A post on living with a disability by Colleen Niswender
I was diagnosed with Type I diabetes on March 16, 1981 at approximately four o’clock in the afternoon. Upon my admission to the hospital, I was twelve years old, weighed a very unhealthy 54 pounds, and presented with a blood sugar of 649 mg/dL. 100 mg/dL is normal.
My current endocrinologist recently told me that the dogma in the 80s was that the life expectancy of a Type I patient was twenty years from the diagnosis date. But I’m still here, forty-one years and change since my diagnosis. So, settle in. I have a story, and it looks like I have some time.
The staff members at the hospital were not clear in communicating to me exactly what my diagnosis meant. Maybe they were trying to break it to me gently and didn’t know how to outline the numerous dietary goodies that were now routinely banned from my daily life. In this spirit of denial, the nurses let me fill out the hospital meal menu card and request whatever I wanted, but the only thing that ever showed up for breakfast was Cheerios with skim milk and a piece of dry toast with no jam, despite the fact that I had asked for waffles.
This was frustrating.
During my week-long hospital stay, a girl of eight or nine named Tess was assigned to my room. She was there to have all of her teeth pulled and replaced with dentures. When she smiled, the poor child’s teeth transitioned, via an ombre pattern, from a dark, cavity-filled chocolate color at the roots to Harvest Gold crowns. (Young people, take note: this was 1981. In various neighborhoods throughout suburban America in the mid-1970s, including Northeast Ohio, kitchens were being installed with “warm autumn tone” appliances, the most popular of which were called Harvest Gold and Avocado Green. Our house had Avocado, which my mom liked, but we knew plenty of neighbors who had scored Harvest Gold, which I thought was the infinitely better option.) While Tess’s dental situation could have been genetic, it soon became apparent that it was actually tied to the fact that her visitors provided her with shockingly large amounts of candy, which she was eager to share. One day, she handed me two Life Savers, one green and one orange. It’s amazing how the mind has the ability to deeply embed certain, extremely specific, memories. I will never forget the colors of those two Life Savers.
So, of course, I ate them. And then, based on the DEFCON-5 level reaction of the nursing staff when my blood sugar was next measured, I lied about it, which didn’t do much good seeing as half my room was occupied by a Walmart candy aisle. The kid next to me never even brushed her teeth, for God’s sake. What was the big deal? I still maintain this was their fault because no one had yet told me that Easter, which was the following month, was going to consist only of a fake grass-filled basket full of sugar-free gum.
Cadbury Crème Eggs. Jelly beans. Chocolate bunnies. All ripped away like the turkey dinner stolen by the Bumpus hounds on “A Christmas Story”.
When I returned home from the hospital, I was laden with a thousand paper handouts, a urine testing kit for glucose, and an orange. The orange was pivotal. It’s what they gave you to take home and “practice” injections in your Avocado Green kitchen. The orange had already survived numerous violations of its rind, as well as the absorption of a small pharmacy’s worth of insulin, as my regimen was set at four injections per day. Despite this, at that point in time, the orange still looked pretty decent. The smooth outward appearance of the fruit, however, did not reveal the eventual consequences that were destined to occur from the repeated injection of porcine insulin into human skin. These consequences included allergic reactions to wherever it was injected, resulting in pitting, odd lumps, and itching. Clearly good for a budding teenager’s self-esteem.
When I returned to school, I noticed that people were giving me the side-eye. I heard students asking their friends in hushed tones if they could “catch it” or if “I was going to die soon”. My mom had said no, it wasn’t contagious, and I’d be OK if I just took all the shots and did what the doctors told me to do (it’s a good thing we didn’t know my current endocrine guy at the time, because that would have been really depressing), and stuck to the sugar-free gum. I would note that this kind of gum in the 1980s tasted terrible, as did another horror of the time, the one available sugar-free soda called “Tab”.
I accepted the explanation that all would be fine until we read a book in seventh grade called “The Hiding Place” by Corrie ten Boom. It’s quite a riveting story of a family who assisted in secreting away Jewish people during World War II. At one point in the book, one of the narrator’s aunts is diagnosed with diabetes. Tante Jans undergoes testing each week, and a good result is for the test to return a clear liquid; black is a sign of impending death.
Guess what happened.
