Sickle, strong and sassy @50

I am a non-conformist.

I would usually not do what most people are doing.

I would often take the narrow and difficult road when many others scramble for the broad and easy.

To balance this out, God granted me a condition, sickle-cell disease (SCD).

There have been highlights with this illness, the constant hospital visits and admissions.

Rat in mattress

I still remember an occasion in the late 70s or early 80s, on one of the admissions at the 37 Military Hospital.

How a movement in the hospital mattress, when being coaxed by my indefatigable mum to eat rice and garden egg stew (served by the hospital, but which was a strange combination for me) resulted in me catapulting my frail self into the open arms of my mother with screams and squeals.

Thankfully, she had also noticed the movement and was ready to grab me!

The hospital staff later found a rat in the mattress and killed it.

Those were the revolutionary times and things were difficult across the country and in hospitals, with obsolete equipment, beds and mattresses, etc.

My undaunted mum was always by my bedside during those hospitalisations.

She was a permanent fixture in my SCD journey.

Dad was also always there, running the errands for drugs and drips.

Strength

My mum taught me strength through this journey.

When I had crises, all revolved around me and she put on hold all things to attend to me.

When out of crisis and stable, she ensured I was engaged in all household chores suited to my ability.

I never heard her say that I could not do anything, never.

When she shouted it was about my failure to take my routine drugs, folic acid, B complex and multivitamins.

However, to date, I have not built that habit of routinely taking these drugs, daily; and it has been by God’s grace.

Training

The training I received from strong parents resulted in a strength to be up and about always, sometimes when even in pain.

While mum ensured that we were skilled in all things about the home and in society, dad ensured his children were skilled in reading, arithmetic, and the sciences (although I was more inclined to reading, finding physics, math, chemistry and biology alien).

God

Growing up and honing my capacity in reading, I found the Good News Bible at home and read it from cover to cover.

Because I was most often weak and in pain, reading provided solace.

Falling in love with the Bible, I found God my strength, who gave me that inner strength to be unfazed at whatever the world threw at me in verses like Psalm 73:26.

God is the strength of my heart, and my portion forever.

I have lived this journey so far on God; repeating favourite verses on hospital beds till drugs such as pethidine and tramadol knocked me out.

There have been periods of stability, when I have gone years with no single visit to the hospital.

Fortunately (or is it unfortunately?), those periods resulted in a phobia for needles and any intrusive hospital procedure.

I believe that what people with SCD experience in pains and weaknesses, God makes up for with wit, assertiveness and sarcasm (funny ones) in grave situations.

@50

At 50 now, I am grateful to God and the family he put me in.

All my other siblings are so supportive of me.

I however have an issue with perceptions of SCD. I focus on one small aspect, which is screening.

The whole focus with screening is to make sure that the SCD gene is edited from humankind.

Humans are striving to ensure ‘quality’ breeds, and the SCD gene is not ‘quality’ enough.

Mildly, some explain it off as not wanting families to go through the stress of bringing up a child with SCD and all the complications.

Are we God?

I sometimes listen to such arguments and feel like an alien, a freak of nature, something that ought not to be part of humans.

Apart from this is the derogatory word sickle, used to define all who look unwell.

Well, the good news is that there are survivors doing well, while scientific breakthroughs are ensuring better life expectancies for those with SCD.

Regrets

I have a few regrets though…one being not having my parents around now to see the miracle God has wrought in this life.

Another regret is not having been able to engage my mother on SCD to ask her reaction when told her baby had SCD.

Would she have aborted me if she had been advised to do so?

She was such a strong woman, fearing neither president nor king, forthright and down to earth!

I never saw her agitated around me when in hospital, or frustrated when I had crises.

It has been one ‘heaven’ of a journey, and I look forward to the next and second jubilee.

Writer’s E-mail: caroline.boateng@graphic.com.gh