The Life That is Waiting For Us - Amylia's Story
The Life That is Waiting For Us - Amylia Grace's StoryWe must be willing to get rid of the life we've planned, so as to have the life that is waiting for us.
- Joseph Campbell
As I sit here typing, I am looking out of my apartment window at Taipei 101, the tallest building in the world (for now). I feel blessed to be here, in this amazing city surrounded by mountains and ocean, skyscrapers and temples, living the life I have want to live. Do I wish I didn’t have Type 1 diabetes? Of course. Do I remember life before diabetes? Not really. Do I struggle with the highs and lows of this disease that is the one constant in my ever-changing life? You bet. Do I let diabetes get in the way of my dreams? No way.
As self-admitted travel junkie, traveling to over twenty countries as a diabetic has not always been easy, but I’ve never considered not doing something I passionately wanted to do just because of my diabetes. Does having diabetes change things? Yes. Do I have to plan and negotiate and give up a bit of the spontaneity that I love? Sure. But I don’t let it stop me. I have hiked up the Alps in Bavaria, bicycled mile after mile through the hills of the Schwabish Alb, walked 100 sweltering kilometers over three days through the rural villages of Madhya-Pradesh, India, gone white-water rafting down the rapids of Hualien county, Taiwan, and ran a half-marathon past the lava pits of Kona, Hawaii in the heat of the summer (for the ADA). I’ve lived in both Norway and Eastern Germany for a summer, Stuttgart, Germany for a year, volunteered in rural India for three months, traveled through Europe and the U.K., and am currently living and working as an English instructor at a university in Taipei, Taiwan.
I believe I have done all this not despite my diabetes, but because of it. Having diabetes at a young age made me wise beyond my years, and opened my eyes to both the fragility of life and the inner-strength inside myself. I don’t remember having that youthful feeling that I’d live forever. I knew that life was precious, and that it wasn’t all fun and games. My mom and dad gave me my shots for a while, but I soon took over for them, and perhaps the constant sticking—of the syringe needle or the lancet, reminded me again and again how I could bleed, how pain came in small and not so small doses, how my very life depended on an outside source of insulin, and that if that were true, then I had better get to living.
Diabetes affected my life before I was ever diagnosed with the disease. Luckily for me, I have an identical twin sister who is my very best friend, and who, unfortunately, was diagnosed with Type 1 diabetes three years prior to my own diagnosis. My brave eight year old sister soldiered on, testing and getting shots, going to diabetes camp and learning the ropes first, for both of us. So it often is with twins—sacrificing for each other, and trying to protect one another. I only spent eleven minutes in this world before my sister came along, and another eleven years without diabetes. I remember my sister’s diagnosis in second grade, and how I told our friends and the kids at school that my sister was in the hospital with diarrhea, having misunderstood the diagnosis.
Life went on, and I spent three years living with my sister’s diabetes, before getting it myself. My sister’s diabetes came after a severe bladder infection, while the onset of my diabetes was caused, I believe, in part by a bad case of the chicken pox. After my sister’s diagnosis, I don’t remember the doctors being overly concerned about the fact that I, too, might develop the disease, and I don’t recall any special testing or precautions being taken, not that anything can prevent a child from getting juvenile diabetes. Funny thing is, it was my new step-mother who recognized the signs of my own diabetes before any one else: rapid weight loss, fatigue, excessive thirst and constant trips to the bathroom. Luckily, I think they caught it rather early on, and a trip to my pediatrician confirmed it. Instead of taking a piece of candy or gum from the bin outside the reception area of my doctor’s office per usual, I followed doctor’s orders and went immediately to the hospital (after a brief trip home to pick up my beloved stuffed animals, Bubba and Christmas, whom I refused to go to the hospital without).
So I spent my fifth grade Easter vacation not eating the candy eggs and chocolate bunnies in the Easter basket my mom hid for me every year. Rather, I spent my school holiday in Milwaukee’s Children’s Hospital getting my blood glucose down, practicing giving shots to oranges, and preparing myself for the inevitable and unenviable tasks that follow any diagnosis of Type 1 diabetes: multiple injections, dietary changes, and endless glucose testing. In 1989, glucose was tested with Chemstrips that showed a color that matched a numeric code on the vial for an approximate level of blood sugar. It was not an exact science. We’ve come a long way since then.
Luckily for me, my family was supportive of my desire to live as normal a life as possible, and so, never treated me as though I had anything to be afraid of, though I am sure my parents kept their fears deep within their hearts. As a young girl, I started learning German, despite my mom’s proclamation that French was a much more beautiful language. Why do you want to learn German she’d ask? Little did she know how the permission to take German would translate into dreams of living abroad.
