Click for the What Brings Me Down - Wednesday 5/14 Link List.
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)
There was a time, in days of yore, when we wrote on paper.
I was college-aged and I remember that I was sitting in a Wendy's. I couldn't tell you what state or city or who I might have eaten with, but I remember that I was at a Wendy's. And I was feeling exceptionally beaten about my health.
I remember pulling out a scrap of notebook paper and just starting to list every concern I had about my body. Every ailment I thought I might have. Everything that scared me. Didn't make sense.
I took an inventory from head to toe, the way you might melt into meditation, one layer at a time. My head - that when I was 18, experienced such sharp pains when I would move my neck suddenly that I would feel like an ice pick had pierced my brain and I'd black out. My vision. Retinopathy. My messed up jaw. The way my cheeks would flush for no reason and also when my blood sugar was high...
I went down my body, cursing each mother-f-ing part that didn't work, noting that every system I could think of from musculo-skeletal to reproductive seemed busted.
I felt busted.
But the words looked so small on paper. It was just a little list. A little list of words and phrases.
I walked over to the trash can and ripped the list to shreds. And I let it go. Every enemy I was cursed to share this body with was at the bottom of a can behind a little swingy door that said THANKS.
In cleaning out some old papers last week in preparation for our upcoming move, I ran across another copy of that list. This one had to be from when I was about 21 because I still thought I might have endometriosis (turns out it's just particularly painful ovulation that doesn't plague me as much anymore). It was before I dealt with kidney stones at age 24. With car wreck-induced soft tissue damage in my neck.
I'm sure that I intended to rip this one to shreds, too, but it gives me a glimpse of where I was in my headspace. My college years were challenging with diabetes. Not because I was rebellious or away from my parents. That was actually all fine.
It was because of a crappy endocrinologist who labeled me as "non-compliant" and seemed annoyed with my presence. It was because of a treasured and respected professor who approached me as though I were fragile and told my peers that my bones were brittle. It was because I was entering adulthood with a bunch of other promising young people who didn't have this burden of type 1 diabetes. It was because I believed without question that I was the only person struggling at diabetes management.
The worst day I remember with diabetes is the day my particularly callous ophthalmologist told me - a 19 year old girl, to all appearances responsible and composed - that it was only a short matter of time before retinopathy and glaucoma took my eyesight. I had responded with a half-laugh and "surely, I'm not that far gone." He sighed and said something fairly dismissive and told me that my retinal capillaries had burst and my larger blood vessels were next and that it was a mark of how I wasn't watching my blood sugars. I sat in my car and cried a long time before driving back to the dorms. I didn't feel like being alone, but I didn't have anyone I could really discuss these fears with who would get it. I walked to the room down the hall and found my friends playing darts.
I started throwing darts in the general direction of the dartboard. I hurled darts as hard as I could throw with my weak wimpy arms and I screamed, I cried out, tears rolling down my face. I just let it all out.
It's not fair. I didn't ask for this. I don't want to go blind. What more do they want from me?
Dave and Jay, I'm sorry for all the holes I left in your dorm wall. Thank you for being there for me that day. And Karen, too. In nearly 24 years of this disease, that was the one day I have screamed.
But not the only day I've probably needed to.
Diabetes doesn't care if you're wealthy or poor, hearty or frail, organized or frazzled. It doesn't give a shit whether or not you would be good at this.
It's relentless, unforgiving, hostile. It is never not on my mind. It's an enemy within and I can't retaliate except to try to live well to spite it.
How do I cope? Rip that fucker up.