JS Kicking Cancer’s Ass Theme 4 of 13: The Firstborn aka The Caregiver

When my mum was diagnosed with stage four breast cancer one sunny Friday afternoon in June 2012, I knew my life would never be the same again. What I did not know was just how monumental the change would be.

After being diagnosed with breast cancer my mum’s oncologist recommended chemotherapy followed by a mastectomy then radiotherapy as her treatment plan. After eight rounds of chemotherapy my mum had a mastectomy in December 2012 followed by radiotherapy in January 2013 to target the cancer that had metastasised to her spine. However the doctors in charge of the radiotherapy fucked things up and ended up paralysing my mum from the waist down because:

1. 1. They did not tell her there was a high chance that the radiation would leave her paralysed.
   2. The dosage of the radiation was too high that it practically charred her spine.
   3. The dosage of the steroids they gave her was not high enough.

Before my mum was diagnosed with a terminal illness and given five years to live, I definitely identified as an extrovert. Carl Jung describes an introvert as someone who has to be alone to re-energize while an extrovert is energized by being around people. Before June 15, 2012 I was a shitload of fun and liked loved being around people, whether we were out partying or in a more muted setting bantering.

Then all hell broke loose in 2014 because for the next two years my mum would be admitted to hospital on a monthly basis. I have the memory of an elephant so I “never forget” shit, but I do not remember what my mum was being admitted for in the nine months before she became paralysed from the waist down in September 2014. That gap in my recollection is my brain reacting to the trauma by blocking out the painful memories in a bid to keep me sane. But if I were to venture a guess, I would say she was being admitted for pain management.

Pre paralysis my mum was still very self-sufficient but after she became paralysed from the waist down EVERYTHING changed. Imagine not being able to get out of bed unless someone helps you. Imagine not being able to turn in your bed as you sleep at night unless someone helps you. Imagine not being able to shower unless someone helps you. Imagine not being able to get dressed unless someone helps you. Imagine not being able to move from point A to point B unless someone helps you. Whatever fucking thing you can think of, imagine not being able to do it unless someone helps you. That level of dependency will undoubtedly take a toll on anyone and my mum was no exception.

Becoming paralysed from the waist down broke my mum’s heart into a million pieces for all the reasons you can imagine but more so because she deeply grieved her lost dignity. It was devastating for her to realise that she would need to wear adult diapers and have someone clean up after her for the rest of her life. I will never ever in my life forget the pain in her face and voice the day she told me, “I cannot even take myself to the toilet. Lwile I have lost my dignity.”

When my mum first became paralysed my aunt (her big sister) moved in with us for almost two months to take care of my mum. She slept on a mattress on the floor of my mum’s bedroom and in that time my aunt helped my mum to bathe and dress, she changed her adult diapers, she made sure my mum took her medications … basically anything and everything my mum could not do for herself, her big sister was there for her.

Eventually we got a nurse aide for the daytime so my aunt moved back home and I, being the firstborn, automatically took over the night-time duties. That meant all evenings I had to come home sober and at a decent time to take care of my mum. I was in charge of giving her her medication, wheeling her from the sitting room to her bedroom, transferring her onto the bed, making sure she was positioned comfortably enough to sleep, turning her every 2- 3 hours each night so that she does not get bedsores. I would also help with her accounting and her Mpesa business, among other things that preoccupied her time when she was not in pain.

Sounds noble yes? But as I confessed in F Is For Firstborns there were days I hated it. And on those days I hated myself for hating it.

There were days I was glad to be my mum’s caregiver. I was cognisant of the fact that the only reason she would ask me to do stuff for her was because she could not do them for herself. My mum was a fiercely independent woman before her paralysis so I can only imagine how shitty it made her feel being so dependent on everyone for everything. And I wanted to do those things for her because I knew she would not be around forever and I did not want to look back later and regret the night I did not want to get out of bed to put the TV remote control within her reach. But there were other days I would get home from work tired AF and I just wanted to sleep, but that was not possible as my mum’s caregiver. On those days I deeply resented being a firstborn and all the responsibilities that come with it.

