PART OF THE JOURNEY IS THE END
14th July 2019. That is the precise date when Lwile asked me to write a guest post for this here blog. I was rather flummoxed at the request but I said yes without even knowing when I was supposed to do so. “Though it will be much later in time,” she said. When I inquired about the timeline, she answered “it’s for 27th Feb next year.” My instant reaction was:
At the time, I didn’t know if I was and/or would be ready to unpack any of the stuff that I had gone through and then there was the fact that the last piece of proper writing that I had done was my KCSE English paper one composition. So yeah…
Lwile has pointed out before that grief is a nonlinear, never ending process. I couldn’t agree more. It takes time to heal but during that time, there’s A LOT of work that needs to be put in. You can’t just stand still and hope that time does its thing; it’s not that simple. One day, I will be able to unpack that process but I’m still proud of how far I’ve come and I know that there’s still a long way to go; one way or another, I will get there, whatever it takes.
As you’ll soon find out, 27th February is a day of the utmost importance in my life. Madam Lwile knows that very well (I can’t speak highly enough of how big a help she’s been since then) and she had an idea of where I was at in my healing process so she shot her guest post shot with her usual intentionality and now here we are.
Folks, this gives you an idea of just how much thought she puts into Lwiletheleo. Imagine having a content calendar full for the next twelve months; your favourite blogger could never. 😀
Also, there’s going to be a recurrence of the use of actual dates as this post is basically about time; the tone has been set with the first three words of the post.
“Part of the journey is the end” Anthony Edward Stark, Avengers Endgame.
From my very first viewing of the fourth installment of the Avengers franchise, this line (and “whatever it takes”) stuck with me. I’d find myself muttering it to myself every now and again. At first, I wasn’t quite sure why but somewhere along my grief journey, it started becoming clear why. Writing this post has been one hell of a cathartic experience.
On this day, two years ago, at precisely 9:55pm, I had my last interaction with my mum; I told her good night, gave her palm a gentle squeeze and made a face. She responded with a faint smile and a soft three fingered slap across my left cheek. One and a half hours later, she’d take her last breath.
The use of the word interaction is intentional because by that point, the cancer had run amok and in addition to taking away her strength, her ability to speak was more or less gone; the only way she could communicate was through hand gestures accompanied with facial expressions and faint sounds.
I drove home mulling over the fact that I had at least one more trip left to the hospital because I wasn’t too sure just how much longer she could hold on.
Three days earlier, on the 24th of February, my dad had given us (my sister and I) the news that she was running out of time; 3 – 4 days max was the prediction her doctors had given as the tumor in her abdomen had become so big that it had started pressing against her diaphragm making it difficult for her to breathe. The pressure that was being exerted on her kidneys, liver, bladder and intestines had pushed many general body functions to the limit and unless a miracle happened, this was a fight she was not going to win.
I’m no doctor, but what my dad was telling me just seemed to confirm what I was seeing unfold before my eyes. Something I’m good at is pattern recognition at lightning speed; whatever the situation. If it’s someone that I hold dear, I will pick up on their non-verbal expressions, mannerisms and patterns, however miniscule, quite quickly.
At this point, I’d been by her side every day for the preceding two weeks, 12-14 hours a day, doing whatever I could to tend to her needs. It’s not that I was not trusting of her care givers at the hospital (there was a level of mistrust if I’m being honest) but this was my mum; everything else took a back seat. It also helps that my top two love languages are quality time and acts of service so I just did what felt natural.
Foot rubs, handing her her treasured Kamba Bible and glasses when she needed a read, playing for her some of her favourite hymns from her phone, rubbing ice cubes on her forehead when she became too hot, adjusting her pillows and sleeping positions to keep the bed sores at bay, helping her to her feet to walk around the room to reduce the possibility of clots forming on her legs and just holding her hand if she needed it; whatever she needed.
I had a front row seat to how she was coping physically, emotionally and mentally; some days were good, most were terrible. There’s nothing as soul-crushing as seeing someone you love suffer when you can do little to fuck all about it. Absolutely nothing.
So when my dad broke it down to me in detail, I wasn’t surprised. I knew the end was near. The storm that was brewing in my head didn’t help matters either.
First of all, I was absolutely seething; at God in particular. How the fuck did he let all this happen to (according to me) one of his greatest proponents. How?? What as the point of all this pain and suffering?? Why HER?? I could not understand why this was happening to her and I still haven’t. We’re all going to die, one way or the other; that’s something that I made peace with many years ago but there are ways to go that I would not wish on anyone and this is one of them – so yeah, I was fucking livid.
