(I must admit that sometimes I honestly feel as if I sound like a stale or broken tape recorder repeating the same misunderstood theories again and again. Sometimes being an advocate becomes utterly exhausting so I unplug for a while. Sometimes in that state of exhaustion you feel like your voice is falling on deaf ears. But then your spirit is revived when you remember, and speak to one who is السميع – The All-Hearing.
Advocacy is also a course to which I am strongly attached and passionate about. After all, the outlook of our future depends on what we decide to do with the current challenges we are confronted with. We can remain stuck in the same place and drown in self pity or strive for new and better solutions to remove the obstacles.
The repetition and racket I make cannot be stopped and in actual fact, has to be amplified, because we do not have sufficient voices and hands working together for a change in pivotal sectors.
Also, I have only addressed this specific topic twice in the beginning of the blog. Chapter 10 & chapter 34. So it needs to be refreshed. August is the month which calls for extra action.
And when unsought words flash infront, there has to be reason..
Now what am I on about??
Kindly read on to find out…
Many people assume we’re putting up a huge pretence
Little do they comprehend, autonomic dysfunction can be so intense
Many Dr’s presume we’re showcasing a masquerade
If only they can see, we’re genuinely searching for aid
If just for a short time, they were also made to feel
And realise how sometimes, we still crave a good meal
What do they think we can possibly gain from making a “show”?
Overpowering nausea, pain, one symptom after another in tow
To be dependant on feeding tubes, and have countless procedures done
As if it’s a joy ride filled with plenty of eagerness, excitement and fun
We are not “drug” addicts
Now are we psychopathics
The battle inside to keep food down is more real than can be imagined
But the lack of knowledge and help causes us to become saddened
By right, every person should be granted medical help
We shouldn’t have to incessantly beg or lay and yelp
With divine assistance, as long as I am alive I will continue to speak
On behalf of all who are not receiving the life saving measures they seek
A dire change needs to ensue
Advocation has to continue
Strong and confident, loud and clear, gentle but bold
For we, cannot allow neglect to slip by, untold
The facts have to be dissected and made known
So our bodies do not comprise of only skin and bone
How many are emaciated and on the brink of death due to poor nutrition
Because there is insufficient awareness and expertise for their condition
I write with a burning heart, oh lord! Let the pleas we make
Be a cause for the eyes of medical personnel to awake
Go green for a life threatening illness, termed Gastroparesis
It is invisible, unfunded, and dismissed, yet undeniably serious
To put Gastroparesis under the spotlight, we go green
The challenges associated, need to be identified and seen
We’ve become masters at tackling the task
And wearing the usual “I am okay” mask
“You don’t look sick” because the outward changes are only a tad bit
But the “fight for food” requires an enormous amount of underestimated grit
Kudos to our warriors who overcome the challenges of a paralyzed stomach and never quit
Kudos to each of you who move carrying grace
In spite of the harsh realities you constantly face
Nonetheless, we do not ask for pity, only participation and prayer
For these, are 2 combined forces that ignite a revolutionary power!
Before August concludes, we kindly request you to join us in a 3 day “go green” movement. Awareness matters. One picture & one color elicits a question. Few words from mouth to mouth. Change begins by the efforts of one person. From one seed, a flower sprouts, and then over time we reap the fruits of a blossoming plantation.
Your efforts are not meager and they never go to waste. For our generous lord wastes not, the reward of the good doers.
There is no specific thing to do. We’re leaving it open so supporters can do whatever is suitable and easier for them. Sharing any information, or wearing green in honor of our fighters. Anything and everything counts! It certainly does!
Thank you from the recesses of our hearts 💚💚💚
May Allah reward you for your sabr, ease your sufferings and grant you Aafiyah. Aameen💖
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