With time a battle started to rage inside me. A battle between wanting to take care of my dying mum and wanting to live my life. I know that to care for those who once cared for us is one of the highest honours, but I am only human. To say I always felt honoured being my mum’s caregiver would be to tell a lie. There were days I downright hated going home because I knew what was waiting for me. It was also difficult to make after work plans because I had to get home early and sober. When I think about it now I guess that is part of why/how I became an introvert. Home was the only destination I could afford after work for a very long time. I remember my birthday in 2015, (we had gotten a night nurse by then but when they would not show up for work I had to step in as the caregiver) my boyfriend at the time took me for dinner at Caramel and dropped me home immediately after. There was no birthday sex for me as I had to go home and take care of my mum’s second turn of the night.

Being my mum’s “primary” caregiver is the most difficult, most rewarding, most conflicting role I have played in life to date. The role came with so many ugly emotions – resentment, envy, hate, despair, bitterness – that I was not prepared for and had no idea how to deal with. I had not yet gained the emotional and intellectual maturity to process those ugly emotions that had taken root in my heart and so I would take them out on my colleagues and, every now and then, my family.

My sister and I used to share a room back then and one day I said something incredibly mean to her. I then went to the kitchen to do one thing or the other and as I made my way back to the room I heard my sister crying. Like, full on ugly crying. As I write this I have no recollection of the incredibly mean thing I said but I will never ever forget the sound of her crying. It stopped me dead in my tracks and I stood outside the door, unsure of what to do, knowing in that moment I was the shittiest sister in the world. Eventually I entered the room and did my best to apologise, but if I remember correctly my sister was not having it.

Looking back now I can clearly see that I should have been going to therapy back then because I was dealing with shit I had absolutely no idea how to handle. One of the last things my mum told me before she died is that I keep things to myself too much and in many ways she was right. Between 2014 and 2015 I was in so much pain but I kept that pain buried deep inside me and did not talk about it nearly as often or as honestly as I should have. I was dying on the inside but I did not know how to process my pain so instead I found comfort in it. I sat with the pain and held space for it for so long such that by the time I was finding comfort in it, the pain had become part of my identity.

When what causes you pain has been in your life for so long to the extent it becomes part of your identity, it is easy to use that newfound identity to rationalise your poor choices. To justify the ugly emotions that consume you and make a case for why those ugly emotions deserve the space they have usurped in your heart. It then becomes hard to let go of that identity because to do so means you are no longer able to rationalise your poor choices. To let go of that identity is to kick out the ugly emotions that have taken up space in your heart. And, in the words of Iyanla Vanzant, the only way to do that is:

You must find the strength to open the wounds, stick your hands inside, pull out the core of the pain that is holding you in your past, the memories, and make peace with them.

That is as daunting as it sounds which is why rather than dealing with the pain, a lot of people opt to take a “painkiller” instead. In 2017 my therapist at the time told me there are three common “painkillers” in our society: religion, sex and alcohol/drugs. How many of us avoid dealing with the issue at hand because “my God is able”? How many of us engage in all of the casual sex because being alone is deeply uncomfortable? How many of us drink too much or do way too many drugs because we would rather not face our difficulties head on? I do not identify as religious so that painkiller is inapplicable to me. And at the time I was in a relationship so I was not using sex as a painkiller either. But I sure did drink and smoke (both cigarettes and weed) a lot.

On the flip side I eventually found a healthy outlet in the form of books and in 2015 I took part in my first structured reading challenge. When my therapist in 2017 told me that reading is a form of escape at first I disputed it. Isn’t binge-watching a series a form of escape too? But I did some research on the subject and of course my therapist was right. Books let us escape the limits of time and space. As Stephen King said, “books are a uniquely portable magic.” More often than not you will find that people who have been avid readers all their lives started reading to escape painful situations in their childhood that their brains were not developed enough to process. I have said before that I grew up in a very violent household so that is one of the things I was reading to escape.

