Memories of the medical kind

My dear friend Carly Findlay published an emotional post the other day entitled Feeling like a freak on the opposite ends of the spectrum. In it she speaks about the different types of staring and curiosity she receives - both from strangers in the street and also from the medical profession.

I guess in this way I have been relatively "lucky". I have the average garden type variety of dwarfism called achondroplasia. Although it is still rare, occurring once in every 15,000 to 40,000 births, on a scale of 1-10 with 1 being BORING and 10 being "OMG! This is a new one we haven't seen before!", achondroplasia would sit down the end of the boring scale. Yes you can have your nuances and there can be issues, but in many cases it's, "Congratulations Mr & Mrs X, your baby has achondroplasia! Take him/her home and love him/her, we'll see them often enough to take care of anything that crops up!"

Well....that's almost what my parents were told and I was most certainly told something like that when I asked, "What should I be watching for?"

As a child I really only saw the specialists three times. Once when I was diagnosed, once when I was six years old and then once when I was about fourteen to check up on my dicky leg. Maybe they would have liked to see me more often but we were in the country and, according to my mother I reached all of my milestones on schedule, was healthy, seemed to be well-adjusted (apart from being an anxious little thing!), so she and Dad had no reason to make the arduous journey into the Big Smoke to have doctors poke and prod and tell them what they already knew.

However, the appointment when I was six hasn't really left me with the most wonderful of memories; in fact it followed more along the lines of what I would imagine research consultations would be. There was the measuring, the weighing and the, "Well, what's she doing Mr & Mrs X? How's she doing at school? Does she have friends?"

And then there were the x-rays......

And then I was taken downstairs for a series of photographs......

It was all fine....until they asked me to take off all my clothes.

All of them.

My mother wasn't in the room at the time. She tells me that she had stayed behind to talk to some other doctor, or social worker, or someone.....but my Dad was with me.

I remember them asking me to take off everything and I helplessly looked at my Dad, not wanting to stand in this room of strangers in my Birthday Suit. I was six years old, not a baby. I was ashamed, humiliated, dreadfully embarrassed.

And this was back in the day when parents never thought to question doctors or any other figure deemed to be one of authority....so, after the doctor suggested that my father help me....he did.

And I stood for those photos....and I smiled for the photographer, because that's what you think when you're six - you have to smile at the camera - but I was so terribly, terribly scared and embarrassed; so much so that I blanked out the rest of the time there.

I'd always known that those photos were in existence. Somewhere in the back of my mind I was always aware of them. It wasn't until I was a mother of three children and we were all at the hospital for a check up one day that I saw them again and realised why six year old me blanked out the rest of the memories. That day when I was 25 we were all at the hospital also being interviewed for an article being written about a new computer database that would assist specialists make more accurate diagnoses. We were lucky enough to go into the lab where the system was and have a look at some of the contents.

I think I remember someone saying to me, "I think some of your photos are in here too!" They looked into the files and there they were....

Oh, my eyes were covered with the characteristic black rectangle that was supposed to preserve my anonymity (and they also did it to protect their own backs because no one had contacted me to ask permission to use the photos), but there I was. Six years old, looking nervous and scared and very, very exposed. Not only that, but the photographer had taken close ups of ALL of my body parts.

ALL of them.

And I wouldn't have been standing for all of them either.

I'll leave you with that for a minute........................

No wonder that little six year old blanked out the rest of the session.

To cut a long story short I thought about those photos for days....and ended up calling the hospital and having a chat with the Social Worker who had known me since I was little. I asked them to take the photographs off the database seeing they hadn't sought my permission to use them and I asked to have the original photographs sent to me. It took me a while to feel ok again.

When I became a mother, the memory of that day ensured that I was very protective about the amount and type of documentation kept about my children. Yes, they had photographs taken at one point, but I was present and ensured that they were appropriately covered in the right places. I have refused most research and only allowed their cases to be presented at conferences if doctors have assured me that they remain anonymous. Never have I allowed my children to be in a room full of doctors discussing their case. Ever.

In my files at home I have ten black and white medical photos of a little six year old girl. Her little mouth is smiling, because she's in front of a camera...but her eyes are not. She was scared and confused and so terribly, terribly embarrassed.

That girl is me.