Strength in fragility

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. 

This story can be read on the ME Advocates Ireland Blog and in short in Irish Examiner  newspaper.

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

Housebound but homeless

Page from Hatched now available as e-book 

During my first year of illness, I found myself housebound and  facing homelessness at the same time.  I had one night left in rented accomodation. This experience will never leave me. 

In the Ireland of today homelessness is a BIG problem. It breaks my heart that people are sleeping out in the cold. That some feel that this is safer to be outside than staying at a dedicated hostel, out of fear of those who stay there have used drugs or alcohol.
Homeless people sleeping in doorways of shops, where all the commercial Christmas 'stuff' is displayed in all it's glory behind them.
A bigger contradiction can not be found.

Google 'Irish homelessness' and about 518.000 results come up...

My own story with a 'brush with homelesness' is that in the first year of being ill I staying in friend's houses until I found a flat in the centre of town. The drawback was that it was upstairs.
I used only the first floor and had my bed in the living room. But it was warm and I was in town.

The local librarian Evelyn Coady shared this memory at the Hatched Booklaunch in Lismore in June of 2006: "Dropping an audio book in to Corina back in 1999 I was horrified to see the wheelchair abandoned at the bottom of a steep staircase – Like Rapunzel incarcerated in her ivory tower Corina was trapped – trapped in a body unsure how to function – trapped – trapped full stop.

“Housebound but Homeless”

I was under the impression that I had this flat on a long term basis. But the landlord came up one day and said that he needed it for a holiday let. More money no doubt for those few weeks, but the rest of the year the place would be empty. 

My friends and carers were angry. Very angry. 

My belongings were packed up around me, and plans were made to bring me to the county council offices to have me sleep in their hallway, out of protest. Other plans were to stay at a B&B... There were various Council houses vacant in the town, one even with a ramp for wheelchair use... Empty for at least a year... But due to local elections no houses were given out until after the elections. To make a long, painful story, short, I received a letter in the post the day before I had to vacate my flat. My new homehelp was with me when the post arrived, and as by miracle, my new home was across the road from hers.

Every time I read or hear about homelessness, I recall this event. 

Homelessness should not be as big a problem as it is. Even again today in this little town where I live there are empty houses. Some for months, maybe a year... I can imagine that this is not just happening in our town.

There are many organizations in Ireland to support people who are homeless, or at the brink of becoming homeless.  For example Focus Ireland  or the Simon community 

Part of the Bag of Hope

I am not able to help them in a 'hands on' way, but every year I make donations in stead of buying gifts. This year I also made a Bag of Hope, a rather large version of the more familiar Shoe Box Appeal. I filled a bag with a full set of clothing, shoes, socks, jacket, hat and gloves, toiletries, book, notebook and pens, a few snacks, etc. A reader of my Facebook Post, created a bag too. She even included a small sewing kit, and a colouring book. Another friend brought the bags to Cork.
I hope that these small gestures made a bit of a difference in someones day.

Another way I hope to do my bit this year is by making donations from sales of my book. 

See the Little Wings Christmas Appeal on how to get involved,

 if you would like to help me help others.

I feel immensely fortunate to have a house.

To have a roof over my head.

To have clothes, shoes, food, heat. 

To have a warm bed to get into.

Gratitude

is too small a word 

for today.

homehelp in Ireland

This article has also been published on thejournal.ie  Friday 23 May 2014

there are some great comments from other people dealing with issues with HSE 

please read, it make your heart boil.

Early April a request was made for home help and carers allowance. As of today, the 20th May I hadn't heard anything from either of those application. I rang the public health nurse who had made the application for home help on my behalf. Apparently she had received a letter on 24 April that my application had been refused. That is all, the letter said. Refused. She had assumed, rightly I think, that I would have received a letter too. Not so.
I am furious and disappointed that nobody bothered to tell me that I was not going to get homehelp. 

Does the HSE think that it is a novelty to get home help? That it is easy to acknowledge that one cannot look after oneself any longer? Let me tell you is the worst thing of being chronically ill. To acknowledge that you have lost your independence. To acknowledge that you need help with the most basic daily needs. To have strangers coming to your house. Does the HSE think that anybody in their right mind in Ireland would request homehelp and willingly go through this humiliating experience just for the fun of it?

Being ill is hard. Having to fight for every basic human right is much, much harder. You hear heart wrenching stories everyday on the radio.

It feels a bit like there is somebody sitting in an office with a pen and just decided to tick the box 'refused', without any further explanation necessary to the person who made the request, and who needs the help. Maybe this is not a fair assessment of the public servant, but that is what it feels like.

Having a home help is not a novelty. It is an unfortunate necessity.

I'm furious that the government for not looking after the very people who need the care of the state the most. I nearly screamed at the television when I heard the news that the government was talking about 30 million being spend on a sports stadium in Cork, money given to the GAA. Don't have enough money already? Both Enda Kenny and Eamon Gilmore were so proud to make this announcement. They were glowing. 

In the meantime people are losing their medical cards, they don't get homehelp, carers allowance is harder and harder to get, young children in wheelchairs which they have outgrown, are being told that there is no money for a new wheelchair, or physiotherapy, or for speech therapy... To to attend a daycare.

Having people on trolleys in A&E is becoming the norm. Waiting lists to see a consultant are months, even years. It took me nearly two years and several letters, and degrading tests to receive a mobility scooter from the HSE. At least this time round they didn't say that 'a motorised aid would make me lazy'. That was a plus!

I am nearly sixteen years in this 'game' of dealing with the so called 'health' board, and have seen a deterioration in the care provided by the state.

I am not looking for easy handouts. I am too proud to be able to look after myself as best I can, but there are times I, like many others, do need the support in order to take our meaningful place in society.

This article has been published on thejournal.ie 

ps. As I no longer have a Facebook or Twitter account (find it all too confusing...) but you think this Blog deserves to make a presence there, please feel free to link it on your page. Thank you!