A Type 1 diagnosis is very scary. It is terrifying and the information given in
such a short period of time following the diagnosis is very overwhelming. In many ways the shock feels like being
pushed off a raft without a life jacket during a rapid river excursion. Even if you know that you technically were explained
what to do beforehand, the strong current makes it very difficult to keep your
head above the water. The initial shock
soon turns to panic then eventually fear as you begin to understand what is
actually happening. But this fear needs
to be set aside for the time being because you now have many life-saving tasks that
need to be taken care of 24-7. Eventually you gain confidence
until you eventually feel more and more like you’re able to keep your head
above water. Your life becomes a
constant numbers game and you never really get to re-visit the fear that you have hidden in the background.
Then there is this thing called “long term complications”
that surely comes up when Type 1 gaming.
At the hospital shortly after diagnosis they tell you to not worry about
these since they take years of sub-par control to develop. It is probably a good idea that they do it
this way since you already feel like you’re on the brink of drowning in all of
the other information. And as a Type 1
patient (or parent), you listen to this advice and shove this information in the
very back of your mind alongside of the fear because you can’t really deal with
it at this time. But as you’re doing
this, you feel this fear creeping up again as you stir things in your head and
realize how life-changing the diagnosis is.
In the beginning, it’s just about survival. It’s about learning the day-to-day stuff
required to stay alive. It’s about
keeping your head above water. So that
fear is buried for now in order to literally stay alive.
The problem with burying fear like this is that even if at
first it seems well hidden, it’s still always there, lurking, growing, seemingly unnoticeable until
one day after routine blood and urine tests, your Diabetes care team tells you
that one of the results isn’t quite normal.
For us, that day came about 1 month ago now when Adele’s urine test
results showed the presence of an abnormally high level of protein. The Diabetes nurse quickly assured us that
there is a possibility of a false positive for this result if the patient was
recently ill, had exercised rigorously the day before or in the case of
females, menstruation. But for me, upon
hearing the results of the test, the fear of long term diabetes related kidney
damage that I had buried deep, deep down in the dark corners of my mind, fear
that had grown exponentially while hidden there, suddenly came up to the
surface and literally left me paralyzed.
I felt incapacitated, powerless.
This built-up fear energy that had never been properly dealt with had
gotten so big and powerful, that it was crushing my entire being rendering me
completely useless. I was a mess. These feelings were ever-present, but just
like when I was a young boy, ever so powerful when I was alone trying to fall
asleep at night. The demons had taken
over and were now running the show.
A few weeks later, the subsequent test came back negative
meaning that the initial test was indeed a false positive (we still need to confirm with a second test next month). As much as I was initially relieved, I can’t
help but think of how I reacted and of that ever-growing fear that I had buried
deep inside of me. It is yet another aspect
or detail of this Type 1 game that is so often overlooked and where gamers too
often suffer alone. My intention is to
not try to tuck this fear back into its old hiding spot. I’m trying to face it, feel it and hopefully release
it gradually since the risk of long-term Type 1 complications are and will
still be there as long as there is no cure for the disease. Easier said than done, but that is the intention. Mourning such a loss certainly
doesn’t happen overnight. And only now
am I able to begin to understand this as part of the process. At the end of the day, Type 1 gaming is
really but an experiment. We hypothesize
a desired outcome, but even if we follow all of the rules of the game, we still
don’t get to choose how it unfolds in the end.
And that is the lesson that I need to learn...