Throughout the day I wait patiently and hopefully half dreading a second disappearance when night covers over the sky and again there is no confirmation or sign of Salmaan. He usually comes towards the evenings either after Maghrib or Ishaa salaah so once the clock struck 9 PM any thought of his arrival became null.
My message request for jelco needles sent earlier hasn’t been received and the call reaches voice-mail.
Is this it?
Here we are, swaying for five days between a complete and partial circulatory collapse while aid is bounced off from one side to the next.
Dad is wholly demoralized and convinced Salmaan has given up on me by displaying unreliability at a point in time when intervention is vital to prevent further shutdown from veins to organs.
The understandable argument he holds; if your schedule is going haywire and you cannot be present at the appointed or promised time, common courtesy is to inform us by calling or sending a brief message so we know we should try with another medical provider or even maybe send a peer in place, but don’t vanish from contact leaving us in limbo of the unknown.
My rationale is separated from parental emotion and focused on applying logic to Salmaans chaotic routine. If we place ourselves into his circumstances – imagine juggling your days and nights between helicopter shifts, road operations on ER24, along with playing a role in your fathers business, then family life and me ontop of all the above.
At the same time I can never discredit six months of sacrifice and the sterling service rendered to us at odd nightly hours in ramadhaan after taraaweeh.
I also understand the impossibility of being on track with messages and daily life demands because I myself cannot stay afloat with everything even if diarized and the same inattentive behavior reminds me of a brother who’s hands are always overloaded that he becomes inadvertently absent-minded without purposely directing ill-will.
If we ask him to collect medicine from the pharmacy we are lucky to recieve the medicine after a dozen reminders not because he doesn’t care or it wasn’t a priority, he is simply preoccupied.
If someone sends a parcel with him it will make tawaaf for days and weeks in the car 😂😂😂
Now the main question:
Are we dealing with a second version of my brothers scatterbrain or can we find a trace of truth in dads words and perhaps my heart finds it hard to believe or accept?
My mind is plagued by a myriad possibilities and presumable reasons over the disregard and silence.
Have the infusions become too much of a pressure by being a complex patient and has he therefore given up on me altogether or is it he’s own personal responsibilities that weigh too heavy that he cannot provide due attention to each one?
Upon seeing no headway other than more questions arising from tripling confusion mum sat praying and thinking as to who else will cooperate with profs direction on homecare but I told her please leave it. I am exhausted. If the word exhausted does justice as a description.
I’ve always relied on Allah’s unseen help so I’ll continue placing my reliance solely in him and if death strikes in the process then let it be. On the contrary and within my driven nature obviously not! I still want to create and breathe in the extraordinary moments of day-to-day life…
Oh rabb! Here I am at your door; gutted, confused, bewildered, lost, frustrated and above all, exhausted.
Oh rabb! Here I am at your door exhausted of fighting for the type of expertise most medical personnel do not facilitate for Dysautonomia patients.
Oh rabb! Here I am at your door desperate for help but exhausted to the extent of wanting to be alone and not hearing one more word.
Fighters do not quit. We create a mental resistance of pushing through and pushing through because we have to. We do not have an option of backing down when our right to medical aid reaches a stage where time is of utmost essence to our lives.
So we fight and cry and laugh and continue the cycle. We breathe, eat and sleep this rarely known disease but it becomes irrefutably frustrating when your physically impaired state meets neglect.
Fighters become exhausted but they do not quit
So rest then keep on going with your ambitious grit
Today I echo every chronic and rare patients deepest plea
Oh healthcare provider, please do not give up on me
Salmaan was unique in character and skill. My knowledge broadened on account of his education, manner of in person communication and medicinal administration. I became so accustomed to his professionalism at handling each call out that its hard adjusting to anyone less competent. Our lives improved significantly when he taught me about Plasmalyte B, J-loop, the different types of IV fluids, their purposes for each condition and plenty more.
While I demystify this short yet taxing string of events, occasionally my mind wanders…
Does the poem which took several weeks to compose still carry any meaningful value…