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I had a Brain Disorder and Died

This is the story of My daughter Chevy’s final journey. Today , February 10th on 2017 was the day she told me about her persistent headache as we strolled along the Beach, we meditated on a hammock, hoping the headache would go away. I dislike medicine.

I have grown and I have learnt.

They say if you don’t ask, the answer will always be NO.

Writing is therapeutic they say, I haven’t written in a while ( Since October) so this LONGEST posting should compensate and last another 12 Months because I will be away on study leave, back to school.

Mathew 7:7 was the easiest verse to remember because it was the first Christian song I heard and loved as a child in Sunday school, a long long long time ago before I quit church entirely.

I never used to attend church nor say any prayer for whoever and whatever, I was a self-styled and a staunch believer of Faith with no works is dead, until shit hit the fan, quite literally, to teach me a lesson in 2017. My head is still reeling.

Back to reality and flashback September 2015, our regional employment contract came to an abrupt end. I still had 2 daughters, one in high school and the other at University as we relocated to Mombasa. The intention to retire and settle in Kenya became mission impossible for my better half, we lost time and a small fortune trying to do things by the book. Always the upright Man, he decided to leave Kenya in 2016, for good, settled in Belgium and fell sick. He passed away 3 months ago, in October 2017, somewhere in Belgium.

My daughter Chevy’s final journey started with a headache, she had called me from South Africa where she was studying asking for some time-out, trying to complete a 4 year Degree in 3 years had taken it’s toll and told me her brain was overloaded, and tired. She needed to take some time off studies, and just Chill, Read Lazy. Or so we thought. I remember reprimanding her against googling medical symptoms because you actually start imagining that you are dying, when you start googling symptoms that is.

Call it bad timing, I call it divine intervention, we were (NOTE the past tense ) an immediate family of 4, all living in 3 different countries, the Partner living & working in Uganda in charge of Business interests in Burundi and Rwanda, the young one is in High school in Mombasa and eldest living and working in South Africa ( I call it my Mini United Nations family) subsequently she had hoped to move to Uganda and join an Aviation college while continuing her University studies when she was ready and her brain less tired, we moved a lot between all 3 countries when schools closed.

In retrospect, she quit her South African university before her expiry date and I’m still waiting for her full tuition and accommodation refund since 2015. Thankfully her repatriation refund was sorted by the South African High commission after an earlier rant ( I blogged about it. And it was not a nice experience )

I keep digressing, a lot of water passed under the bridge between 2015 and 2017, especially 2016. Without going into details, my eldest daughter turned up at my doorstep in Mombasa sometime in February of 2017 with a persistent headache and she had been taking one too many painkillers, she insisted we do a CT Scan because she felt as if insects were walking inside her brain. It was almost Valentine’s Day 2017, a mother’s instinct told me she was telling the truth.

I decided to walk along the beach every morning with her, hoping meditation would help, clearly something was bothering her. Having been away from each other for many years we hardly ever bonded, so I took that chance to get to really know my daughter. She loved the sea, she loved art ( I had hoped she would be an airline pilot or a Doctor because she was brilliant in sciences, had even interned as a Medical Doctor, and then changed her mind ) she even pointed out from her hammock the spot where wanted her ashes spread one day when she died, like a premonition, but she had said it in jest, she lived life and she loved to party, no matter who was paying (always yours truly)

We ruled out any mental issues from an expert analysis of a medical practitioner of many years, who decided to go ahead and do a CT Scan. This was sometime on the 21st after Valentine’s week prior in 2017, I remember it as a Tuesday. The results were to be collected on Friday the 24th 2017 due to backlog at the diagnostic & MRI centre.

The results were shocking and not good, not at all. Through a lay man’s eye one can clearly see half a brain, or whatever remained of the grey matter, I was confused, was she not in pain?. The first words I read from the report rhymed with encephalo, which meant The brain, and pathy, which means disorder. That explained a lot about her past erratic behavior and very disturbing personality, I would easily have settled for a bipolar condition, but a degenerative brain condition ? Was it treatable? When did she get It? Is it something she ate? Drunk? Too many questions but in conclusion ,we were told she might have started suffering roughly 5 years before. No wonder her art pieces. Explained a lot. Her characters and subjects were always sleeping, rather had their eyes closed, always Mother and child. Was she trying to reach out through her artwork?. Yes, she was crying out for help. She was misunderstood by many.

