He was never going to be able to get off of the ventilator and his autonomic reflexes where failing him on the regular.

By this time it was December - 7 months since the accident - 7 months in ICU. It had become a never ending exhausting nightmare for us, can you even imagine what it must have been like for him?

I was getting ready to go away for Christmas and was preparing myself for my last visit before the holidays. I had to leave not knowing if he would be there when I got back or not, but I stayed positive and let him know that I would be away for two weeks, but I would see him again when I got back. Something that strikes me about every visit that we had - no matter how bad it was for him and so long as he was able to communicate, every time he saw my face the first thing he would ask me is how I was doing. Like it even mattered in the context of where he was.

I once again left heavy hearted, but with the tiniest spark of hope.

He stayed stable over Christmas and my stepmom sent regular updates and pictures. Unfortunately he did completely forget why he was even in the hospital, the entire preceding 7 months wiped clean from his memory. My stepmom had the awful task of retelling him everything that had happened and watch him process it all over from the beginning again. It was devastating.

I got back home in the new year with a certain level of acceptance and peace. I had come to terms with this is how it was going to be, he was never going to make it to rehab, we would be visiting him like this forever, he would not be able to ever leave the bed or the room, but he would still be alive and that was all that mattered. Somewhere during this time the medical aid had decided that they were not going to pay the expensive ICU fees anymore and he would need to be moved to a long term care facility, so that move was in the pipeline. Dad was actually looking forward to it.

I made the first visit of the new year - on the second weekend of January. I walked into the ICU and up to his room and stopped dead in my tracks. His bed was empty. I stood still for a couple of more seconds and scanned the other beds around me, something I hadn't done in months because I could no longer get invested in other people's stories. I couldn't see him. The ICU was actually really empty that day and I had to go and find a nurse. Dad had been moved to the other isolation ward in the adjoining ICU section. I never even bothered to ask why, the nurses were being unusually unhelpful that day. I had to interrupt some poor patient's breakfast just to find out where I could find the aprons and gloves in this part of the ICU. Thankfully she was very graceful about the intrusion.

I went in to see him and his eyes popped open as soon as I walked through the door. I wished him a happy new year and then we just spoke and spoke. He insisted I get him orange juice so I had to find a nurse because I sure as hell wasn't going to be responsible for him aspirating. He had to wait 20 minutes which pissed him off, but we had a good chat during the wait. There was a certain sense of peace about him that day that had never been there before and he openly told me that he was battling to come to terms with what had happened, which he quickly followed with asking me how he could make money on the internet. He was trying to plan his life going forward. I told him that it was my birthday the next Sunday, and since my husband would be in Dubai that I would come and spend it with him and he seemed to like that idea. We laughed and laughed because I couldn't lip read the word 'nurse' and when he spelt it to me I somehow managed to spell 'arse' instead of nurse. Actual genuine silly laughing. I always clock watched while I was with him, but this time was the first time it was because I didn't want to leave just then. So I stayed a little longer than usual. In the last part of my visit he started to say he was battling to breathe, which isn't technically correct because he was ventilated, but he had a pretty mean panic attack which was solved relatively quickly with an extra shot of morphine. I thought I would panic with him, but instead I held his upper arm where I knew he could feel and I told him that everything would be okay. He turned and looked straight into my eyes and gave me a smile I hadn't seen in some time. Once he had settled I said goodbye, told him I loved him and that I would see him next week. Everything felt calm and for the first time like it would actually be okay.

That was the last time I saw him alive.

'That' Hospital - Part 5

And so there he was, in another hospital, starting over from the beginning again.

The first time I saw him there I couldn't find him and the staff were the most unhelpful people I had ever had the displeasure of interacting with - which is saying something because I generally found doctors, and on a rare occasion a few nurses, unhelpful - but at this place it seems like disdain and unhelpfulness was part of their training program.

At least when I saw him this time, he was alert, unhappy to have taken such a far step backwards, but as communicative as he could be considering he couldn't talk. I still hadn't developed decent lip reading skills though (spoiler alert - I never did). My husband was with me this time, and when he came in he said the usual hi and how are you and my dad instantly [ut on that bravado that only men are capable of around other males. I don't remember his exact words, but I think he mouthed back something like 'I'm all good'. Yes, right. All good.

