I have had type 1 (insulin dependent) diabetes since shortly after my fourth birthday in 1988, and since my teen years, I have not been very good at taking care of myself. If there were a Diabetics Anonymous group for people with diabetes who fail to make peace with and acknowledge their illness, I would be the head honcho; a fact that I am not proud of. It wasnít always that way. Up through middle school, my parents did most of the work for me at home. When it was time to do a blood stick or take an insulin injection, they got my monitor and syringe ready and all I had to do was be there to do it. At school, I went to the nurse every day before lunch to do a blood test and insulin. Both at home and at school, therefore, I had someone holding me accountable and monitoring all my blood tests and my injections. High school is where everything changed.
My parents were told by my doctors that it was time they let go of the leash and let me do it; ďitĒ being managing my diabetes on my own, since they would not be able to take care of me forever. I suddenly had this newfound freedom and control over my diabetes. No one to prep everything for me, no one to confirm that I had actually done my blood test and injection, no one to hold me accountable anymore. This does not mean that my parents didnít check in frequently to ask how my blood sugars were. It means that I began lying about it, and somehow I didnít even feel guilty about lying. I guess I never quite grasped the whole responsibility aspect of it. Instead, I began to neglect the illness, treated it as if it werenít there. Diabetes was an inconvenience, a hassle, a burden; a ďproblemĒ with me that I came to loathe.
In high school, a time when peer critique was cruel, and self-critique was even crueler, all I wanted was to fit in. I pretended that I was ďnormal,Ē that there was nothing different about me. I didnít want to leave class ten minutes early anymore to go to the nurseís office. I didnít want to do anything that I thought would draw negative attention to me, and thatís just how I saw it: Diabetes would make me an outcast, and at a time in life where fitting in was all that mattered, I would do anything to make sure that happened, even if it meant putting my health on the line. I stopped going to the nurse before lunch, and like everyone else, ate whatever I wanted from the lunch line, but without covering it with an insulin injection. I lived by the theory that I was still young, it would be years before any complications started, or if anything else went seriously wrong, the medics can save me. I had time. Not the best motto to live by, but in my rebellious teenage years, I used it to get by.
Eventually these theories became not just an idea in my head, but a lifestyle. Everyone around me saw my health declining. I let the illness begin to define me: I was no longer Krystin, but Krystin the Bad Diabetic. Even if no one said it out loud, I assumed they were all thinking it. Over the years, after high school and into college, even with all the emotional pain it caused my family and friends to watch me struggle to be healthy, I let diabetes win. It had me not caring, about both the illness and about myself. I had somehow convinced myself that it wasnít worth taking care of; that I wasnít worth taking care of. Perhaps I had been on that leash for too long, been under the care of my parents and my doctors for too long, and I had become too comfortable being taken care of. Even though I was enjoying the freedom of no longer being on my parentsí ball and chain, if you will, I had no idea the damage I was doing to my body by not taking my insulin, and how within a couple years, I would find out the consequences.
Let me walk you through how diabetes led to my second near-death experience. What was the first, you ask? It was an unfortunate event of the same magnitude and causation, only not nearly as exciting to make it worth retelling. Donít get the impression that I take death lightly. Itís not like I wake up and think, ďtoday would be a good day to scare the living daylight out of my family and friends.Ē Quite the contrary; but letís face it, there is no way to sugar-coat it: I almost died.
Letís go back to spring of 2006, when I embarked on a journey around the European Union, visiting 13 countries in four months. My family was living in Scotland that spring because my father was on sabbatical from the University of Minnesota, to do research in higher education at the University of Edinburgh. While he was busy working every day, I was busy traveling around Europe. Since I was a young woman, my parents did not feel comfortable with me traveling alone, so I was permitted to invite a friend to live with us, and travel with me. A friend of mine from college, Mike, agreed to come to Scotland and join in all the adventures that I had planned. Although Edinburgh was our home base, we were away travelling on the continent more than we were in Scotland.
I should mention that at this point I had gone into another downward spiral of not taking my insulin, which had been a frequent occurrence in my diabetes management for the previous 6 or so years. In fact, by April of that year it had been around 3 months since Iíd done a single dose of insulin. And a blood test? I donít think I even packed my blood glucose meter when we moved to Scotland. I am not at all proud of this fact. I only mention it to give an idea of how bad things had gotten.
