The terrible timing of my diagnosis (like there’s a fucking good time, right?) started a descent I only just realized – 20(ish) years later – occurred. In a you-never-know-how-lost-you-are-until-you-are-found kind of way…
You see, I never got to go to camp with other T1D kids. I spent all of my diabetes socializing with Type 2’s old enough to be my parents and grandparents. In fact, my first real Diabuddy was my T2D Nana. And for the longest time, she was THE only one.
I tried to keep ‘Betes under wraps when I went away to university. My roommate was a girl I had known since I was five years old (sadly, we have since fallen out of touch with each other) and only slightly versed in all things Type 1. I told the Don of my floor, as I felt it was important. And that was basically it. ‘Betes never made a real appearance that first year, well…until it made a BIG appearance. In all the wrong ways.
At the time I went away for my first year, ‘Betes and I had only been together for about 18 months. Our relationship was FRESH. And, of course, in the honeymoon phase.
Side note: honeymoon phase refers to the period after diagnosis where a T1D can appear to “get better” because they are still producing small amounts of insulin. The length of this phase is different for everyone.
So ‘Betes and I seemed to managing the trials and tribulations of that first year of university just fine. Especially considering it was my first time living away from home, and definitely not the post-secondary plan I had been preparing for prior to my diagnosis. But I’ve always been someone to just carry on, so I carried on. Until I couldn’t.
Just before the end of that first year I caught a cold/flu that wouldn’t go away. I made several trips to the on-campus clinic but nothing they suggested made anything better. Much to my dismay, I soon found myself on a coach bus heading home. I decided the best thing to do would be to make a trip to our family doctor.
And I did. And he sent me all over for a whack of tests and x-rays. To keep things short, it turned out I had an upper respiratory tract infection. And it was bad. And then it got worse.
I vaguely remember lying on the couch at home, life carrying on all around me. Parents, brothers, dogs. I drifted in and out. The TV on in background. Then I think Mom tested my sugars. The VERY HIGH twenties is what she saw. And I sort of remember her telling Dad to take me to emergency…
I have no memory of the drive there, parking or entering the lobby. I have brief bits of them stripping me down in triage and being thirstier than I had ever been before; in fact, I can actually recall that thirst, that dry feeling in my mouth. And when I do, it makes me shutter. I also clearly remember a doctor walking in the room and remarking, while still in the doorway, WOW, I can smell her from here!
And she meant the fruity smell I was exuding due to hyperglycemia not my actual scent.
I remember my father crying at my bedside because they wouldn’t give me water. And my lips were cracking. So was my tongue. Can’t I just give her an ice cube? And they wouldn’t let him. I was receiving the necessary fluids intravenously.
Things were bad. ‘Betes was rearing its ugly head. And I was sent to another hospital via ambulance (nope, don’t remember that ride either!). To shorten things up, I was in DKA, I had had a mild heart attack and I was heading in to a coma. All of that wreaked havoc on my system and caused brain damage. While I had cognitive abilities and physical memory (I could walk/talk, drive, read, write, etc.), there was serious damage done to my memory. And I had lost massive chunks of all things before the age I was at the time.
Something else happened after all of that. Something that I cannot quite explain nor can any of the many doctors I have seen. I felt different. Inside of me a shift had occurred and I had no idea how to handle it. I had no idea who to talk to about it. I had no idea why it had happened. And then, my mental health struggles intensified. And I kept it to myself for a very, very long time.
And there you have a very ugly side of ‘Betes. And how we ventured to the pits of hell and emerged nearly unscathed but most certainly different.
We have had so many moments, ‘Betes and me. Twenty years is nothing to laugh at, it’s two decades. And a lot of time that allows for a lot of things to take place.
And you have read about my connection to the man who is (in large part) responsible for my being here post-diagnosis: Banting. No Type 1 would be here without his discovery of insulin. I am as thankful as I am proud (he is my cousin, you know!). And while we never met, the Banting and me story is worth noting. I mean, he discovered insulin and I am Type 1 – that’s cool, right?
You are in a for a real treat next because next comes the “ME” part of this series.
Consider yourself warned.
Though I do hope you’ll stop in for a read.