The Loneliness of T1D

Yesterday, Mark, Jamie, and I each got separate letters from the Joslin Diabetes Center saying that the results of our screening tests for type 1 diabetes were negative. This does not mean that we are totally in the clear, but still, it's good news. In the words of the letter: "This means that no diabetes-related autoantibodies are present in your blood at this time. This is not a guarantee that you will never develop diabetes. It does mean that you are currently at lower risk than if you tested positive." If one of us had tested positive, they would have done more testing, including a glucose test like the one they give to pregnant women, where you down a very sugary drink, and then are tested to see how you process it. If, after that second round of testing, we were still deemed to be at high risk for developing T1D, we would have been eligible for a clinical trial, testing whether ingesting small amounts of insulin helps to stave off the disease. Mark and I are now permanently ineligible for the study; Jamie could still be tested each year to see if his autoantibody status has changed--ie, to see if his immune system has started attacking the beta cells in his pancreas.

Of course, Mark and I agonized over whether Jamie should do the test. Would it scare him? Would he start worrying that he, too, will get diabetes? How would Mark and I handle the news if he tested positive? What would we tell him? In the end, we decided that if he is prone to getting diabetes, we didn't want to be blindsided by it, as we were by Bisi's diagnosis. And if there's a chance that this study would delay the potential onset of T1D, we wanted to know that we'd done everything we could. In explaining the clinical trial, we told him that this could help push T1D research forward, and therefore might help his sister.

The day of the test, Bisi was pretty thrilled to see the three of us get blood tests while she could just sit by and watch. (It reminded me of when Jamie and Bisi got their flu shots this year; he was eligible for the flu mist and was begging for it, since he didn't want the injection. Bisi was not technically supposed to get the live vaccine that's in the mist, since her immune system is a bit compromised by the diabetes, but the nurse told me it was probably fine, and it was my choice. What would you have done?? I decided that both would get the shots, and Jamie immediately started to sob. Bisi got hers, as cool as a cucumber, and then watched with a cheshire cat grin while Jamie cried and got his. Afterwards, he admitted that it wasn't so bad.)

For all of our anxiety about whether to do the test and how it would affect Jamie, he seemingly hasn't thought one bit about it in the six weeks since. He's never asked what the result was, or mentioned it in any way again. Mark and I are thrilled that, at least for now, we can banish this one worry from our thoughts. But for Bisi, I feel that this "all clear" news is more mixed. Having T1D sets Bisi apart--sets her apart from her friends and from her family. In some ways I think that the extra attention she gets through the diagnosis makes her feel special--friends walk her down to the nurse, she gets a special pink card to save her place at the lunch table since she's often late because of the blood sugar testing and insulin dose. But the diagnosis makes her feel lonely too. We've tried to do what we can to remedy this: Bisi and Jamie have a favorite babysitter who has T1D; we've set up playdates with other kids with T1D; we all usually eat the same meals, and, as I've mentioned, Mark has gone gluten free in solidarity with Bisi. (Bisi recently said she wanted the whole family to go gluten free, but I see no reason to force this on Jamie; and I'm not ready to give up all the delicious things that have gluten--though I do try to avoid them when Bisi's around. The most difficult challenge so far has been not ordering the amazing homemade biscuits at our favorite BBQ place.)

None of this makes up for the fact that Mark, Jamie, and I have no idea what it feels like to have this disease--the sharp hunger when she's low, the listless tiredness when she's high, and the emotions caused by the swings in between the two extremes. Most of the time when your child is going through something, you can tie it into your own childhood experiences. You can help them work through it because you understand just how they feel. Bisi feels this absence keenly, even though she's only expressed it a couple of times. Once she asked whether our new dog, Cinnamon, might get T1D. Another time, she was talking with our friend Rachel, who has asthma, as does her son, Owen. Bisi asked all kinds of questions about asthma and then said about Owen: "He's lucky. I think it's nice that someone else in his family has what he has." So for now, there won't be any discussion in our house of the results of those blood tests. Why would we want to rub it in?

The Last Lemonade Stand

It all started when Bisi drank all our profits at a Sunday afternoon lemonade stand on Block Island.

Well, it had really started a while before that (weeks, months, or even years—we're not sure), but the lemonade stand is when it became inescapably obvious that something was wrong. Bisi must have chugged four or five cups of lemonade, and then had to go pee almost as many times behind our car parked along the side of the road. “What’s happening to me??” she asked us—not in an upset way, but genuinely curious about why her body was acting so strangely. The next morning I took her to the island clinic, and she received the diagnosis that (after some night-time internet research) we were both dreading and expecting—type 1 diabetes.

For five days, she had been peeing and drinking way more than normal. At first we thought it was because she was swimming in a chlorinated pool two or three times a day at summer camp. “Have you been drinking the pool water, Bisi?” “Yes, but I’ll stop.” I’d noticed that she’d lost some weight, but again I attributed it to summer camp and all the running around she was doing there.

A few months before that, her need for sugar seemed to become more urgent. She started complaining that blueberries and strawberries, which she’d always loved, were too sour. Once she was diagnosed and on insulin, her taste for sugar went back to normal.

For at least a couple of years before that, her mood seemed heavily dependent on food. We’d always keep some dry cereal by our bed so that when she came in in the morning, growling with crankiness, we could hand her something she could eat to improve her mood. I’d always mention it to her pediatrician at her annual visits, asking why Bisi’s mood seemed so much more affected by food than her older brother’s did. The doctor always said it was just her personality—which may be true, and made some sense to me, since her father, Mark, used to be the same way.

I used to keep a granola bar in the car for when he would get hungry and cranky, and we both remember clearly an off season trip to Prince Edward’s Island, where we drove half an hour to a town expecting to find a restaurant open for a late lunch but instead found everything closed. Mark was so desperate for food that he had me pull over so he could gobble down some pickles we had in the trunk; a little bit later, we pulled over again so he could pick and eat an apple from a roadside tree.

Since Bisi’s diagnosis, all of the doctors and nurses I’ve talked to—except for one—have said there’s no connection between her food-related mood swings and the onset of diabetes. And yet in the months before her diagnosis these mood swings around meal times had seemed to grow worse. Mark and I are still recovering from Bisi’s sixth birthday party, a couple months before her diagnosis, where we forgot to give her a snack before the party started, and we and the six-year-old guests watched Bisi transform before our eyes into her own version of Natalie Portman’s Black Swan, her face paint smeared all over her face by tears and tantruming. Yet since her diagnosis, her mood seems much more even. My (totally unscientific and not backed up by doctors) hunch is that Bisi’s blood sugar was spiking and dropping long before her diagnosis, though this goes against the conventional wisdom, that type 1 diabetes tends to come on very suddenly.

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At our Monday morning visit to the Block Island clinic, the diagnosis process was simple—they tested her urine and found sugar in it; and they tested her blood, and found that her glucose level was near 500—about five times what a normal reading should be. In a daze (I was in a daze; Bisi was focused on the fact that her vacation was being interrupted), she and I took the next ferry back to the mainland, leaving her brother Jamie with my mother. Mark picked us up, and we headed to Children’s Hospital in Boston. More on that later.

It’s now been about two months since her diagnosis. We have learned a ton during that time, and parts of our lives are starkly different from what they were. Many of the changes revolve around food—what Bisi eats, how we cook, how we all think about food now. My plan is for this to be a diary of Bisi’s first year with diabetes, but focused on the food aspect of this new reality of ours. It’s not a journey that any of us would have chosen, but now that we’re on it, we’re trying to get our heads around it as best we can. I hope that this diary will help that process along.