My declining health was becoming more and more apparent not only in my lethargic behavior, but also my physical appearance. I was down around 105 pounds (at 5 feet, 3 inches tall), for you see, when the body does not have insulin to break down the foods that are consumed, the body does not absorb any of the nutrients. Itís kind of like putting dough through a noodle maker: it comes out in a different shape and form, but everything that you started with is still there. I was eating all the time, but my body was still starving. Starving for insulin, starving for nutrients. But I didnít care. I was having the time of my life traveling around Europe with Mike, seeing the sites, having a blast, and experiencing cultural things that were once-in-a-lifetime opportunities. I wasnít going to let something like doing an insulin shot take up my precious time.
This is the story of how I would die.
In early April, on the last leg of one of my trips with Mike, I found myself on a 26-hour bus ride from Warsaw, Poland to Paris, France, going into diabetic ketoacidosis. Also known as DKA, it is a medical emergency which results in the body not having a sufficient amount of insulin, and therefore starts burning fat and muscle. This produces ketones (acid) that enter the bloodstream and essentially poison the body. Symptoms include vomiting, dehydration, deep gasping breathing, confusion and disorientation, fatigue, and decreased consciousness. If not treated quickly, DKA progressively worsens until the body starts shutting down and every function ceases, resulting in death. For some people with diabetes, DKA can occur after a short period of time of mismanagement, around a week or two; for others, a month or more. It occurs quicker for diabetics who have had much better, tighter control over their diabetes, so as soon as their blood sugars start to get out of control, their body reacts quickly. For me, I had not been taking care of my diabetes for years, which means my body had become used to always having high blood sugars, and it was going to take a lot to finally sound the alarm. Since I had not done one insulin shot in three months, that meant that my body had slowly been building up acidic ketones and spilling them over into my bloodstream, and it was finally starting to take its toll.
Mike and I had been in Warsaw for four days, which included a weekend. Monday morning I was going to hop on the bus and take it to Paris, where I would meet my family, while Mike continued on traveling through the East. The whole weekend prior to me leaving Warsaw I stayed in bed in our hostel, feeling too weak and tired to do anything, including eat, which was strange for me considering I was otherwise eating all the time. Looking back at the pictures that Mike took during our travels, many of them that are of me are of me eating. Mike and I did a lot of eating on the cheap, since we were both on a budget. I knew why I was hungry all the time, but I kept justifying all my eating by telling myself I was just enjoying all the authentic cuisine of each country: Tapas in Spain; bratwurst in Berlin; crepes in France. Any money that didnít go toward our hostels or museum entrance fees went toward food. When I finished one meal or snack, I was already thinking about what and when I would eat next; up until the weekend we were in Warsaw, when my appetite diminished completely.
Of course it would be the morning that I was about to hop on a bus alone that my body would start to shut down. I knew when I woke up that morning that something was wrong. That thought of ďuh oh, I know this feeling,Ē came to mind. Once DKA starts, thereís no stopping it without medical attention. I had no other choice, however, but to get on the bus; my family was expecting me in Paris, after all. It was a stupid decision on my part to leave Mike, especially without telling him what was going on, and there were no guarantees that I was going to make it to Paris. All I kept thinking was that if I could just make it to Paris and to my family, everything would be OK, and they would take care of me from there.
After spending almost every hour of every day with Mike for the past month, there were many times, as is natural when two people spend that much time together, when I wanted to smack him in the face. I was ready for a break. But what I didnít realize was that I would soon need him more than ever, and he wouldnít be there. Remember I mentioned how unworried I was about anything happening because I had decided that no matter what happened to me, the medics could make it all better? That may be true in the continental U.S. and in most major Western European cities. Not necessarily true when travelling on a bus through the mountains of Poland with a dozen or so other travelers who speak very little English, and a bus driver who speaks even less. I was just thankful that the tiny bus bathroom was open for passenger use; Mike and I had been on a couple buses where the driver had locked the door, I assume so that he didnít have to deal with cleaning it out at the end of the journey.
If you are curious what hell feels like, let me tell you: Itís a 26-hour bus ride from Warsaw to Paris, during which you are back-and-forth between your seat and the bus bathroom, defecating or barfing because all your internal organs are shutting down and are ridding themselves of anything that may be blocking their path from actually exiting the body themselves. And when everything is empty, youíre still dry heaving because your stomach is still convinced thereís something in there, maybe some bit of tomato peel the size of a molecule, from your sandwich the day before. Whatever it is, even if nonexistent, is coming out! Iím surprised my stomach didnít give up on trying to get rid of everything in it and just hurl itself up through my esophagus and into the toilet. I knew right away after my first trip to the bathroom what was going on: Ketoacidosis again (the first time it occurred was in fall of 2005, and the first of my two brushes with death).