I would note that this event did result in me committing one small act of vandalism, which is a lot for me because I’m pretty much a rule-follower. After reading that story, I started to have thoughts about my longevity. I mean, who wouldn’t? Even though Tante Jans undergoes a spiritual awakening and throws herself into her work during her remaining time on Earth, I had a reaction more appropriate for someone at thirteen: I carved my name into the seat of the wooden desk I had been assigned in class, an everlasting testament to the fact that I had been there. And then, a couple of days later, Rule-Follower Me scratched it out because some traits are so ingrained that not even a life-threatening illness can induce those kinds of changes in DNA.
I’d like to say my diabetes control improved at this point, sort of like a “scared straight” situation. Gentle reader, it did not. In fact, it got substantially worse for quite some time. There is a lab test that measures glucose control over an approximately three-month time period called the Hemoglobin A1c test. Glucose attaches itself to red blood cells, which regenerate over a two- or three-month span. Normal, non-diabetic HbA1c results are in the range of 4-5 percent, depending on where the test is done. While my glucose control now is quite good, during high school and my early college years, I routinely ran in the range of 13 percent, which equates to an *average* blood sugar level of around 325 mg/dL.
Ice cream. Such a weakness.
Granted, in those days measuring blood glucose at home was in its infancy. It was hard to tell exactly what your glucose level was at any given time, and urine tests only revealed what your blood glucose had been four hours before because it takes that long for glucose to move from blood to urine. These limitations were compounded by the fact that I was a teenager and, therefore, a general pain in the a$$. Overall, this scenario resulted in the greatest of ironies because, while trying to be like everyone else and eat whatever I wanted, I was ensuring that everyone around me knew I had “some kind of problem” as the main side effect of hyperglycemia is having to use the bathroom every fifteen minutes. Careless whispers: “What is wrong with that girl?”
That reminds me: Wham! was also very popular around this time.
I was in college in 1989 when the movie Steel Magnolias came out. For those who don’t know the story, Julia Roberts plays a character named Shelby who has Type I diabetes. This was before Julia appeared in Pretty Woman, but after Mystic Pizza, and she was still on the upward portion of her breakout-star-trajectory, so I suppose she was giving it her all. Over the course of the story, we learn that Shelby’s greatest desire in life is to be a mother and, despite warnings not to get pregnant, she has a baby and goes into kidney failure. And guess what, you guys. SHE DIES TOO.
I will say that one of my first thoughts was, “Well, if I ever DO have a baby, I am certainly not naming it Shelby.”
In 1991, I came to graduate school at Vanderbilt and joined the Pharmacology Department. Yeah, I know. I’m still here. Several years in, I was going to attend the Society for Neuroscience meeting for the first time. It was in Anaheim. In retrospect, just about every location in the US is better for a meeting than Anaheim. Junior trainees, if your PI gives you the opportunity to attend a meeting in Anaheim, immediately find a conference in Breckenridge, no matter what it’s about, and go to that one.
Anyway, I hadn’t yet been to Anaheim, or to SfN, so I was pretty excited. I was paired with several other graduate students and we met to talk about the conference and arrange our travel plans. After this discussion, one of the other students went to her advisor and said she was uncomfortable rooming with me because of my diabetes. What if something happened to me and she didn’t know what to do? This was sobering. I certainly didn’t want people to feel uncomfortable around me and I didn’t want to be a burden, but I hadn’t been presented with this type of reaction since middle school. I began wondering how many people thought the same thing and just never told me.
In graduate school, I faced another difficult situation. I transitioned off my parents’ health insurance, but the graduate school insurance at that time did not cover pre-existing conditions, and I needed to obtain my own health insurance policy at a price of over $3,500 per year. At the time I started graduate school, stipends were approximately $12,000, and I had to take out student loans to pay for my insurance. That’s dedication to your craft, people. My last year or so in grad school, Tennessee adopted TennCare, a Medicaid-like plan for low-income individuals and those with pre-existing conditions who didn’t qualify for other insurance. While this helped my finances tremendously, I was no longer able to see physicians at Vanderbilt as most did not accept TennCare payments, requiring me to switch to a low-income clinic. This was my first real introduction to the struggles for adequate health care that cut through incomes but also disproportionately across racial lines. These are ever more apparent today.