After relocating to Green Bay with a new step-father and step-sister, I started to want to rebel from my diabetes. I remember thinking I was fat (at all of 130 pounds) and that if I just stopped taking my shots, I could lose a lot of weight quickly. I contemplated this for a while, but luckily, my teenage brain knew better and I never did it. I remember wanting to get away and experience life beyond the boring streets of my new home, so I applied for a scholarship to study in Germany. I told my family about it, and, luckily, they let me apply. I ended up with a partial scholarship from Youth For Understanding, and so, at the tender age of fifteen, tears streaming down their faces, my family bid me farewell, and saw me off on what would be the first of many adventures their little girl would take with diabetes, but without them.
As a fifteen year old, I was a summer exchange student to the outskirts of Eastern Berlin, Germany. Just a couple years after the fall of the Wall, I had the privilege of living with a beautiful family that supported me, despite my poor German and my diabetes. They didn’t speak any English, and my German was limited to two years of middle school instruction. They didn’t know much about diabetes, but did their best to help me. I remember that diet coke (Coca Cola Light) wasn’t easy to find back in those days, and it was rather expensive, too, but my host-family stocked their cellar with so much diet soda, you’d think they were preparing for the apocalypse. I also remember sneaking Nutella during a dawn low blood-sugar, not really able to fully explain myself or think clearly. My host-mom found me with my face buried in the cupboard with sweet, creamy Nutella smeared on my face, and tried to tell me it was okay for me to eat it at the table; I didn’t have to hide it. I remember the embarrassment I felt, knowing that I was busted and couldn’t really explain myself well. I sheepishly nodded and made my way back to bed, cheeks red with shameful embarrassment. A few weeks later on a powerful but sobering visit to Sachsenhausen, a Nazi Concentration Camp, I met another exchange student, also a type 1 diabetic from Chicago, with whom, a year later, I would share my first kiss, and who became my very first boyfriend (albeit long distance).
Fast-forward a few years, and you’d find me living back in Germany as a Congress-Bundestag scholar during my senior year of high school, living with a host-family near Stuttgart. My host-sister was also a type 1 diabetic who had just returned for living in Texas for a year, more proof that diabetes can’t hold us back from our dreams. It was a profound experience for me, and changed my life in myriad ways.
My year in Germany introduced me to strong beer, hard alcohol and coffee, all of which I drank at various times without much thought to my diabetes. It was a year of exploration and new experiences, and luckily for me, when I began my freshman year at the University of Minnesota, Twin Cities, my roommate, who would later become my best friend, was a Mormon, who refrained from alcohol or any kind of stimulant at all. She was a good influence on me, and helped me avoid some of the craziness that inevitably ensues as a college freshman. We occasionally got drunk, despite her religious upbringing and my diabetes. We hit a few frat parties, went to New Orleans (hello Bourbon Street) and Miami Beach for spring break, and had our own lapses of good judgment, but without her, I may have started down that dangerous road of self-destruction.
I finally went on a pump during college, and remember fainting for the first time in my life as I felt the sensation of the needle from the infusion set pressing into my stomach and the cannula remaining inside. It got easier from there, and I made decent strides in my glucose control, but decided to go off the pump for the summer after winning a grant to volunteer in rural India for three months. I was scared of hygiene issues and was told that there may not be any running water or electricity where I would be staying. Luckily, I did have electricity, so my insulin stayed cool in a small refrigerator, though there was no running water or toilets. It was very rustic and rural, and though volunteering and teaching English at the ashram, a school for tribal girls in Dimrapal, Madhya-Pradesh, India was one of the best things I’ve ever done, it was far from easy, and took a toll on my health.
Toward the end of my three months in India, I wound up passing out at the monastery I was staying at in Bodhgaya, and instead of obtaining Enlightenment like the Buddha did meditating under the Bodhi tree, I spent several days shivering and burning up, suffering from a bad case of flu-like symptoms that later revealed themselves to be malaria. I somehow made my way to Dharmsala, home of the Dalai Lama, and realized my test strips were gone. I was sick and worried, and asked my Finnish travel companion to help me secure a doctor who could test my blood sugar. We found an English speaking doctor who made house calls, but to my dismay, technology in that area was lacking, and they didn’t have any test strips or a glucometer. The doctor took my blood with a prehistoric looking needle, and called me four hours later to tell me my blood sugar was 208. Okay, but that was four hours ago. Not too helpful.