This hospital gave me the worst of icky feelings, the staff all but vanished during the visiting hour (I didn't like this either, we could come and go almost as we pleased at the previous hospital, here there were 2 one hour periods a day you could visit and being a much bigger hospital it was overwhelmingly busy). I just knew straight away that I wasn't going to like this place. It had horror movie mental hospital green coloured walls, construction going on, and it just felt off. The equipment was ancient and I hated that I didn't know how to read their ventilator settings. I had gotten awfully used to and somewhat comfortable at the old hospital. I never got comfortable at this hospital. Maybe because they were so lax about visitors washing their hands and wearing gloves, it just didn't seem right. I was sure he had accidentally been sent to a public hospital instead of a private one, but alas not quite the case. To be perfectly honest, if that is a private hospital, I feel the deepest despair just thinking about what an actual public hospital must be like. I feel so appreciative and grateful for being able to afford medical aid.

I think I did about 7 or 8 visits to this hospital, that was about how many weeks he stayed there. The ups and downs seemed to get more severe here, or maybe we just finally knew better. The doctors wouldn't arrange neuro physio for him in ICU, even though they had 'one of the best' neuro rehabs just a few floors down. Fucking ridiculous if you ask me, so he didn't progress quite like we had seen before.

My second visit there I couldn't find him (again). There was always that moment of sheer panic in those situations. He had been moved one bed over, however I didn't see him because this bed happened to be in an isolation room. At the previous hospital in Nelspruit I had very morbidly named the isolation ward in their ICU the dying box. 1. Because I obviously have no tact (to be fair I didn't say it out loud to anyone that wasn;t a family member) and 2. Because we never saw anyone come out of there. Now this was not necessarily true, but we hadn't to date witnessed anyone come out of there, but we had seen new people go in. In my dad's case it certainly wasn't true because he did leave, I won't talk about how it was only so that he could go into another isolation room at a different hospital just yet.

I have blocked out a lot of the memories from this hospital so I can't remember too many of the emotions and finer details, it just wasn't a good time, but some significant events happened here.

I met hallucinating dad for the first time. ICU syndrome it was called. He had this in Nelspruit as well when he was telling us about his stashed millions and where to find them, but that was kind of endearing, the hallucinations became more severe and definitely more sobering while he was here. It was utterly insane. I never knew whether to indulge the ridiculous hallucinations, like walking out of the room to fetch his welding gloves so that he could help the old man being mauled by the bear. My stepmom and I ducked from bats, hid from bears, got on the boat (bed) to get away from crocodiles. And the one day he was absolutely insistent that someone was out to hurt me and my sister, he was incredibly worried. The only one I could get on board with was to help him try and find the R 74 million blue diamond he claims he had procured who knows where.

It was here that he found and gave his life over to God, an achievement which goes beyond the miraculous. He also decided that he did in fact now want to be recusitated afterall, and he was - with cpr - twice.

He became afraid of breathing without the ventilator and the doctors were asked not to tell him when they were turning down the settings because his panic attacks alone would set him back. And he did have many set backs. He started to get lung infections more regularly and they got more and more drug resistant every time. He didn't really make much progress neurologically.

One particularly bad day I wasn't myself and I struggled to communicate with him. Luckily I wasn't the only one visiting so I held back closer to the door. It was that day that I watched in sheer horroe, through the glass partition between his isolation room and the one next to him, as a man's heart flatlined 4 times in the space of 10-15 minutes. No curtains were closed, nothing, I just watched it all happen, and let me tell you it is SO much calmer than Grey's Anatomy would have you believe. I'm just impressed there were staff present during visiting hour to assist him. Two weeks later this man went home. Try reconcile that in your mind. I saw him 'die' over and over, his condition was particularly horrific but I don't feel comfortable discussing it here, and two weeks later he was ready to go home - yet my dad after now 3 months was no where near ready for rehab never mind home.

Somehow, dad did start to get better at breathing again though, and that word 'rehab' was starting to be thrown around. I didn't get my hopes up this time. What had happened though was that we had all become increasingly disastified with this hospital. My dad would tell me how horrible the nursing staff were, but I mustn't complain or else they would make it worse for him. For once when he said this I actually believed him. My stepmom visited the rehab downstairs and she wasn't impressed. She then went to another one at a hospital about 15 minutes away and the choice was clear, she immediately made a request to the medical aid to have him transferred again. It was a long shot, by this point the medical aid had already paid millions in claims for my dad so why should they move him, but by some miracle they agreed. Grateful doesn't even come close to how we felt.

My last visit to this hospital turned out to be one of my favourites with my dad. He was in an amazing mood. He was 'singing' along to the songs on the radio, and we generally just had a great, easy visit. I think he was as happy as we were that he was moving, and also that it was to go to rehab. Yay progress!