Secondly, I just wanted all the pain and suffering she was going through to end; one way or the other. I don’t know how she kept going but even when her condition deteriorated, she still kept a smile on her face at most times. Her zest for life was there till the very end and it is energy I fed off of and tried to maintain by all means. In addition to making sure her visitors sanitized their hands before walking into the room to see her, I made it clear to them that they must try and maintain a positive vibe; that was non-negotiable.
Nothing for sullen looks and/or tears; talk to her in a manner that’s as normal (her normal was lots of laughs and little jokes her and there) as possible and pray and/or share a POSITIVE Bible verse (nothing for stories about how Job went through the most and stuff like that). I’m not one to dictate how people should react in certain situations but when the mental health of my mother is at stake and she’s not really in a position to communicate effectively, you’re going to play by my rules. I knew that she fed off the energy of her visitors so I had to take a stand; happy faces and light conversations would carry her through the moments she would be alone in the room or when she was undergoing dialysis and I felt that all this would somehow reinforce her will power to fight. So yes, there were some visitors that I had to remove from her presence from time to time; something that I have absolutely no regrets about.
Now that her body functions were starting to shut down, we had a decision to make. If it came down to it, there was no need to put her on life support; we’d just let her go. My dad and sister are both doctors so they’re very much aware of all the medical issues the patient and family have to deal with when life support comes into the picture. I’m sure both of them had had separate individual conversations with her on this matter and had her blessing because that was the kind of person she was; always put others ahead of herself and tried as much as possible not to be a burden on others. I hadn’t had that conversation with her yet but I was close to the point where I could not bear to see her this way; so a decision was made.
During my stay with her on Saturday (the 24th of February), I’d noticed that her speech was starting to become slow and erratic; she would be talking about something then go off on a tangent before coming back round to the topic at hand. Sometimes she would not come back. By Tuesday, she could hardly construct a sentence. This was a microcosm of just how shit had escalated so rapidly.
At around 1:40pm on the 12th of January, I got a call from my dad letting me know that mum was being admitted at Nairobi Hospital for scans because of discomfort in her abdominal area. He did not sound alarmed but I immediately thought “Fuck. This surely can’t be it.”
Just to shed light on my thought process at that moment, on New Year’s day I’d woken up with the most horrific of feelings – one of my parents was going to die. To date, I can’t explain how and why I felt that way but I was sure as fuck that it was not a dream and it was certainly not a thought; just a horrible precise feeling in the pit of my stomach. It stayed with me for about an hour and then disappeared. Obviously, I had a million questions about such an unfathomable occurrence and my mind was on overdrive for a few days until it eventually dialed down to a gnawing feeling at the back of my mind so when this particular call came, that feeling was back.
I went to the hospital to chill with her until around 10pm when I went home. She did say that it was an on and off problem she’d been having for like two weeks and reminded me of the road trip we’d taken on Boxing Day where there were 2 lengthy bathroom breaks she’d taken on the way to Maua (to visit my sister that worked there at the time) and on the way back to Nairobi; something that she’d never done before. The issue had flared up again on the 30th of December when she’d taken a road trip with my dad but had since disappeared till the 11th of Jan.
Tests were done and it was revealed that she had a huge malignant tumor nestled behind her uterus that was causing all this discomfort. Surgery was done successfully on the 14th of Jan where she had both her uterus and most of the tumor removed and a colostomy done as a part of her large intestine had died off as a result of pressure from the tumor. She stayed in the hospital for a week for recovery and was back home on Monday, the 22nd of Jan to continue with her recovery. The plan was to go back to hospital on the 14th of Feb to begin chemotherapy once she had recovered from surgery.
All was well for the rest of the week and she was on her way to recovery until she started feeling a bit of discomfort in her abdomen again. This resulted in her being readmitted on the 29th of Jan. I must say that these 7 days were arguably the best part of our relationship for a long time.
Between 2008 and 2016, our relationship had broken down completely. My second year at university had not been great – results were as poor as they’d ever been and we argued a lot. As a mother first and secondly, a lecturer, she did not understand how someone that had been an A/A- student all his life was suddenly struggling with his studies. I on the other hand was not forthcoming with the reasons why (I was never in class because of shenanigans I got up to; shenanigans that would warrant a few posts on the SATC section of this blog. Lol) which years later I found out was a coping mechanism I’d employed as I was not ready to deal with the passing of two people that I considered my “other parents” in September 2008.
