‘’Still, I never gave up’’
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There is a certain finality in the way her words reverberate in the silence of her fathers compound that jolt me to pay close attention.
I want to nudge her to explain her wisdom.
See, the girl I was interviewing was not just any other random stranger. This was someone I had been to school with those many moons ago.
Because social media came about at a time when we were just coming of age, we remained connected. Life was good.
Youthfulness and its folly, we did it all and won. Won you ask? Well, it matters because often youth is associated with vacuous traps of imagined self importance.
It matters more when you can still have a casual coffee with each other and not be destructed by lives vicious cycle of want or be consumed by the ‘me’ epidemic.
I digress. Wamz got ill along the way.
I must admit though that it is hard doing an interview about this particular chapter of her life for several reasons.
One, I don’t know what is okay to ask and what might trigger ugly memories of dragons she has slayed and buried.
Then, I am totally ignorant about ‘Desmoid Tumours’ which is what she has been battling with since 2011.
I had been to her social media pages. That bit of her is known to me pretty well. Her social media space is largely swarmed with messages that define her journey.
It oscillates from her career, other times the anecdotes lean towards creating awareness about her illness and even motherhood. The spice is in the epithets of inspiration.
Sometimes I feel like a stalker when I peer into her page. You wont miss the gems. Like this one, that is sort of stolen from the bottom pit of my life strokes.
Goals. Let’s try and stick with the goal of this blog post.
So we sit sipping a cup of tea (my love for tea is legendary, still waiting for Guiness Book of Records to document my subtle achievements) often wondering who the lady sitting opposite me was about.
Who was she? How did she get here? Where does she get this bottomless mass of strength to work, walk, pray, go to battle with a disease that is so rare and so vicious, and still be grateful when she turns in after a long day? Is her muscle hidden in the roaring laughter and genuine camaraderie of our shared histories?
I sat there, dumbfounded, trying hard to conceal my ignorance. Out of the blue, she cautioned a colleague to be careful because there are bees in her father’s garden.
They sting when rattled. In times of abundance, there is plenty of honey for the family to indulge.
Perhaps that is what the mother of one whom we call Wam’z is about. She can be a beautiful human being…. until you rattle her.
She returned to her fathers house because she was ailing, could never know for certain whether the day would end without a medical emergency.
‘’Sometimes my daughter would come home and be told I am in hospital. She would ask, but I was with her in the morning?’’
Home called. The fruits of that decision are manifest in her daughter and the smile of contentment she exudes.
Wamz was recently in India, accompanied by her father, for yet another life saving surgery. It was successful.
I will let the woman who walks around with a mesh in her belly and lives a life so full of gratitude walk you through her journey with Desmoid Tumours. It is World Desmoid Tumour Month by the way.
In her Own Words
Note: The film was taken before her trip to Apollo hospital in India. Her surgery was successful and she is now back home.
In the last five years, a disease has tested my independence, my strength, my faith and positive outlook on life. The disease goes by the name Desmoid Tumour (DT).
Most of 2011 & 2012 was spent running test upon test, we couldn’t figure out what was causing my discomfort—at the time—leading up to full blown unbearable pain.
Imaging discovered a mass in my left abdominal muscle. From the onset, it wasn’t going to be an “easy” journey. Radical excision of the little known tumour they said. Little did I know that this blob would become a major pain, almost daily, 5 years on!
The mass turned out to be a Desmoid Tumour; classified by the American Cancer Society (had to find that out in Delhi) as a locally-metastasizing sarcoma.
The tumour is very aggressive and in under 7months it had spread rapidly across my abdomen.
My team of surgeons removed my entire left abdominal wall, I lost half my core muscles, compromising my stability! The ability to sit, drive, walk, swim, sleep and function as I knew before, changed forever on Sept 27th,2012! In two subsequent surgeries, I’ve battled subacute obstruction of the intestines, seizures and was treated for depression. Still, I never gave up!!
I’m eternally grateful to the team of highly skilled surgical oncologists at Apollo Hospital, Delhi as well as my medical oncologist at MP Shah, Nairobi.
There’s is no known cure for Desmoid Tumours, that just sucks!
Anything DT touches in the human body is tainted and must be surgically removed, because DT microscopically extends tiny branches of itself into surrounding tissue, literally chocking the life out of your internal organs!
Ravaging your insides by the day.
I like to say I’m One in a Million, because literally, 1 in a million people are diagnosed with Desmoid Tumours.
As there’s no known cure for DT yet; my little thing is to create awareness, donate to the Desmoid Tumour Research Foundation, support those in treatment, honour those we’ve lost and shine a beacon of hope for those battling.
This year, I was taken ill and admitted at Nairobi Hospital. Unknown to me at the time, was that the severe pain I was experiencing was due to an obstruction in my intestines which required urgent medical intervention.
To say I was rather disappointed by the turn of events, so close to my 5th year anniversary of being #DesmoidTumour free, is an understatement! I cried, I questioned, I doubted, I was plenty pissed! But after I had let the emotions run their cycle, I picked my boxing gloves, read up on this new development, sought all options open to me then placed all these at the foot of the Cross.
I knew it wasn’t my place to figure out how things would unfold, it wasn’t my place to try and get answers, it wasn’t even my place to fix it (having recently resigned as CEO of the universe!)… Mine was to trust in God’s unchanging character. To believe with the little faith I had, that indeed my life was safe & secure in His hands.
Friends, prayer partners, family, neighbours and colleagues came together and we organized a successful online campaign.
People gave, gave. An outpouring of love, which still warms my heart. I could never thank you all enough. May our Lord in His wisdom reward you all.
A successful 4 and a half hour surgery later, loads of pain and countless staples running across my tummy, bear witness to God’s faithfulness. Indeed, the battle belongs to the Lord!
There are things that nobody tells you about. No body told me how ugly my scars would be, completely disfigured abdominal area. No body told me I’d detest my new body.
No body warned me that I’d one day hate the reflection in the mirror when I looked at the surgeon’s handi work; countless stitches, running haphazardly across my tummy because Desmoid Tumours are the most abstract of tumours.
But I only allowed one day to cry and hate what I saw!! Then I chose to #DoMe
I’ve embraced my scars, they tell a story of survival, triumph over my greatest battle to date!
My scars are the opening line of a prayer of thanks giving, a gratitude attitude I’ve purposed to embrace and spread.
I purpose to wear my scars with pride, that others would know their pain isn’t in vain.