I often read articles written by parents of newly diagnosed type one children, who lament on the way their lives changed so markedly the day they received the news that diabetes had moved into their lives. The condition I know so well now demanding how the lives of another family would play out. Not just the life of each child, but also the lives of their mothers, fathers, siblings and friends.
I was diagnosed at the tender age of four and to this day the memories I have are scattered and vague - much like the memories of a dream you remember for a split second after you wake, but which then melt away to become only snapshots and pieces of the whole. As a child of four years I had no context in which to place this disease. I doubt I even knew what 'disease' or 'chronic' meant. I certainly didn't know what the condition would entail. That piece of the story followed eventually, when I had to learn how to walk that rocky path on my own.
The one thing that has struck me however, is that many of the milestones of my diagnosis and the inevitable adjustments which would soon have to be made, have stayed with me for 23 years. They never change, they never falter and they never disappear. The memories are still clear as day in my mind's eye. Perhaps I don't have quite the rounded picture of someone who was diagnosed at later age and each of the memories on their own don't tell a great deal. But stitched together, piece by piece, the patchwork quilt that is the story of my diagnosis comes together. The snippets I get here and there from my family has also helped knit all my memories together, as I am sure the days which I am about to describe will be burned in their memories forever - as I am sure many of the mothers and fathers out there would agree.
My story goes like this:
It was Christmas 1986 and I was living with my family in Germany. I was four years old and completely and utterly normal. I loved animals, art and most of all - horses. I was horse mad - just like most little girls.
In Germany it is quite customary to eat Goose for Christmas rather than the classic British choice of turkey. My family and I had gone to a local pub, where we were picking up a free range goose for the big family meal. I still remember that there was snow outside. I remember cars parked along a wall on the right hand side of a lane and I remember there being a sort of raised bed on the other side of the lane. I think the pub was white, but that bit is one of the blurry details. The lane itself has actually featured in a number of my dreams and whenever I am anywhere that reminds me of that place, I give a little thought to what was happening inside me at that time. It all makes so much sense now. If only we had known.
I remember that I was sitting slumped underneath the table in the pub and was chugging back apple juice after apple juice. I remember how thirsty I felt. I felt sick from all the juice, but was begging for more. I remember the bar, which was very long - it sort of covered one entire wall of the room. I remember a dark reddish maroon-coloured carpet, with tables and chairs made of very dark polished wood. I remember one of my brothers playing with me under the table. I think it was my older brother. I remember his face appearing in the left hand side of my vision. I remember asking for more juice.
That was my last memory of the days before diabetes took over. Although the truth is, diabetes was already well and truly manifesting itself. That was the reason for the desperate thirst for apple juice. That was the reason I felt tired, even though I was four years old and should have been tearing about the place like the kid I really was. That was the reason I don't remember anything after that. Apparently that's when I was last conscious.
I don't really remember much about hospital or the tests that must have followed. No doubt I was pricked and prodded and had blood taken from me against my will. No doubt I was confused and scared and glad to have my family there. I am glad they were there.
The next thing I really remember is going away to what is known in Germany as a 'kúr' (Cooer). These were run in Germany to help families of newly diagnosed people, with any number of different conditions, allowing them time and space to learn about these conditions with other people going through the same thing. It was kind of like a holiday camp, only it was for education and teaching as much as it was about fun. I don't think the adults were having fun - it was just us kids, but by God did we deserve it. It provided the 'grown ups' with education, a chance to meet people with shared experiences and a chance to take it all in emotionally. I guess for the kids it was a chance to play and meet other kids who also jabbed themselves daily and who had to analyse what was was in the little red drops at the end of their fingers. I thought it was fantastic, but my parents and many others were in the room next door to ours learning about what they're children were going through and what they would have to do in order to keep us alive on a daily basis. Learning about how to try and manage the impostor in their lives, the one with squatting rights that has no plan to leave. It sounds bizarre, but I remember eating a carrot every night before bed. They came arund with a load of them to everyones room and handed them out. I don't know what that was about - but I remember it.
