Sitting
at the fire, cold beer in my hand, watching my children arguing over who
has the best hot-wheels, I am suddenly reminded again of how quickly life can
pass us by. In a year or two, they won't even remember what they argued about.
And a lifetime from now, tonight will only be a faint memory to them, if
any.
Remember!
My dad
passed away last month and thinking back on our life together, I know that we
argued a lot, at times because we were too similar...and other times because we
did not see eye to eye on a number of things. The age old issue of the young
that thinks he is wise, without life's experience to back him up, and the
experienced elder, without the ability to accept and conform to the changes
that life bring. On the one hand the younger generation that believes that what
is happening in this new age, cannot always be solved with the knowledge of a
few decades ago, and on the other hand the elder that is not able to accept
that what has gone before will not always be relevant today.
In retrospect
it is easy to see now how futile those arguments often were, and how, if we had
just taken the time and listened to each other and tried more to understand
where the other was coming from, we would have been able to build more
memorable memories together. After my dad had a stroke a couple of years ago,
he never fully recovered. He had no physical impairments, at least not in the
first couple of years after the stroke, yet his short term memory has been
affected. This became more and more challenging, especially towards the end
when he started to lose his ability to communicate with those around him.
I
remember my dad as being a proud man. From the age of 14 years old he would
take the produce to the market, driving at night to miss the traffic officers.
My grandfather passed away when my dad was 8 years old, so himself, my
uncle and aunts had to help my grandmother to work the lands and keep the farm
going. He did not have anyone else that was able to deliver the produce, so he
had to do it himself. Eventually the cops realised that they would not be able
to prevent my dad from doing this and they arranged that he would be able to
get a special license - something that would never be possible today. When they
had to sell the farm, he joined the same traffic cops that was so lenient
towards him, and he wore that badge with great pride. He eventually worked
himself up through the ranks and invested himself in his work wholeheartedly.
The
hardest part for him, of surviving the stroke, was probably the day when his licence
was taken away from him, and he had to face the fact that he was not able or
allowed to drive any more. I think that broke him. It was nobody's fault. It
was done to protect him, as well as those around him. Unfortunately, that is
the path that a lot of people have to take as they get older.
My dad
was a humble man, always believed in, if you cannot say something good about
someone else, then you rather shut up. He lived for his grandchildren, and
regardless of whether any of us 3 sons screwed up and even rejected him or
forsake him, he was always there for us, a safe haven to where we could return
without being judged. There were many a time during the past few years where I
longed to be able and sit down and talk to him and ask for his advice, when I
was not able to because of his inability to communicate. Something that I
never thought that I would need or want when I was younger. I always felt that
we had no connection growing up as he was always working, and it often felt like
I had to grow up alone after my mom died when I was 13 years old. It was only
later in life that I realised that it must have been hard for him to take care
of a teenage brat, while trying to deal with the pain and sorrow of losing the
love of his life, and still keep the lights on as well. Yet he never backed
down, and he never projected his own suffering, pain and grief onto us.
Liam and
Malan did not take it well when he passed away. Malan would cry uncontrollably
and Liam put on this strong facade of not being phased by the loss that he just
experienced, something that he had not experienced before and therefor did not
know how to deal with this immense pain and heartache. Much like myself, when
my mom passed away. Teresa lost a father and was broken. Myself? Malan asked me
about a month after my dad passed why I never once cried? How do you explain
this to a twelve-year-old boy?
It was
not that I did not love my dad. I did and I missed him tremendously, but I
think (apart from the emotionless effects of the medication) I have had time to
say my good byes or process the inevitable when he was still with us. The last
couple of years was tough seeing him in a state where his health was deteriorating
more and more, knowing that we could not do anything to prevent it. I often
felt that, looking at him, that what I saw was not living, not for him, nor for
my stepmom who had given up everything to care for him, putting her own life on
hold. I think being there when he passed away, with the last memories of him responding
to Malan en Teresa's voices and the touch of their hands, gave me inner peace.
He did not struggle at the end; he did not let out a big final last breath. He
just quietly passed on, peacefully. And the fact that he had no pain anymore as
he entered the throne room of God, was comforting.
On the
one hand I would have loved to talk to my dad about my fears when I was
diagnosed. On the other hand, I am thankful that he never knew about CRPS and
my struggle with this disease. Although a reality, I don't think any father
should lose a child or experience their children suffering with such a horrible
disease, causing them to feel helpless. This has got nothing to do with the
support system, this is just my perception. As a dad I would lay down my life for
my kids, if it meant preventing them from having to suffer.
Why do I
share this? I don't know. Perhaps it is a way of working through this event in
my life. Or perhaps it is because looking at my boys as they argue about
hot-wheels, I suddenly realised how short life really is. I don't want my boys
to remember me as a distant dad that was constantly in pain, not able to make
memorable memories with them. When I get to that point where I may become paralysed,
or completely shutting down (not saying I would, but no-one can outrun time and
life), and my kids are sitting next to my bed, what will they remember? What
will they carry with them when I am not there anymore? Will they have absolute
peace within, knowing that I am in a better place?
No-one
wants to talk about death, yet no-one can outrun it. This is the one thing in
life that is certain, that we all are going to die, eventually. What do we do
with the time that was lend to us for this short period?
The
aftermath
Following
my dad's passing, it was as if Chuckles was feeling my loss as well. Perhaps
the fact that I was not able to show emotion, filtered down to him, causing him
to gorge himself in the emotional distress that was to be expressed through
burning, extreme pain and swelling. After a short hiatus, Chucky stepped back
in his full glory, and to be frank, he has not left since. This led me to read
up about Impaired Empathic Abilities among Patients with Complex Regional Pain
Syndrome (Type I).