In retrospect, this was my fault. I made things worse by shutting her out; I felt that she talked at me and treated me like child when I was over here doing “grown up” things *face palm* but I never really communicated those concerns so we settled into a pattern where I’d try as much as possible not to talk at length with her as I thought I knew where the conversation would end up. There was never any disrespect on my part as I listened and did as requested when possible but that was about it. Conversations were always short and to the point. She on the other hand never gave up; always sought me out to try and have a chat despite the fact that I had essentially built a wall around myself.
Things started getting better from 2017 when I started travelling a lot and we were apart for longer periods. We started talking for longer on the phone and via texts (apart from the Christian wozzap forwards which I almost always ignored). The brick wall was still there but it had started coming down bit by bit. I started seeing her not just as “mum”, a loving wife and a lecturer. It had taken a while but I had finally started getting my head out of my arse.
Why I say that one week interlude between her hospital stays was the best in our relationship for a long time, it is because we had the most intimate and in depth conversations about our relationship; all our cards were laid out on the table and I understood just how much me shutting her out hurt her. It was heavy. On the day she told me about this I just about held it together in her presence but on my way back to my place, I cried for the first time in a very long time; and basically cried myself to sleep that night. I was so angry at myself for what I’d done; I could not whip my head around just how much hurt I’d caused her for so long. This is something I actually got round to forgiving myself for late last year. We had proper clear the air talks that particular week and even though I felt that we were not yet done unpacking stuff that had manifested for years, we were in a much better place.
Over the next three weeks, it was all about just battling complication after complication. An infection would flare up, she’d be put on meds to get rid of it; as one infection got dealt with, another would flare up. She had to get blood thinners to minimize occurrence of clots in her legs as she was not that mobile. It was basically an endless firefighting experience and all the while, whenever she was awake, she was still jovial, cracking jokes, entertaining visitors and doing her walks around the room with the nurses; as ebullient as ever.
An example of this perpetual firefighting experience is the point where she had to have stents put in her ureters (the pipes that connect the kidneys to the bladder) as they had been compressed by the tumor. This compressions meant that there was a back flow of toxic waste released by the kidneys back to the kidneys which brought about infections. Infections led to kidney malfunction which led to regular dialysis sessions where machines basically do the work of the kidneys so that they can rest and recover quickly.
In the meantime the tumor had started growing again; at a rate that her doctors thought was impossible. She still wasn’t ready for chemotherapy by the 14th of Feb as her body was not strong enough, there were still infections to deal with and kidney function was not at its optimum. It went from stage 1 to stage 4 in a less than a month. Fucking hell.
Radiotherapy was discussed as an option but after checks and analysis, that too was deemed too risky as the tumor was way too close to the liver; it would have been too precarious to expose a major organ like the liver to radiation when the kidneys are barely functioning at 30% capacity. There seemed to be no way out which I came to learn is basically how cancer operates.
The week of the 19th started well; infections had started clearing up and by the 23rd, she’d have been ready for round one of chemo. We were hopeful. Despite the continued growth of the tumor, her body was regaining strength, kidney function was on the up and so was her resolve.
The knockout blow arrived on the evening of the 23rd; her kidneys just shut down completely. See, cancer cells move around the body via the blood so once they had broken away from the initial tumor that had been reduced in January, it was only a matter of time; at that point, any organ is now fair game. They were now in her kidneys, lungs and brain. The kidneys had completely shut down, it was starting to get difficult for her to breathe and her cognitive function was almost gone. Somehow, she still kept smiling.
I was absolutely crushed by latter. How could someone so talkative, cheery and basically the life of every party that thrived when teaching and imparting her knowledge on others get to a point where she could not string more than four words together? How the fuck did it get to this point? Why HER?
She could no longer sing her hymns, she could no longer even say “AMEN” when people prayed with her, she could no longer crack her jokes and tell stories. I can’t even begin to imagine the anguish she was going through at the point she became aware that her very essence was being taken away; it must have destroyed her. All I could do at this point was to make sure she felt understood and with some hand gestures and facial expressions, we quickly developed an understanding; knocking down the barriers of communication, whatever it took.
