Sandcastles Of Hope

( an honest account) 

Thank you for travelling through this bumpy post with me. 

In the words of Emily Dickinson, ‘Hope is the thing with feathers , that perches in the soul, and sings the tune without the words, and never stops at all….’ 

In recent days, and even months, hope has been an elusive friend. As I’ve put my trust in medical professionals and gone along with their best advice and plan for me, it feels like every step, every intervention has been met with unforeseen difficulties and has even triggered new heart issues for me. If this were a board game, then the snakes have definitely outnumbered the ladders lately. 

I think back to 9 months ago after my first heart procedure was deemed to have been unsuccessful and I was experiencing increasing frequency of very symptomatic and prolonged episodes of heart arrhythmia. I was encouraged that there was ‘a way forward’ and that ‘things would get better’ and that ‘it’s hard to see that when in the midst of a difficult patch’. This gave me some hope. 

Since then, I’ve been through a 2 hour operation which I found pretty traumatic under light sedation. There were then unusual complications from that which required a further operation to remove parts of the device and replace and resite other parts. That operation was even more traumatic due to its close proximity in time to the initial device placement and also the fact that I was last on the list that day (hence anxiety climbed in the waiting) and the sedation during the op was a quarter of the amount given the first time. And then about a month after that, I developed acute chest pain deemed to be a heart attack and concurrent heart failure due to the heart being ‘stunned’ most likely through all the previous trauma it had undergone. 

I am now home from almost three weeks in hospital. Presently the medical management of my condition involves a higher dose of heart regulating medication which slows the heart right down and can drop the blood pressure very low. This also causes immense body fatigue such that I am barely able to function. I’ve been told it can take months or years to recover from the most recent event. 

My options are to continue on this medication or to undergo yet another operative heart procedure to try to subdue the rhythm issues more permanently. 

Given the fact that the recent heart issue was caused by immense trauma to my system, it does not feel particularly inviting nor sensible to put myself through that again right now. I’m not sure that my heart could take it. Yet to live what feels like this present shell of a life, largely in bed and in discomfort can feel very dark too. 

Distractions are minimal due to extreme fatigue and daily debilitating headaches. 

I know the mantras ‘ this too shall pass’ and ‘ tomorrow is another day’ and countless others meant to lift the spirits. I pray, practice gratitude and mindfulness and am well-versed in all the self help tools around nowadays. I see people get on with their lives and I’m glad for them but also sorrowful for my life put on hold upon hold in recent years. 

I’m thankful for family and friends but at times I feel like I’m sinking further and further away from being able to be part of their world. 

With each prospect of a better solution proposed by the medics, I built a kind of sandcastle of hope ahead, but lately hope feels like it’s slipping through my fingers like sand dried out, unable to hold its shape anymore. 

I say all this not to engender sympathy nor to attribute blame- none of this is anyone’s fault. Also, I remind myself that I have SURVIVED all of the aforementioned experiences. I’m grateful for that. I know too that other people have not been so lucky. I simply want to tell my story honestly and paint a realistic picture of how life has unfolded lately. 

So, what can I do with all this? I could give up on hope – but that doesn’t get me anywhere. Or I could see hope as a rope to cling to -a lifeline- trusting, yet not knowing where it will take me next. So much of life is ‘not knowing’. And we are called to trust. I have trusted in the medical advice and decisions made, and have also self-advocated when necessary and am thankful that I still have the medical intelligence and capacity to do that. I also trust in God’s greater holding of my life. 

I have been carried and held by dedicated nurses during very difficult times and I have seen so much goodness and care along the way. 

This reminds me of the verse, ‘surely goodness and loving kindness will follow me all the days of my life’. It has, and I trust it will continue to do so. I am thankful for that assurance. 

And I choose to hold onto Hope. A hope for a future in the here and now with those I love. As the Psalmist says ‘ I remain confident of this: I will see the goodness of God in the land of the living. Wait for God. Be strong and take heart and wait for God.’ 

So I wait, in my fragile strength with an open heart. And I let Hope rest and nest again within my soul, singing its perpetual tune, with lyrics I do not know nor need to understand.