Friday, December 20, 2013
The lethargy of blood sugar levels that stay relentlessly high. The vaguely queasy feeling that accompanies glucose and ketones. The monotony of pulling out the meter and obtaining that tiny bead of red every hour or two. The whirring thoughts, running through pump, site, insulin, illness, what else could it be. The shots, the site changes, the pump refills. The corrections, ad nauseam.
Intermingled with everyday life. Phone calls and reading and typing, interrupted by finger pokes and pump programming and shots and Ketostix. Interacting with friends and colleagues and strangers, all of them completely missing the undercurrent of the diabetes battle that is raging.
So normal to anyone watching. But under the surface, one of those days that diabetes rules.
One of those days that, ultimately, is best summed up in a picture rather than words. (Except for the alt text describing the picture, of course.)
Sunday, December 1, 2013
My class was playing outdoor soccer. Unable to play safely due to my vision, I was on the playground swing set chatting with my educational assistant, swinging back and forth and pumping my legs as hard as I could. As a kid I always had a goal to swing as high as possible, despite the slight nervousness nagging at the back of my throughts that the swing might wrap around the metal pole supporting it if I went too high.
For reasons we never did determine (some sort of momentary loss of consciousness was suspected), when I had reached the apex of one of my pendulum swings I suddenly let go of both chains.
Predictably, I went flying. I soared a good 20 feet across the playground before landing. To this day I remember seeing a swirling mass of grey below me, time going in slow motion, not quite knowing what was happening and at the same time thinking, "I know I'm about to get hurt ..." and praying, "Please, God, don't let it be bad."
I don't remember landing. I do remember looking up and hearing my aide cry out. The next thing I remember is walking towards the school. My aide jumped off her swing and came bolting towards me, clamping her hand over my forehead and calling for help. As we continued to walk towards the school she talked to me, saying I was okay. I didn't understand what she was talking about until she momentarily lifted her hand from my forehead.
Her entire palm was completely red.
She clamped her hand down almost as soon as she had moved it, but in that split second I suddenly panicked and burst into tears. I had never seen so much blood. When we reached the school doors I wasn't even brought inside, but sat on the stairs while someone brought out a giant gauze pad. The entire pad turned red in a matter of seconds and was exchanged for another, and another. Once the bleeding was controlled enough that the gauze wasn't soaking through immediately, I was ushered into the office.
I didn't know it then, but my mom was being called. And so was 911. When the paramedics arrived I was mostly concerned with trying to stop crying and pulling away when they tried to clean the wound, which stung like mad. I sat in the office and could hear the bustle of my entire class outside, trying to peer in at me. The paramedics were mostly concerned with the possibility of a head injury.
They questioned me incessantly. Did I know where I was, who I was, what day it was, did I remember what happened. Then, they began to talk about my eyes with concern.
"Her eyes always do that," the school staff around me informed them.
"Are you sure?" one of the paramedics asked.
"Yes, she's legally blind; her eyes have always moved like that."
They were not convinced. "I don't know ..." one said as he looked into my eyes with concern.
I didn't have a good sense of the passage of time, but they spent a lot of time discussing my nystagmus. My mom got to the school just as I was being loaded into the ambulance. On the way to the hospital, the paramedics asked her if I had always had nystagmus, and she confirmed that I had. They advised her that, given my relatively complex medical history, I really should have a customized medical ID.
I spent the next few hours in emergency, where I remember feeling sick to my stomach, my blood sugar crashing low, getting annoyed at the oxygen mask covering my face, and the doctor stating that I didn't have a skull fracture but did have a mild concussion, and was lucky I hadn't broken my neck landing head-first like I had. Seven stitches later I went home to spend the rest of the day lying on the couch. The following morning I woke with my eyes swollen shut and was back in emergency. When I returned to school the next day I was a huge celebrity with the other kids, having been taken away by ambulance and leaving a puddle of blood in the middle of the playground.
And so it was that, at the age of 11, my parents signed me up for MedicAlert. They had bought me a medical ID bracelet when I was diagnosed with diabetes two years earlier—a bulky, gold bracelet with a giant red medical logo that said simply DIABETIC on the underside—that they had purchased at the drug store and made me wear, even though I hated it. After the swing incidence, they decided to take the paramedics' advice and get a bracelet that could be engraved with a customized message.
