My older brother was diagnosed with type 1 diabetes in the mid-nineties, when he was 14 and I was 11. It was right around Christmas time and my brother had been sick with what we thought was the flu. He had been to the hospital for treatment, but was sent back home with directions to simply rest and get better. My brother remembers going to the bathroom frequently and feeling thirsty, as well as sleeping in later than usual and losing a significant amount of weight. No one ever considered diabetes. It wasn’t until a co-worker of my mother’s overheard her describing these symptoms that anyone suggested the likely diagnosis. The co-worker’s son had just been diagnosed with type 1 and had a similar list of symptoms. Hearing this, my parents rushed my brother back to the hospital for additional testing and—just like they say in the health department warnings—a quick finger prick revealed his elevated blood sugar. Diabetes. Who knew? No one on either side of my parents’ families had any kind of diabetes and now their 14-year-old son was lying in a hospital bed receiving an insulin IV.
My sister has fond memories of the children’s video that my parents brought home from the hospital for us to watch, where insulin monsters gobble up glucose blobs and reassuring doctors explain to children that diabetes is not scary; it’s just different. My family handled it as well as anyone could, and I’m sure my parents worried about things more than we knew, but life moved on with a few adjustments to the routine. I can remember my mother measuring cereal into bowls and looking for exchange information on nutrition labels. We switched to drinking diet pop and generally had a good system down.
Although no one knows exactly what causes type 1 diabetes, genetic factors play a part, and siblings of a type 1 are more likely to develop type 1. Knowing this, my parents took my sister and me to the hospital for screenings to see if we might qualify for ongoing clinical trials that could lead to earlier detection of type 1 or even its prevention. Marcia, the nurse at Children’s Hospital in Columbus talked us through the procedure and my parents signed all of the paperwork. I don’t think I ever remember feeling scared, except about the needles involved in drawing blood, but Marcia was reassuring and kept me calm. At that time, the researchers were looking for patients who did not have a genetic marker to indicate “immunity” to diabetes. Our blood tests revealed that my younger sister had the you-can’t-get-diabetes marker on her DNA, but I did not. And, as it was explained to me, while this did not mean I would get diabetes, it was an indicator that it would be possible. I was enrolled in the Diabetes Prevention Trial at the age of 12 and remained an active participant through year 2003.
From the age of 12 onward, I took daily oral insulin and carried a glucose meter to school every three months, where I was responsible for reporting my blood sugar levels on a high-carbohydrate diet. For the duration of the study, I had alternating Oral Glucose Tolerance Tests, Mixed Meal Tolerance Tests, and Intravenous Glucose Tolerance Tests every six months. The overall intent of these various measurements was to see how my body responded to glucose, and the tests always came back with perfect results. Since I was in the arm of the study taking oral insulin, my results were being compared to those in other groups, such as oral placebo, subcutaneous insulin, and subcutaneous placebo. When the study ended, I was a sophomore in college and far away from the 12-year-old who had entered the study. The study was found to be inconclusive, unfortunately, and the researchers told us they hoped to run further trials in the future. I now know (because of assertive research I’ve done in the last two months) that when I came in for my last visit, I tested positive for three different kinds of autoantibodies; a strong indicator of type 1.
But I didn’t live my life thinking I would get diabetes, or waiting to get diabetes. No one sat me down and told me that I was at high risk and I certainly did not let the possibility infringe on any of things I wanted to do in my life. I finished college, worked at a law firm in Berkeley, came back to Ohio to teach for three years, and just recently had relocated to Austin, Texas, where I was volunteering at law firms in the special education arenas and teaching at an early childhood center
A few months ago I was contacted by the Diabetes Prevention Trial’s sister study, the TrialNet Phase 3: Follow-up Risk Assessment for type 1 diabetes. The coordinator asked me to come to the nearest study site which was in San Antonio, for a follow-up screening and expected enrollment in the TrialNet study. I was happy to participate. So, two months ago, I hopped into my car, feeling fine, drove an hour down to San Antonio, confidently walked into the research center, and had a fasting blood sugar level of 263.
I knew what that meant before anyone said anything. The nurse calmly turned to me and explained that these meters can be off sometimes, that I might be nervous, that we should go ahead and get my height and weight then come back to test again. I nodded, numb. I stepped on and off the scale, I stood against the wall, I finished filling out the forms, but I did not feel a thing.
