I have always wanted to start writing about my dad’s life
and share his story with the world, I have just never known where to begin. I
think the reluctance has been that once you finally sit down and acknowledge
something for what it truly is, it is then when it becomes more real to you. Human beings have a natural
tendency to avoid and deny many traumatic things that happen to us simply
because ignorance is bliss and the truth is, that sometimes it is nice to live
in a bit of an illusion that everything is ok. Everything will be ok but eventually things do
catch up with you and as much as avoidance can take us away from a situation,
sooner or later there comes a point where acceptance is simply the only
alternative. My dad’s story is nothing short of devastatingly heart-breaking
and one that I still struggle to comprehend sometimes. While updating his last moments with us,I will begin my journey of writing a book
about his life which will in turn be a way of understanding his illness better
and the impact it has had on me along with my family members. For now, its about letting those who are
interested have a glimpse into our world and for me to take note of things that
have somewhat just become a regular occurrence to me. To give a brief context, being
able to give an exact day, time, month etc. of when my dad got sick is
impossible. To be frank I can hardly recall what it was like to know my dad
when he was normal. Of course, I can recollect memories of him coaching soccer
and taking me to school, but its been a very long time since I remember what
it felt like to have a father figure. My dad and I never had the best
relationship to begin with. I remember throughout my youth having a lot of
anger towards my dad. His energy and time was and has always been invested in
soccer. That was his life, his pride and joy. I never doubted that he loved me,
but I always knew deep down he would choose his work 99% of the time. I firmly
believe that the move to South Africa took a massive toll on my dad, one which
he simply could not embrace. America was my dad’s safe net, his comfort zone
and source of security both financially and independently. He had his head-coaching profession which to
an extent he thrived in, but it certainly did not challenge him the way he
needed to be as a 48-year-old. Life is all about choices and the choices we
make define where we end up. My dad had the choice to embrace the unexpected
and challenge himself to aspire for more or to simply give up. Unfortunately,
he chose the second option. He gave up on South Africa before he could even
give it a chance. He was not interested in embracing the new, exciting
adventure and life that my incredible mother provided us with. A clean slate, a
fresh start and a chance to completely re-invent our lives. If there is one thing I have learnt in my 20
odd years of being around is that you cannot make someone want something they
don’t want, they must want it for themselves no matter how much you want it for
them. We all wanted my dad to pursue a new and stimulating career in soccer for
the youth of South Africans, but he was not interested. His heart and soul
remained bound in the USA. So, to put it
simply one day my dad was coaching soccer, taking leadership and control as he
did best and the next we were being told that he was having to be removed from
the sports facility centre because he could no longer remember players names
and co-ordinate his thoughts and motions in a coherent manner. I will never
forget the day he arrived back from America after being diagnosed, I looked at
my dad and could hardly recognise him, I did not want to recognise him as his
new self. When I was 13 he used to drive us to school in the mornings and the
one day the sun was shining brightly, and he suddenly almost instantaneously
just smashed into a cement boulder on the road! I was absolutely mortified and
so embarrassed. After that I started noticing that when he drove he would swerve
on the road and often drive on the other side without even noticing. I felt
extremely uneasy and unsafe with him in the car. Another incident occurred
during my grade 9 production of Grease the musical at our high school where he
completely just walked off the edge of the balcony leading into the main hall.
He walked straight off of it as if it was continuing on into the distance, not
noticing the steps on the left and right hand sides. These were all before his
diagnosis but we never really acknowledged something was wrong. And then....., he was officially diagnosed
and so the years went by. I’d say the
first 3 years were more of an adapting phase starting to ease into the illness,
unable to drive and preform fatherly functions but still able to formulate
basic speaking patterns, coordinate his moments around the house and somewhat
have a sense of belonging. For me, I
basically acted as if nothing had happened and continued with my life. I forced
myself to stay extremely busy and preoccupied with school activities,
socialising and external activities. I seldom was at the house and when I was,
I did not surround myself with what was happening. I guess a part of me was mad but also, I
simply was not going to allow this to define me, my life did not have to change,
I had many plans and dreams that I was going to follow through with and my dad
did not have to be along for the ride. I guess I detached myself from the whole
situation as it made me feel like my life was still normal. Very few people
knew what was really happening, I guess in a way I also did not fully embrace
what was happening. I was very intolerant and irritable towards my dad simply
because here I am a 17-year-old who liked to believe I was very independent and
self-assured and now I must watch the person who raised me become so dependent
on everything and everyone. I just wanted to shake him and be like “get your
shit together already!” boy if it was only that simply. And then my matric year
came and I had one of the best years I could have ever wished for. It was a
year of reaping in every which way. I was so consumed in everything and my
little world, that I lost sight of everything that was really happening around the house. For that year it worked, and I coped very
well. Once I had matriculated things started to drastically change. After
having such a big high and feeling like a massive fish in a small pound I
entered 2017 not realizing how much change was about to come my way. I was
starting a new chapter in my life, moving out the house and starting University
at Stellenbosch studying my absolute passion, dramatic arts. Lucky right? It
was most definitely a year with many challenges and changes but that provided
me with so much growth and self-development as a person. As much as I was able to escape the trauma
which my household contained I was also able to take a step back and reflect on
what was busy happening in my life. Coming home on the occasional weekends
helped me to really embrace my father’s disease for the first time and start to
accept its impact on my family life. I would be lying if I said it did not
affect me but on a personal level I do keep a fair distance and when I am in
Stellenbosch, I leave that part of my life at home. It’s a very difficult situation you find
yourself in, this battle between not putting your life on hold but also
acknowledging that things are so different. Going out for a simple supper is
not something my family can do nor go on a family vacation or even to friends
for a casual braai. It is often just too much stimulation for my dad. Having
people or friends over is always a worry because you can never fully be at ease
wondering in the back of your mind if he needs to pee or will he have an
outburst. In the past year the deterioration
has been radical. My dad is completely and utterly dependent on us for his
every basic need from bathroom related needs to eating, cleaning and washing
himself and all his co-ordination throughout the house. He literally cannot do
anything on his own anymore and he is 60 years old. It is absolutely devastating,
there is no other word to describe it. The saddest thing is to just watch
someone’s life simply no longer really have any meaning to it. To watch someone,
spend day in and out fighting a losing battle, where his days consist of waking
up eating the occasional meal, listening to music and watching tv, then going
to bed and so the cycle repeats. In the last 3 weeks we as a family have been
exposed to a whole new chapter in this horrific mind controlling disease. A
sense of fear and UTTER confusion has taken over my dad. He has begun to start
talking to himself non-stop. He has created made up figures for himself who he
often refers to or speaks to. He can talk for hours on end babbling on about
either this fictional character, his friends in America or us, his family. His
speech patterns are very staggered and often make no sense. They range from him
talking about being scared or needing to protect someone to then sudden bursts
of laughter. I am no psychologist or specialist when it comes to mental illness
but a part of me wants to believe that the part of his brain that is still
semi-aware of what is going on is fighting that part of him that is ready to
fully embrace this illness. And so, he has these jumps between his conscious
awareness of what is happening to that of his delusional world where all these
different things are happening within his mind that none of us can begin to
understand. In the last few days he has begun to stop wanting to eat and being
frightened of the complete unknown. I guess he is not ready to accept the
illness and is fighting at what last sense of belonging and self-recollection
he has. He talks in his sleep and complains about people stealing his clothes
and often speaks in the 3rd person..
