09 May 2014

Ichthyosis Awareness Month: Terry's story. "Had I been born without ichthyosis, I would be an entirely different person."

It's always a lovely surprise to get a message on Facebook from a blog reader who has Ichthyosis. There's a deep sense of connection and moments of empathy. Terry Bachman has been one of those readers. She's incredibly strong - developing her strength from her Ichthyosis, which has helped her to cope with deeper struggles. Terry has Ichthyosis Vulgaris and loves in Canada.

She told me "I have gone 56 years without having anyone to talk to about this except my own family, but meeting you has changed all of that, and I will be forever grateful!"

"My story begins with no fan fare, nothing out of the ordinary. I was born to wonderful parents with english ancestry, who lived in Winnipeg Manitoba Canada on July 11 1958. I came into the world kicking and screaming, and with what my grandmother described as angel wings. Little did I know at the time, all of this would help me with the journey I was about to take. One little recessive gene was about to change the path of my life forever.

I was only 2 months old when my mother started noticing that I was developing an extremely itchy, red rash on my body, most predominately on my face. She tried all the home remedies for what was thought to be eczema, but to no avail. My rash persisted and started to make me very sick. I was admitted to the hospital with what turned out to be a life threatening staph infection.

So began my journey, of being what was described as a literal guinea pig of modern medicine. The doctors had no idea what was causing all of this, and so treated me as if I had a form of small pox. I was tied down in my bed, at 2 months of age, to prevent me from scratching and pulling out IV's, and treated for a period of almost 3 months, before my rash healed enough for me to go home. I was kept on a diet of veal and apple sauce, as my rash was thought to be some sort of allergy. It wasn't until years later, while my Mother and I were doing research into our strange skin condition, that we discovered that what we actually had was ichthyosis.

My ordeal not only left me with physical scars from deep cracks in my skin, but with many emotional scars as well. As I entered school, the teasing and feelings of not fitting in, were relentless. Not only was I teased at school, but then when I would travel on the school bus to and from school, I would encounter a whole new group of children who took there turn making fun of me. Along with my "unusual looking skin" and scars, came the inability to sweat, which goes along with ichthyosis. When I would be in situations where I would get to hot, my face would turn a brilliant shade of red. I would go to great lengths to hide my face when this would happen. I perfected the art! Looking down or keeping my back to people usually worked. Inevitably though, they would see my face and remark about how red I was. It kept me from joining many sports activities, and also kept me from any social situations that would cause me to get overheated. When it would happen unexpectedly, I would usually end up getting really frustrated and mad at all the stares and questions directed at me. Taking gym class in school was one place I could not escape it. The teachers had no idea it was dangerous for me to become overheated, and would push me to continue, until I would almost collapse with exhaustion. Of course this was always a perfect opportunity for the kids to tease me some more.

As I grew up, and left school, my Dad was instrumental in helping me to overcome all of this. He would tell me, (actually he had always been telling me this, I was just too young to listen) Terry, when you walk into a room, hold your head high! You are a beautiful girl, and if you let that shine through, you will see, people will open up to you, and teat you with the respect you deserve. It took me a long time to put this into practice, but as the years went by, I started to gain confidence. Of course I still get the usual stares and questions, it is just that now I know how to deal with it. I calmly explain my skin condition, and people seem to make less and less of a big deal about it. The way I carried myself, with an air of self-confidence, pre-determined how people treated me.

As the years went by, I gained more and more confidence, and came to realize these were all life lessons. I was never more challenged to put these lessons to great use as in the past 10 years. My wonderful father passed away suddenly at the age of 74 in 2005. This left my Mother shaken, and just a shell of the person she once was. In 2008, she was diagnosed with multiple myeloma, a terminal cancer of the bone marrow. I gathered all my strength, and cared for her until her last day in September of 2013.

I have come to realize that all that I had been through, up to that point in my life, was preparing me for this struggle like no other I had been through. It gave me the strength to fight and never give up, as I had for those 3 long months I fought to stay alive. It gave me compassion, and the ability to relate to suffering, as I had known what it was like to to be shaken to your core with illness you had no control over. Lastly, those angel wings that my grandmother insisted I was born with, I think, were there to enable me to carry my mother through her journey and beyond this life, with the dignity she deserved. A dignity she would never had had if she would have been looked after by strangers.

There is one thing I know for sure, that which has taken me years to realize. This is me. Me with my "strange skin, me with my scars, and red face, but me none the less! That which almost destroyed my life, actually enriched my life, and I would never have it any other way. For I feel, had I been born without ichthyosis, I would be an entirely different person. I personally like me! I hold my head high, and wear it now like a badge of honour! I believe with all my heart that this is exactly the way my life was supposed to be!"

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.


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