265 ~ A successful meeting ~

When your world around becomes heavily clouded with grey

Look at how the sky beautifully changes color throughout the day

One day the sun may rise or set over you providing long sought relief

So let hope from it’s light anchor your soul in unwavering belief

And hold onto the promise “after hardship comes double ease”

From الفتاح – the one who opens unexpected doors of bounties


Driving along the same lanes to meet the Intensivist brought flashbacks of my former hospital memoirs scrawled onto the pages of two thick journals where vivid memories of appointments lay at the back of a shelf.. A place I seldom visit because the past is where it belongs. After healing from the trauma I look back with tangled emotions of empathy for those who have no other alternate option, and gratitude for personally having come this far…

How the traces of inescapable tears were removed in a way no one would guess one drop was even there, let alone torrents. Then promise myself – if the next one results in the same / similar fashion I will not let it get me down. I will put it right behind and move on without being affected emotionally. I’d even look at myself in the mirror before walking out and say ‘you can do this even if they disbelieve or dismiss you again, stay strong’

But the overpowering impact of disbelief in a rare condition doesn’t work that way.

Stay strong are mere hollow words that have no effect when disappointment slams you in the face again.

Stay strong denies the natural human need for expressing emotions of sadness or grief and thereby results in more mental disturbance that can impact the physical body.

Stay strong is meaningless because the minute your reality is refuted, every positive word fades away into a faraway distance. Any form of light momentarily becomes nonexistent, and every ounce of strength within crumbles…

Stay human I’d say. The human body cannot be one sided. There has to be a balance of positive and negative energy in the body. In some people one flow remains more dominant. Either way, you have to feel in order to heal.

This time however, strength was ignited when Dr seated us into his room with a warm welcome. I was slotted two spaces incase the time was not sufficient. After a few minutes of general talk he got onto the topic at hand and discussed how confusing Dysautonomia can be due to the overlapping nature of symptoms that mimic other conditions.

We discussed medication and a few others were suggested. Dr also gave us insight of a presentation he conducted in Brussels on microbiome and balancing the gut to manage disease based on the following:

“All Disease Begins in The Gut” – Hippocrates, 460 BC

“The stomach is the well of the body and the veins drink from it. If it is healthy, the veins pass on good health, if it is sick the veins pass on poison” – Prophet Muhammad (PBUH), 630 AD

Thereafter we voiced our concerns about not having a proper emergency plan. Dr understood the whole situation and readily connected me to a network of paramedics who work in different areas under his guidance. This network was initiated when Covid-19 began and Dr realised patients needed to be treated at home as far as possible. These are qualified medics who have been trained to do ICU setups at home. If uncertain about anything they ring Dr and ask his advice regarding so and so patient.

A praiseworthy initiative indeed!

The arrangement was coordinated smoothly with no hassle that it boggled my mind as to why others made the matter more twisted than it actually was.

In conclusion; Dr stated he is completely new to Dysautonomia / POTS related matters but open to learning and listening in order to avail himself for whatever service may be required. He also accepted my copy of The Dysautonomia Project book 👏

Our meeting terminated successfully and I stepped out jubilant, in total awe at his humility.

I said it once before and I’ll say it again

A comfort for us when in deep pain

سيجعل الله بعد عسر يسرا

Surely Allah’s word never fails

His promise always prevails

انه كان وعده مأتيا

“Surely his promise shall come to pass

It sounded somewhat surreal to think we had finally emerged victorious from the other side of a five year battle.

While the unknown had me humming blissful praises of triumph contemplating over the goodness that had descended in response to our duaas and lengthy search.

Little had I suspected; this divine plan had fallen into perfect place for an unprecedented crisis that loomed over and set to occur on one fateful Friday not long after…

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