The Doctor told to me to get in touch with a Neurologist ( from whence I discovered the difference between a Neurosurgeon and a Neurologist) apparently there are no practicing neurologists here, there was a looming countrywide Doctors strike at the same time, the nearest were 400 km away in Nairobi, and ALL fully booked, weeks in advance.

It was a Friday afternoon when I sat there holding the results. Our Resident expert Doctor told me that if I had strings to pull, THIS was the moment. Strings? Me? Pull ? In Mombasa ? I have been away roughly 15 years, I had not even bothered to renew my NHIF card since my last employment in Kenya circa 2001, ( Do those things still work? I asked myself ) because we never lived here continuously our insurance had expired in December of 2016 and the employer no longer paid for medical bills in Kenya and other benefits, Life was too busy happening that I literally did not prioritize insurance. My daughter’s University insurance was also only valid in South Africa as long as she was still a valid student .

I was in a rush against time, I cannot pronounce whatever was prescribed as diagnosis from the MRI Centre, it was all in Greek. It came with a severe and urgent verbal warning To NOT ATTEMPT TO FLY my daughter in a pressurized cabin. This only meant we had to travel by ROAD to Nairobi. Mind you this was at a critical time when there were no hospital beds available to cater for all those who had thronged National and private hospitals in Nairobi because there were no Government doctors on duty countrywide, well. A few were working but extremely overwhelmed, they were unhappy about terms of their working conditions I later came to find out.

What nobody knew at that time, was my better half and partner had been airlifted for medical attention in his own homecountry in 2016 and we basically had to dig into our life savings until he received his National ID card in order to qualify for subsidized medial services as a citizen, having also been away many many years.

The irony was that the same thing was happening to me in Kenya, but in my case I had a valid national ID card, but no insurance. No safety net, I simply didn’t bother to renew it at my expense, After 15 years of company taking care of insurance and never falling sick one tends to get lazy. I lost trust with insurers after they refused to compensate my dental procedure, coincidentally I had just endured a nasty experience with a 4-year-old claim episode after my vehicle got involved in anhit and run an accident in 2012 and my 10-year-old insurer simply refused to pay me. I was hit, and they ran.

That Friday evening, found my self posting a late night status on my Facebook account, yes, Facebook … (And Twitter) URGENTLY looking for a Neurologist.

By midnight I had references to 15 Neurosurgeons, but NOT a single neurologist .

I received a call at exactly 10am the following Saturday 25th February 2017 from a Gentleman who identified himself as a Neurologist, but based in Nairobi. He told me he got my number from his daughter who happened to have seen my request via a mutual friend’s Facebook page.

The soft-spoken Good Doctor told me it was a brilliant idea to post the diagnosis and X-Ray results but never to do that again because now I have his contact details. Divine intervention? I just wanted my child to be sorted. Whatever was happening inside her brain was spreading fast, the key word was PROGRESSIVE.

The Good Doctor told me I was lucky that I’d caught him on his day off and he was shopping when his daughter called him to have a look at my case. A very busy Doctor he is, but promised that if I could find my way to Nairobi by noon the following day SUNDAY, he would take my daughter as his patient, it did not matter where I found a hospital bed ( If I was lucky ) he promised to wait for us. We could discuss her medical history once in Nairobi. He did not discuss payment. I loved him already. I only had my life savings to rely on, or so, I told myself.

I had to search for an ambulance because by late Friday my daughter had suffered a severe stroke and was partially paralyzed, she had visited my mother a day before and had collapsed.

We had found a St John’s ambulance but unfortunately it had a function at the National stadium until 18:00hrs Saturday. I went ahead and booked it for 4am the next Sunday morning, the driver will have rested and the ambulance hopefully fully serviced.

By midnight Saturday I had found a room at a hospital in Nairobi, a hospital I had never heard of before in my life but went ahead to get directions. As per the Doctor’s instructions we HAD to be in Nairobi by Sunday noon, or else.

I left my youngest daughter who was still at school with my parents, and never saw her again until her school closing day in April 2017.

Nairobi is less than 6 hours away, they say. But what we were about to endure was a 14hr nightmare Road-trip along the Mombasa / Nairobi highway.

We departed on time, at 4am Sunday morning, A fully equipped ambulance with a nurse and a driver. The road between Mariakani and Samburu / McKinnon road Mosque resembled a corrugated cattle-track but we made Voi in good time, by 7:30am we had crawled into a service station for refueling and my daughter needed assistance to stretch her limbs, that road stretch was basically like the surface of the moon for 2hrs.

