I wrote this almost two years ago. Yet again I am the impatient inpatient. I think this piece deserves a voice   

I am again the Impatient Inpatient.  ‘A fall, three, pneumonia and an epistaxis’…. if I added the words …. ‘went into a bar and….’  it could be the opening line to the most obscure joke in the world. But no, this is not the opening line to a joke. These words represent a summary of my health adventures for the last 6 or so weeks.

Weekends in hospital are always quiet.  Mine was punctuated by visits from old friends and beautiful flowers from beautiful people.  Attached to the flowers is a helium balloon with the words ‘Get Well’ cursively written in bold black print.   It’s not ‘Get Well Soon’.  It is just ‘Get Well’. I have always been one for doing as I’m told so that is my plan…. to ‘get well’.  Not sure what ‘getting well’ means yet but let the games begin……

I wrote the following blog some time back (September 2019) and never posted it.  After a weekend spent contemplating the power of my ocean, it seemed an appropriate post for today……

I received some very positive comments about my first blog and my new website. One comment has caused me to reflect.  The comment was simply, ‘you are the strongest woman I know’. When I think about the word ‘strongest’, the image that comes to my mind is one of someone who is able to carry great weight.  A weightlifter, lifting twice their body weight; someone with sandbags on their backs ready to throw them down to prevent the swirling river waters overflowing their banks.  It’s an image of physical strength. But what was the person who called me the ‘strongest’ referring to??  Clearly, I am no weightlifter and carrying a sandbag on my back; well maybe one of those sandbags they use as a door weight.  So, my physical strength was not what they were referring to.  This started me thinking about emotional strength and what it actually means. 

What makes you emotionally strong? After pondering this for a few days I’ve realised that for me it is determination. Determination … to never give up.  Quoting Rachel Remin, from her book Kitchen Table Wisdom……‘to show up and meet with whatever is there’. Perhaps it is not just facing what life throws at you but more how we face what life throws at us, how we show up and meet with whatever is there.

When I initially became unwell, it took some time for the medical team at the hospital I was being treated at to work out what was wrong with me.  Hypo-deductive reasoning at its best.  Ruling out the most likely until what you are left with must be the truth.  The truth for me was bronchiolitis obliterans – a fatal lung disease.  They estimated that I had a year to live. I was 19. Too sick to go to the UK for a transplant.  No lung transplants in Australia yet, only palliative treatments.  This was 1987.  It was a different time in medical care and information delivery.  

I’d been in hospital a couple of weeks, and one morning was called into a meeting with one of the doctors, and some of the unit’s nurses.  They sat me down and started to explain what they thought was wrong, or more appropriately, what had happened to my lungs.  They used words like ‘limited physical capacity’, ‘reduced lung function’, ‘chronic chest infections’ and then the words that still to this day feel like a slap across my face ……’shortened life expectancy’.  What on earth does that mean to a 19 year old. ‘OK,  so I’ll live to 60 then instead of 80’ I thought.  I was bargaining.  At 19, 60 is forever.  Then more words… ‘your breathing will not improve’ and ‘your condition will continue to deteriorate’.  My breathing was very difficult at this point.  25% lung function is hard work, you are breathless doing everything. It was very hard to imagine things being worse.

After hearing this news,  I remember going downstairs in the hospital from the 7th floor respiratory ward to meet my mum who was coming in to see me – as she did every day.  I had been ‘ emotionally strong’ in the meeting.  Laughing at the joke that being diagnosed with such a rare lung disease was like winning the lottery but not getting any money. Nodding intently as though I understood the true ramifications of the information being delivered to me. So by the time I left the ward, heading for the lift, the tears were literally about to explode out of my eyes.  I remember standing, silently sobbing in the lift. I walked down the corridor to the front of the hospital in a daze, dissociated.  ‘What does this mean?’, ‘What have they just told me?’  The optimist in me saying ‘it’s Ok, by the time you get to 60 they will have found a cure.’  But the realist in me dissecting every word that was said to me in that meeting –  ‘rare’, ‘lucky to meet anyone with the same condition’, ‘odds of getting it like winning tattslotto’. 