“There’s no way,” I kept repeating in my mind. “There’s no way.” I was sent to the restroom to give a urine sample and I have no doubt that the nurse sprinted over to her supervisor to tell her what had happened. I can picture them fumbling for the phone, paging the on-call doctor, trying to throw together a plan for what to do when I came out of the bathroom. Whatever they did, they kept everything entirely cool, calm, and collected. The nurse smiled at me and I smiled back; surely this had been some kind of technical error. I sat down and once again held out my finger, only to see the screen flash 265. Disbelief filled my head and tears filled my eyes, but some small ball of hopeful determination filled my heart. And that is what has carried me through these first couple months of living with type 1 diabetes.
Though I’ve just passed my nine-week anniversary, it seems like nine million years ago that I started the injections, the carb counting and the scheduling of appointments; the seemingly unending list of things that people with diabetes do. While no one expects to be diagnosed with diabetes, I was especially surprised when after years of close monitoring, after years of everything being okay, diabetes sneaked up on me, without me even feeling it.
After my diagnosis, I thought of my brother; how he carefully manages his treatment and rarely complains. I thought of the uninformed people who asked him uninformed questions about his disease. I thought of my parents and my sister; how I knew they would support me and how I would somehow make my way through this shock and come out on the other side.
After watching my brother “do this” for sixteen and some years, I thought having diabetes would come more naturally to me. I was wrong. My body is not a machine, I keep telling myself. I know it will get easier, but this has been far more overwhelming than I thought it would be. My numbers have been all over, I can’t seem to keep my injection sites straight, and I’m mostly just tired. It feels impossible that this will be forever.
I celebrated my 27th birthday just two weeks after my diagnosis and, as a gift to myself, I bought a membership to the rock climbing gym I kept meaning to join. The feeling of climbing is one I have always enjoyed–arms and legs stretching to lift you higher and higher until you have to yell down that you can’t go any further. While it used to be my mom or dad who had to climb up the tree (or the piano, cupboard, or rocking chair) to help me down, I now take comfort in my climbing partner belaying me down on the ropes and congratulating me on reaching the top of the wall. Then I start again. I climb again. I am training my body and I am learning a new way to move about a treacherous slope. While I’m climbing, I reflect on the trials we experience in our lives. There may be pebbles on our paths, like flat tires on cars and burnt pans on the stove, but we will learn how to kick them out of the way. There will be huge stones, like job lay-offs and broken friendships, that roll in front of us and, and even though it requires all of our strength, we will learn how to push them from the trail. When we come across boulders, though—gigantic rocks that are simply impossible to move—we will learn how to climb over them. Slowly, and with ever-increasing grace, we learn to traverse even the most precarious of obstacles, one step at a time.
I have my climbing shoes on. While I don’t know the exact route and, some days, can only hope to move sideways between the footholds, I am choosing to climb.
i was diagnosed with type 2 diabetes on December 31, 2007.i take care of my feedt, and i am getting more exercise, and eating healtheir. i lost my mom to diabetes on october 27, 1997, and i lost my grandfather to diabetes when i was only 9 months old. i miss my mom alot, we were very close, & i miss my grandfather. i struggle with my diabetes, and i want to get my blood sugars better under control.
Emily, I’m so glad you shared your story. I’d be interested if you’d recommend the screening trials to other people who might be at risk — I often wonder whether I’d have wanted to know I was at such high risk if there were nothing proactive I could do to stop the disease from occurring. It’d be emotionally tough, though I suppose there’s some comfort in knowing you’re helping move research forward. Also, who knew there were so many type 1 climbers? My husband and I started going to a gym in Oakland a couple years ago and I love… Read more »
I was just diagnosed a few months ago while roadtripping around the country. In fact, I was diagnosed while living out of my truck in Hueco Tanks, TX. I have been trying to contact other climbers with type 1 and would love to hear from you to maybe get some tips and tricks for active diabetic climbers. Keep your head up!
Hi Emily, thank you for sharing your own story. Hope my daughter had not caught type 1 until at a later age like yours, but she wasn’t as lucky as you: she got it at her sixth birth day. For the year past, my daughter, my wife and I had been fighting constantly against the disease: checking BG, administering insulin, measuring food, routinely visiting hospitals, doing eye exam…, and I’m pretty much sure we will keep doing so down the road till one day the cure is found. The good news is she’s still in her honeymoon, and her latest… Read more »
Thanks, Emily, for sharing your story– and good luck, both in handling diabetes and climbing! Where in Seattle do you climb? I went to a gym up there in Tacoma once; maybe next time I’m in the area, we can get together for a diabetics-who-climb victory party :)
Emily, what a great story! We too are climbers and we too have a six year old little girl with type 1 .. .she’s quite a climber herself! As shocking as your diagnosis has been, it’s great to see that your facing it head on and attacking it with your best foot forward . .. diabetes is one crazy and unpredictable world, but you attitude will certainly help! Keep climbing!