The
purpose of these studies was to assess correlations between empathic abilities
and multidimensional aspects of pain. But what is empathic abilities?
Researchers define it as "the ability to sense other people's emotions,
coupled with the ability to imagine what someone else might be thinking or feeling
or the ability to understand the experiences and feelings of others outside of
your own perspective." Although the studies mainly deal with the ability
of patients with CRPS 1 to show empathy towards other people, it did make me
think of my own ability to feel emotions and the effect that it has on Chucky.
A phenomenon called embodied emotion.
Embodied
emotion suggest that emotions have the ability to affect the body. A person may
be aware of these emotions, or these emotions could be subconscious, thus being
outside a person's awareness. The challenge being when these emotions are subconscious,
as they can become difficult to manage and therefor continue affecting the
body. Researchers suggest that this has to do with how the brain and the
nervous system process emotions. These sensations in the body functions as
signals that help people to become aware of feelings or emotions that require
their attention - a theory known as the "somatic marker hypothesis".
Reading
up on this really resonated with me, as this was exactly what I was
experiencing. Thinking of how I am stripped of emotions, or rather of the
ability to feel emotions, even with the death of my dad, and how Chucky started
to flare-up at exactly the same time, started to make sense. In the past I have learnt
that, usually before something like the flu or some physical illness or event,
Chucky would start to flare, signalling that something was brewing. In the same
way it seems that he had decided to be the harbinger and/or outlet for my
emotional distress. It is as if my brain and my nervous system is channelling
my emotional distress into my hand, as a way to create a release mechanism.
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I have
reached out to some hypnotherapists in the area to find out if they were able
to assist with hypnotherapy to treat CRPS, and how they would be able to do
this. The results were as follow: Some of them claimed to be able to assist
with and even treat Chronic pain successfully, yet speaking to them I soon
realised that they did not know anything about CRPS, and after I explained what
CRPS was, they confessed that what they understood about Chronic pain, did not
even start to comprehend CRPS. Clearly their understanding of Chronic pain did
not include CRPS.
A second
group claimed that although they did not know about CRPS, they believed that
after the first session, they would be able to build a baseline from which they
believed that they would be able to treat CRPS. Perhaps even cure it. RED
FLAG!!!
A third
group immediately confessed that they did not know what CRPS is, although they
have helped others that suffered from chronic pain, but that they were willing
to study up on CRPS and learn more about it. They also suggested a first
session to determine a baseline, but more so to see whether hypnotherapy would
indeed be able to assist or not, giving no guarantees, but offering to
investigate the possibilities with me with an open mind.
I am yet
to try this, and if I would, it would be with the third group, as they seem
more likely to take an investigative journey with me, rather than offering a
false cure. Hypnosis is explained as "a changed state of awareness and
increased relaxation that allows for improved focus and concentration."
The better health channel explains as follow: "Some researchers believe
that hypnosis promotes particular brain wave activity that allows the mind to
take in and adopt new ideas, while others suggest that hypnosis accesses the
'unconscious mind', which is more open to new ideas than the rational
'conscious mind'."
So in
short, hypnosis seem to be a more in depth way of practicing self-awareness.
Unlike what is portrayed on television, the hypnotherapist that I have spoken
to assured me that you are also fully in control and can get "out" of
the tranced state whenever you want to. There are even courses on how to do self-hypnosis.
Have I
tried it yet, either of them? No. Will I ever try it? Most probably yes, even
if it is only to have the experience and to see how it would be able to assist
me in my treatment of CRPS. What do I have to lose? Even if it will be able to
help me with dealing with my emotional distress or lack of emotions, then it
would definitely be something to explore further.
Any
treatment or coping mechanism that helps me to keep moving forward, is worth pursuing.
And if it means less relying on medication, and regaining more control over
this disease, then it is a win-win.
Retreating
to my inner self!
By now
the kids had started to settle down a bit. Still playing with their hot wheels,
they managed to find a way to play and work together, building tracks, making
ramps and challenging each other to do better. In the warm glow of the fire, I
look at Chucky, thinking about the rough start that we had three years ago, and
how far we have come. At least it has been a while since I wanted to put him
into the fire - fighting fire with fire. I think of my dad and how much we
could have done differently, but then I am also reminded of those specific
events that were memorable, some of them that I have almost forgotten about
over the years. I think of my own brothers, how we do not really talk any more,
well the one at least. Not everybody is destined to be in your life forever,
not even family. Some were meant for a season, while others were meant for
life. And that is fine. It is life. I look over at my kids again and pray that
they will stay close for life.
Looking
at my kids, it is clear how easily we can remove ourselves from life. How many
of us have become spectators rather than participants in our own lives? For me
CRPS has done that, although it is probably not fair to lie everything at the
foot of CRPS. It is like saying "the devil made me do it" - we often
give the devil too much undeserved credit for bad choices that we often made
ourselves. In the same way, it has become easy to blame everything bad that
happens on CRPS. And yes, perhaps for a great deal, CRPS is to blame, but I
still have the choice of how I will react to the curve balls that this disease
throws at me. And looking at my kids I realise that the best way to convey this
message to them, is to have them see me as someone who never gives up, just as
my dad did when my mom passed away.
Thanks
dad for showing me the way! And thank you, the reader for allowing me to share
this part of my journey with you.
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