I remember standing in the kitchen having my wrist measured as my mom spoke on the phone with the company. When the bracelet arrived in the mail I thought it was far more appealing than my previous bracelet, and wore it without complaint. After clasping it on, a MedicAlert bracelet didn't leave my wrist for the next 20 years. I grew familiar with the weight of the bracelet around my wrist. I fiddled with the engraved tag, rather than my hair or nearby objects, when I was nervous or bored. The soft clink of the chain and tag against the desk surface as I worked because a subtle soundtrack to my years of school. In high school I had a friend who also wore a MedicAlert bracelet. We were the only two wearing them in our social circle, and I felt a sense of solidarity with her. Periodically, we would flip our bracelets over to compare the engravings. Whenever my bracelet was removed my wrist felt almost foreign, and I would have strange phantom sensations of the bracelet's weight and touch against my skin even in its absence.
Then, in early 2013, the bracelet broke. I'd had my share of bracelets break over the years, virtually always from swimming, where I would hit lane ropes with my wrist. Often, I would take it to a jewellers the same day to have the chain replaced. But this time around, the chain broke at random while I was going about my day, and I lost the tag to the streets or maze of public transit. I knew that I should call MedicAlert to get a new one. But I was always "too busy" and put it off. I went for nearly a year with no medical ID bracelet.
Several weeks ago I was riding the train when I started to feel a bit low. I tested at 3.3 mmol/L and popped two glucose tablets in my mouth. Twenty minutes later I was picking up groceries when I suddenly began to feel horrible. Within minutes I went from feeling fine to feeling lightheaded, the bustle of the store around me became muffled, and a vague tingling sensation spread through my entire body. Every time I took a step I felt like I might topple over. I tested and despite the two glucose tablets I'd taken earlier, I had dropped to 2.1 mmol/L. As I stood treating the low with five more glucose tablets, I closed my eyes and willed myself to feel better, at least enough so that I could walk without falling over. It took a good 20 minutes for my blood sugar to come back up and even longer for me to feel completely better. During those 20 minutes I was very aware that, should I collapse, I had no medical ID bracelet.
And so, I took the plunge and not only got a new medical ID bracelet, but switched brands for the first time in 20 years. I had been a member of MedicAlert since long before they charged for membership, and I wasn't at all sure I wanted to pay $60 a year for one. I also wanted to be able to order bracelets online, which I couldn't do with my (now non-existent) free membership. So, I ordered from Lauren's Hope instead. It took me a long time fiddling with wording to find something that fit and looked decent. I picked a grey medical emblem, because I like to be discreet. I ordered the cheapest chain possible, figuring that, if I liked it, I could order nicer ones later on. I also ordered a waterproof sports band with inserts that could be written on, so that I could wear them when I swam and not risk losing yet another bracelet to the pool.
When the bracelets arrived, I'll admit that I didn't immediately love it. I didn't dislike it, either. I'm picky about changes, especially after 20 years! The engraved tag was bigger than what I'm used to with MedicAlert bracelets. It's more reflective and shiny, too, which put me off at first, because I felt like it would draw attention to it. But, after a week of wearing it, I've grown to like it. It's very lightweight, and the grey medical emblem is pretty discreet. I like that, if I need to, I can order a new tag for around $25, and that I can order more chains to suit whatever mood or social situation I may be in.
The sports band is neat, too. It's a fabric and Velcro bracelet that hold medical symbols and "Alert Inside" on the outside and contains two small waterproof inserts that can be pulled out when the bracelet is removed. I can't judge the quality of this since I haven't used it yet (although the font on one of the inserts did smudge the moment I touched it), and I've fabricated my own inserts on the computer, since the ones the bracelet came with are way too small for me to write in. But the bracelet is comfortable to wear and, I think, would be very noticeable to any first aid staff or paramedics, especially while swimming.
Interestingly, I've discovered in the past week of wearing a medical ID bracelet that I think the bracelet is helpful in ways beyond simple identification in an emergency. Over the past nine months of not having one, I've sort of missed it.
The bracelet is a symbol that the wearer has one or more serious medical condition, and some people hate making that information obvious to anyone who looks at them. Part of the idea behind bracelets from companies like Lauren's Hope is that you can turn the bracelet so that the medical tag is hidden and the pretty bracelet is the first thing people see. But I don't mind it being visible. I'm used to symbols, including any positive or negative connotations they may dredge up. I've used a white cane since I was eight, and over the years have become comfortable with how others might react or what they might think but leave unspoken. In some ways, the bracelet acts as a similar symbol, and in some ways can help make some otherwise awkward situations easier for me.