About halfway through the trip, the bus stopped at a large station just off the highway that had a convenience shop and restaurant. The stop lasted one hour, to give people time to eat and the bus drivers a rest, so everyone was required to exit the bus, and the door was locked. I was already quite disoriented, so I just followed everyone else inside. I just wanted to lay down. I found a chair in a hallway near the bathroom and sat on that, waiting and watching until I saw people heading back to the bus, where my presumed deathbed was waiting for me. There was only one bathroom nearby, and I was occupying it for the majority of our stop. Come to think of it, I donít actually think it was a public restroom. I think it was a janitorís bathroom; it was stocked with mops and cleaning supplies and was beyond dirty. Didnít matter though, at least it had a toilet. When we all returned to the bus, I curled back up in my seat, closed my eyes, and focused on my breathing. Only six more hours to Paris.
I was convinced that my final resting place would be right there on that bus, and the poor unfortunate Polish bus driver would find me after he arrived at his final destination. I say this now, but at the time I actually wasnít too worried about him. I was more worried about how my parents were going to be notified. All anybody would find on me that would be of any help was my Minnesota driverís license. Would my family go back to Edinburgh without me and hope that I somehow made my way back there? Would they finish up their time in Scotland and go back to Minnesota in May and hope that I had somehow mistakenly gotten on the wrong bus and ended up back in the U.S.? (I know, I know, you canít get back to the U.S. by bus). In between my thoughts of ďjust end this pain and let me die,Ē these questions remained on my mind.
As you can probably infer, I didnít die on that bus, but I didnít make it to meet my family either. By the time I arrived in Paris, I was in a bad condition and hardly conscious. I was suffering from every symptom of DKA, and with little left as far as hope for survival. The daylight was almost blinding; I didnít want to open my eyes. When I did, all I could see were black and white spots floating in front of me. I was having a hard time breathing. I was still curled up in my seat, and although I knew it was the Paris stop, I didnít sit up until the bus driver finally came through and made his final announcement that we were in Paris. It took a lot of effort to get off the bus and get into the bus station. I knew that the bus station was on the very edge of the city and it was a long subway ride to the city center where the Louvre is located, which is where I was to meet my family. When I walked into the bus station, I noticed an empty bench nearby, walked over to it, propped my suitcase up against it, set my backpack on the floor beside it, and laid right down on it. If the bus wasnít going to be my death bed, surely this would be. Sad to say, I didnít really care by this point. It was only a matter of time now, probably less than half an hour, before all this suffering would end.
This is the story of how I survived.
They say that right before you die, your life flashes before your eyes. I experienced not flashbacks of the life Iíve lived, but rather flash forwards, of what it might be like if I didnít make it off that bench. My mother, crying at my funeral. My brother, becoming an only child. Mike, with the unforgiving guilt weighing on his heart for years to come when he thought of me dying alone. What about all those things I had yet to do in life? Finish school. Write a book. Fall in love. As these images started to fade into a haze, they seemed to matter less and less. I stopped struggling to regulate my breathing. I accepted that this was the end. I was ready to let go.
Then, my savior arrived. I must have clearly looked like how death would look in human form, because a figure suddenly appeared next to me. A male voice asked me, ďMiss, do you need a doctor?Ē I never saw his face. I donít know if he was skinny or fat, what color his eyes were, if he had any facial hair, ugly or handsome, short or stout, had a handle and a spout. My eyes were closed and I was struggling to breathe. I just nodded and managed to mumble ďjust donít make me move.Ē No sooner had he gone off, than a woman appeared at my side, asking me the exact same question. I gave her the same mumble jumble, and off she went as well. I have no idea how much time passed; it could have been five minutes, it could have been twenty. Before I knew it, French paramedics were lifting me off the bench and onto one of those cots they use to carry injured soccer players off the field. Except this one had wheels, so really it felt like a stroller for grown-ups. I can only imagine how this must have looked to everyone else in the bus station. Had I just come from Amsterdam and ODíd on marijuana? Was I some boozehound who just spent a bus ride drinking a whole bottle of rum, chased with whisky? Did I get in some fight out in the parking lot over which cafť in Paris had the best crepes? Who knows. All I knew was that I was being whisked away to safety, and that I owed my life to one good citizen whom I would never see again, yet who, to this day, I still think about once in a while and quietly thank you for saving my life.
