Tuesday, May 17, 2016

The Hardest Part

Note: This is day two of Diabetes Blog Week, and the topic is The Other Half of Diabetes: "We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?"

Most people, when they think of Type 1 diabetes, think of the parts they can see. The needles, mostly. Finger pricks a dozen times a day. Insulin shots four to six times a day. Infusion sets every two or three days. Continuous glucose monitoring sensors every week. Blood draws every three months. For most, this is what they think of as the hardest part of diabetes.

But it's not the hardest part. Not even close.

The hardest part isn't the finger sticks, but what's contained in that tiny bead of blood that's squeezed out afterward. Despite all our best efforts, that tiny drop of blood could indicate an emergency that requires us to drop everything and act, and we have to be constantly vigilant for such an event.

The hardest part isn't the insulin injections or the infusion sets, but rather the medication that these devices deliver. We are grateful that it saves our lives each day, but also wary of the fact that, if we're not careful, that same medication can be lethal.

The hardest part isn't the continuous glucose monitor sensor, but rather the monetary price we've paid for the priviledge of accessing such technology. We're well aware that, were circumstances different, this same technology may be out of reach, and we're grateful for being able to wear it.

The hardest part isn't the blood draws every three months, but rather what those blood tests may reveal. We live with a worry that follows us like shadows, never quite leaving no matter how good our control is. Regardless of how hard we try, we may not escape complications in the end.

The hardest part about diabetes isn't anything that's visible. It's all the stuff that's invisible. It's the constant vigilance. It's the daily grind. It's the unending adjustments. It's the interrupted sleep. It's the financial burden. It's the unpredictability. It's the extreme highs and plummeting lows. It's worrying about the future. It's the utterly unrelenting, unforgiving, endless nature of diabetes.

I have no real answers, even after having lived with diabetes for nearly three-quarters of my life. It's mentally and emotionally hard. It will always be hard. I just try my best each day and take things one day at a time.

Monday, May 16, 2016

The Nature of Impossible

Note: I'm participating in Diabetes Blog Week for the second time. This is my post for Monday's theme, Message Monday: "Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?" My message is a little different from most other diabetes bloggers...

I crouch, shifting my position slightly as the sound of the ball bouncing over gravel grows nearer. Seconds later I feel the satisfying thud of the ball rolling into my glove. Picking it up with my other hand, I send it rolling back twoard my partner, a blur of colour several meters away against the dimming sky.

"Okay, everyone, time to come in!" comes the voice of the coach. We grab the rolling balls and crowd into a semicircle around him as he debriefs us and goes over the date of the next practice. "And," he adds at the end, "since we're going to become an official team, we need to think of a name. That's your homework for next week."

Kids disperse in the gradually approaching dusk, galloping up to parents to announce the exciting news. My dad appears by my side on the field, and together we wind our way through the group, my dad greeting parents and me yelling over my shoulder that I'll see classmates the next day. Reaching the sidewalk we turn left, heading to the parking spot he always uses.

"We have to think of a name," I exclaim as we walk. My dad touchs my shoulder briefly, steering me slightly to the left to make sure I avoid the jog in the sidewalk, nearly invisible in the deepening dusk. "Do you have any ideas?"

"I have one," my dad says, "but I'd like to hear yours first."

I look around me, at the deep blue-grey sky overhead, the sillhouetted darkness of trees, and the scattered lights of home windows and streetlights, appearing to me to float in the darkness. I had an idea.

"We'll say our idea together," I suggest. I pause and look up eagerly at his tall shadow that blocks out the grey of the warm, late-spring sky.

He agrees, and a moment later we say simultaneously: "Fireflies!"

That night seemed magical to me. I sat in the car on the way home brimming with excitement at the idea of sharing the name that we had both announced at the same moment, as if we had shared a thought. I thought of how, at the next practice with my classmates and friends, we would pick a name and become an official team, and I couldn't wait.

I didn't know that this would be my last softball practice, but it was. The official team formed never hearing the name that my dad and I had thought of, and I never practiced with my peers again. I don't remember what explanation my parents gave, but years later they told me that having a legally blind child on the team was a liability the organizers were not willing to accept.

My parents had seen me succeed at skating lessons, swimming lessons, downhill skiing, and gymnastics—sports where, when I wasn't wearing a "BLIND SKIER" vest or running head-long into a fellow player and breaking my nose, many observers didn't even realize that I had a visual impairment until they were told. Instead of simply accepting "no" as an answer, my dad called around to half a dozen Little League teams until he found a coach willing to work with him to have me included.

The entire team was made up of kids I didn't know, and it was baseball, not softball. I stood in the outfield for what felt like ages with my dad stationed nearby, simultaneously hoping the ball would be hit in my direction and dreading my dad's announcement that the hard, invisible object was hurtling through the air toward me. I had no idea which team was winning, though my dad tried to keep me up to date on what was happening during the inning. When our team was at bat I would stand and twine my fingers through the chain-link fence, peering out at a field I could barely see, and wait for my turn. When it came, I tried to hide my embarrassment when the coach let the pitcher from the opposing team stand at half distance, and pitch well beyond three strikes as I listened for shouts to "Swing now!" and mostly missed.