I have written before about how hard it can be to turn down food. But, somehow, I find the bracelet makes it easier for me to stand up for myself under peer pressure. The other day we had a cake at work to celebrate November staff birthdays. Someone went to hand me a plate, and I shook my head and said, "No, I'm not having any, thanks."
Surprisingly, the person simply handed the plate to someone else. As we all sat around the table, everyone eating except me, someone across from me piped up and said, "Is it because of the sugar that you're not eating it?"
Well, technically it was because of the carbohydrates, but I simply said, "Yes, that's why." No one even attempted to cajole or pressure me into having a piece, which I think is a first for me in this office.
Maybe it's simply that my co-workers are beginning to learn that I typically don't accept cake. But when I refused (which I had made up my mind to do even before showing up to the staff room), I did so more firmly than I usually do. As I sat there with the cake being cut and plate coming ever closer, I fiddled with my bracelet in my childhood nervous habit, and the weight of the metal on my skin was like the reassuring touch. Yes, the bracelet confirmed, you are doing the right thing for you health. Sometimes, that little reminder at the right moment is what makes the difference between me accepting and refusing a high-carbohydrate treat.
And who knows, maybe the person handing me the plate caught sight of the bracelet, too, and was reminded about why I might be declining.
I'm glad to have a medical ID bracelet back on my wrist. Whether it's to communicate with paramedics during a true emergency, or just as a reminder to myself and others that I need to take my health seriously, it's been with me for almost my entire life, and is what I'm most comfortable with.
Sunday, November 17, 2013
Finished cutting, I put the scissors down on the table. Keeping the piece of paper I'm working with in the air in front of my face, I reach for the spot where I had placed the glue stick a few moments earlier. My hand finds empty air. I move the paper aside and look down at the table, but it's impossible to pick out the glue stick amidst the scattered mess of craft supplies.
"Where's the glue?" I ask no one in particular.
A few seconds later the stick appears in my hand. "Here," says the classmate sitting next to me. I thank her and hold the paper up again, getting as close to it as my nose will allow and tilting my head so that I don't block the light.
"How come you can't see very well?" asks the girl, watching me work.
My answer is only a little delayed as I concentrate on carefully lining up the objects I am pasting. "I was born too early and the treatment I needed in the hospital damaged my eyes."
"Why would doctors do that?" my classmate asks, seeming astonished that medicine could ever cause harm.
"I don't know," I say, and feel a moment of anger at the doctors who, I assume, must have made some sort of mistake.
I was six, and this is the first memory I have of explaining my eye condition and premature birth to another person.
As far back as I can remember, I have always known that I was born premature. I grew up knowing that my visual impairment was from retinopathy of prematurity (ROP)—damage to my retinas thought to be caused, in part, by receiving high concentrations of oxygen. I grew up knowing that the chronic cough I had was from scarring in my lungs caused by a combination of prematurity and treatments I'd needed to help me breathe.
Growing up, I had scars that I would periodically ask my parents about.
"Those are from needles you had in your head to feed you," my dad would tell me when I asked about the little round scars on my scalp where no hair grew.
"That's from when your lungs were filling with fluid and doctors had to do a treatment to save your life," my mom would explain when I asked about the scar on my chest.
"That's from a bad infection you had in the hospital," she said of the large scar on my ankle.
I didn't really believe my parents sometimes. Especially my dad's assertion that I'd had needles in my head to feed me. I thought he was making it up—until I was older and discovered that babies really do get IVs in their scalp.
Today, I can't imagine what my parents must have gone through. Both were younger than I am now, and I was their first child. And instead of being thrown into happy parenthood, they were thrown into the months-long journey that is prematurity.
My parents are sparse on details, but have told me what they remember. I was born three months premature in late 1981. My actual due date was not until early 1982. My dad tells of how, when I was born, I was small enough that he could hold me in one hand. I weighed two pounds and six ounces. My experiences after birth were starkly different from most newborns.
I was put on a ventilator and spent months in an incubator in the neonatal intensive care unit (NICU). I faced severe breathing problems, blood infections, heart issues, and other complications. I went into cardiac arrest at least once. It was nearly five months before I finally came home. Even then, I remained on a breathing monitor for several months after my discharge. Fortunately, the alarm that would sound if I stopped breathing never went off.