I remember what I think may have been my first memory of a low from that trip. I remember going on a walk and had just left the building with a group. I remember walking with loads of other kids and a few adults. I remember it was very green, and there were huge plants either side of the path we were travelling. The green shrubs either side of me probably weren't really that high but I was four, and everything my body had been through meant I was on the small side. Everything just stopped growing for a while I guess, I just needed a little time to catch up.
Truth be told, even though I say I remember there were a few adults - I only remember one - a man. I don't know his exact age or name. He must have been late teens or early twenties. I don't remember what he looked like or why he was there, but I remember him sweeping me into his arms and running. Running really fast. My head was bobbing back and forth as he charged back to the site. I felt myself become more and more tired. He was talking to me the whole bumpy way back. I remember clear as day, we reached a room back at the building we were staying in. He obviously thought there wasn't enough time to find 'my' diabetes kit, because I remember him grabbing a lancet and rather than placing it in the normal blood glucose finger stick device, he jabbed it into my finger. I can't even say it hurt, I don't think I was awake enough to notice.
I would love to meet that man again. My memory of him is vague, but he features in a really specific part of my memories from that time. I only have a handful of memories to work with, much like an amnesiac piecing together who they are, I have to try and remember 'what happened', back when diabetes kicked in. This man is part of my past. And on that day, he raced back on my behalf beacuse my legs were too short to carry me fast and my energy was too low to finish the journey. That deserves a thank you.
The next memory I have is when I was back home. I was sitting on the bed in my parents room, facing a giant closet they had covering one side of the wall. I remember by little brother being one side of me, my father on the other side, and someone else was in the room as well. I expect it was my mother, as she was always there in the wings, she was then and still is now, but I was distracted when I was in this memory; I was doing my first injection.
In my hand I had one of those old hypodermic needles, the skinny plastic ones with the tough orange lid. The needle looked about a foot long and I remember how big it looked. It was huge.
I plunged it into my right thigh, gave myself the shot and looked up. My dad and brother were celebrating and telling me how impressed they were. Celebrating my courage and strength. In a way, celebrating my battle I suppose.
From then on, the memories get less and less vague and more and more recent. Each day is now filled with diabetes memories.
The day I went to hospital in an ambulance, when the ambulance man took off my t-shirt and stuck those heart rate monitors all over my chest, showing me my heart rate on the big red cardiogram on board. He probably wouldn't be allowed to do that now, but I'm glad he did. I had to go to hospital on my own in the middle of the night, because my mum, the rock that she is, had two other kids to look after and being the middle of the night, had no-one to go with me or look after the boys. I could have been a scared worried girl then, but instead, that nice man made me laugh and let me play with all the medical equipment on board, while he measured my sugars and made sure I didn't black out.
The day I went low on the beach and thanks to my brain shutting down, could not for the life of me work out how we would get up the hill to the cars. After some cocoa and a chocolate bar, I realised I was staring at the path which leads straight to the car park. It looked a lot more confusing behind the blurry hypo goggles.
The day I got the pump, the day I said "can I stamp the ticket" (my brothers will understand), the night of "I can't see, I've gone blind" (my fiance will understand), the day I got all my sugars under 10mmol, and the day my A1c came down to 7.9%.
I'm sure that one of the reasons I struggle so much to remember, is that what I was going through was kinda painful, confusing, frightening and new. The changes going on then would be with me for the rest of my life, and my mum has told me many times that I clearly didn't understand that this wasn't going to go away.
Whatever the reason I can't remember the whole story doesn't really matter.
I remember the time when I got ill, I remember learning about it, I remember experiencing my first low, I remember conquering the first big hurdle, and I remember everything thereafter.
I guess it's not just diabetes which stays with you for life, I guess the memories stay with you too.