I was reading this^{(direct link to PDF)}, and what struck me was not how foreign the idea of counting out your day's energy was, but how familiar. From the instant the connection of spoon count to energy level became apparent, I knew exactly what the writer was talking about. Not firsthand, but a very close second. You might call it first-and-a-half.

See, my mom had juvenile diabetes. And I've come to realize that I take a lot of things for granted about myself that are effects of living with somebody who has that kind of illness, or of living with a type one diabetic specifically.

I'll take these in the order they occur to me.



1. I never lose things people give to me. If you tell me to hold your bag or your coat or your drink while you do something, or just because you're too tired and can't take the weight, I will keep track of that thing as though it were my child. This is because Mum used to ask me to carry her bag sometimes, and Mum's bag had all her diabetes supplies in it-- insulin, juice, blood sugar tester. Having that bag on hand could literally make the difference between life and death for her, or at least between minor inconvenience and a coma.

Oddly enough, I never consciously realized how seriously I took this; it was a casual kind of seriousness, if that makes sense. It wasn't something I thought about. It was just something I did. And then one day she mentioned that she'd been out with a cousin of mine and the cousin had left the bag somewhere after Mum asked her to hold it. I was overcome with shock and disbelief. What the hell?! Did that cousin not know what was in there? How could anyone possibly be so careless? After a few seconds I realized that normal people probably do not think of carrying someone's bag with the kind of seriousness I so casually attached to it.

2. My first reaction to declarations of being tired or nauseous or in pain is always to offer sympathy, and help if applicable. It doesn't occur to me until afterward not to take things like that seriously. I tend to at least consider offering to carry something for someone as in 1. if I'm out walking with them and they report fatigue or discomfort.

I'd be tempted to label this as just me being a nice person, but it's not, or at least not entirely. It's sheer force of habit. For the first seventeen years of my life, I lived with someone whose pain and exhaustion were almost tangible entities, and relieving those just became standard routine. Sometimes I still have to step back and think to myself that maybe my buddy's complaint of being tired does not translate to "debilitating exhaustion, please help". And when it does translate thusly, I'm prepared to deal with it as such.

3. Have a look at the items on this page. Get to know them. Blood glucose meter (though Mom used an older model, obviously), test strips, those things to stab your finger with, the sharp thing that goes in the stabbing device (I didn't tend to think of them by the technical terms)... all of those, plus insulin pens and insulin, which you can Google for yourself. I know my way around all this crap. I've watched them in use countless times. Oh, and never forget these guys. Test strips with alcohol swabs folded around them and stuffed neatly back into the swab's packaging were the most common form of litter ever found on the floor of our house. We were still finding them months after she died. I think we had to move twice before they quit turning up. And I never thought about how other houses probably didn't have boxes and boxes of alcohol swabs in the bottom of the linen closet or insulin pen cartridges stored in the fridge.

3a. I'm not in the least squeamish about needles when they're happening to other people right in front of me. I park myself at a safe distance so I don't jostle anything that ought not to be jostled, and I'm fine. Again, watching Mom self-inject insulin was routine; she'd find a discreet place to sit or lean, get out the correct insulin pen, turn the knob at the back to the requisite dose, pull aside her shirt or pants or both to expose the right part of her abdomen, rub it down with an alcohol swab, stab, push the knob back down, pull the pen away, press the swab to the injection site for a few seconds, and cover up again. Boom, done, no big deal. Maybe fifteen seconds or less all told. (Now, needles that are happening to me are another story.)

3b. Similarly, blood. Doesn't bother me in the slightest. The sight of a little tiny bead of it welling up on Mum's finger before being touched to the correct end of a test strip is established in my head as totally normal. I also know all the proper safety precautions, which sum up to "if you're going to stab yourself with something, it had better be sterile, along with the place you're gonna stab. Use alcohol swabs a lot. Don't touch other people's blood if you can possibly help it, seriously, it's not a good idea." Since I was never taught any of this formally, it's probably wrong in places; all I know, I learned from observing her and from the warnings she'd give me.

4. I know what low and high blood sugar do to somebody, not as lists of symptoms but as lists of memories. Mum recounting her attempts to explain why she can't drive with low sugar, and the two of us laughing over how anyone could possibly not understand that her brain might, for example, look at the green light going the other way and decide it meant she was okay to go forward. Mum lying on the couch while I brought her tea or a glass of water, because she had high sugar and needed to wait it out. Mum drinking apple juice because it metabolizes quickly and she needed to get her sugar up. The bad times when she was unable to talk, or the good times when all it did was mess up her thinking a little and we could joke around and laugh it off.



There's probably more. The point of this stuff is that you don't think about it until something forces you to. I'm sure there are tons of attitudes floating around my brain shaped by growing up with Mum that I still haven't found yet because they're too subtle for me to realize where they come from. There was an entire second side to her illness-- gastroparesis-- that severely limited her diet because her digestion was mostly shot and she couldn't handle fibre in large quantities. The only effect this had on me that I can think of right now is that I recognize certain pills on sight. And yes, they're a very unfortunate shade of brown, and yes, the "poop pill" jokes flew.

I guess there wasn't much point to this entry, other than to say: yes, it is possible for a healthy person to understand what it's like to live with an invisible illness. I just don't recommend it.