Had I been born a couple of decades earlier the medical technology to save my life would not have been available.
During my childhood, prematurity was sometimes brought up at family gatherings. An aunt or uncle would relate a story from when I was a baby. I always had a sense that I was somehow special. But prematurity was always a vague concept to me. I had never seen a NICU except in blurry Polaroid photographs of me in an incubator, covered in tape and tubing. I had never seen a premature infant, or known anyone who gave birth to one. The only other preemie I knew was a boy a few years younger than me who had the same eye condition, but had been left with no residual vision, not even light perception.
When I was in high school I began to watch E.R. on television with my mom. One episode we sat watching together (her on the couch, me sitting on a footstool six inches from the TV screen) took place in the NICU. Periodically, my mom would make a comment, or I would ask a question.
"Did I cry in the incubator?"
"Not at first. But when you were older, you did. Your cries were so quiet the nurses could hardly hear you."
After one question I commented in reply, "That's cool."
"No, it's not," my mom retorted, suddenly serious. "There were some really scary moments." I didn't ask any more questions after that. I suddenly realized, perhaps for the first time, that I really could have died.
As I grew older I began to realize that doctors had not made some sort of mistake. They had made a choice. Give me higher concentrations of oxygen and risk blindness, or give me lower concentrations of oxygen and risk death. I am forever grateful for them for choosing the former.
At the age of 17, in my second-to-last year of high school, I was told by my ophthalmologist that I had the beginnings of cataracts forming, and that they were a complication of ROP. I was a bit stunned. I had assumed that prematurity was just an interesting relic of my past, that the damage had been done. I had never thought that it could continue to crop up and affect me decades later.
As a teenager I used to sneak volumes of our family's Encyclopaedia Britannica into my bedroom to look up entries under my video magnifier. Among other things (including a failed attempt to read the entire tome from A to Z), I remember looking up information about premature birth and ROP. Through those entries I learned about the NICU, ventilators, and the possible complications of prematurity. Complications beyond visual impairment, including cerebral palsy, hearing impairment, learning disabilities, and neurological conditions. I was mortified one day when my mom walked into my room without knocking and saw, magnified on the video magnifier screen, what I was reading. She was completely understanding, though, and said I shouldn't be embarrassed about wanting to learn about prematurity.
Shortly after I was told I had cataracts I logged on to the still-fledgling internet through our dial-up connection and found a listserv for adults with retinopathy of prematurity. Through this list I discovered that there were a wide range of complications that could occur in adulthood, everything from cataracts to glaucoma to retinal detachments. I still participate on this same discussion list today, although its location has been shuffled around several times as services change and moderators come and go. As an adult I have begun to experience more of these late ROP complications. In addition to cataracts, I have experienced retinal tears requiring several laser surgeries and, most recently, been referred to a glaucoma specialist for monitoring.
During the past few years many of my friends and peers have begun families. And, suddenly, premature birth has become very real to me. Through e-mails and Facebook posts I have seen the journeys of at least five preemies born over the past few years. Some only a few weeks premature, some many months premature. I know of twins born extremely early who, at this moment, are in the NICU, where they will be for many months to come.
In adulthood, I've come to realize how much of a miracle preemies are. How close to death some of us came and still survived. And how strong and resilient preemies are, even into adulthood. How some of us face lifelong challenges and still thrive.
And not just preemies. Their parents who share the journey with them, sometimes into their adult life. And the doctors who go through lengths to save their life, sometimes facing tough choices in the process.
And, sadly, I've also come to realize how heartbreaking preemies can be when, despite advanced medical care, some don't make it.
Of the preemie survivors who I have met as an adult, all have invariably expressed one sentiment, no matter what disabilities or challenges they face. They are grateful to be alive.
There is an award-winning documentary called Preemie, which I stumbled upon about a year ago. It tells the story of four preemies and is directed by the father of one of those babies. After the opening credits there is a montage of words that coalesces into the word preemie.
Hope. Struggle. Uncertainty. Fear. Miracle. Strength.
I can't think of a better way of summing up the journey of prematurity than those six words. So, here's to all the preemies—past, present, and future—and to their parents, families, and doctors.
