Coming face to face with
one’s own fragility is certainly not easy, but maybe there are ways to go
beyond this tough reality.
As my health has deteriorated further over the past two years, I have
to yet again come to terms with actions I can no longer do. Previously
manageable activities, such as going out on my mobility scooter, have not been
possible since autumn 2017. Also actions like having a shower independently,
getting dressed, preparing meals, and even doing my art, are no longer within
my reach.
In the early years of life with M.E. 20 years ago, these were not
possible either, but over the years I had seen a slow recovery to the point I
could, kind of, look after most of my basic needs. This all changed again from 2012
onwards as a result of another severe viral infection from which I never
recovered. To be honest fulfilling a very, very long held dream to attend
college one night a week in 2013, and traveling to the UK in 2018 to give talks
about puppetry and disability most likely did not do my physical health much
favours. Both made me quite ill.
But.
I feel the need to keep living, to not totally succumb to being
ill.
I am more than M.E.
I am more than my disability.
I am still me, and find strength in my fragility.
Choices
The Disability Studies course at UCC (2013) was a logical progression
in my intellectual as well as creative development. I loved the studies. I
loved being at UCC. I loved the world it opened up for me. My assignments,
where remotely possible, were focused on disability arts. I read so many books,
then and since by others who found themselves (suddenly) living life as a
disabled person. I was very interested in those writers who explored
invisible chronic illnesses, like M.E.
Many quotes from the books I read then and subsequently made it into
my Artist Book ‘Into the Light’. (See
HERE for author/book list of references used in my book)
The studies also indirectly lead to facilitating the Life Outside the Box Disability Arts Puppet
Project with my fellow members at the IWA. This project brought the invite to give talks
at the first ever Broken Puppet Symposium
on puppetry, disability and health in 2017 in Cork. This in turn led to
invites to give talks in the UK the following year. Over a month I met
some amazing puppet makers and puppeteers, and others involved or interested in
puppetry and disability. Although I had constant support from friends, this
journey was physically too much. Way too much. But it was a journey of a
lifetime, and I am glad I did it! My creative thought process has evolved as a
result of this adventure.
Budget management
I often make the analogy of having the
equivalent of €100 in the (energy) bank per day. Staying within this budget is
safe. Spending a bit less, will be a saving, a storing up of a tiny bit of
energy. But going over the limit one ends up in overdraft. Overdraft is
expensive.
Using only half the allowed budget the
following day can pay the overdraft back.
Adding more and more to this overdraft
by keeping going, the ‘bill’ becomes so big that it would take months and even
years to pay it all back. Being in a
constant overdraft can lead to bankruptcy. Those two big decisions of college
and travel lead to my partial bankruptcy.
But.
There is a Big But.
These were conscious, carefully evaluated choices I’ve made. Yes I
was aware of the risks, but also looked at the benefits. Taking strength over
fragility. Physically it was not beneficial. However, I most definitely benefited from both in terms of my mental wellbeing
and my creative development and for assuring contact with the world outside my
four walls.
Unfortunately there are other elements which lead to the most
recent decline in health: a stroke like illness a year ago, which affected my
speech and swallowing, and further lowered my mobility, and increased the need
for care. But the two-year long fight with the HSE (our health system) to obtain support to remain
living independently at home, and having the right to leave my home with
support had possibly a much bigger impact.
I finally got results, but I am convinced that this senseless battle with the HSE caused further decline, mostly on an emotionally and mental level, but as all
our health goes hand in hand, it probably also impacted on my physical health
and ability. Every activity takes energy, including mental activity.
Fragility
This senseless battle showed the absolute fragility of my existence. The
fact that the care system is set up in such a way that I, as ‘client’ have no
real say over my care: who comes into my home, when and for how long, and what
tasks can be performed.
I lost the autonomy over my life.
My health at this point in time makes me pretty much housebound. The
reality is that I cannot safely leave my home on my own, or have the ability to
do so. I also had to adapt to the fact that I require help with very personal
care needs.
After two years fighting the HSE I now have a seven-day a week Home
Care package consisting of good hours. A few weeks ago I was finally ‘awarded’
the right to also have support to leave my home with support.
Along the way I have indicated to the care agency (who provides the carers, but is not in charge of the amount of hours) which carers I am comfortable with, and those I would not like to
have enter my house ever again. Taking back a little bit of control.
All this fighting for basic care and basic living takes huge
resilience to keep speaking up, and standing up for my rights. It took all my
writing energy to highlight the ridiculous situation I found myself in.
But!
There is a But again.
Strength
Going public with the HSE struggles lead to some amazing comments
received from total strangers about my writing ability, for example:
“I find your writing on disability/illness give a really good
insight into living with a condition, even relatable for someone who doesn't.
Other writers rarely achieve this. They lack compassion for the reader.”
Now the main HSE issues are resolved (few minor things to sort out) I
hope to start writing again for fun, and to share the other stories of (my) life
with you. I hope I can live up to the kind quote above.
Today I meant to write
about an achievement of a different kind… to sit on a beach… but that will now
have to wait till another day.
Thank you for your continued support and friendship
Corina