I was clearly distressed standing in a busy hospital foyer.  A little girl, looking for her mum. I remember being surprised when a gentle hand touched my shoulder.  As I turned around a ‘kind stranger’ ushered me towards a seat.  They sat next to me and said, `You don’t have to tell me what’s happened but let’s just sit here a while.’  They seem genderless as I relfect back now.  And so we sat and waited for my mum to arrive.  After a while, I told my kind stranger what had just been said to me and they held my hand, reflecting back ‘that must have been very hard to take in’. 

It seemed like both forever and a second as we sat there waiting for my mum. There was no deep and meaningful conversation – just two people sitting on a bench in a busy hospital corridor, waiting.  I saw the yellow van my mother was driving go past the front of the hospital and tried to dismiss my kind stranger.  My kind stranger was not going to be dismissed. They stayed, now a presence in the background, as my Mum came through the hospital’s front door and rushed towards me. There were no words exchanged between us – I simply melted into the comfort of my mum’s outstretched arms.  

After a few moments, my kind stranger told my mother that I was upset as I’d been told some ‘news’. I’m not sure if mum already knew but she and my kind stranger ushered me back towards the bench seat in the corridor.   I proceeded to recount to my mother the story told to me earlier in the day….’shortened life expectancy’, ‘limited lung capacity’. I was watching the reactions on my mother’s  face  so intently that I did not see my kind stranger leave.  It was only after I stopped telling mum the story, I realised that they were gone.  Panic pulsed through my veins. I had to thank them.  I had to tell them what they had done to help a terrified 19 year old cope with the worst day of their life.  But they were gone, disappeared into the swirling crowd of the foyer of the hospital. I knew I would never find them to thank them. I wanted to shout out – ‘kind stranger come back’, ‘stop’, ‘don’t go’, ‘I need to repay your kindness’. But time passed so quickly that before I could do any of those things my kind stranger had vanished.

So publically, now, I say thank you to my kind stranger.  Publically, I say thank you to all the kind strangers out there.  I say thank you for those random acts of kindness between two human beings.  Please don’t underestimate what you do to help someone when they cannot help themselves.  Being able to sit with someone in a time of extreme suffering – to bear witness to their pain with no attempt to fix or minimise the suffering is the basis of true human connectedness.

Being told you have a ‘shortened life expectancy’ sets wheels in motion.  My father through some contacts, received a late night call from my treating doctor.  My dad reeling from what the doctor was telling him, asked the question that one should only ask if you are ready to hear the answer.  The problem is that you don’t know if you are ready for what you might hear until after you have asked the question, been told the answer and psychologically spiraled out of control. 

So this is what happened to my dad –  he asked the doctor …. ‘well she’s not going to die, is she?’  Now the doctor has to tell him the truth. Anything else would be unethical.  So he did, he told my dad the truth.  He told my dad that his little girl had a rare but universally fatal lung disease called Bronchiolitis Obliterans.  He told him that her treatment options were limited, and that in all likelihood his beautiful baby had less than a year to live. My dad put down the phone and collapsed onto the bed hysterically crying.  I was still in hospital; oblivious to what was going on in my parent’s bedroom. So, my parent’s shared a secret no parent should share. And they kept the secret well. 

I, however, had not received the amended script where I had a year to live.  I was still reading the ‘shortened life expectancy’ version.  I must have been home a week or so when one morning after going on the nebulizer with no real impact  on my breathing, I began to tell my parent’s that the team at the hospital must be mad as I felt so unwell, and could not breathe despite these stupid drugs.  It was then, now completely backed into a corner,  that my parents had to tell me what ‘shortened life expectancy’ actually meant.  That it was not living to 50 or 60. They had to tell me that my medical team thought I had less than a year to live, that no one had lived longer than 6 years with this condition and I’d had it for three years at this point.  That my lung function would continue to decline, I’d get multiple chest infections that would further reduce my lung function, that at some point I would become oxygen dependant, bedriden and that eventually this horrid disease would take my life. 

