The first time I had this thought was lying in bed in Southview Road, Weymouth, in 1972.
‘I am Paula Sibley and I’m four years old, but who am I and why am I here?’ Looking back at that morning, on many occasions since,I have wondered what was it that made me ask that then? I remember wondering who my parents were & why were they my parents?.
Several times since I have had to stop and think again ‘Who am I?’.
After my divorce I was declaring to myself ‘But I AM Paula Kenevan!’ which is why I kept my name rather than revert to my maiden name, until I married Greg and ‘became’ Paula Carnell.
It isn’t just about names though. From an early age I became ‘Paula the Artist’, which I was very happy with. I was proud to be defined by my skill that was also my job. I felt very priviledged that I could earn a living from my passion. Art was me and I was art so that was fine. As I grew older life became more complicated, to some I was ‘Possi’ which was the name of my business. I was also a wife and then a mother.
When my first child was born I was overwhelmed by a ‘knowing’ that this was what it was all about, not my art or business, but being a Mum. By then though the Art and business had taken over my life, and readjusting all my priorities, when all around me expected me to carry on with my career,was a very difficult time. It wasn’t really until I fell really ill in 2009 that being a mother was my greatest desire and priority.
All my abilities were stripped away by illness, I could not work, and even talking to my accountant to close my business was physically draining, having to be managed in five and ten minute sessions over several months. My mind was still on one hundred miles an hour but my mouth, eyes and body had stopped. I wasn’t able to a be a wife , unable to cook for my family, do the shopping, or any housework. I couldn’t even sit at the table at meal times. Who was I then? Where had ‘I’ gone?
Slowly you then become defined by your illness. I was soon diagnosed with ‘CFS/ME’. A very heavy title. I had had preconceptions on people with ME before I had it, so I presumed that everyone would judge me by the same preconceptions, which weren’t that nice. With no energy and strength, and no ability to do anything, who do we become?
The early months are trying where you suddenly meet so many new people, Doctors, nurses, social workers, occupational therapists, people to help you employ Carers, Carers, insurance assessors… The list goes on, and on. They all see a helpless sick person in bed, not the Artist, businesswoman, wife and mother. As the years pass people stop asking what you ‘do’.
It’s during this that you start to question who you really are, and what are you worth when you become so dependant. It can be easy to be bullied and to go along with other people’s ideas of what to eat and how to run your family. How your laundry is managed and what food is bought. Basically you lose control.
Before all this during my single mother days, I had a wonderful group of friends, I was the only Mum in this group and a few of them referred to me as ‘the Queen’, reminding me when I had staff or family issues ‘who’s the Queen?’. It reminded me to use my power, the power and strength that is me.
After a couple of years of illness my friends began to remind me of my ‘queenness’ . Although I could do very little, I was always ‘there’, and I could listen. With no great excitement going on in my life I could listen to others, really listen. I learned that had value, I had value. I had experience at running a household and bringing up children, so I could voice my opinions and desires. Gradually my inner queen returned and I could accept running my home and friendships from my bed.
As I began to socialise again, albeit in small doses, I was shocked that to many I still was ‘the Artist’ and even after over five years of not painting, an artist is who many people think I am. The ‘me’ that I was once so proud to be is no longer me at all, and I find it upsetting that people can’t see the new me.
Now I finally have a new diagnosis, same illness & symptoms but a different name, ‘Ehlers Danlos Syndrome’. (EDS) Relatively unknown so without all the baggage that ‘M.E’ has. However, where M.E is misunderstood and often believed to be less disabling than it actually is, and with that silver lining of supposedly miraculous and sudden recoveries, EDS hasn’t got that. It reads as a life long, genetic condition that if it hits you hard, you’re down…end of story.
Have I become ‘the lady with EDS’? Not yet, I am ‘me’ the lady who lives on and is learning to manage my condition. I have hope and confidence that where allopathic medicine can’t help, my inner queen and complimentary treatments will help.
I have learned about all the cells deep inside who make me who I am, I’m learning about my collagen and the EDS joins all the dots between all the peculiar things my body does and the ways it tells me its had enough.
For the first time in my life, me and my body are one. No longer battling against each other. Now I am a united team, my body teaching my mind to understand my physical limitations and not be angered by them. My mind teaching my body that its strong and anything broken can and will mend. While doing this, although I am no longer an artist in the old sense, I am creating a new life where I am able to be a wife and a mother, a friend and a neighbour, and most importantly just being me, in sickness and in health, I’m still here, Paula Carnell.
I’d love to know who you are, are you measured by what you do?