The receiving hospital was at least smarter than this one. They had no plans to receive him directly into the rehab. He would be admitted to ICU for 5 days for assessment before placing him in the rehab unit and it was definitely one of those decisions that was for the best.

Because, you guessed it, the guy that was ready for rehab, the one that was once again doing so well, the one that only had a 20 minute ambulance ride to the new hospital, went into respiratory failure on the drive. Again. It was the 31st of August. Three and half months since the accident and he was back on full ventilation again. 

Square one.

Waiting for Rehab - Part 4

We didn't go back to Nelspruit again.

Although he was still on the ventilator, he steadily got better and better, and as he got better our focus shifted from tentative, cautious hope, to the mindset of 'let's get him home'.

Getting him home required that he was breathing on his own, which seemed like the most mammoth task that not one of us, with the exception of my dad, could do anything about. Helpless doesn't even begin to describe it.

He progressed steadily day by day. There were dark days, darker than I can even care to imagine as he faced a life without the use of the majority of his body, possibly even including his hands. I have been too scared to even try to imagine what it must have felt like to face that reality, and I know whatever I can imagine would fall so grossly short of what it actually felt like for him. There is just no way to know.

I would try to phone every other day, other than being nearly impossible to talk to him because he was always busy with physio, doctor visits, sleeping or a bath, it was just the weirdest sensation to talk into a phone and have no one talking back. The nurse would hold the phone to his ear and at the end of the 'conversation' she would say that he was 'talking back' but without the evidence of sound, it could have all been a lie.

I would say the same thing every time, "hang in there dad", "keep working hard dad" "we'll get you home as soon as we can dad", "I love you dad".

Then one day I called and started my very familiar monologue and was stopped in my tracks by a very rough and raspy voice answering me back. My heart skipped a beat and the tears started to stream down my face (I'm not sure I've ever cried from joy before), hearing his voice after all that time was one of the most magical sounds. He had been fitted with a cuffless trach which allowed air to pass through his vocal chords and so for a short time we got signs of life from the other end of the phone.

We started to see a light at the end of the tunnel, an actual, real live, potential transfer date to what was supposedly one of the best neuro/spinal rehab centres in the province (country? I don't know). 

Finally, right at the end of June he was breathing on his own and had been taken out of ICU and put in a high care ward. He was being taken outside in a wheelchair to see the sunshine for the first time in well over a month. He had started to eat small amounts of food and take liquids by mouth. And after being pushed back a couple of times the transfer date was set.

A few days before his scheduled transfer he even had his trach removed, what freedom he must have felt to have that flippen tube out of his throat. This was amazing. To go from being told we should consider letting him go to about to get him home? Incredible.

And then the day before his transfer the request came through to have the trach put back in because he was struggling to clear his lungs on his own. I wish we had realised what that actually meant at the time. I wish the doctors had taken bigger notice of this little step backwards, it was a sign. That night he had the trach reinserted and then on Monday 4 July 2016, roughly 7 weeks after his accident, he was put back in the ambulance for the long trip 'home'.

We were so excited to be getting him into the major recovery part of this journey.

However, as subtly indicated the night before and despite the confidence that the doctors had in his progress up until that point, rehab was just not to be.

We had been in high spirits that day, waiting for news of his safe arrival at rehab in Pretoria. Then I got the call (there were so many of these calls) just after I walked in the door getting home that evening. Instead of being admitted to rehab, he had been admitted to ICU and put back on full mechanical ventilation. He had gone into respiratory failure on the drive. I would have hated to have been a paramedic in that ambulance that day - can you imagine a 4 hour drive not knowing if you could keep your patient alive long enough to get to your destination? My heart sunk so low. This was not even close to we had been anticipating. I had been dreaming about visiting him in rehab, watching him getting stronger and more capable every week. I felt stupid for even thinking about it. Never get ahead of yourself is what I always try to tell myself (FYI I never listen) and my hope lay in tatters, crushed beyond recognition, in front of me at the dining room table I was sitting at when I took the call.

Someone please tell me how I was supposed to get up from that table and carry on with cooking dinner, getting my kid bathed and into bed like everything was normal? How were any of us, most importantly my dad, supposed to try and understand the purpose of what was happening here? So help me if anyone ever says to me "everything happens for a reason" again. Sometimes there is no reason, sometimes things just go to shit.

I thought I would never have to see the ICU again, never have to put on the stupid plastic apron and the sweaty latex gloves again, and now, now I would be going back to the ICU just in a different hospital, and this hospital, oh my word, this hospital - I will never have anything good to say about it.

Back to Nelspruit - Part 3

So just to back up a little bit, it is difficult to keep track the flow of how everything happened, the accident was on 17 May and he had surgery for the tracheostomy on 28 May - so we're only 11 days into this story. 

