15/08/2021
At the break of dawn I awaken to a flashing image that repeatedly makes me see myself on that Tuesday morning slowly walking out of our home towards the car with trepidation, glancing back at a teary-eyed mum and bidding her farewell almost as if to say I don’t know if or in what condition you might find me after…
Hastily I avert the image clouding my vision but the stronger it replays. I jolt my body to clear the scene masking my senses but the image of mums sorrow filled state does not vanish in the least. She didn’t look at me in this manner since talk of the port began so where is this picture coming from I wonder in bewilderment?!
I sit motionless on the prayer mat facing qiblah; tugging onto Asmaa-u-Allah-il-Husnaa and pleading from the deepest recesses of my heart, incapable of uttering one verbal prayer as streams of salty water silently flow down my frore cheeks uncontrollably
Ya rabb! You know my daring nature. You know I take intrepid leaps. You know the word fearsome doesn’t generally have a share in my name. You know I am upbeat about making any plan succeed even when favorable results seem far-fetched so why?
Please tell me why am I being engulfed by uncertainty and dread? Ya Allah! Please give me an answer, I don’t know what to say, I don’t know what to do and I dont have much time? The doctors at Charlotte Maxeke do not understand and will not understand.
Oh Allah only you see what others don’t and you can hear what others won’t
Oh Allah I entrust over to you every perturbed feeling that has glued itself in my heart
Oh Allah I am leaving every person and place aside trusting you to place good in what I finally decide…
Inaudibly distraught prayers flutter their way upwards through the cloud-covered grey sky and a swift response appears in the form of words from a nasheed that suddenly ring in my ears without having it downloaded among my audio files or having heard all the lyrics. Previously I only listened to the beginning snippet on a friend’s whatsapp status, yet now the words play clearly into my ears loud and strong:
Viewing the lyrics as nothing less than a reply to my plea of Allah you are السميع, I search for the nasheed quickly and download it.
Yes I am seeing all the salty water flowing out of your red puffy eyes
And your intuition is not telling any sort of delusion or lies
My listening is interrupted by a surprise visit from a close friend of mom who’s presence is welcomed with delight. Before I make way to greet mum tells her the entire dilemma and her tender heart is overcome with emotion. When we sit side by side, she takes my hand and envelopes it gently into her soft hand.
Unbidden tears flow down her smooth lustrous skin and in a compassionate tone she tells me about a senior scholar (Ml Abdul Hameed Saheb) who advised her to recite اهدنا الصراط المستقيم seven times when facing uncertainty regarding a particular decision. After speaking further and offering abundant duaas she leaves.
From being in a limp and slowgoing mode the past two days, straightaway I am fueled to pull myself up and help mum prepare supper while acting on the above advice and preparing an answer for Dr Tawriq in my mind…
السلام عليكم و رحمة الله و بركاته
Respected Doctor Tawriq
It’s Khadeeja Munchi here – we met on Thursday at Helen Joseph and I was scheduled to come in tomorrow to Charlotte for pre-admission work..
Unfortunately my istikharah about having the Port-A-Cath performed specifically at Charlotte has come out quite strongly in the negative so I’ve decided to postpone it until a time when my istikharah is clearer and positive. Not doubtful and unclear as now.
I am aware you only had my best interest at heart because arranging it at Charlotte would’ve saved us major expense so I truly appreciate all your time, effort, and humbly request you to please find it in your heart to forgive me for the turnover regarding this decision.
The more istikharah I made over a few concerns, the more negative it became without outside influence and before consulting with rare disease advocate members from my local support groups.
I’d still like to have the Port-A-Cath done but in a facility where there is strict and thorough postoperative observation because of the blood pressure instability and anesthesia protocol that’s involved with my type of Dysautonomia.
Previously I had a cardiac catheterization done and with mild conscious sublingual sedation I became hypotensive (not the first instance), while nurses remained nonchalant and in the least bit vigilant. Many times I also witnessed them disregarding doctors instructions which is a cause for concern.
In view of the above and as an exception to the norm, my postoperative monitoring will in all probability not be restricted by an hour or two.
Also, the general guideline and practice for us being susceptible and immuno-compromised is reverse barrier nursing which Charlotte or other state public services cannot facilitate understandably. It is however, the one and only way some of us can tolerate being in a hospital setting without picking up any germ or infection.
Not everyone understands my susceptibility very easily and I do not make them blameworthy because there is little to no training or teaching of autonomic sciences in most of South Africa. There is minimal recognition of Dysautonomia and the way it presents with compromised immunity on different levels for each individual – alike our fingerprints.
I really do not intend being difficult, nor am I fussy by nature or overly anxious about nothing.. I’m usually an adaptive person but because my istikharah is giving a strong indication in the negative after past experiences over the six years of living with these illnesses, I can’t take further risks of being wheeled after theatre into a room mixed with other ill patients.
In my home environment I have to isolate from my own family members at times because I pick up germs from them easily and therefore much more vulnerable to outside exposure.
My other healthcare providers also adopt utmost precaution in this regard and never mingle me with people in waiting areas for safety sake keeping in mind the history.
So Insha-Allah I’d like to please postpone the procedure until a time when Allah through his encompassing mercy opens a better way where reverse barrier nursing can be guaranteed somewhere Insha-Allah.
(Knowing my body well enough and all it has battled, I know my immune system is not strong enough to fight off invaders as a healthy person can)
I sincerely request your forgiveness once again and if possible, would still like you to be my future vascular surgeon بإذن الله
Past midnight when I am fully certain and set on the tone, explanation and decision, precisely at 2:22 AM I tap send – knowing he will see the change of decision by early morning which is fine and then I’ll deal with whatever the response may be…
Swimming Through The Waves 