First of all, when the nurses at the hospital explained diabetes to me, it was kind of unreal. The implications of the 24/7-ness of diabetes didn’t really hit until we were getting ready to leave the hospital. I felt a grip of fear, just as I did when the nurses, so many years before, gave me my new baby to take home. “You mean, I have to take care of this all by myself?” A big, tired, whiny part of my mind cried, “I CAN’T!!” And a deeper, calmer voice inside my heart said, “Take your baby home and love him the best way you know how.”
That same, still voice follows me around today. Loving Daniel the best way I know how includes learning what seemed to be the equivalent of a few college courses in a couple weeks’ time to be able to do diabetes care. Friends shake their heads and cluck worriedly, saying, “I don’t know how you – give a shot, get up in the middle of the night, learn all about carb counting, deal with the insurance companies, weigh all the food, write everything down….” But I know that if one of their children was sucker punched with diabetes or another devastating illness, my friends would roll up their sleeves, put on their battle gear, and get down in the trenches with me. It’s what we do for our children.
Diabetes affects my thinking. In conversations with friends I have to clamp my mouth shut so often, because I relate so many things these days with diabetes care. Going on trips, eating out, parties, school, everything. I don’t want diabetes to be the focus of every conversation. Eventually, my friends would avoid talking to me! But it’s there, in the back of my mind. In that way I’m always in d-mode.
When I’m at work I have intense moments of activity. D-mode easily slides back into its little compartment in my brain and takes a nap. But if I happen to look at the clock, I’ll find myself thinking, “I wonder if Daniel remembered to test his blood sugar after lunch today?” (The time he usually forgets.) D-mode. Can’t get away from it.
Sometimes d-mode feels like a physical chore. As if someone handed me a barbell with weights that were manageable – a few pounds – and said, “Here, hold this forever or something terrible will happen.” For the first few hours, the first few days, I hold the barbell in the air without a problem. I notice it is there, but I also know that it is what I have to do. Then the weight seems heavier and heavier. My body gets stronger as I deal with the weight. There are days when my arms are just too tired, and I’m thankful that I can hand over the weight to my husband for a while. Or just talking about this burden to family members or the wonderful online community makes it easier to bear.
Hundreds of thousands of people are walking the world, carrying these invisible burdens every hour of ever day in silence. They are in d-mode or c-mode or ms-mode. You never know.
I was deeply disturbed the other day at the grocery store. There was a lady there, probably in her mid 60’s. She had a mentally disabled son in his 20’s with her and she was yelling at him. “I tell you to do ONE THING and you CAN’T EVEN DO THAT!” “GO SIT OVER THERE! NO, not on the BREAD!” She was berating him for something he did or didn’t do, I’m not sure what. I wheeled my cart away, embarrassed. Then in the pickle aisle, I ran into them again. I needed to get my kosher dills, and the mom was standing in front of them, staring at all the choices. Her son was leaning over her shoulder. As I excuse myself to reach around her & take the jar, she turns to him and yells “I know what you’re doing! You’re just trying to BOTHER ME!” The son was grinning, saying “Okay, sorry, I won’t do that. I’ll listen.”
No, I didn’t say anything. I don’t know their story. I don’t know the son’s levels of behavior. But I do know that the mom had obviously lost the ability to manage her invisible burden, and it was spilling out around her in great, shattering waves.
I was mad at her and sad for her at the same time. Perhaps she has no one to talk to, or to give her a break. Or she could just be a mean person – I don’t know. I saw myself and others giving her a wide berth as she worked her way down the aisles until finally she reached some internal limit and decided to stop shopping & leave the store. There was a palpable sigh of relief, an absence of anger that echoed as loudly as her shouting.
In a sort of a Buddhist way, I’m trying to carry my “burden” mindfully, even joyfully. Just trying to do my part and be thankful. Trying to send out ripples of good & calm into the world. Maybe that’s called being in d-mode. Maybe just be trying my level best to be aware, to be here in every moment, I can be in d-mode and mom-mode and life-mode all the time, and my arms won’t ache from the weight of it all.