Monday, October 14, 2013
Lately, I have been trying to make a point of feeling gratitude. Every day, I try to stop and think of one or more things that I am grateful for. Lately, I've also noticed in articles I've read and TED Talks I've watched that gratitude comes up again and again in discussions and research about what makes people happy. And, the more I think about it, the more I find things I am grateful for.
I am grateful for family whose love, advice, and support in everything I do in life is absolute and unwavering.
I am grateful for friends who provide a listening ear, a source of company and laughter, and are always looking out for me.
I am grateful for technology which allows me to stay healthy, live independently, and provides a source of endless fascination and enjoyment.
I am grateful for medications that keep me alive every day, that provide a safety net in emergencies, and that may someday lead to a cure.
I am grateful for my country which provides safe cities, abundant food, and clean drinking water ... things so many people can't take for granted.
I am grateful for my job which provides a source of income, new challenges and opportunities, and allows me the great privilege of helping others.
Most of all, I am grateful for being alive. Every day, I am aware that this is an immense gift. In the past 48 hours I have woken with a blood sugar of 2.6 mmol/L; I have crossed the street multiple times; I have had an afternoon of repeated asthma attacks; I have watched the evening news; I have been served hashbrowns at a restaurant (even after witnessing the server scribble a note about my anaphylactic allergy). I am continually aware that this gift could be taken away from me at any instant, without notice ... and therefore I am grateful, every day.
Happy Thanksgiving to those living in Canada. I hope it has been a wonderful long weekend filled with family, friends, and gratitude. And I hope everyone can continue to find things to be grateful for every day for the rest of the year.
Tuesday, October 8, 2013
So it ended up fine, because of [my friend], and I’m so grateful that she knew what to do and actually did something. I’m going to carry a [fanny pack] now with candy and food in it. What really freaks me out is what if [my friend] hadn’t been there?
It was over two decades ago that I first encountered the stages of grief in a book about Type 1 diabetes written for newly-diagnosed children and their families. Through this montage of memories and reflections, there's been no mention of acceptance. I found myself wondering if maybe acceptance never came. Maybe that's what made chronic illness different from things like death. Maybe, I would never get to that stage.
Saturday, September 7, 2013
I have a good deal of travel vision. About 99% of the time, I can see a flight of stairs coming. It depends on the weather and lighting, of course, but most of the time I know that a flight is coming up, even if I can't see it until I'm nearly on top of it. I can see when to slow down, where the railing is, and whether the steps are ascending or descending. I may use my cane to check depth or confirm where the flight begins or ends, but I can see enough that the cane is simply for confirmation. I can also usually see cars when they get close—at least their type (car, truck, van) and colour, if not their details or the driver inside. Depending on the lighting, I may be able to see the colour of the traffic light, although typically I can't see this unless it's overcast or dusk. Mostly, I rely on traffic flow to determine when to cross a street, something I was taught from the time I was young. But I look both ways before I cross, just like everyone else. I just make sure to listen, too.
Sometimes, maybe often, I forget how little I see. I can walk around without a cane in familiar territory, even outdoor territory, and no one would have any idea that I was legally blind. Friends often forget, too. Or they are perplexed about what I can and can't see—which is understandable, given that what I see can change dramatically based on the environment. If the weather is overcast I may be able to see quite well (relatively speaking). But if it's raining, turning sidewalks and roads into a reflective surface and source of glare, my ability to distinguish objects around me decreases dramatically. During daylight my vision may be adequate to walk down a sidewalk with minimal reliance on my cane, but come sundown my vision is virtually gone and I switch to relying completely on competent use of cane techniques. Even the direction I'm walking can make a difference: with my back to the sun I can clearly see objects, but turn around and walk the other way and the glare from the sun obliterates everything. It's no wonder anyone watching me might get confused!
When I first began using a cane regularly in my late teens, I got some interesting reactions from peers who had previously seen me walking and even running around the high school without one. Did I really need to use that? I was walking with them. I was in familiar territory with no steps. They were probably just as self-conscious walking with someone using a white cane as I was using a white cane myself.
What they didn't see was me stopping dead in my tracks after sundown, calling to the friends I'd been walking with, who had suddenly vanished into the blackness along with the path and objects around us. What they didn't see was me trying to travel with sun shining in my face or glaring off glass windows downtown, where it obliterated everything in front of me with its brightness. What they didn't see was me travelling once I was out of familiar territory, where I hesitated at every curb and crack in the sidewalk to check, and where I jarred my teeth when I stepped down off unexpected drop-offs.