I donít remember the ride to the hospital. I donít know if the sirens were on, and I donít remember exiting the ambulance and entering the hospital; that whole transfer is a bit hazy. All I remember are the paramedics saying my name and telling me to look at them. ďDonít close your eyes Krystin, stay awake Krystin.Ē Easy for them to say, theyíre going strong, probably just finished their lunch sandwiches of bologna and grey poupon on a French baguette. They had no idea how hard it was for me to keep my eyes open. Before I knew it, though, I already had in two IVs, one with insulin and another with potassium fluids, as well as a Foley catheter. Wow, theyíre good. I wasnít allowed anything to drink, and wouldnít be for at least a day, even though I was thirsty beyond parched, and my mouth was drier than the Sahara Desert. All I was given were damn ice chips. They did bring me a wet sponge so that I could wet my lips, which I found myself instead sucking all the water out in an attempt to quench my unbearable thirst.
As it turns out, one of the workers from the hospital had a friend who lived near the flat my family was staying in. He called his friend, explained what had happened, and had his friend write it all in a note. This friend then went to the flat, leaving the note taped on the door, notifying Monsieur and Madame Engstrand that their daughter was in the hospital, including, naturally, the address of the hospital. All in French. Of course. When my family found the note taped to the door, they were clueless as to what it said. My mother took French in high school, but that was millennia ago. She proceeded to hastily walk up and down the street, asking anyone she passed, ďParlez-vous anglais?Ē She finally found two men walking their dog who did indeed speak English. They translated for her that mademoiselle Engstrand was in the hospital. They also helped her with the address and directing her in the general direction of it. A 45-minute taxi ride later, voila, they appear, after having utterly confused their taxi driver by handing him a note that essentially said Ďyour daughter is in so-and-so hospital.í It took them a few minutes, many hand gestures, and lots of reassuring that it wasnít his daughter who was in the hospital, but theirs.
When they arrived at the hospital and walked into my ER bay and saw me hooked up to all those machines and still in critical condition, my Mother broke down and started crying. As soon as I saw them walk in, a flood of relief washed over me. Something inside me was telling me Ďitís OK now, theyíre here. Everything will be alright.í It was as if all my thoughts and worries dispersed into the air like a bunch of balloons being released into the sky. If I was going to die, it was alright now, because at least I had seen my parents one last time. My mother came over and hugged me and kissed me as she whispered ďI love you.Ē
I was discharged after 6 days. We returned to Edinburgh, where we finished out our time there, returning home to the States in early May. After having been on the brink of death, literally, for the second time, I made a vow that I would never let that happen again. It has not been easy, and although I have not returned to the hospital with DKA, there have been other instances, such as a bad kidney infection, that have been reminders that I canít afford to play Russian Roulette with my insulin anymore. As one of my uncles puts it, I have not fallen off the tightrope, but Iím still up there teetering, and not doing very many things to keep from falling. Like a recovering alcohol or drug addict, diabetes is an everyday struggle to maintain the balance. Sometimes itís easier, and sometimes itís harder to juggle, and after the damage Iíve already done to my body, one little slip could mean falling, with no net below to catch me. Alcoholics use alcohol, drug addicts use drugs, and I use insulin (or lack thereof) as my weapon of choice. No matter what the weapon they all have the same ultimate result: death.
I donít fear death; I fear the things that Iím going to miss if I die too young. I still have many aspirations and dreams in life that I want to achieve. I canít achieve anything from the grave. I will not let the thought ĎI canít do the right thing for the rest of my life, the hill is too steepí keep me from living my life. Even though Iím still climbing that hill on a daily basis, Iím taking it one day at a time instead of looking at the rest of my life. I do the best I can, but I donít expect perfection, because thereís no such thing as a perfect diabetic. Sure, the finger pricks and the insulin injects may be painful, but the pain is temporary. Losing my eyesight, a kidney, or a foot is even more painful, and lasts forever. I will proceed to build on small victories, because as that same uncle mentioned earlier said to me once, ďthe war is won in victories in small battles on a daily basis.Ē I CAN win the war, one small battle at a time.
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