As it goes the tracheostomy was successful although that night his heart did that rate dropping thing again and he developed a minor infection, you know just to keep everyone on their toes. Relatively speaking though things started to improve. He was taking more breaths in his own than the ventilator was giving, settings were being reduced, he was awake and actively participating in his physio and Nadine was doing her best to become an expert lip reader. With a tracheostomy air does not pass through the vocal chords which means no sound is made when speaking. We all had to learn to lip read and to be honest, I personally never got particularly good at it during the entire process which was equally frustrating and amusing. 

Then on the 30th of May his respiration rate started to increase, but not in the good kind of way. By that point he has asked for his daughters so Sam and I were already starting to think about making another trip to see him, but not exactly with any sort of urgency. Life had other plans. That day things started to go south very quickly (a phenomenon we named the ICU rollercoaster) and we were asked to please come through to the hospital, as in as soon as possible. This is never a good sign is it? Once again, panic set in, except this time we were less oblivious to the seriousness of the situation so we had an added feeling of dread. Flights were booked, airport pick ups were sorted and the next morning we made the 4 hour drive once again, thinking in the back of our minds that it was entirely possible that we were going there to say goodbye. This was now my 4th trip to Nelspruit in a month, ironically enough, having never set foot in Nelspruit before, we went on a small family weekend away to Nelspruit at the beginning of the month, just a little over a week before the accident happened. At the time I had enjoyed that little holiday and Nelspruit. Now I started to harbour some resentment towards it.

We arrived a little after lunch time, dad was once again heavily sedated and with his ventilator settings maximised. He had stabilised by this point. Critical but stable. The lower part (lobe? I don't know what it is called?) of his left lung had collapsed and the doctor believed that he had emboli on his lungs. The problem is that they couldn't really give him medication for that because it might cause a clot from the spinal surgery which could potentially result in a stroke. Things were complicated. I struggle to explain the feelings that came with news like this, but mostly I struggle to remember. Bad memory or self protection, I don't know?

Later that day we were standing over my dad's bed chatting, he was still fast asleep. We liked to have normal conversations over him because before we had often gotten a smile or chuckle out of him even if he hadn't opened his eyes. It was the closest thing we had to normal.

While I was busy tripping over the drip stand or doing something else clumsy or silly. The cardiologist came over and looked at us with that look, I can't really describe it, I don't know if it is pity and I am fairly certain it is not compassion, but there is definitely this look that doctors give you when there is pretty much jack shit that they can do for you. Along with 'the look' came his abrupt announcement that perhaps we should start to consider letting him go. All 3 of us looked at him aghast. WTF did he just say over my dad's sleeping body - the body we had been assured could hear EVERYTHING we said while it was unconscious. I was nearest the head of the bed and I found myself almost immediately and subconsciously blocking my dad's ears. I didn't even realise until Nadine asked him to discuss his opinion with us away from the bed that I was doing it. Nadine started to cry, I started to cry and my sister moved into 'let's find shit out and get everything sorted' mode. We all took turns to be the strong one in rotation it seemed, but she was best with holding us together at these big moments.

The cardiologist confirmed that we did need to discuss everything with the intensivist since she had become his primary treating doctor. You know the one that was impossible to talk to and always had her bag, ready to run? Somehow, through Sam's sheer determination and will we got an appointment at midday with the intensivist. We also for the first (and only) time got a social worker to visit with us and counsel us. This was difficult not only because of the sort of discussion we were required to have, but also because Sam and I were supposed to be leaving at 12 and this meant changing flights, etc. It seems petty now, but even tiniest action requires maximum effort when you are faced with such a monumental discussion, so it is something that I have remembered. I called my uncle in tears and told him, very dramatically might I add, that he needed to come to Nelspruit because dad had been saying there was something he wanted to tell him, but he wouldn't tell it to us to pass on to him.

Dr on-the-run showed up on time at least and she even sat down, albeit I'm pretty sure with her bag still on her shoulder. She placed my dad on a 5 out of 10 as to which way this whole thing could tip - so yes, your usual non-committal doctor stuff and then she asked us for one more try to wean him from the ventilator, she wasn't comfortable saying that she had done everything she could do to help him just yet. And so she implemented extra after hours physio, which I am sure cost the medical aid must of loved (actually I dealt with them a lot in the beginning so I know they did not), and he started to get physio every few hours to help clear his lungs.

So there we were.