My first experience of wishing I had my cane and finding I didn't came in about grade ten. Our gym class used to run around a trail in the woods across the street from the high school. I had a note saying that I couldn't run, on account of the fact that I couldn't see rocks and tree roots at all due to the effects of speckled light filtering through trees. So, I was paired with a classmate and we were allowed to walk (although I'm not sure my teacher ever really believed that I couldn't run). On this particular occasion I somehow took a wrong turn and got separated from my partner and from the entire group. I tried to find them, but soon realized the class period was coming to an end and they had probably gone back to the school. This was all familiar territory to me, but as I stood on the edge of the busy road, trying to determine when to cross, I found myself wishing for my cane for the first time in my life. I made it across the street safely, but felt unsafe doing so.
Over the years since high school, I have become a full-time cane user. College and university brought with it solo travel in unfamiliar territory, night travel, and a growing awareness that no one else was looking out for me except myself. Even though I have residual vision, and use it frequently during my travels, these days I feel uncertain and cautious when I'm not using my cane. On the very rare occasions I do leave home without it, I find myself slowing down, staring at the ground ahead of me, not trusting what I see. Is that a crack in the sidewalk or a step? As a kid, I often used to slide my foot forward to check. As an adult, I feel far too conspicuous doing that, so I probe with the tip of my cane instead.
When I first began using a white cane, the fact that I had residual vision was a huge hurdle for me. I was terrified as a teenager that someone would accuse me of faking. It has not happened in nearly fifteen years of being a full-time cane user, but most people I encounter do assume I have no vision. They offer me their arm, or give me detailed directions about how many metres in front of me the bus stop is. I don't mind this type of assistance, but as a teenager I used to feel guilty that I could see, when everyone who saw me thought I was totally blind. In truth, anyone who is legally blind has a perfect right to use a white cane, but it's a decision that many people with low vision struggle with ... and some never get past that struggle.
I have, in fact, been questioned several times over the years about why I use a cane. Friends and acquaintances have sometimes seen me step up onto a curb without touching it with the cane first, or see me walking around some places with it folded up, and asked why I need it. Over the years, those close to me have come to see the value of the cane, both in my safety and independence, and no longer question me. But occasionally, I am still questioned, more out of curiosity than criticism. Recently, an O&M instructor (not one I was working with) commented that I didn't really need a cane—although she was surprised and quickly backtracked on the statement when I told her what my visual acuity was. When questions like these arise, especially from professionals, that old twinge of self-consciousness comes creeping back. Maybe I don't really need a cane. Maybe I'm just not using my vision well enough. Maybe I just need to learn to trust myself more. I can, after all, see 99% of the things around me when I'm travelling in good lighting. I've learned from talking with others that this feeling of uncertainty and self-consciousness seems to be an almost universal experience among cane users with residual vision, at least in the beginning. (Not just with using a white cane, but with any tool associated with blindness, such as braille or a screen reader.) Even after so long, I still find my mind tangled up in this line of thinking on occasion. I certainly need a cane in some situations like at night or in poor weather, but maybe I don't really need one all the time.
But then, every once in a while, I encounter the 1% of things I can't see, even in good lighting. My cane suddenly clangs off a signpost I completely missed, or drops off the edge of a curb I had no idea was coming, or snags in a tree branch across the path that I didn't know I should keep an eye out for. And it's these moments that I feel completely emotionally vindicated.
The other day I was walking downtown with a friend. It wasn't an unfamiliar area, but it wasn't an area I had memorized, either. It was slightly overcast, virtually the perfect lighting conditions for my vision. And suddenly, as we walked, I felt my cane unexpectedly drop off the edge of a step. I hadn't slowed down at all, so my forward momentum nearly pitched me down the short flight of stairs. I was so startled I actually cried out; I am so used to seeing obstacles and changes in elevation before my cane reaches them that the sensation of my cane detecting something unseen came as a complete surprise.
Then I composed myself and walked down the four or five stairs that I'd been clueless about a second earlier. As I did, I turned to my friend. "I didn't see these stairs at all," I said in explanation of my reaction. "And that's why I use a cane all the time—for the 1% of stairs I don't see."
Maybe I could get along relatively fine in most areas even if I didn't use a cane, albeit seeming a bit uncertain and clumsy to anyone watching. But I'd also probably have a lot more bruises, a few more broken bones, and possibly worse injuries for not taking advantage of such a tool.