The driver informed us that we had a situation, I asked him what the problem was, he said what he initially assumed was a slow puncture turned out to be an issue with a “NOZO”. I asked him what a NOZO was, he pointed at it, the nozzle from the back right tyre was broken, and we could not drive with a spare wheel without fixing the nozzle, there were no nozzle repairers in the whole of Voi township at 8am on a SUNDAY! The nearest town was Mtito Andei 75Km away.

We took a chance and drove on the Ambulance rim because the spare tyre also had a slow puncture (Story for another day) By the grace of GOD , and yes, I started learning how to PRAY with a purpose in February 2017. We arrived Mtito at 11am after burning rubber at 20 kilometer per hour on hotter than hot tarmac. They never taught us about how that Desert between Voi and Mtito Andei called Manyani Desert had crosswind.

There was a problem in Mtito. Not a single service station had NOZO repairers. Due to the nature of our emergency, we were directed somewhere under a tree where we found 4 tyre repairers, all of them were drunk !!!!!! We enquired whether they knew how to fix a NOZO, they said they could try. They had NO CLUE but somehow they did it after 2 hours. They couldn’t fix the spare wheel. I started to cry. We would have to drive all the way to Nairobi without a spare wheel. Mtito Andei is halfway between Mombasa and Nairobi.

We crawled out of Mtito Andei at 13:00hrs because the drunkards were unable to repair the spare tyre, the rim had fused with the rubber as we drove 75km on boiling tar. I had taken that 2hr opportunity to charge my electronic devices and was able to communicate with the Good Doctor that we would be running a little late, well. VERY Late. I finally lost my phone network somewhere between Salama and Emali , again I prayed we would find our room intact, I asked God to forgive me, maybe those drunkards were angels in disguise. They fixed the NOZO and I charged my phone so I kept updating my Facebook profile of my misadventure. Divine intervention?

The most interesting question I was being asked at the time was why on earth was I not flying out my child to INDIA !!! ( even after explaining until I turned blue that there was a problem in Houston) There was to be No India, No planes, there were no Doctors to prescribe overseas because strike, there was that urgency to contain whatever was progressing inside my child’s brain.

We arrived Nairobi at 18:30hrs on the dot, traffic between kilima Kiu and City Cabanas was a nightmare, I wondered where people go and come from on a SUNDAY!!! ( i’m Sure they were thinking the same thing about us) Such reckless overtaking at Lukenya. We had 4 head-on collision near misses.

We finally checked into the Hospital at 19:00hrs , unfortunately our one and ONLY allocated room had been given away at 15:00hrs because we never bothered to call to confirm that we were on our way.

The Ambulance driver insisted he had the spare tyre to repair before heading back to Mombasa the following day, unless I was willing to incur an additional $700 per day hiring the Ambulance for another 24hrs . I suddenly realized I was hot, hungry , thirsty all at the same time because I had hardly slept for a week and then my Daughter started moaning that her back hurt so bad. I kept telling myself pain is good, pain is good. If she can feel pain at least she is not completely paralyzed. The receptionist clearly told us there were no available rooms and that we could try a hospital bed in Kijabe!!!! (That’s another town in the outskirts of Nairobi overlooking the Rift Valley)

I was not yet defeated. I was willing to negotiate sleeping in the Ambulance until we get a room, fortunately the Good Doctor found me haggling at the reception desk for a room, he requested they release a special VIP room allocated to him for emergencies at twice the going rate, and just like that I knew we were in safe hands. It was the beginning of a good friendship. I did not know where I’d get the funds nor how long we would have to stay in Nairobi. I was willing to deposit my vehicle logbook because I also had just found out our joint bank account had issues, so I could not pay via debit nor Credit card. These things do happen, and when it rains, it pours!! I registered a Safaricom Paybill account and funds started coming in almost immediately, mostly strangers.

Ok, once we were admitted, the Good Doctor told me I literally needed a good night’s sleep and it NOT a good idea to sleep in a hospital bed because I would not get a wink of sleep and that I looked and smelt like , a goat. I liked him for his honesty, indeed I looked bad. Lucky for me I had been updating my misadventures via Facebook and a cousin rescued me, I wondered what even gave me the idea that I could sleep in a hospital.

First things first, tests and culture had to be harvested, they call it Spinal tap, by midnight my daughter was unrecognizable, she had screamed her lungs out as they folded her back like a prawn in order to extract spinal fluid, I don’t know for what. Everything was moving mechanically, I heard him mention the sample has to be flown to South Africa or something like that, and await results after 5 days because ONLY then will he start treatment, so the hospital room was simply a waiting room at $100 per night, the brain, he said , is a very complicated organ, no Doctor should tell you they know it all

The Good Doctor, I was told,taught ALL the Neurologists in Kenya, I vowed that someday, I would ask him what the difference between a Neurologist and a Neurosurgeon, that Sunday evening was just not the right time. I slept in peace with that thought. Because Facebook.