To cope with my mum’s rapidly deteriorating health I turned to books for some much needed relief. I read at any opportunity I could and it was in 2015 that I cultivated the habit of reading during my lunch hour, something I still do to date. There were days I would get to the hospital and my mum was asleep so I would curl up with a book and read while I waited for her to wake up. For as long as I read I was able to leave my problems behind in the “real world” as I lost myself in the author’s world. I came across Popsugar’s 2015 reading challenge in mid-April, meaning I was almost four months late, but I still managed to read 52 books that year. The next two years I did the reading challenges from Goodreads and read 55 books in 2016 and 54 books in 2017.

You can only read for so long though and as soon as I put down my book I was alone with my pain and my ugly emotions once again. One day I could not take it anymore and I had an honest conversation with my kid sister and admitted that I was drowning. I told her I will need some help on the dark days I cannot summon any positivity and good vibes. Days I just need to get drunk, pass out for a few hours and only do the final turn at 6 a.m. when I am getting ready for work. And bless her heart she came all the way through. We made a pretty good team, and I was able to enjoy my relationship with my mum more as the onus of being her caregiver did not lie solely with me.

Whew! What a post right? For some time now I had been feeling like I was overdue for a long cry and it finally happened. Yesterday I cried writing this. Like, full on ugly crying before 8 a.m. as well as later on in the evening. For starters I have a lot I am anxious about at the moment. Then as I said in this post telling my mum’s story will retraumatise me and writing today’s post did exactly that. Truth be told as soon as I identified the 13 themes that would make up JS Kicking Cancer’s Ass, I knew writing The Caregiver and The Anticipatory Grief would take a lot out of me. And I was not wrong because yesterday for the first time ever in my two years of blogging I broke down midsentence to cry. I have cried before while writing a few The Grief Diaries posts before but never have I ever paused midsentence just to cry. For anyone who is curious this sentence I am referring to:

I will never ever in my life forget the pain in her face and voice the day she told me, “I cannot even take myself to the toilet. Lwile I have lost my dignity.”

Writing it transported me back to 2014 and I could feel my mum’s pain as if I were experiencing it in real time. So I broke down and as I did I noticed that I was crying just like my mum used to. My mum was not ati a crier but when I was younger she would often cry when her husband beat her up. She had this way of crying sometimes … you could not easily tell if she was laughing or crying. Quick aside, there were also times she would laugh in a way that you could not easily tell if she crying or laughing. Something my sister wrote about in her tribute following my mum’s death on December 13, 2017 at 1:10 a.m. When I realised I was crying like my dead mum about my dead mum it made me cry even harder.

I cannot remember the last time I wanted a shot as badly as kuliko jana. Sad fact: I learnt to love that song from my mum 😦 I spent a good amount of time reliving this particular chapter of my life in order to write today’s post so by the time I put aside my laptop yesterday I really wanted a shot to take the edge off. But I only had wine in the house because sijui where the chocolate mint flavoured Mistral has disappeared to. I simply cannot find it anywhere!! Ugh!!

2014 and 2015 were the hardest years of my life and I spent most of those years angry and in tears over my mum’s debilitating health. But as one of my OG readers Kui told me:

Sharing authentically and without apology is courage in every aspect of the word! I hope you find healing through accepting and sharing your story Val ❤

It has not been easy, but I have made significant strides in my journey towards healing. I have worked, and continue to work, hard to let go of the painful parts of my story that I neither have any control over nor can I change no matter how badly I want to. Some days are easier than others but as my therapist tells me recovery is an everyday process. There are days I relapse but that does not mean that I have failed in my journey to find healing. It just means that recovery, similar to grief, is not a linear process.