Be frank and voice the matter even if it appears to be raw
Do not allow anyone to deter you from having a roar!
Two & a half months ago I received the following message from a beautiful lady who’s amazing niece was also afflicted with a rare disease.
She has a mind blowing, mesmerizing story!
(I say beautiful, because her heart is such, even though I don’t know what she looks like. That’s irrelevant)
The WhatsApp chat then followed as:
[01/30, 23:58] K: About sharing my experiences.. Some parts are easier while others are quite tough having to open up so much… Not always easy but definitely necessary!
Alhamdulillah the Almighty gives me the strength & courage to be open & frank about it
[01/30, 23:59] K: I also feel all these matters are buried away. People are hush hush around it.. It’s about time we connect on deeper levels to make a difference & help others… Let our warriors be heard & seen. They matter.
And sadly, it’s an often witnessed case.. Due to the lack of support or people who are bashed for voicing what they are undergoing… It results in suicide.
[01/31, 07:59] A: This is soooo true.
We need to put it out there.
Also people only know “cancer” etc… no sympathy for anything else 😥 we need to change this
Sharing some of our experiences is not easy
But for the purpose of enlightening, it is necessary
The fearless roar I possess now, took a lengthy period to emit.
During the initial stages of being ill, I was confused. I didn’t have answers to what was happening. I felt lost like a total foreigner ambling around, speaking a language that was alien.
No one could relate to me nor could I relate to anyone. No professional could simply “get” what I was undergoing. I would sleep most of the time possible, because it was my only escape from the pain.
Due to the other famous falsified notions and “side effects” attached to chronic illness. Such as attention seeking etc.
It took me 3 months since the onset of my symptoms and first partially correct diagnosis, to begin using a phone again.
Only then I searched for support pages and groups to:
🔹Find my clan
🔹Slowly restore a sense of power, and control to steer myself onto a new direction in life.
After much hesitation, it took me 5 months to post a picture on Instagram. A picture that illustrated what “neuropathic pain feels like”, for healthy people to understand..
I realised that keeping myself withdrawn would not help in any way. It would only make matters worse for family members and people who were truly trying to assist me.
How can I expect to receive proper support if I do not give them an insight of what I feel, whilst they are willing to learn…?!
Pictures made a tremendous difference. They were able to acquire a better idea of what I was undergoing..
However, that picture was later deleted when rumors circulated that I posted it to seek attention, after few friends sincerely commented with prayers for recovery.
Since that incident blew out of proportion, I do thorough background checks when accepting follow requests on my personal accounts.
I do not seek a large amount of followers.
Quality over quantity always.
It is my right to have freedom on the grounds I share my experiences, feelings and thoughts. I do not need camera surveillance. Nor tittle tattle.
Until recent, I share a lot on Instagram since it became a “safer place”. There’s no one to scrutinize posts out of context, or people searching to spread juicy gossip.
It took me 20 months to commence the blog when I crashed onto rock bottom after I reached a breaking point of rejection from the medical fraternity.
👆 The reason why I continously remind my own self and encourage others to let ourselves seek purpose from the storms that hail upon us. We do not know what types of gardens will grow and blossom as a result thereof. Firstly, for the benefit of ourselves and others.
After commencing the blog, I kept it private and was extremely weary with who I shared the links. Reservations that stemmed from the consequences of being ridiculed.
As I continued building a momentum of confidence..
It took me 3 years to finally post statuses on Whatsapp. This was also prompted by requests from many people who are not on IG.
I’ve condensed this history to remind newcomers; with the passing of time, you will find your way. The points to help you find your way are highlighted here and throughout the blog.
Keep in mind, the “loud” & carefree K you see in me now, is not the person I was 3 years ago. From the one who had no voice to whisper, let alone echo.
Time and support connected to patience, instilled and reinforced my willpower.
The strength you see is an endowment from the result of my suffering.
Strength does not come overnight.
It does not just happen.
It is a constant effort.
It is repeatedly built higher and stronger after each knock.
“And man has been created weak”
Strength desecends from above.
Strength is not mines to claim.
Without the Almighty, I am nothing.
Likewise with patience. Prophet Ishmael (peace be upon him) said:
“If God wills, I will be from among the patient ones”
When illness strikes, a person is completely uprooted & floats in unknown realms.
We undergo a lengthy process of effort in order to regain a sense of direction, establish self esteem and obtain the courage to begin anew.
People hold back due to an expected backlash & fear of reaction from a vast number of ignorant individuals. Is it fair to say we live in a cruel and ableist society where derision is bred and fed?
Society needs to be educated.
I fulfill my responsibility to help dispel incorrect ideologies. Thereafter, I am nonchalant about the heartless who aren’t interested, or who’s nature is to be critical about everything.
At some stage I reached a point where general negative opinions do not phaze me out. If critiscm comes in, I analyze and ascertain if it’s useful. If not, hurl it in the trash.
If there’s a valid basis to feel hurt I do so, then move on.
Cruel comments threw me down in the dumps a lot. But, our lives are extremely precious and short to waste the slightest bit of time on people and things that do not matter.
This is by far one of the most important and comprehensive morals I derived from life threatening illnesses.