I kitted back up into what felt like my 112th plastic apron and pair of latex gloves, I laugh at how badly used to fumble putting those gloves on and by now it is the most natural thing in the world to me. And then in I went back into the ICU to say goodbye. I put my earphones into his ears and hooked up my ipod and played Zoe Jane by Staind for him (which is not exactly allowed, but under the circumstances fuck it, right?) and then Sam and I said goodbye to him, wondering if it would be the last goodbye. To be fair we felt this with every goodbye for most of this experience.

Just before we left we watched his heart rate dip into the mid-40s and he was taking hardly any breaths on his own, the ventilator was doing it all. It was if he had just given up and I was sure it was going to be all over soon.

Well I was wrong. Apparently all my dad needed to hear was that we might switch him off to get him fighting again.

The next morning, back at home, and with my uncle having rushed through to Nelspruit, my dad proceeded to wake up and be the most alert and responsive he had been since the beginning. It was an unbelievable turnaround and made me look like a complete fool for having called my uncle sobbing about dad's impending death just the day before. But that is the life in the ICU for you, and a happy (well somewhat less distraught) fool I was.

Was this the miracle we had been waiting for?

Waking Up - Part 2

On the day of my dad's surgery my uncle, sister and ex-stepbrother drove out to the scene of the accident to see if they could figure out what had happened. I think we needed it for potential claims, but probably also to get a sense of understanding of why it was that we were even there. I am not going to get into too much detail on the accident theory here, but it was a God given miracle that he was a) found and b) even alive. I stayed behind at the hospital with my aunt and stepmom and drank a ridiculous amount of coffee.

His surgery was on the Saturday morning, not a popular surgery morning so at least he was the first (and probably only) patient on the list. The surgery lasted about 4-5 hours and dad was to remain heavily sedated for a couple of days. We had hope that once the swelling from the surgery and immediate injury had gone down that the pressure on his spinal cord would reduce and we might, just might, get some sort of motor or sensory response from him. It seems impossible now, but it was that kind of hope that got us through.

On the Sunday, everyone needed to leave, lives continue, and we lived so far away from Nelspruit. The intensivist told us that they would start to wake him up on Monday. Monday. The only day since he had been admitted that no one would be there. That was a gut wrenching realisation. Imagine waking up, unable to move, unable to talk, and thinking you had been abandoned. I decided to drive back on the Monday morning, I just couldn't bear the thought of him waking up alone.

And so I drive home, drop Sam at the airport, spend the night with my family that I hadn't seen in 4 days and then get up the next morning ready to drive back. Being completely alone for the first time since it had all happened, a lot of crying happened on that drive.

I went directly to the hospital opened the doors to the ICU to see his curtains closed (as usual) and then planted myself in the now ever familiar family room. The neuro physio came in to see me. She told me that he was very tired as it was to be expected, but was doing well. The first six weeks to six months of rehab would be critical in terms of recovering any function that is actually able to be recovered, but nothing would be set in stone until 2 years had passed. She also said that he definitely had bicep and tricep movement which was great, but we had no way to know if his hands would function until he was more awake and able to participate. The bundle of nerves, C8, responsible for hand and finger function lie right inbetween vertebrae T1 and C7 - exactly where my dad's injury had occurred. I had started to accept paraplegia, but not being able to use his hands? That wasn't even a thought until then, but you know what, hope still remained

I don't remember seeing him that first time to be honest, but I do remember that evening. Vividly. He was awake, and holy shit was he fighting. The tears streamed down the sides of his face and he relentlessly bit at that intubation tube trying to get it out of his throat. He had moved his head so much that his neck and back brace had ridden up onto his chin. When he saw me I looked into the face of fear and despair. He just mouthed at me over and over "help me". 

It was utterly devastating, but I couldn't let him see me lose composure. I tried to explain what had happened to him as gently as possible, I begged him to stop fighting, because he was actually doing really well on the ventilator and the nurse was hoping that they would be able to extubate him the next day. I tried to give him hope, but I could see in his eyes that he was having none of it. 

Shift change happened and the sister in charge for the evening very rudely asked me to leave because his blood pressure was too high and somehow that was apparently my fault... not him waking up to find out his worst nightmare was real.

I told him I was going to go, said goodbye, and gave him a kiss and it was the first time I saw a smile. So he didn't actually want me there. I remember ripping off the plastic apron and latex gloves (that you need to put on every time you walk into the ICU) and violently throwing them in the waste bin and as I pushed the door open hot angry tears began to run down my face. I don't know why I was so angry, but I was. I nearly ran down that passage to get out of the hospital. This didn't feel fair.

