22 May 2014

Ichthyosis Awareness Month: Sam's story. "Anyone with or without Ichthyosis has the right to achieve whatever they can and especially to just be themselves."

Sam's story is one of difficulty - she's been challenged by both the medical and social aspects of Ichthyosis.

Sam has a mix of Lamellar and Harlequin Ichthyosis which, throughout her life, has affected her eyes and ears. She's had numerous operations

She's experienced a lot of bullying through her younger years, and what she has written about should challenge everyone to consider the impacts of physical, verbal and exclusionary bullying. Even the memories of stares from strangers when she was very young have stuck with her. I concur - it is hard to be stared at en masse - and it can make for difficult outings.

Yet she lives a fulfilling life - remaining optimistic and creating artwork to express her. She's exceeded the expectations of everyone who never thought she could.

I also know how hard it was for Sam to write this story - and I'm very proud of her for doing so. It's so moving.

Sam has also included three artworks. She says "I chose these as they're all from my Art work that's directly influenced by my life diary, Ichthyosis & hospital experiences. I work in a wide range of mediums & also paint abstract acrylic pieces."

Meet Sam.

"My life story spans 45 years and counting...

Writing my story for 'Ichthyosis Awareness' month has been far more challenging than I'd anticipated it would be. I've expressed many aspects of my life, many times and ways as an artist. However this project has reminded me of just how unpredictable and precarious my life has been throughout.

Expectations and assumptions have followed me because of my life with Ichthyosis. These have often run parallel to the fear and anticipation that my physical existence and care, would compromise and rule the lives of others and my own; stopping me from having a quality of life as independent or equal to anyone else.

Over the years many of these issues have been challenged (in a number of ways) by family, other people and my own efforts. Neither do I want my life script to be totally underlined, defined or overwhelmed by experiences of ignorance and prejudice.

My skin condition (diagnosed as a rare, severe form of Lamellar or Harlequin Ichthyosis) has been scrutinized by medical professionals, many people I've met and countless numbers of people who've simply passed by me.

I was born a few weeks before my due date, in 1969. It was soon noticed that I was covered by a collodian membrane. This shed to reveal the classic symptoms & features of Lamellar/Harlequin Ichthyosis.

My skin grows rapidly into scaly patches that thicken (especially on my palms & soles) to become stuck or sheds leaving tight fragile skin that can split, get sore and be vulnerable to the many infections fought via antibiotics.

I've taken an oral retinol drug (plus vitamins) since my early teens to control some of my symptoms but regular cleansing, exfoliation & soaking my skin is as essential as the frequent application of prescriptive lotions, creams & ointments. These care routines are key to keeping my skin and self as healthy as possible. This genetic skin condition is recessive and incurable at present.

From the very start I was a surprise, unplanned, convinced to be a boy. I was scheduled as a home birth but ended up being delivered at a regional hospital which probably went a long way to saving my life.

A few hours after I arrived, many questions began to be asked.

My parents first child, my brother Kevin had died barely 2 days old from severe respiratory complications and the rare skin disorder, Ichthyosis.

My parents were advised this tragedy was almost certainly a terrible but isolated case and so my 2 sisters arrived, without any complications (or Ichthyosis), during the 3 years before my birth.

Doctors soon realised I had the same skin condition as my brother. Before my Dad reached the hospital, my Mom had to choose my name, Samantha, (a popular 'charts' song) and I was baptised, confirmed & administered the last rites by a priest admid fears that I wouldn't survive the next few hours.

Such were the times, I whisked into isolation from my Mom for over 2 weeks and it was suggested to my parents, that if I made it, it would be understandable if they didn't wish to keep me.

However I pulled through the horrendous start (with worrying blips thereafter) and my family visited as much as the could. I was eventually allowed home, five months later.

Growing up was heavily revolved around my skin care and endless outpatient appointments for my skin, eyes and ears due to my Ichthyosis.

A balance was struck between my healthcare and my need to be a child. I played outside whenever possible but could easily be laid up by hot weather, skin/ear infections, sickness migraines and childhood illnesses (bouts of 'measles' & 'chickenpox' took many weeks to recover from). It's credit to my Mom's care I recovered at home and her commonsense prevailed many times. Especially over some of the more eccentric medical do's & don't.

Throughout childhood I had regular day-case procedures under anaesthetic to assist my hearing. A perforated eardrum was eventually repaired into my early 30's.

