Kisses for Kycie: know the signs

In light of the tragic passing of Kycie Terry  (of the Kisses for Kycie facebook community) I want to dedicate some time and space to information that may be only a memory for those of us who have lived with Type1 for years but that is still of critical importance: diagnosis with Type1 diabetes and the precursors to it.

If you’re thinking ‘That’s great for you, but I don’t have diabetes’ the only guarantee is that you don’t have it yet. Beyond that it’s basically Russian Roulette. Hopefully you and your loved ones will never have to get closer to it than reading the rambling accounts of it that I usually provide here but take a moment to commit these signs and symptoms of Type1 Diabetes to memory because it could save a life:

• Increased thirst and hunger
• Frequent urination
• Weight loss
• Blurry vision
• Feeling very tired
• Nausea and vomiting
• Flu-like symptoms
• Persistent infections and trouble healing
• Failure to fully recover after Flu like symptoms
• Yeast infection

Maybe I am getting soft in my old age; maybe I am hypersensitive to the fear of losing a child now that I have one and the specter of diabetes constantly lurks in the public square of my nightmares. Fear makes no attempt to hide any more in light of the possibility that I know exists. Perhaps we can never fully vanquish fear-because as we drive it out of our own territory it slithers into the nearby lands of those more vulnerable for whom no sacrifice would seem too great.

I am not in a position to eulogize Kycie Terry so I won’t. I am a bystander, a detached entity with no right to speak to this tragedy directly. It is not without a bit of trepidation that I write this post because I do not want to overstep or disrespect the Terry family by invoking their loss. Yet, even at this literal and figurative distance, I feel shaken by the tremors of their loss through the diabetes community and I want to express solidarity with their cause of raising awareness to prevent misdiagnosis of type1 diabetes in the future. Being open about diabetes can put it on the radar of those around us and those in the public. That blip on the radar can be the difference between catching diabetes in time or not.

Diabetes came into my own life in early 1999 and deleted 16 years of a story that I had been writing for myself. Sure the plot has still been “great” since then-and maybe this “unwelcome editor” over my shoulder has improved the quality of my work in the long run, but we will never know the conclusion of an alternate arc. That story is gone.

I was lucky though; I only lost a few pages. My book took a different turn but it continues on. Not everyone gets that chance. I can often forget that the things I manage with ease may cause someone else to sink into deep depression or that access to care and information I take for granted lies beyond the grasp of someone who may live only a few miles away. So if you’re still reading this post and thinking, ‘Yeah, yeah, everyone knows about the symptoms of diabetes, big deal’ that means that you’re like me and were fortunate.

I was undiagnosed for over a month. I was 16 years old and I was living away from my family in Alaska but that’s a whole other story. I came down with what felt like a stomach bug-nothing alarming-but after the usual two or three days, I didn’t bounce back the way I expected to. I had stopped throwing up though so I thought that meant that I was out of the woods. ‘Maybe I’m dehydrated’ I thought. Gatorade to the rescue. While I’m at it, why not top that off with some ice cream…

Repeat some version of that daily routine for about a month and despite the rabid consumption of ice cream and other high calorie foods, I kept dropping weight. I kind of got used to feeling completely wasted and I learned to function decently in spite of  it. I’d lose my balance walking up stairs and have to lie down in the dark during the day. No one knew what was wrong-I sort of self diagnosed it as migraines because I kept having visual hallucinations and since I was certainly not doing peyote and was highly photosensitive, that seemed a logical enough conclusion. I wanted an explanation for the way I was feeling and that was the shortest way to alleviate the fear that it was something really bad like cancer or a tumor.

The details of the winter of 1998-1999 are still hazy to me. I do remember going to school one day and telling a friend that I had decided to cut off all my hair because my head hurt. I remember that he kind of laughed but seemed concerned. I was almost outside of myself after weeks of being in exhausted agony, watching from a third-person vantage point. Even this transient state was not enough to obscure how odd I was sounding.

Later that morning I took my first ambulance ride: Delta Junction, AK to Fairbanks, where I was admitted to the ICU following the intervening two hour drive. I lost two days of my life in that hospital bed. I don’t remember a lick of them. It was only after the fact, in the hospital, that I learned from second hand accounts about how I had been admitted with blood glucose readings over 1000 and a severely depleted white blood cell count of 900 (normal is 4,000-10,000).  My parents told me what it was like when the doctors tried to prepare them over the phone for the possibility that I wouldn’t make it. I had missed all the action, but still I saw it written on their faces and heard it in their voices.

I was lucky. I made it. I woke up after two days feeling like King Theoden in Lord of the Rings. I literally felt like I had awoken from death itself. I was weak but I was back, thanks to a massive, intravenous antibiotic cocktail that knocked out the Encephalitis (brain infection) that had accompanied Type1 into my life. My parents and friends who had been standing by me were less lucky in the sense that they had to encounter the gravity of the situation-and perhaps it’s the fact that I skipped out on that burden during my own diagnosis that I feel suddenly unprepared for the weight of knowing a little girl that I’ve never met was lost-to type1 diabetes, 2000 miles away.

How many of us had similar close calls because of misdiagnosis or late diagnosis? We assume that because we made it that everyone does. Surely, most do. Still ‘most’ is an unacceptable survival rate. This is one of the applications of diabetes awareness-putting these facts, these stories out there-that can really do something useful. I have said many times that beyond my personal enjoyment (and some possible aesthetic value) climbing is just a vehicle for diabetes awareness. It’s a way to cut through what we are so used to seeing and hearing and deliver information and inspiration: To the diabetes community. To the public. To anyone who stops to look and listen. Take a moment to speak up today.

‘Most’ is an unacceptable survival rate.