I cried waiting to get some food, I cried checking into the road lodge, I cried eating my dinner and sitting in that shoebox of a room. Most of all though I felt so incredibly angry and I had an icky gut feeling that would just not leave.

I didn't sleep well that night, but I made sure to get up very early the next morning. I wanted to be waiting outside that door as the doctors finished rounds so that I could ask some questions. If you want to speak directly to a doctor this was pretty much your only opportunity.

I sat alone in the family room, drinking coffee, again, when the intensivist popped her head in and saw me sitting there. This woman always had her handbag over her shoulder looking like she was about to bolt in the opposite direction, even when talking to you. She explained to me that my dad's heart had stopped beating in the night, but the ER doctor was called and he was okay, and the cardiologist was looking at him now. Critical but stable - there is a phrase we heard that a lot. He was back to being heavily sedated and his ventilation settings, which had been on the minimum just the night before, had been dialled right back up. He was going to be difficult to wean off of the ventilator she said (guys, please don't smoke, you have no idea how much of a difference being healthy makes to a recovery of this kind). I forcibly reminded her that my dad did not want to be resuscitated. Her eyes looked like they were going to fall out of her head. She pulled me into the ICU (handbag still over her shoulder with her about to run in the opposite direction), there were two doctors and about three nurses standing around the bed and she made me tell all of them right there that he was not to be resuscitated. Do you have any idea how much guilt and pressure comes with being the person to say those words, right over the person that you love? Someone wrote it down on his chart, which was essentially useless because they started a new chart every day and they never wrote it on any subsequent charts that I am aware of, but anyway.

The head sister came and sat with me later to tell me that his heart never stopped, it just slowed dramatically, we will never know what actually happened but it doesn't matter now does it? Being naive and ever hopeful I just reminded her again that he didn't want to be on life support, to which she gently reminded me that he already was. The guilt started to seep in.

I stood with dad for a while, he just slept. What I would have given for a touch of morphine and dormicum for myself at that point. I complained to the neurologist about the brace that kept on riding up over his chin and he gave the go ahead for it to be removed since the surgery had already been done. Now he just had the abdominal brace to assist his diapraghm in the breathing process, and of course the feeding tube, the central port, the intubation tube, the blood transfusion, the ventilator, the vac therapy machine for his foot, the monitors and all that goddamn beeping. Who knew it would take all of those machines and equipment to keep one person alive.

I decided to leave for home that day since my stepmom would be on her way back, and dad was going to be knocked out for the day at least. I cried the whole drive back.

Not long after this I believe was when they decided to start to wake him up again, if I remember correctly it went a little better this time. My stepmom was with him at this point and he was just as stubborn about trying to bite the intubation tube out. He was given a mouth guard to stop him from chewing on the tube which he would just spit out and then get to work on the intubation tube again.

Based on everything that had happened, and that was happening, we wanted to get his unequivocal opinion on what he actually wanted done as far as resuscitation and life support measures are concerned. I can tell you now. that if you are at this point, it is already too late to talk about such things, but we had become so afraid about doing the wrong thing, afterall this wasn't our life to make decisions with and because only my stepmom was there, the responsibility to try and find out fell on her, which is something I will forever regret because it was crazy stressful and completely unfair on her. Also dad was in no position to answer any such questions because he was drugged and in pain and distress. I wish I could take this all back. It never got to the point of asking, but he did tell Nadine that he did not want to die.

Somewhere around this time the decision was made for him to get a tracheostomy (incision in the throat and insert the tube directly into his trachea), this would make him more comfortable without having the tube going in his mouth and down his throat and also it is apparently not advisable to have the intubation tube for too long.

With having the assisted breathing, the airflow to the lungs bypasses your nose and mouth, the place where the a lot of germs are caught up so that they don't make it to your lungs and cause infection. By using these tubes we were keeping him alive, but had opened up an easy access highway for germs to get to the lungs and so he was tested daily for infection and chest x-rayed regularly.

This breathing thing was obviously going to be a challenge. If only we knew how much.

Outside of the ER (far outside) - Part 1

On Tuesday the 17th of May last year my phone rang at just a little bit past that time at night where you are comfortable having your phone ring. My stomach dropped a little as I looked at my phone, and then it just about fell through the bottom of my feet when I saw it was my stepmom. Thinking of my dad, the the motor bike riding, sky diving, shark diving, risk taking guy made this call, at this time, to suddenly feel so much worse. I paused and took a deep breath before answering.

I only remember the key words out of that conversation: accident. motorbike. hospital. nelspruit. can't move. possible spine injury. spinal shock. on my way. will let you know. I think I asked questions, I can't be sure now.

