82 ~ Code of entry ~

Updated.

Assalaamu Alaikum / Hi

A warm welcome to new readers. I appreciate your time spent reading my never ending ramblings lol.

This is a note for the termination of Weblog 1 – from the beginning of my journey concluding with hospital memoirs.

If there are suggestions, questions, stories, valuable information or any other topics you’d like me to address, please feel free to send an email or contact me.

Longer posts? Shorter posts?

Is the medical awareness too “boring” or “monotonous”?

(Even though, its kept as brief as possible. Our purpose here is to raise awareness about medical misconceptions via my experiences, not only to relate a story about me)

Feedback of your honest opinion will be most appreciated.

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To wrap, there are a few points I wish to digress on.

💠 The nature of posts are dissected onto 3 narrative levels:

1) Easy – particularly those that are fresh

2) Medium – Episodes of the recent past.

3) Difficult – Those that transpired in 2017 – specifically the last day of my hospital discharge & follow ups.

At this juncture of 2017 ensembling a beggar wandering around aimlessly, trying to figure out where I actually belonged, whilst the destruction of a shaky foundation was being replaced with a sturdier building leaving me temporarily homeless – clueless of my own body.

Destruction of material love being done away with.. Breaking, knocking, building, hammering. Decoration then began in the forms of faith, submission, trust & relationships brimming with quality. Not quantity.

Subsequently, the skies rained, hailed & thundered. But the crops that flourished after a lengthy period left me stunned.

I don’t look at the past except to derive morals & relate certain incidents for the same purpose.

So 2 weeks ago, to summarize the first +- 10 months of 2017, I flipped back the pages of a journal..

Navigating out of the harrowed stages demanded abundant time

Thereafter I realised every encounter will be worthwhile

Including so many deemed vile.

I am assigned to tow a fine line

Between rhythms of death and life.

For, my birth and name was predestined

In a year numbering 2 nines

To formulate it’s first rhyme.

Rumi also qoutes beautfully:

Whatever happens to you, don’t fall in despair. Even if all the doors are closed, a secret path with be there for you that no one knows. You can’t see it but so many paradises are at the end of this path. Be grateful! It is easy to thank after obtaining what you want, thank before having what you want.

For instance, a trip anticipated;

If you’re flying or driving somewhere far for a holiday or whatever reason, the journey can be really daunting sometimes. There might be gravel, winding, roads & bumps.

If it’s a plane, turbulence can occur, flight delays etc.

Some experience motion sickness, elevated pain levels, lack of sleep & a lot more. The journey is not free of discomfort, but we bear it patiently & happily because our gaze & heart is set on the end result – the destination & activities included.

The beach, the hotel, the camp, the sight seeing, the spottings, exhilarating, enthralling moments. Any type of unpleasantness experienced along transforms into sheer bliss.

Another similarity is of a student who sacrifices hours of sleep studying, writing lengthy papers in an examination room, persisting for the graduation day, the moment he / she is crowned with the certificate & 🎓 of a successful completion.

That is the reality of the challenges of this world in comparison to the moment a believer will be told to enter Paradise.

If health is a bounty then illness becomes a mercy

When we comprehend who is the writer of destiny

Behind adversity is a lofty paradise

Its width resembling the earth & skies.

Code of entry –

Trust the plan patiently

Even when the weather is stormy

And your footing becomes shaky.

Trials contain surprises concealed

Yet to be revealed and received

However, having mentioned the goodness reserved, there is a major suffering overlooked.

The part where many walk around us with glass shoes. Sensitivity associated with our delicate bodies is understood, but silence is piercing.

1 evening not long ago, I thought about the disinterest from outsiders. How many become tired of reading regarding these topics or push it aside altogether.

Some are occupied with their own lives. We, on the other hand don’t want to be seen as a nuisance, disturbance or mistaken as complaining.

We don’t want to speak to anyone who would start with a “be grateful lecture…… ” Because expressing natural feelings is not tantamount to ingratitude.

Talking to strangers or someone we’re not closely affiliated with, is not every person’s cup of tea.

Therefore, many ill people & even family members for that matter, are left to deal with their feelings alone due to disinterest from those around.

The times struggled most, are unseen. Only our creator was, is & will always be there, never leaving us alone. Personally I am extremely grateful for the opportunity described as

Me & my maker – Wholly.

A lending ear & outstretched hand can spare self inflicted harm as I’ve witnessed.

On stark nights
Heavily we fight

Look left or right?
Few humans in sight

To share the plight
So I write and write

To those who spread rumors claiming we’re fakers, whereas we’re masters at the pretense of feeling well:

Doubt my words as much as you like
One day it might revolt back to bite.

After writing that, a short while later, I stared speechless for a few minutes when the phone beeped with a message. Emphasizing, my thoughts were of utmost importance & no simple act of kindness should be underestimated.

“I’m so overwhelmed at the pics and message you posted pertaining to SJS. I can’t express in words how much they mean to me 🌷🌷🌷 most people i know, don’t comment or say much. While i understand fully i also feel disheartened. Unless an illness affects you closely, nothing changes in this cruel world!”

(A chapter will be dedicated to SJS.)

Loss of health, wealth or life vacates the heart further from short term entities. Being hauled from things & people we’re attached to, is bitter, but the replacements sent forth thereafter, will always make us happier.

(Image shared from diary of daeea)

Absorbed in this world you’ve made it your burden. Rise above this world. There is another vision.

Rumi.

My disease type is rare, support from medical personnel is rare, the suffering caused by being entirely rare is hard but an undoubted blessing…….to me. In many ways most will not understand.

Those who care

To be aware,

There, & share

Are so rare.

Last points to address;

1) We are encouraged to maintain hope & good thoughts regarding our lord, but we are also urged not to entertain lots of hope regarding the distant future.

We are advised to grab each day as if it’s our last, with balance, not in a morbid state. Yet those who do, are misunderstood as being negative.

Sad to see how distorted perspectives have evolved.

2) Because people assume plenty notions regarding our situations, a little piece of advice to share that I remind myself of as well.

Often, tongues become knives that slice wrong places, later regretted.

Think & consider before pulling the “trigger”

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Up to this point, I hope you’ve benefited reading the accounts of my day to day “plays” filled with ALL SORTS.

Stay tuned for Weblog 2

The construction hasn’t ended

The main planting has just begun

And it’s a season of heavy rains!

Shukran & thank you as always for the support 🌺🌹💐🌸🌷