I decided I had to get back to the States as soon as possible, so I made the 24 hour train ride back to New Delhi alone, and somehow made my way to the airport. Unfortunately, I was weak and disoriented and called my mom to tell her I was coming home early, but was rather incoherent and didn’t make much sense. I didn’t know it at the time, but my mom was so worried about me after that phone call that she had all of my colleagues at the International Office at the University of Minnesota trying to contact anyone in India who knew where I was. I scared her pretty badly.
I ended up fainting in the airport, where a doctor (finally) correctly diagnosed my malaria. I was so weak that the doctor refused to let me fly. Somehow, the thought of spending time in an Indian hospital was enough for me to strongly advocate for myself, and managed to convince the good doctor that I could make the long trip home to Wisconsin. While my mom instigated a manhunt to find her daughter, I finally boarded the plane home, flight attendants dutifully attending to me throughout the flight to make sure I was okay. I did end up calling my poor mother from the airport in Amsterdam to let her know I was okay, and ask her to pick me up in Chicago the next day. My worried family promptly drove me to the hospital, despite my protestations, where I spent another week recovering from jet lag and malaria. I was just twenty years old, and my body recovered, quickly gaining back the weight I had lost, as well as its strength. It was a difficult time for me, and my final year of university was spent getting back on track and completing my double major in English, Creative Writing and German.
Fast forward a few years to my first year as a freshman English teacher in the inner city of Milwaukee. It was a very stressful time for me, dealing with daily lesson planning from scratch, the behavior issues and drama from my students (including having my life threatened), and my own insecurities as a new and inexperienced teacher. I ended up in a pretty bad depression, and as anyone who has struggled with mental health issues knows, self-care is often the first things to go out the window.
I started gaining weight, eating for comfort, and disconnecting from my diabetes, my pump, and my life. I tested and took my shots, but my eating habits became so lax that I gained forty pounds over the next two years. I ended up on anti-depressants, which gradually helped, but I ended up quitting my job shortly before the end of my second year teaching, and voluntarily checking myself into a day program at Milwaukee Psychiatric Hospital over the Easter holiday. It was fifteen years after my first hospitalization for my diabetes, and I found myself again fighting for my health, though this time around it was my mental health that was taking a toll on my diabetes and quality of life. I decided to get back into the game, and start taking care of myself again, doing whatever needed to be done to ensure that my health was in-balance. I started therapy, tried various anti-depressants, and changed jobs, which helped.
Though there were some dark moments, I learned so much during my years as a teacher in Milwaukee. I found my depression to be much more debilitating than my diabetes ever was. It took away the passion and love of life that my diabetes gifted me with early on.
I’m currently back to my childhood dream of teaching, this time teaching budding scientists and engineers as a university instructor of English as a Foreign Language at the National Taiwan University of Science and Technology. I’ve found a wonderful group of students, actively engaged in their learning, and very respectful of me as a teacher. I’ve kept my depression at bay and under control, and have found that the mix of Eastern medicine and philosophy combined with the advances of Western medicine available here in Taipei has enhanced my knowledge base and is allowing me to explore new avenues not previously known to me.
Though it’s been a struggle these past seven months, dealing with the different foods available here and the prevalence of oily restaurant food combined with the Taiwanese habit of eating rice with every meal, I’m learning what works for me, and what doesn’t. As Kerri says, my diabetes doesn’t define me, but it does help explain me. My friends here have stopped bugging me about leaving too much rice in my bowl, and understand that I have sensitivities to certain foods and take care to ensure that snacks and juice are available to me at all times. They’ve taken me to multiple doctors and hospitals, in search of decent diabetes care, as well as helped me navigate the pharmacies and intricacies of the National health insurance adopted here in Taiwan (test strips and pump supplies aren’t covered).
I recently celebrated my thirtieth birthday and my eighteenth year of living with type 1 diabetes, complication free. I guess that officially makes me an adult now, though I sometimes still feel like that little girl, scared inside and wondering what the future holds. I don’t voice those fears often, but when I start to feel blue, I just pick up the phone and call my twin sister, who is the only person who understands me when no one else can. She’s my role model, having trained for and run in a handful of marathons (two for the ADA), and given birth to two healthy baby boys, now three and one, having maintained meticulous glucose control throughout her pregnancies. She and I live very different lives, but we are both proof that it really is mind over matter, and that you can achieve your dreams, whatever they may be.
You may read more of thoughts and musings over at my blog, “Amazing Grace." Thank you for giving me a chance to share my experience, strength and hope with you today. May you all continue to be blessed with healthy and happy complication free lives, with or without diabetes.