The little incident with the paramedics over the weekend has stirred the old emotional kettle. As I tweeted yesterday (I’m trying to get on board with Twitter so hopefully I haven’t slaughtered the lingo that comes with it), I’m feeling really sad about how my ‘betes affects Jason. Sad doesn’t even quite capture the feeling I’m having, but I don’t think the word I need exists, so it’ll have to do.
I’ve always felt that my diabetes was a burden to him. I have what amounts to unbearable guilt for feeling like I essentially trapped him in the ‘betes abyss. I told him I was diabetic from the get-go, but I quickly knew that he didn’t understand what it meant to live with diabetes. Just like the rest of the world seems to naively perceive it, as far as he was concerned, I checked my sugar and took some insulin and that was that. When we were in the first few months of our relationship, madly in love, he never dreamed of growing old under the shadow of fear of complications, or restraining me from hurting myself as I flailed in some semi-conscious state while he waited for EMT’s to scurry up our sidewalk.
Of course, he has his faults and as is the case when people are in that stage of a relationship, we put our best foot forward, hiding the kookier personality flaws and odd habits, and in turn we overlooked each other’s short-comings. It just doesn’t seem fair that all he had to hide was a lifetime worth of Star Wars Legos and a tendency toward suppressing his feelings, when I was able to discreetly hide the true experience of living with diabetes.
No one knows what this disease is like until they have some long-term, up close and personal time with it, and since we’ve been married, the reality of it has gradually sunken in. However, until recently, the reality was more the tedium of it and the concern about the extended forecast. The immediate dangers were the stuff of fables, myths and other people I knew from the tubez, as we jokingly call the internet around here.
Then I had the glucagon-worthy hypo in October, which I could tell was unsettling to Jason. We’d been together for six years, and not once had I ever experienced such a low. I got close a couple of times, but never so bad that I couldn’t drink some juice and have some recollection of what had gone down. He had trouble digesting the reality that even though I try to do everything right, things still go terribly wrong. I had explained on several occasions how and when to use the glucagon. I’ve always taken the glucagon with us on vacation, I’ve made sure we have at least one here at home, and I’ve made sure to tell him where it is. It registered enough that when it came time to use it, he could, but it seemed like very incidental information to him as far as I could tell. Those days are over. After the October episode, for the first time he took initiative to ask me about the glucagon, reminding me to get a replacement kit. He was worried.
Immediately after the incident Sunday morning, as I was still shivering and trying to piece together what had occurred, I knew I needed to put my pump back on. Two glasses of juice, a glucagon injection and a dextrose IV were going to hit me hard. I knew his nerves were fried from having had less than two hours sleep and then dealing with me, so I tried to be gentle in convincing him that I needed to put it back on. It took some persuasion, another BG check to verify it was headed up, and a promise to turn my basal rate down for the first half hour before he reluctantly agreed so we could try salvaging at least a little more sleep. I honestly think he wanted me to just leave it off while we slept, but then of course, he would have had a completely different emergency on his hands.
Sunday, as I battled the persistent rebound high, he expressed concern several times that I would be too aggressive in bolusing that high down. Monday, I wasn’t feeling well, so I called out of work. His response? If I was going to take a nap, make sure I checked my BG first, check it often all day, and have a snack if it seemed too low. It wasn’t just what he said, but the way he said it. He was afraid I’d get too low without him being here to help, and it went unsaid, but I felt like he mentally punctuated his instructions with “because I don’t want to come home and find you dead.”
It’s hard to convince myself I’m not a burden when clearly my husband is feeling a heightened sense of responsibility for my life and a now vivid understanding of just how menacing and even dangerous this disease can potentially be. The joke he made in October about his cape billowing in the breeze as he saved me has persisted, giving us much needed opportunities to laugh at an otherwise unfunny event. Coincidentally, we were joking about it Saturday night when we were hanging out with our friends, just hours before the paramedics stood in our bedroom. We half laughed about how he jinxed himself by talking about it that evening, but then, with a slightly more somber tone, he said he’s ready to fold up the cape and stash it away. How quickly he realized what a burden wearing it is, and how sad I was knowing that I can never reassure him he won’t have to use it, and he’ll always need to keep it within arm’s reach.