Monday, August 26, 2013
An hour after lunch I was wrapping up a conference call with a client when I began feeling a bit low. I tested at 2.9 mmol/L and thought that was a little odd, so cancelled the temporary basal rate on my pump and ate a few glucose tablets.
Fifteen minutes later I felt no better; maybe even a little worse. I tested again and found myself at 3.1 mmol/L. I ate some more glucose tablets and took a few minutes out from work. I rarely get shaky with lows, but I felt shaky with this one, like my body was fighting with all its might to bring my blood sugar up.
Fifteen minutes later I'm still feeling low. I check again and find I'm at 3.3 mmol/L. By this point I knew something wasn't right. I check my pump and see that I have over four units of insulin on board. It was at this point that I realized I had bolused for 40 grams when I had eaten only 15 grams.
I felt no real panic at the time, although I did debate telling an office mate that I was having a bad low, which I don't typically do. I ate the remainder of the glucose tablets and brought out my backup supply. I suspended my pump's insulin delivery. I went to the fridge and brought out a small tub of fruit and ate the entire thing.
I left my pump off for two hours. I was sure I was overdoing it. But two hours later I was 4.7 mmol/L. And three hours after that, a full five hours after eating an entire tube of glucose tablets, a half a tub of fruit, and going without insulin for two hours, I was 7.0 mmol/L.
That evening, as I lay in bed drifting towards sleep, I had the stark realization that I had almost died that day. Not literally, of course. But it was the kind of low that was not a disaster because I had supplies, and backup supplies. And because I tested often and knew what to do. It's the kind of low that easily could have turned out frighteningly differently.
Flash forward a few months.
The night before last I woke up in the middle of the night with a blood sugar of 2.8 mmol/L. I ate several glucose tablets, a granola bar, and a glass of almond milk. I didn't bolus for any of it, and I woke up in the morning at 5.5 mmol/L. It should have been a warning, but I made no changes to my pump basal rates. I did, however, set my alarm for 2:00 AM last night so that I could wake up and check, just in case.
At 2:00 last night, I have no memory of the alarm going off. I do have a vague memory of removing the wrist brace I've started wearing at night for carpel tunnel syndrome. Perhaps at this point I got up and turned the alarm off. At any rate, there is no record in my glucose meter that I tested.
At 4:00 AM, I woke up with my right hand tingling like crazy. I climbed out of bed and retrieved the wrist brace from the spot across the room where it had landed when I flung it away. Since I was up, I decided to test. I was 3.4 mmol/L and ate a glucose tablet. After thinking a moment, I ate another one as well. Just in case.
Coughing woke me up in the morning. I tossed and turned for a while before reluctantly climbing out of bed. Then I looked at the time.
I'm supposed to be at work at 8:30 AM. My alarm usually goes off at 6:00 AM.
The first thing I did was grab the phone to call my colleague and let her know there was no way I would be there in time for my 9:00 appointment. It was all I could think about. I dialled and pressed the phone to my ear, hearing no dial tone. I hung up and tried again, and for a few moments couldn't even figure out if the phone was on or off. Finally, I managed to punch in the right digits and got through. My colleague was available and had no appointments, so said she would cover me for the appointment.
It wasn't until I hung up that I thought to test.
I was surprised when I saw the reading. I didn't feel low at all. As I scrambled to get ready for work, I crunched through four glucose tablets. As I was heading out the door, I popped one more in my mouth. I called a cab to take me to the nearest train station, since I didn't know how long I'd have to wait for a bus.
It wasn't until my mind cleared that I realized how foggy it had been when I first woke up.
When I got to the station, half an hour after my initial test, I still felt odd and shaky. I tested at 4.3 mmol/L and, even though I wasn't truly low, ate another glucose tablet. I found myself wondering if I had any stash of low supplies in my office, in case I burned through the tube of tablets I had with me.
It was when I was riding the train, sitting quietly staring out the window, that I began to really process what had happened. Before leaving I had checked my alarm. Both alarms had been set correctly and turned on.
Was I really low all night? Was that why I didn't wake up for two alarms?
And then the thought crept into my mind, the thought that has haunted every adult with Type 1 diabetes who lives alone, and every parent of a child with Type 1 diabetes.
What if I hadn't woken up at all this morning?