I decided that perhaps baseball was not the best sport for me, and quit after that first season.

I am grateful that my parents gave me the opportunity to play baseball, because they gave me the priviledge of making my own decision that baseball was not right for me, rather than making it for me. For people with disabilities, choices about what they can and can't do, what they can and can't access, and ultimately what they are and are not capable of is often taken out of their hands. At such a young age I decided that baseball wasn't for me because I didn't like it, not because I couldn't do it. The difference a change in those two beliefs could have made on my life is profound.

As a kid, I didn't really think of myself as having a disability. I never tried to hide my visual impairment, because I just didn't see myself as very different or as having anything to be embarrassed about. And my classmates and friends followed suit, adapting naturally to my visual impairment as just one aspect of who I was, not something to get worked up about or pass judgement over.

As I grew older, though, I realized that others were sometimes making judgements on me. In grade five, when all the kids got the opportunity to sign up for band if they wanted to, teachers advised that I shouldn't participate because I couldn't read sheet music. For years, I watched my brothers come home lugging saxephone and trumpet and listened with jealousy as they practiced. My parents signed me up for piano lessons instead, but the fact that I'd been denied band made me yearn for the experience.

With the protective shield of my family and friends surrounding me, I grew up having no idea that, to society, blindness meant darkness, fear, dependence, pity, and helplessness. As an adult, however, I was assaulted by these deeply-held, often subconscious attitudes in full force. And suddenly, people everywhere were trying to decide for me what I could and couldn't do: telling me I couldn't travel independently, couldn't take a course in university, couldn't succeed at a chosen career path, couldn't participate in certain sports, and couldn't use medical devices. If it wasn't stated directly, it was implied through comments and actions. It was as if, not having any idea how they personally would function without vision, people just assumed a task was impossible.

What would most sighted people think is impossible for a blind person to accomplish? Driving a car, perhaps. Or have careers as an oceonographer, meteorologist, software engineer, journalist, photographer, mathematics professor, politician, medical doctor, teacher, lawyer, or working at NASA? Or raising children who are fully sighted? What about flying a plane? Or climbing Mt. Everest? Or winning a national reality TV show?

Individuals who are blind have done all these things and more.  (The first person who is blind to climb Mt. Everest did so five years before the first person with Type 1 diabetes accomplished the same.) Yet, so many assume that it can't be done. Sure, some of these things such as flying a plane or driving a car are only possible with some assistance or with not-yet-available technology. But that's in large part because people who are sighted assumed that people who are blind wouldn't be able to drive, fly a plane, or do any number of other things. And in that assumption, they designed technology that is visually-dependent and inaccessible, which creates an artificial barrier. (What if the instruments on a plane gave audible or tactile instead of visual feedback? What if roads were designed with tactile paint to follow instead of visual lines and traffic tones instead of lights?)

The nature of impossible is often more about assumptions and attitudes than it is about reality.

It's not surprising that many people assume the many basic tasks are impossible for people with visual impairments to complete independently. Most people get all their education about blindness from movies or novels. Most fictional characters who are blind that I've seen stumble around having no idea of where they are or what's happening around them and struggle to function without assistance from others. No wonder people standing beside me waiting for a light to change can't fathom how I could cross that street independently. I can't count the number of times I've been grabbed without a word spoken in order to be "helped" across the street, down the stairs, or onto the bus simply because people assume I need help.

I was lucky. I grew up largely shielded from these stereotypes. Many kids who are blind aren't so lucky. They grow up surrounded by parents, teachers, and peers who pummel them with their misguided beliefs about what someone who is blind can and cannot do. And for a child who hasn't had the opportunity to discover their own abilities for themselves, they may come to internalize these beliefs. The same is true for the person who loses their vision as an adult, having spent their entire lives learning that blindness means darkness, fear, dependence, pity, and helplessness. No wonder it's scary.

And I want, more than anything, to change that message.

I want people, especially people who may face a visual impairment in the future, to know that blindness is not the end. It's not the end of enjoying hobbies. It's not the end of a productive career. It's not the end of raising a family. It's not the end of attending social events, or travelling the city, or going on a global tour, or making a scientific discovery that changes the world. Sure, it's not easy—most major, life-changing events aren't. But, even though stress and anger and tears may be part of the process, people do not need ot be so deeply frightened of something that doesn't need to be scary. There are ways of doing virtually everything that was once done visually without vision, including reading, using a computer, and getting around.

No one needs all that extra fear heaped on top of an already difficult adjustment process. Blindness is not the end of life, only the beginning of a new way of doing things.