I often think about that Tuesday morning in the August of 1987 and where my response to my parent’s words came from.  I simply said, ‘Really, is that what they think. Well, they have not reckoned with me, have they!”  (I don’t like using exclamation points but I think that statement qualifies for one).  I think that statement, ‘They have not reckoned with me’ epitomises determination.  Determination to take control of the situation – to do whatever you can to change it. Determination to just keep going. Words from one of my favourite children’s books, The Little Engine that Could, come to mind, ‘I think I can, I think I can’.  Or from the mouths of one of my beautiful god children, ‘You can do it,  Aunty Jane’. These statements motivate me to keep going

So what did the determined 19 year me decide to do in this situation?  Take control of what I could control – I decided to get fit.  My thinking was naive as I look back now but I thought if I could use 100% of the 25% lung function they estimated  I had left, I would be OK. So onto the exercise bike I would go.  Mum would take my pulse; 180….’don’t push any harder,’ she would say.  I would turn a lovely shade of blue.  3 mins, then 4, then 5, then10, 20 and in the end I could peddle away for an hour – no resistance of course but my fitness improved.  My cousin, aged 9 at the time, would pretend to be a tree, arms waving as she ran past, over and over again.  I don’t think she will ever know what a difference that made.  Again motivating me to keep going.  And I kept going. I was 21 when I started waiting for transplant in the first cohort of patients listed at the Alfred Hospital in Melbourne.  I waited four years and was 25 when I was transplanted.  Waiting was very difficult – life on hold.  Again determined to keep going: they will call soon with a suitable donor.  At times I thought they were just humouring me and that a donor was never coming.  But early one Monday morning the call came.  It’s always hard to accept that in order for me to live someone else’s life has been cut short but I am forever grateful to my donor family for making the most difficult decision that any family can make. Determination to make it through the surgery. To be able to ‘pay forward’ this most amazing gift.   Not easy by any means but I was ready to live and live I have. Hopefully I have done my donor proud.

This is not to say that life almost 26 years post lung transplant has been a walk in the park, but I would do it again in a heartbeat. I have more joy in my life than I do suffering. But please do not underestimate the suffering. There are days when my ‘resilience wanes’.  A patient of mine (Tricia) who was a writer, wrote in a poem of the same name, about the difficulties of managing chronic illness. 

She added an extra line to the poem after one of our sessions.  

The words of a friend,  sliced through my fear. 

Sometimes resilience is re-found by being rather than doing, She said*

I’ve reflected on these words time and time again. ‘The words of a friend’.  So perhaps determination is not as self focused as I thought. The self talk that happens in my head with words like ‘I can do this’ can be powerful; but that line in the poem ‘The words of a friend’ suggest that it may not be determination alone that gets us through the difficult times in life.  One of my favourite quotes reads 

Individually we are one drop, but together we are an ocean 

I am lucky to be supported by an ocean, a diverse and beautiful ocean. I know there are many people who may have limited or no social support and I feel for them and how much harder life’s challenges are to cope with.  I had a patient once who asked for a hug at the end of the session as she had not touched another human for over a week.  The depth of the hug will stay with me forever.

So what to make of my ramblings?  What are my parting words for today? Well determination is not always a solo show, there are often people in the wings or in my case a chorus line of dancers, each with their role supporting me as I bumble my way forward. Making mistakes and taking wrong turns.  Falling over but dragging myself up and finding another way, with learnings of what went wrong and with determination to keep going. Knowing that tomorrow the sun will come up and there will be another sunrise.  Till next time…..

*Tricia died in 2016 and her family have given me permission to talk about her and to use her poetry.  Her beautiful words can be found here https://triciabertram.wordpress.com/author/triciabertram/