Heart pause.

Then tears.

I tried to carry on watching whatever it was that we were watching on tv at the time but I completely blanked out.

My biggest mistake that night was to assume that when you have an accident of this magnitude that you either die or that you get lucky and make a full recovery. Nothing could ever have prepared us for the state of limbo we were about to enter.

I don't remember exactly how the rest of that night or the next day happened, if there were more phone calls or not (there probably were) and how much I did or didn't know at that point, but now I have hindsight on my side so whether I knew it then or not, I know now sort of what happened.

The next day I went to work as usual. I had a big meeting and also neither the shock nor the seriousness of the situation had settled in yet. At that stage I wasn't even sure if I was going to need to make the 4 hour drive to Nelspruit because I just assumed that I was going to get relatively good news that day and it would be a matter of waiting for him to come home and get better.

As the day unfolded it became apparent that it was going to be necessary to go, my sister was flying up from Cape Town and we would drive together the next morning. In the meantime my dad had had multiple MRIs, x-rays and scans and the news was not good. He had suffered a T1 and C7 vertebrae fracture and spinal cord compression. I cannot remove the image of the MRI (which I obviously only saw later) showing how T1 had pushed up over C7 causing C7 to stick out a very unnatural angle. The scary part though, was how significantly his spinal cord was being compressed. For reference, C7 is the lowest vertebrae in you neck, it kind of lines up with your shoulders. He also had a degloved and broken left foot. Other than these two major injuries, he was remarkably free of any other major injury. No head injury, no internal bleeding. Not even cuts and bruises, only 1 superficial graze on his calf and a bit of a red mark on his forehead.

He went into surgery to clean the debris out of his foot and also had callipers inserted into his skull so that weights could be applied (to hang over the head of his bed as traction) which would hopefully coax the vertebrae into a better position before his spinal fusion surgery in a few days time.

When Sam and I arrived at the hospital the next day that is how exactly how we found him in the ICU, all braced up, callipers in his head and hands bound to the bed because he kept on trying to swat at the callipers (at least we knew his arms were working at this stage). Despite all of this he was awake, breathing on his own and able to talk to us. He was quite distressed, begging me to get him an energade which I wasn't allowed to get, and it was incredibly distressing for us to see him like that, but now I wish I had held onto the sound of his voice just a little bit more, even if it was just asking me for juice (which becomes a pattern over time by the way).

Here is the thing about ICU. The nurses and doctors there are there to do a job, and the large majority of them take it very seriously (thankfully). It is obviously an all consuming task and for 12 hours straight as well, I hold the ICU nurses with highest respect (well most of them, some I could of done with less of seeing). The beeps and alarms seem to never stop. However this also means that there is usually very little time to hold the family's hand and make them understand what is actually happening. There were times when we felt comfortable when we should have been more concerned and there were times that we were concerned when we should have felt comfortable, but mostly we just felt permanently confused. I wish every ICU would hire a social worker to counsel the families of the patients and put the right emphasis on the medical information in laymen's terms. Just the smell of that place is overwhelming, then trying to take in the monitors, the sounds, the bright lights, the other patients and then also the concern for your family member is too much to handle, never mind trying to process a diagnosis or required procedure.

We met with the neurosurgeon that afternoon. That was when he showed us the MRI images and explained the injury. I was in professional 'hold it together' mode still and just trying to absorb as much information as I could. That delicate shell of holding it together started to crack when my step mom asked how my dad would be able to turn his neck after the fusion and the doctor responded with "well he will have to turn his wheelchair". I will never forget the look on her face, it was utterly heartbreaking. He had already told us that my dad was paralysed at that point, but some things don't sink in until you hear words like that. We still had a defiant hope anyway (which there is nothing wrong with at all), but it makes acceptance hard to come by.

That same evening my dad's oxygen saturation levels began to dip and one of my favourite nurses for that hospital had to explain to us that he needed to be intubated and placed on a ventilator just to help him cope for the time being. The level of spinal cord injury was affecting his ability to use his diaphragm efficiently which in turn was making breathing difficult. In time, and with physio, he would get stronger and be able to breathe on his own again. Or at least that was the idea. She was abrupt and straight forward in her explanation and reasoning. I appreciated someone finally being forthcoming with information, but it was difficult information to take in nonetheless. This was the second big blow of the day, and it was a difficult one.