My husband and I moved to Seattle for post-graduate training in 1998 and I was put in touch with an outstanding endocrinologist who also had Type I. While it was nice to experience both medical care and empathy from the physician you rely on the most, this actually led into a gray area. For example, he and another physician who also had Type I used to compete to see who could achieve the lowest HbA1c. In general, this is a bad idea. For a Type I individual to achieve this, blood sugar levels need to be quite low almost all of the time. Hypoglycemia results in a surge of glucagon from the liver, causing the release of epinephrine and resulting symptoms such as rapid heartbeat, shaking, sweating, confusion, and dizziness. It’s not pleasant. I try to avoid it. For some people, the longer they are diabetic, the milder these symptoms can become. I’ve just passed 40 years and my symptoms are not as strong as they used to be, partially because of nerve damage induced by hyperglycemia. Also, the more time a diabetic spends with very low blood sugar, the less sensitive an individual becomes to the epinephrine-mediated symptoms. Hypoglycemia becomes very dangerous under these situations.
Case Study: low blood sugar and driving a car is not a good combination. I can say this from experience because one time I was driving my daughter, who is not named Shelby, to a basketball game in Hendersonville and we were on the loop around Nashville, coming up the west side and we should have turned north. Despite the fact that I had been to this gym before and really thought I was going the right way, we ended up at the airport, and I had no idea where we were until Not-Shelby finally looked up from her phone.
I don’t drive very much.
Type I diabetes is recognized as a disability under the Americans with Disabilities Act. Despite the fact that I think most people with a disability desire to live as normal a life as possible, I’d be kidding myself if I didn’t recognize the ways that this disease affects, and often interrupts, my life. Even in the best of times, it’s constantly there. Much of it is simply woven into everyday life, but sometimes there is a jolting reminder that rears its head like a toddler going boneless during a meltdown at Kroger.
For example, while I do try to exercise and I know there are plenty of Type I diabetics who are serious athletes, I am not one of them. I sometimes forget that, in my regular life, my daily routine pretty much consists of me getting up from my computer, walking to the bathroom, stopping at the fridge to pick up a Diet Dr. Pepper, and then coming right back to my office.
But lots of scientific meetings are at great ski resorts (the aforementioned Breckenridge comes to mind). Folks who ski always look like they’re having an excellent time. The ones who are really good at it look fit and healthy. The clothes are also super-cute. I made up my mind that I was going to learn to ski and then go to important meetings and impress big science names with my skiing prowess and the high fashion I was going to parade around the resort. I could see me hob-knobbing over a cup of (sugar-free) hot chocolate with a Nobel Laureate in a little chalet restaurant halfway down the slopes, dressed in our uber-cool ski attire and bonding over glutamate receptors.
We had friends who invited our family to Deer Valley, Utah, one year for Spring Break. Not-Shelby-1 and Not-Shelby-2 were about 9 and 7, and I figured we could all take lessons together. Our teacher, Mr. Nick, was dressed in the snappy Deer Valley staff outfit of forest green canvas pants and a matching jacket. He began with some basic techniques and then took us up to a fenced off area where there was something called the “Magic Carpet”, a very slow, trawling platform used to move students up to the top of a very shallow hill. Within the confines of this roped off area were all the newbies, young and old alike. Even if I didn’t yet have any highly attractive ski clothes, I felt like I was on my way to greatness.
I would note that we were surrounded by three- and four-year-olds in classes where one of the instructors spent half the time walking up and down the hill with a kid on their back en route to or from the bathroom. Parents, if you have a three-year-old and put them in Deer Valley Ski School, expect to pay 200 dollars a day for a guy in green overalls to take the kid back and forth to pee. While I agree that this is probably completely worth it, I just want you to be realistic about where your money is going.
I congratulated myself for my achievements during the lesson. I learned to stop without falling, which, in my opinion, was the most important take-away and showed a strategic ability to weed through all of the various parameters and focus on the big picture. Very scientific. Smartly, I took the day after lessons off, resting like professional athletes do before a big race.
The following morning, I rode the Snowflake Express chair lift to an imposing elevation of 200 feet. I shushed down the slope called the Wide West (not Wild, Wide) several times and was pretty proud of myself. Suddenly, my reality transitioned into a period in which it was as if I had turned on the Weather Channel and Jim Cantore was broadcasting from my town, telling me there was a hurricane coming and I needed to evacuate. I imagined Jim on the TV, wearing his slick royal blue jacket with the Weather Channel logo, leaning into the wind and holding onto his hood while he was being pelted with rain at the front of the storm yelling: “God d*amn it, Colleen, you are pancreatically challenged. What are you doing?”. Having to, in Deer Valley vernacular, “make your pizza” to stop yourself while plowing all the way down a hill is just not that easy. In fact, it’s exhausting and a physical experience for which I was woefully unprepared. With Jim’s face filling the front part of my vision, I fell for the first time.