My under formed eyelids ('ectropia' eye condition) at birth put my eyesight at risk and I've had to undergo eyelid reconstructions with skin grafts first aged 8, my late 20's and my early 40's. The op's were done from Glasgow to London, where my highly specialized care continues to date. (The picture below is of me, post eye surgery.)

Despite my lifelong fear of anaesthesia, I credit these operative experiences (especially when 8yrs old, miles from family, for over a month in Glasgow hospital), for establishing a strength and determination to seek much more independence from my life, which a lot people seemed to believe me incapable of.

From a very young age I've observed and absorbed a great deal and I soon realised that I was being treated differently. I've often been either ignored or stared at with fear, disapproval, hostility and so on. One of my first memories is of my Mom and I being stared at (even followed in shops) as I was taken out and about. Family outings became very stressful. I became acutely aware at how uncomfortable we could all feel.

From Playgroup, (primary, middle or high) school through to college and university I experienced different levels of being treated differently by a number peers and adults.

Individual and collective bullying to my face and behind my back. It's devastated me to hear these both direct and indirectly.

Incidents of physical bullying took place mostly in school rooms, corridors, playgrounds and even enroute home. I've been chased, pushed, tripped, kicked, thumped, pinched, called endless names, spat at, cursed and generally ostracized or ignored. At an all time low, my head was forced into a toilet and I felt as though I'd never fit in.

Nevertheless the loyalty and support of a good friends and those who've just left me in peace, has helped me through, despite how hard I found it trusting people. Although I often felt unhappy I behaved myself as much as possible, knowing the strain that my Ichthyosis put upon us all.

I've heard I was a fairly happy baby and most of my childhood photos show me smiling, seemingly happy. Whatever has tested me over the years, I try to be as positive as I can.

Throughout my childhood I loved art & crafts, reading classic children's books, stories and films, that in essence, allowed me escape harsh realities surrounding my life.

I enjoyed the make believe games played with my sisters and I managed to occupy myself, especially when laid up or unable to go outdoors. Drawing, doodling, colouring-in, tracing, spiro-graphs, an etch-a-sketch and countless other things filled the hours and fuelled my imagination.

One of my primary teachers told my Mom to encourage me drawing etc, as much as possible and so I did, through to high school. My love of most arts and crafts, coupled with an enjoyment of reading; saw me swapping many break-times for the peace of the library and arts room.

Belief in me via my high school English and Arts teachers, set me on the path to pursuing and practising art seriously.

Designing the sets & costumes for a school play and winning a county schools arts award, (aged 17), had me hooked and I was finally gaining confidence and a respect from peers and adults alike.

By now I was a young adult and I began to pursue my art to college and university. My pathway didn't come easily. I overcame many setbacks and concerns in order to pursue my hopes of success and desire for freedom.

I lived away from my hometown for over 15 years, between the ages of 20 to 35 (1989-2005). I achieved a BA(hons) and eventually Masters Degree in Fine Art.

Ignorance and prejudice got directed towards me many times throughout but with the help of family (I often visited) and good friends, I felt freer of the constraints of my condition. The more determined I became the more I moved beyond expectations, that my earlier life seemed to have set for me.

Nevertheless my Ichthyosis, operations and side-effects from my skin treatments, continues to challenge my health and aspirations to date. My resolve is once again being tested, (especially from a chronically painful back problem) but I continue to forge ahead of these problems and expectations. Like my beginnings I shall fight for my survival and remain as independent as I can.

I know 'my story' won't be unusual to anyone with Ichthyosis but I hope it demonstrates that however daunting early and very difficult years can be, that it's possible to have a fulfilling life, whatever anyone else thinks.

Anyone with or without Ichthyosis has the right to achieve whatever they can and especially to just be themselves.

I also understand I 'live' my life with little different up's and downs to anyone else's life.

My life story has often been marked out by my rare skin condition and the human race's preoccupation with physical identity and whether our physical selves are deemed to be less or more on many levels pertaining to race, ability, disability or the appeal & beauty of superficial appearance.

As an artist, I've often addressed my experiences and feelings about life, my skin, healthcare, operations and explored my identity as a woman.

Nevertheless I always remind myself how fortunate I am to have a life, even with Ichthyosis.

(Dedicated to the memory of Kevin Morris, 1965)."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.


1 comment:

  1. A heartening, inspiring post. Thanks Sam (and Carly) for sharing it. :)


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