T1D – A Little Considered Issue

Recently here in Oz, our national broadcaster ABC has been running a line of stories about Acquired Brain Injury – ABI. The main focus for these stories has been the over representation of people in Australian jails who have an ABI, whether it be associated with why they went to jail, or acquired while being in jail.

Seeing one of these stories the other night and actually listening to what they were saying, instead of just letting it be background noise, got me considering what I went through 38 years ago. Anyone reading this who has been following my posts over the years might be aware of what I’m referring to, but the summary is that I had a near-death experience when extreme low BGL put me into a coma and came close to killing me.

Hearing the story on the ABC helped me realise that medical knowledge had indeed progressed in those 38 years, and what I experienced that fateful day in the follow up care now had a name and understanding.

Now I’m not going to focus here on the T1D aspects of the story about ABI. As the first link above explains, it can come from a wide range of places, both physical and medical. In my case it came from my body not having enough glucose in the blood because of the extreme hypo. The body will do everything it can to remain alive and viable and works its way through a checklist of options. At the top of the list is to keep the heart beating …. obviously. Down the list of options, a surprisingly long way down, are the eyes. That’s the reason I wear glasses; it stems from that episode. My body started metabolising the tiny muscles in my eyes that control focus. Also down the list, but probably closer to the top in importance, is the brain. The episode was so dramatic and I was so close to death that my body sacrificed parts of my brain in order for me to have enough glucose in my blood to remain alive. Hence my short term memory was shot. The second link will give you a snapshot of when I found out about that.

There’s a sort of dark humour anecdote from my mother that is associated with this damage that I suffered. She said to me once, in her caring but socially clumsy way, that I “used to be such a nice little boy”. What she was actually saying was that my personality had changed since that near death experience, which is also another potential part of ABI. It’s mentioned in the first link and was also mentioned to me by the doctors in follow up visits.

From a social perspective, probably the hardest part of T1D for us and our families is that it is usually invisible. We look normal, act normal and don’t look sickly. ABI is also invisible; that is part of the problem. So somebody like myself lives with an invisible chronic illness which has lead to an invisible ABI condition that has over the years caused some embarrassment and social difficulty.

One day, a few years ago, I was driving my wife to work. On the way we were talking about work that I was doing in our garden. I mentioned in passing that I was quite proud of what we were doing and gave myself a small verbal pat on the back. My wife’s reaction took me completely by surprise, so much so that I was pondering heavily on what she had said as I drove back home. In essence she was exasperated that I was again taking credit for something that she had done, in this case the general design of the garden.

I was dumbfounded.

But when I combined that with something my work mate had said to me some years before, it started to paint a coherent word picture. Completely unknown to me, I was creating memories to give a sensible explanation to things I couldn’t remember. And when I say “couldn’t remember”, I mean it was an entire blank. I’m not talking about “Where are my keys?” ….. tap, tap, tap on the forehead ….. “Oh yes, over on the bench”. I’m talking about a complete, total, black hole where not even the memory of a memory exists. This is the sort of no memory that most people never in their life experience. It’s as if all the oxygen has been sucked from the room and you are in a black vacuum. Nothing is there and never has been …. ever.

That is what an ABI did to me all those years ago. So not only is T1D an invisible illness, but so are some of it’s consequences.

That is T1D as I have lived it …… today.

Marathon des Sables – A Type 1 Diabetes Adventure


The Kellion Victory Medal

Today I’m writing about something that I hope to achieve in a few years.

Here in Australia – the Magical Land of Oz – the central organisation focussed on all things diabetes, Diabetes Australia, annually awards symbolic recognition for those who have lived for 50 plus years with diabetes. This recognition applies to both Type 1 and Type 2 diabetes.

As I was diagnosed in 1974, at the age of 17, that means I reach my 50 year mark in the second half of 2024. Humorously, I don’t even remember which month it was, but piecing together anecdotal details such as school requirements at the time, the weather etc, I believe it was August of 1974. However, as one of the requirements before being officially recognised as having reached the 50 year mark is to get proof of the diagnosis, I will learn the exact date as the time gets closer.

Now you might be wondering why on earth there would be any sort of recognition for surviving 50 years with diabetes. The idea was first raised by Dr Alan Stocks in recognition of Mr Claude Kellion who made great contributions to the cause of diabetes here in Australia after his son died from complications in 1972. He wanted to encourage further research, knowledge and understanding of diabetes.

And when you consider that every person living with T1D can be in a coma and die within hours if they don’t take the correct actions, and this is 24 hours a day for every day of their life, to live for 50 years, that is 18,250 days of 24 hour care, is something of note.

On the other side of that coin though – I was having coffee the other morning with a friend from work and we were talking about her recent bout with cancer, which is now in remission. During the conversation she made reference to me being a “hero” for what I need to do every day to stay alive, to which I scoffed. I’m not a hero. I might be a survivor, but I’m not a hero.

A hero is someone like the cave divers who recently rescued those boys from the flooded cave in Thailand. Or Winston Churchill, who battled his own demons to be able to lead England and the free world to victory over Nazi Germany. They were true heroes.

In my opinion, someone like me is a survivor, not a hero.

You can read more about the Kellion Medal here.

That is today as I have seen it.

Marathon des Sables – A Type 1 Diabetes Adventure