Did I mention I was wearing a bright red, bulky, thigh-length winter coat, and not the cool ski one like I had envisioned in my future world of science-on-the-slopes stardom? This point is worth highlighting. I looked up at the sky, lying right next to the main lodge with all the people and kids from the ski school sitting outside enjoying the relatively warm spring weather while drinking their ultra-low-fat lattes with no foam. I mustered all of the energy I could and stood myself back up. At that moment, a trail of six preschoolers with a center of gravity so low they could have fit under an 18-inch limbo stick glided past me in a perfect, snakelike configuration. Intensely cute Mr. Deer Valley-Ski-Instructor-Guy shouted, “You guys are so awesome! Come on, we’re going for hot chocolate! And to the bathroom!”
I swore under my breath. I was not about to be beaten by a bunch of four-year-olds. I don’t care how many amazingly adorable helmet covers their parents had purchased; those dinosaur- and princess-clad children were going down. I headed for Snowflake again, resisting the urge to punch the guy running the lift in the mouth when he asked me if I needed help with my poles. I am a serious skier here! Don’t you see that? I am conquering the Wide West! I am winning!
I rode to the top and surveyed the view from the crest of the hill. It was about 11 AM. I thought about Jim and his warning. Who was I kidding? I was already exhausted. My legs felt like rubber. My blood sugar was running in the high 40s, tops. I ate a few Laffy Taffies. I knew I had to at least get down to the bottom. About halfway down, I realized I was not going to be able to stop myself from colliding with a construction fence surrounding a little area that said, “Keep Out!”. I crashed with almost no noise because the fence was actually made of something akin to plastic trash bags, offering none of the support required to right oneself yet colored fluorescent orange to attract maximal attention. With everything I had, I attempted to stand, and, in this last feat of desperation, I broke one of the cardinal rules of skiing—don’t let your skis point up the hill. This is simple physics, but sometimes your mind tries to convince your body to do things it ordinarily would never attempt if not temporarily cognitively impaired.
I lay there on the ground, completely spent, sprawled under the Snowflake Express, watching toddlers dangle their heads over the lap bar, gesturing wildly with their mittens and asking their counselors, “Is dat wuady in da wed coat OK?” It was time to own it. Jim was right. I needed to evacuate, and fast. A Deer Valley employee gracefully glided over to me and asked if I needed help. I replied, “Yes. Yes, sir, I do.” He helped me down the hill and I promptly permanently turned in my skis, poles, and boots and went and sat in the lodge and ordered a margarita on the rocks.
So, that story is kind of funny in retrospect. And a lot of people have trouble skiing, even if they are not diabetic. That’s not unique to me. In science and day-to-day life, though, there are some things I just have trouble doing. I mentioned the car thing where I ended up at the airport. That was scary. As I said, I don’t drive very much; I live within a few miles of work and now the Not-Shelbys are in college. I try to take extra precautions to make sure my blood sugar is normal, or even a little high, before I drive anywhere. That said, since I put all of this on the internet, someone from the Tennessee DMV is probably going to show up at my house and take my license away. If that happens, I’m thinking about hiring my own driver. I could show up to work every day in a stretch limo rather than a dirty 2006 Honda Pilot. And, in the winter, I could wear an amazing ski jacket and have the driver come around in a tuxedo and open the door with a flourish and a bow, like I’m arriving at the Sundance Film Festival instead of Medical Research Building IV.
Travel in general is difficult for me. Despite the fact that I now have an insulin pump which makes life infinitely more flexible (and also made pregnancies with the Not-Shelbys much safer), changing time zones is still hard. Meals are offset from their usual times, eating in restaurants makes it extremely challenging to estimate how many calories or carbohydrates are in certain foods, and I never sleep well, which adds fuel to the fire. When I travel, my blood sugar seems to fluctuate between the extremes, which can make concentrating on meeting topics or conversing at a poster session ineffective at best.
Although, sometimes it does get me out of boring poster sessions.