Booking a room at that hospital the best thing that ever happened to me in those 3 months in Nairobi. I learnt how to change adult diapers, roll a patient without breaking their back, clean and change and clean and change dressings, check vital signs for life, I learnt how to sleep while standing, I learnt to feed a patient, they usually cannot feed themselves at times, and sleep hungry, I learnt to count gloves, tissue paper and diapers,and syringes and drips, because at the end of the day the hospital will charge you double or ten times for the same items if you do not double-check your bill and or especially if insurance is settling the bill.

I was charged for Oxygen at Kshs 4000 per day. Not once did I see an oxygen cylinder in my daughter’s room. As for those Bottled waters, booming business right there. What I disliked most were the room to room preachers and pastors on a Sundays, they open doors by force and start spitting brim-fire and stones towards women who wear trousers and don tattoos. I doubt there are any statistics out there of how many electronic gadgets disappear while you sleep in your hospital bed. The food, I worry about wasted food, that is all

This story has to be done in part 1, 2 and 3 because we had to give up the comfy Hospital Room for more deserving emergency cases as soon as the culture results came back from South Africa and my daughter got treated within 2 weeks, she was partially healed except occasionally drifting into comatose state even when she was feeding. She loved chicken. I prefer MALA and Indian sweets with spicy food.

What were the odds that I also ended up right next to my daughter in hospital because I suffered a painful crisis developing in lobster claw, triggered by fatigue, heat, stress and dehydration and needed infusion and lots and lots of water. Between February and March Nairobi had experienced the hottest climate and dustiest as never been seen before. I was in safe hands in hospital. Water, plenty of water saved my life. I only drunk a glass of water once every 2 months. Today I religiously take 8 glasses per day, dropped down 5kg from 70. Divine  intervention ?

I was sick as a cow for 2weeks while taking care of my sick patient, thankfully the nurses in this hospital never participated in the strike while we were there, they were equally overwhelmed by workload but I never heard them complain.

We had to move her into a physiotherapy hospital out of Town and my child’s health deteriorated further when she simply stopped eating when I left in April to take care of the jealous sibling who felt neglected back in Mombasa that I had to bring her to .

Surprisingly within 2 weeks my child had developed atrophied muscles, I was asked politely to return my patient back to the main hospital in Nairobi because she was disturbing other patients by screaming to herself all day for Mummy and sleeping all day refusing physiotherapy. Her brain was shutting down slowly. I had to return urgently from Mombasa.

Within 2 days of hospital stay. I found a cheaper room at half the cost of the first room on the day of our arrival, we thought we’d be in for the long run. April holidays were coming to an end and the young one had to go back to school. I invested in education and not material stuff.

We found out the issue was not mental but she had bedsores on her bum and only needed Nystatine suspension 4 times per day, which cost me Kshs 80 only and her oral thrush cleared

My worst nightmare was almost realized when we were allocated room 431 on the fourth floor, but when I turned up for my morning shift the following day at 6am, her bed was empty and turned down. Somebody decided she needed a room with no partner because her new neighbour had also complained of the same noises, that she kept screaming for me, they moved her to room 403 around the corner.

I was told to consider ECT, electroconvulsive therapy, the hospital had made an appointment for me to see a Psychologist and make that decision for my daughters wellbeing, I was interrogated by the psychologist about my child’s history for 10 minutes, she wrote down some notes, stepped out and i never saw her again, and then realized upon checking out that she had billed me for her services.

We were back to no physiotherapy sessions at the hospital because they cost per Kshs 1000 hour and extremely expensive and or unless you are physically present, you will find your patient sitting down on her own but at the end of the day pay a bill for one hour physiotherapy session , I was paying $800 per week at the other physiotherapy hospital which was out of town, where all they supposedly concentrate on is physiotherapy, feeding and cleaning the patients, they only admitted 6 patients so I counted myself lucky to be able to sleep for a week or two and not having to worry about her wellbeing.

In my humble observation , I noticed there are Doctors who choose the profession because of the passion to serve, and then there are those who went into the medical profession just to make money, granted they all work hard against all odds. I was a nurse a Doctor, a driver, cleaner a psychologist , a teacher , a learner and a clown within those 3 months I spent alone with my daughter, longer than the 24 years she spent on her short life on earth,and I cherish those moments , her health deteriorated so fast she resorted to sign-language because she became unable to speak, I always received the thumbs up.