My dad had always been adamant, and throughout his life it was something he would speak to us about again and again, that he never wanted to be on life support. He had a heart (of the anatomically correct variety) tattooed on his chest with the words 'do not rescucitate' underneath. Just for the record this is not sufficient to actually have a DNR placed so if anyone is even reading this and this is something you feel strongly about, please get a legal living will put in place, and although even that doesn't hold much ground in hospital at least your family are completely aware of your wishes and can make the right decisions in the horrible event that they need to make decisions on your behalf.

However, because the ventilation was being looked at as a temporary measure, we didn't consider it to be life support (it is) and gave permission for him to be sedated and intubated, and he remained that way until his surgery on the Saturday morning.

I don't know what to say, so....

Let's do a meet the blogger questionnaire!

I have been trying really hard to write about my dad's hospital experiences from my point of view, but I can't seem to get it out. In the meantime I shall bore you with some trivial information about myself by blatantly stealing a list of questions from http://question-meme.tumblr.com/post/87877513822/meet-the-blogger. You are welcome!

LAYER ONE: THE OUTSIDE

• Name: Roxanne (please don't sing it, I beg you)
• Eye color: Hazel
• Hair style/color: Boring brown, with that frizzy kind of wave. I have to style it if I want to look at least semi decent, but I usually wake up too late so... ummm yes.
• Height: 1.64m
• Clothing style: In my head I like the idea of being chic and elegant, but honestly if it is clean and it fits then I'm wearing it.
• Best physical feature: ??? What kind of question is this? I have a straight nose?

LAYER TWO: THE INSIDE

• Your fears: Losing the people I love. And then heights, I am absolutely petrified, I almost cried just trying to put one foot onto the platform to see the Mac Mac falls in Nelspruit, I know that it is irrational, but I can't seem to help it.
• Your guilty pleasure: Listening to 'My Favorite Murder' podcast while I work. Don't judge me, it's interesting.
  
• Ambitions for the future: How about someone submits some ideas, we throw them in a hat and I pick one at random?

LAYER THREE: THOUGHTS

• Your first thoughts waking up: I''ll just sleep for 5 more minutes, then followed by oh shit I'm late.
• What you think about most: What don't I think about? 
• Right now my dad for obvious reasons; 
• my husband and kid; 
• why people don't feel the need to stop at stop streets or red lights anymore; 
• what am I going to make for dinner tonight; 
• why does everyone need to eat every damn night; 
• I wonder if toast is a substanial dinner (my family says no); 
• how many school lunches do I have to make until Layla finishes grade 12; 
• maybe I should ask Stephen if he would consider getting a second wife on the condition that she does all of the cooking and cleaning - I think I could be okay with that (in case you haven't realised yet I'm just kidding); 
• I need a holiday; 
• and then wondering when last I was happy and if I will ever feel happy again.
• What you think about before bed: About how much I love my bed, it is so comfortable, and then also all of the above plus more.

LAYER FOUR: WHAT’S BETTER? 

• Single or group dates: Let's get real, this completely doesn't apply. I'm married and we've been together for almost 11 years. I can't remember the last time I went on a date, single or otherwise. Rather ask me what I think about kid's birthday parties.
• To be loved or respected: I don't see why I'm I not allowed to expect both?
• Beauty or brains: What the hell kind of questions are these?
• Dogs or cats: Cats, but family is allergic to them, so dogs win by default.

LAYER FIVE: DO YOU.

• Lie: Usually when I don't want to hurt someone. P.S. Everyone lies. Actually that would make a great title for a book.
• Believe in yourself: Oh hell no. I am 34 and have no clue what I am doing with my life.
• Believe in love: I didn't for the longest time, and I didn't like who I was when I didn't. Now I do though and love (and I am not just talking about the romantic kind just to be clear) is everything.
• Want someone: Yes, someone to cook and clean for me.

LAYER SIX: EVER?

• Been on stage: Yes, and it was mostly terrible.
• Changed who you were to fit in: Every damn day.
  

LAYER SEVEN: FAVORITES

• Favorite color: There is no one favourite, but I am obsessed with all colours in the mint to turquoise range. I also love grey.
• Favorite animal: No, they're all pretty cool and interesting in their own way.
• Favorite movie: Strange Magic; Love Actually; and a whole other lot I can't remember the names of anymore (yes must totally be one of my favourites if I can't remember the title right?)
• Favorite show: I am going to assume they mean TV series, in which case hands down Friends and The Office (American version)
• Favorite book: Power of One by Bryce Courtenay

LAYER EIGHT: AGE

• Day your next birthday will be: The same day it is every year??? I am guessing they mean which day of the week, in which case it is a Monday,  awesome! But that is far away so I don't have to think about it for a while.
• How old will you be: Too old 35
• Does age matter: Now that I am old, not anymore.