It was a day — like many others, actually — that Veronica Elsea just could not get a drop of blood out of her fingers. Hey, happens to all of us. For Veronica, however, it’s doubly distressing. Blinded by high oxygen levels in the incubator she was placed in after her premature birth, she needs her fingers to do much more than merely release a drop of blood to check her glucose levels.
“I tried and tried” to get a drop of blood, she says. “I really got upset. These are fingers that read Braille. I told them I was sorry, and I started crying.”
But she did more than cry. She went to the music studio in her home and began to compose. Out came “Fingers, Calm My Fears!,” in which she praises her fingers for all they’ve done for her, but tells them she needs them to help reduce her risk of diabetes complications.
I hated to have to hurt you
So often every day,
So I didn’t!
But lately I’ve been worryin’
’bout the problems I could face…
That song led to another.
About going on your first date after diagnosis:
Time to think about what dress to wear;
And stop tryin’ to figure out how I’ll do a blood test there;
I’ll start by packing my supplies
In that attractive, but oversized bag I now lug everywhere…
About those well-meaning people we all deal with:
You shouldn’t sink your teeth into that dessert! You know you’re diabetic,”
Scuse me? You should get your nose out of my plate!
And still more. Until she’d recorded a 13-song CD she calls Diabetes Melodious.
“It’s amazing how much I really needed some of (the songs),” Elsea said, explaining that things you can’t verbalize; can’t admit to yourself or to somebody else, can come out of your soul when it’s set to music.
Diabetes Melodious is not the first CD she’s recorded to help herself and others through life’s frustrations. Her first, Guide Dogs, First Hand, was a musical journey about issues with guide dogs that are left unaddressed in training. In the song “He’s Mine,” for example, “we get to state very bluntly what we are often reluctant to say to those closest to us who insist on petting and playing with our dogs at inappropriate times.” Other CDs include We Woof you a Merry Christmas and The Guide Dog Glee Club. All can be found at www.laurelcreekmusic.com.
But back to diabetes.
“I’m trying to get a grant to use music to (get people to) talk about diabetes,” Elsea said. “When you hear it in a song, you know it had to be common enough to have something written about it. People become less reticent to talk.”
Perhaps it would even help people like her “Tough Guy:”
I can’t say that I like this diagnosis but I’ve done fine;
By making up my mind that I’ll control it, I’m a tough guy…
But sometimes I lay on the couch in my family room
With the blinds drawn so no one sees;
And I play, turned up really loud, my saddest tunes
And cry myself to sleep…
“Music has been a big part of my life since I was two or three years old. I think I always knew I’d be doing something with music as an adult, even when I didn’t know what that would be. By the time I hit high school, I saw music as something that kept me halfway sane, got me through the challenges and difficulties of daily life, and just something that really fed my soul, if you will. It’s always been the way I best expressed myself. I’ve actually written many songs just for my own therapy or to get anger out of my system or something like that.”
What she did was become a symphony musician, with the viola as her instrument. That career ended when she slipped on a mixture of gasoline and water and took a very bad tumble. That accident left her without the use of her hands for two years…and a diagnosis of Type 1 diabetes.
She laughs (she laughs a lot), saying people think she’s blind because she has diabetes.
“Well, could I say you have diabetes because you’re blind?” I asked.
“No,” she said, “but it’s a good story.” The truth? While she didn’t see the slick spot because she’s blind, neither her sighted husband nor her guide dog saw the spot, either. They all slipped. She’s just the one who hit her head very sharply on the ground.
But the diagnosis of diabetes did get her somewhat excited. “There aren’t many blind symphony musicians, so there wasn’t much for us,” she said, adding she thought there would be plenty of tools and resources for blind people with diabetes. Nope.
There may be less in the future. Elsea says fewer insulin pumps with audible bolus features are being made. The pump she salivates over, Tandem Diabetes Care’s t:slim, has a touch screen: No good if you can’t see. As it was, even with audible boluses, she went to 10 endocrinologists before one would prescribe a pump for her. (“Can’t your husband do it for you?” she was once asked. “No,” was her response. “I let him out of the door once in a while.”)
Even visits to her doctor can be a challenge. “People don’t know how to look at a graph with me,” she says.
“I think the thing that presents an immediate difficulty…is that they’re used to sitting down with someone, looking at a graph or a chart and pointing. ‘Now see here, this one was up, this one was down, blah, blah, blah.’ They can’t do that with me. Never mind the fact that this could be discussed verbally: ‘I see that your morning numbers are up, mid-day is down, blah, blah, blah.’ But people often get uncomfortable and can’t figure out how to break their normal patterns.
“I usually take the position that it’s understandable we’re uncomfortable around what we don’t know and that I will spend a certain amount of energy helping people past their discomfort. That is,” she adds with her familiar laugh, “unless I choose not to do so.”
“And then add to that my theory, unscientific as it is, that…many endocrinologists only saw blindness as a complication and this meant a noncompliant person beginning down that final road, and so why bother! I think it was hard for many of them to adjust to the new groups of blind people showing up with diabetes.”
And, yes, she has the same frustrations with doctors that all of us do, in addition to the aggravations she has with them because of her blindness.
But wait. She wrote a song about that.