We watched the Liverpool v Westham game together on the 24th of February – our very last match. It ended in a 4-1 win for LFC; it had been a while since we’d watched a match together (she became interested in football and Liverpool FC in particular as a way of bonding and would ask about scores and any major transfer news or managerial changes she’d get wind of) and she seemed to brighten up a lot every time we scored and was particularly thrilled with how much I went on about the manager Jurgen Klopp (bless his big German heart). She was happy to see me happy. No one roots for you like your mum. No one.
I remember the details of the 27th of February so vividly; had an early morning business forum to attend at 7 which would end at around midday. The day before, I’d left the hospital at around 11pm and told mum that I’d be arriving at around midday; 3 hours later than my usual arrival time. I knew she would not be alone for long as my dad would spend an hour with her every morning from like 6 – 7 before getting on with his day and would always pop by quite a number of times during the day. One of her best friends would also spend an hour with her before going to work then I’d arrive.
Despite the fact that her kidneys had stopped working and she now had oxygen tubes in her nostrils, when I left her side on Monday at around midnight, she was still in high spirits. There was quite a bit of pain as the tumor was exerting pressure all over; her stomach had more than doubled in size as a result and there was hardly a comfortable enough position for her on the bed.
When I got to her room at around 12:30pm on the 27th, something had changed. Her energy was off and she had an emptiness in her eyes that I had not seen before. She was weaker than I had seen her; even weaker than she was immediately after the initial surgery. There was a hint of resignation about her. I tried communicating with her for a bit and then stepped out of the room to make a call; called my dad and my sister to explain what I’d seen. My dad had seen her earlier in the morning when he was with her and immediately called my sister to come to Nairobi. That sense of foreboding that I had felt on January 1st was back. Fuck.
I put the “check with the nurse first” sign on the door, with the permission of the head nurse who was among the nurses I had struck up a rapport with and went and sat by her bedside holding her hand. I felt that it was important that she knew my sister was on the way back from Maua to see her and that lifted her spirits a bit. There was not really much to say at that point so I played her hymns and dealt with the visitors who’d come to see her; most I knew, some I didn’t.
At one point as we were there in silence, she squeezed my hand and as I looked at her she somehow mustered the strength to say “Sonny, achana na izi shida za dunia na uendelee na maisha yako”. I nodded and assured her that I would and implored her to save her strength and rest. Those were the last words she ever spoke to me.
Later in the afternoon at around 5:30, one of my best friends stopped by to check in on us. I left my mum in the company of one of my sister’s best friends; someone mum considered her daughter, while I grabbed something to eat at the cafeteria. I filled them (le BFF and her mum) in on mum’s condition and when we were done, ushered them in to the room to share a few words of encouragement before they left.
A few more visitors passed by and at 7:30 my dad joined me in the room. When he went over to the side of the bed to talk to her, she insisted on laying her hand on top of his head and nodded with a faint smile; something she had done to me when I came back to the room at around 7 after seeing out the last of the visitors. It was not until 9pm when my sister arrived and as soon as she went over to the side of the bed, she did the same thing; laying her palm on top of her head and nodding with a faint smile. We stayed and chatted a bit and left at 5 to 10 hoping to see her breathing again in the morning for at least one last time but it wasn’t to be.
The actual cause of death was cardiorespiratory arrest (heart attack) caused by septicaemia (a situation where bacteria enter the bloodstream, and cause blood poisoning which triggers sepsis. Sepsis is an overwhelming and life-threatening response to infection that can lead to tissue damage, organ failure and death) which was instigated by leiomyosarcoma (a rare form of cancer that starts in smooth muscles that line organs like the stomach, bladder, uterus and intestines) and kidney failure.
In the days after the burial when I finally got some alone time, I reflected on the standout moments of that poignant Tuesday. She knew her time had come and had made peace with it and God. All that was left was seeing us together one last time and giving us her blessing so that she could go in peace.
I will never forget that smile that accompanied the faint three fingered slap on my left cheek; it was the most serene and content smile I’ve seen to date.
Keep resting well with the angels, mum.
I’m just gonna go ahead and borrow a quote that Adelle posted on IG on her late mum’s birthday:
We are the rememberers
The people left behind to keep the one who’s gone alive in heart and mind
As long as I love you, you will live and as long as I live, I will love you.
PS: The finishing touches to this post were applied on the 24th of February 2020; exactly two years to the day since that last Liverpool v Westham match we watched together.
Guess which team Liverpool beat in another five goal thriller playing on that day? *grins*
Funny how time works, eh?