Multiple Sclerosis and Change - Introduction (1/4)
I have received my MS diagnosis in the end of 2016 after having had invisible
symptoms for more than a decade – the fatigue, the dragging, the loss of balance at
times, my slower speed (no matter how fit I was – yes drama school and physical
exercise go hand in hand, my nerves were just not able to transmit the signals as
quickly as with my healthy classmates I realize this only now) and the tight and stiff
muscles. I thought they were due to my inability – to my lack – to something I was
actively doing wrong (oh the preconceived subtle subconscious messages
transmitted through our ableist society) so I have basically ignored my symptoms and
pushed through, applying every possible health advice I could find. Little did I know
back then, that it was not related to some kind of personal shortcoming or of will
power but to my immune system silently attacking my central nervous system.
Reflecting back, I feel as if we live and breathe ableist notions without giving it a
second thought – we simply do not challenge the competitiveness, the ideas that we
as individuals may simply never ever be good enough, that we always have to do
more – to be more- to be “good” enough. The truth, however, is that we are enough:
the soft, kind, imperfect beings and that is what makes us human with all our failures,
mistakes and experiences. It is as simple as that – in an odd way magnificent and
heart-breaking at the same time. All a matter of perspective?
Well fast forward past the feelings of inadequacy, of “being wrong” – my body
decided to make things visible in 2015. Took ‘em about a decade to come to that
point, I really should fire the manager for not reporting the malfunction earlier. So,
prior to that episode which triggered a few more invisible and silent relapses until my
final diagnosis October 2016; nobody knew, nobody noticed, and how on earth
should I have known? I never knew a life where fatigue did not exist – due to MS and
exacerbated by hypothyroidism, another condition which took forever to be
diagnosed and for which I finally received treatment 10 years after its onset. But hell,
like they say – you cannot change the past, but we have full responsibility over our
future and maybe even more importantly our present – within a set of limitations of
course; nevertheless, we are always free to choose. Choice is always a given- even
in the midst of the most difficult adversities. Here, I’d like to point out the work of
Victor Frankl, a psychiatrist and holocaust survivor who developed logotherapy in
response to his experiences in the concentration camps. Do have a look – I promise
you will not regret it. Anyway, I got side-tracked there. My mind is jumpy at times–
concentration troubles are an MS symptom too by the way - along other cognitive
issues involving short term memory for instance; so, one thing at a time is a practical
approach as well as a million post its to make me remember stuff (works wonders –
skills I acquired through my experience as a PA: a valuable lesson for my MS
management; and I highly recommend them).
The rambling aside, I think what I am trying to say, is that life is not easy – and we
get thrown into circumstances of no fault of our own; yet we somehow must learn to
deal with them. This often takes time and patience and practice – and is definitely not
a walk in the park. Challenges and suffering are an inherent part of human nature.
Enough philosophers have worked around the theme– thus not an innovative idea of
my own. Still, if challenges and suffering are inevitable so is growth and the human
potential each of us carry inside of us – we just need to take time to groom it and to
let it blossom; I am an idealist, a dreamer – a practical one though as I do strongly
believe that my attitude and my outlook on life have forged me into a source of
resilience – with a few cracks here and there. Still cheesy, I know or is it simply that bit
of post traumatic growth which pushed me in the right direction? I feel an insatiable
need to rebel against injustice. Nevertheless, it is important to remember that change
happens one starfish at a time or as I prefer to say one mind-set a time. We may not
be able to change the world in a go– but we are all perfectly capable of making a
difference; believe in it. I do – and together we can.
symptoms for more than a decade – the fatigue, the dragging, the loss of balance at
times, my slower speed (no matter how fit I was – yes drama school and physical
exercise go hand in hand, my nerves were just not able to transmit the signals as
quickly as with my healthy classmates I realize this only now) and the tight and stiff
muscles. I thought they were due to my inability – to my lack – to something I was
actively doing wrong (oh the preconceived subtle subconscious messages
transmitted through our ableist society) so I have basically ignored my symptoms and
pushed through, applying every possible health advice I could find. Little did I know
back then, that it was not related to some kind of personal shortcoming or of will
power but to my immune system silently attacking my central nervous system.
Reflecting back, I feel as if we live and breathe ableist notions without giving it a
second thought – we simply do not challenge the competitiveness, the ideas that we
as individuals may simply never ever be good enough, that we always have to do
more – to be more- to be “good” enough. The truth, however, is that we are enough:
the soft, kind, imperfect beings and that is what makes us human with all our failures,
mistakes and experiences. It is as simple as that – in an odd way magnificent and
heart-breaking at the same time. All a matter of perspective?
Well fast forward past the feelings of inadequacy, of “being wrong” – my body
decided to make things visible in 2015. Took ‘em about a decade to come to that
point, I really should fire the manager for not reporting the malfunction earlier. So,
prior to that episode which triggered a few more invisible and silent relapses until my
final diagnosis October 2016; nobody knew, nobody noticed, and how on earth
should I have known? I never knew a life where fatigue did not exist – due to MS and
exacerbated by hypothyroidism, another condition which took forever to be
diagnosed and for which I finally received treatment 10 years after its onset. But hell,
like they say – you cannot change the past, but we have full responsibility over our
future and maybe even more importantly our present – within a set of limitations of
course; nevertheless, we are always free to choose. Choice is always a given- even
in the midst of the most difficult adversities. Here, I’d like to point out the work of
Victor Frankl, a psychiatrist and holocaust survivor who developed logotherapy in
response to his experiences in the concentration camps. Do have a look – I promise
you will not regret it. Anyway, I got side-tracked there. My mind is jumpy at times–
concentration troubles are an MS symptom too by the way - along other cognitive
issues involving short term memory for instance; so, one thing at a time is a practical
approach as well as a million post its to make me remember stuff (works wonders –
skills I acquired through my experience as a PA: a valuable lesson for my MS
management; and I highly recommend them).
The rambling aside, I think what I am trying to say, is that life is not easy – and we
get thrown into circumstances of no fault of our own; yet we somehow must learn to
deal with them. This often takes time and patience and practice – and is definitely not
a walk in the park. Challenges and suffering are an inherent part of human nature.
Enough philosophers have worked around the theme– thus not an innovative idea of
my own. Still, if challenges and suffering are inevitable so is growth and the human
potential each of us carry inside of us – we just need to take time to groom it and to
let it blossom; I am an idealist, a dreamer – a practical one though as I do strongly
believe that my attitude and my outlook on life have forged me into a source of
resilience – with a few cracks here and there. Still cheesy, I know or is it simply that bit
of post traumatic growth which pushed me in the right direction? I feel an insatiable
need to rebel against injustice. Nevertheless, it is important to remember that change
happens one starfish at a time or as I prefer to say one mind-set a time. We may not
be able to change the world in a go– but we are all perfectly capable of making a
difference; believe in it. I do – and together we can.
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