I have to be extremely careful when traveling alone. This can make meeting attendance in general a challenge. Once, I was invited to speak at a meeting in Cold Spring Harbor that I was really excited to attend. I arrived at the airport feeling a bit shaky and I checked my blood sugar: extremely low. No worries, I said. I’ll just get something to eat. I have plenty of time before the flight. But the numbers wouldn’t budge. This was a bad sign. I kept stuffing Skittles into my mouth. Still low. Was something wrong with my pump? They were calling for my flight to board. I went to the counter and said I needed to leave and one of the stand-by passengers could have my seat. I ran into the bathroom, teary-eyed and frustrated that I couldn’t fix this and had to disappoint my hosts and myself. I called the conference organizers and told them I wasn’t feeling well and offered to give the talk the next day via tele- or videoconference. In a soft voice, the woman said it was OK; please don’t worry; just get better.
Just get better.
Like many of you, I’ve been invited to numerous meetings overseas: Australia, France, Italy. If it’s a solo trip, I often turn it down, which means missed opportunities. If other people are going, I can get my head around the travel; ironically, though, I usually revisit the experience of the student worried about rooming with me in graduate school. Yes, traveling with others means someone else is around to help me. However, I also recognize that this does put a potential burden on others who may not be equipped or comfortable in this role. I usually justify this by making sure to buy my co-attendees copious amounts of wine when we get to the destination.
But it’s still there.
Once, on the plane on the way to Italy, my insulin pump stopped working. It began howling a horrible alarm; based on the error message, something had gone wrong with the battery sensor. When this happens, the normal thing to do is to switch back to injections and call the pump company to report it and trigger a replacement. The change back to injections is actually somewhat difficult if you have been reliant on a pump for 20 years. Insulin pumps are set up to give a patient both a “basal” rate (i.e., a constant amount of insulin over time) and then “boluses” when you eat, which you calculate based primarily on carbohydrates but also with consideration of protein and fat which can change the absorption rate of said carbs. To achieve this regimen, the insulin in a pump, versus what is often taken in individual injections, has an extremely short half-life. If the pump stops delivering insulin, blood sugar will rise rapidly, potentially resulting in the development of diabetic ketoacidosis which can be fatal if not treated.
See: Tante Jans.
With some finagling, I was able to turn the alarm off and fiddle with the battery so that the pump was still eking out enough insulin to keep me alive. Clearly, though, I needed a replacement. I tried to have another one FedExed to me at the hotel, a James Bond-esque building overlooking the Mediterranean on the coast of Sicily. I don’t know if you’ve ever been to Italy. It’s a beautiful place, but no one ever seems to be in a hurry. About anything. And, they don’t really care that you might be in a hurry either. By my best estimate, that insulin pump ended up in some back corner of the Rome airport and never saw the light of day. Ciao, baby. But I’m happy to say that I made it through the meeting, enjoyed myself, came up with an insulin regimen to get me through, got a new pump when I got home, and learned a lot about glutamate receptors.
Why did I write all of this? I guess it’s to say that there are people walking around in each of our everyday lives who might have a hidden story. Each day has trials for everyone, of course, but there are unique challenges when you also have to share your career, your family, and your life with a disability. Despite this, I don’t think of myself as disabled. I have a great family. The Not-Shelbys are killing it. I have a job here that I find very fulfilling. I am very lucky to currently have few complications from diabetes despite my horrendous management of the disease when I was young. These days, Type I diabetes does not have to be a death sentence, but rather a daily challenge to be managed. Health insurance still angers me, not so much for myself as for others. I can’t ski, but the chances are strong that, with the genetics in my family, I was never going to be good at that anyway. I can look at things with humor; for example, I often think about using Type I to cut in lines: priority boarding on planes, moving up in the checkout line at the grocery store, exploiting the Fast Pass option at amusement parks, you know. Rule-Follower Me has a hard time actually executing on any of this stuff, but that doesn’t mean I don’t think about it. I also routinely consider eating a jelly doughnut and then going to one of the Vanderbilt health screening tables just to see what happens. People with a normal pancreas just can’t elicit that kind of panic.
Go for the Gold!
I would leave you with this: magnolia trees are prominent on the Vanderbilt campus. Perhaps, the next time you see one, you could spare a thought for those around you living the unique life that comes with a disability.
Because some of us are stealing magnolias, every day.