It always rains in April.

I recall the incident at Moi airport when the young one suddenly suffered severe convulsions and had to miss the flight because she needed an hour to sleep it off before being declared fit to fly, an isolated incident after a very long time, stress and anxiety related, she was going to see her sister for the first time in 3 months.

Stranger things have happened that Ripleys believes but if I had no documentary evidence even HE would think I was making stuff up, probably wouldn’t believe it.I fell off the aircraft in a dramatic Starsky and Hutch drop and roll on the airport Tarmac, landing on all fours, ripping off my trousers at the knees (That ONE day I never wore a pair of jeans to travel as I always do) In the process of tumbling down the stairs, I almost broke my neck. Not the most elegant arrival into

 

Nairobi, both Mother and young daughter wheelchair-assisted into a waiting Uber, nothing broken besides my ego. It was a most painful landing. I still shudder at that thought. What was going on in my life at that time? (I sprinkled holy water immediately I reached where I was headed) I have a pronounced limp to-date. I shall stick to Khaki and Jean trousers when traveling, and sketchers.

I decided to ask for immediate discharge. The thought of Home therapy sounded feasible, but how to travel 400km away with a bedridden patient became a challenge, flying was out of the question, and we now had an extra passenger, my other daughter. I decided to charter a Noah, collapse the seats and convert it into a comfortable transportation mode. It sounded logical until I was made to deposit half the price for a driver who was yet to depart from Mombasa when I called to tell him I was ready at 6am , I had already been discharged a day earlier. I had to make alternative means because the room would have incurred additional, costs after midday. His name is Dan and he outrightly conned me after I deposited half the amount he charges 7 passengers per trip up or down Mombasa /Nairobi

Medical bills are turning 2.5 million Kenyans from bread winners into paupers annually ( Ministry of Health statistics) and those numbers are rising . Raising funds for medical bills humbles you for lack of a better word. Do not hesitate to ask for help, Insurance has it’s limits.

I unknowingly signed up for this job 24 years ago, the going was about to get tougher and tougher and tougher, I can only attest to divine intervention because by the end of the 3 Months between February – May, or simply 100 days later, Doctors were still on strike and the nurses had joined them, a cleaner whispered in my ear that more patients die of hunger than the disease that brought them into hospital in the first place.

I waited 24 for this job. Within 100 days, we had taken 10 steps forward and 15 backwards. Within those 100 days from my daughter’s last headache and subsequent stroke, she passed away in her sleep 6hrs shy of my own Birthday. I cremated my child as per her wish, got judged harshly, the long-term pastor of the church I quit a long time ago said we resorted to another religion that burns children so had no time to spare for me. I thought I’d lost EVERYTHING, my better half never recovered, he died peacefully in October last year ( 4 months ago) while undergoing treatment 6hrs shy of his birthday. My daughter lived to see her 24th Birthday on March 17th. My Sister Rodah passed away in March of 2014, 7 days to my daughter’s Birth date, too many coincidences. It had not rained in Nairobi until the exact moment when we cut her cake, and then it just poured. It rained and rained and rained, for we are rainmakers.

It rained on my Birthday sometime in April, when we spread her ashes into the Indian Ocean. My ancestors approved of our decision, that is all that matters.

I stopped asking myself, what if all this happened in South Africa? Who would have informed me of her passing, who would have looked for her? How would I have managed everything. She came home for a reason and my better half went to his country for a reason. I count my blessings everyday and grateful that my name is on that wake-up list every morning.

 

It’s okay to feel angry because I was extremely angry and then got a well rested break from reality, reset my factory settings, counted my blessings and now it is only onwards and upwards, soon and very soon we shall be traveling to Harvard University having enrolled the young one in the summer of 2018.

The option for a full financial grant is open but there is extreme competition, deadline for submission of application was the 2nd of February and may the best student win when they make the announcement on 2nd March.

Against all odds, losing her sister and father within 6 months of each other she studied hard in 2017 and managed an invitation bestowed on her based on demonstration of outstanding scholastic merit & leadership potential to Harvard University, I have 2 functioning kidneys.

We all carry, inside us, people who came before us, our responsibility is to mark the moments in time that we are here , contributing to that. The presence of being.

When it rains, it pours.

Story By: Caroline Kere 

In loving Memory of Chevaugne Kere