I arrived at my office still feeling off. It was now an hour after initially waking up. The first thing I did after walking into my office was test. 3.8 mmol/L. My colleague came in to say hello and ask how I was. I ignored her momentarily, instead popping another two glucose tablets and pulling out my pump. I lowered all my basal rates across the board.
I thought about my childhood, dream-like memories of mornings waking up with my entire body tingling to find my mom pressing the straw of a juice box between my lips, telling me that I was low and had to drink some juice. And—worse—a few memories missing completely, filled in only by my parents' retelling of events. Battles with glucose tablets and juice boxes, me resisting and screaming, or laughing, or spitting out the glucose gel that was squeezed into my cheek. The shape of someone standing in the doorway holding a phone, asking if they should call 911.
For the most part, I forget. Most of the time, I think it's a bit dramatic to call Type 1 diabetes a life-threatening disease. People live with this disease for years. Most of the time, we deal with it and move on with life living, working, and participating in any and all activities we choose.
Then there are times like today, when I sit at work, barely hearing the meeting proceedings. Thinking back to this morning. What if I hadn't taken off the wrist brace, and my hand hadn't tingled and woken me up, and I hadn't eaten some glucose tablets? What if allergies hadn't woken me up this morning? What if I hadn't woken up at all?
What if, what if ...
On some occasions, I feel threatened. I feel like I flirted with death, getting too close to the line for comfort, and still make it in the end by pure luck. These are the scary lows, the dangerous highs, the close calls exchanged among the diabetes community. These are the forum posts made at 2:30 AM as someone, somewhere, is up treating a dangerously out of range blood sugar while the world around them sleeps. This is the fear of a mother who still worries about her adult Type 1 daughter if she doesn't hear from her at least once a day. This is the realization that of the dozens of diabetes-related decisions we make daily, it takes only one wrong decision for things to get perilous.
Sometimes, I feel like life-threatening is a completely appropriate label for this disease.
Friday, August 16, 2013
At age 18, for the first time in my life, I am reading in bed.
I had read before bed for years. But for me, reading before bed had never meant reading in bed. Even with large print, it was impossible for me to read comfortably while lying down. I needed bright light at close range, needed to wear uncomfortably heavy magnifying glasses, and needed to hold the print so close that I either blocked the light with my head or my arms got tired holding the book. I had tried many times before, and each ended with me sighing, turning off the bedside light, and stumbling over to the desk where my video magnifier sat. There, I would often read for hours, the only sound after everyone had gone to sleep being the squeak of the reading tray as I scanned words underneath the camera. As a teenager I would read well past midnight, until my eyes got so bleary I could no longer focus on the words. But I'd never been able to read in bed, words filtering through a half-conscious mind as sleep crept in. Reading in bed had always meant listening to an audio book, which wasn't the same.
Contrary to what many people assume when they see me reading braille, I did not grow up reading the code. I grew up reading print. Although I learned a fair chunk of the braille code as a child, I was never truly a braille reader. Braille was an adjunct skill, a backup in case I ever needed it in future. Although I learned the basics of reading and writing, I never made it through the entire code. It wasn't a tool I ever used in the classroom, and in fact I hated the extra work of it, having to sit at home in the evenings reading a few pages of braille when I wasn't using it for any practical purpose. To this day, I am thankful for learning those basics: the muscle memory of two-handed reading and using a braille keyboard made it possible to pick up the skill again without any formal instruction as an adult. But I am regretful that my teachers didn't encourage me to use the skill in the classroom, because doing so may have made me see the value of it well before my young adult years.
I didn't even become a "reader" at all until I was in grade four. Before that, I couldn't read much. My primary teachers in the 1980s used a "whole language" approach where students were sort of expected to pick up reading on their own, just by being surrounded by and exposed to books and stories. This didn't work so well for me, not being able to see a majority of the print plastered on classroom walls nor the books available in the classroom or school library. By grade three, when I was a full two grade levels below expectations in reading, terms like "learning disability" were beginning to be tossed around.
That summer, my mom decided that enough was enough and that (since I didn't enjoy doing it on my own) I would be made to read. She hired a girl a few years older than me to sit with me in front of my black-and-white video magnifier as I read aloud for half an hour each day. She told the girl to just tell me any words I didn't know. She let me pick the book (Karen's Witch by Ann M. Martin), and every day that summer I sat, tethered to my desk, reading for at least half an hour. Some days, as the summer neared an end, I chose to read for longer than the requisite 30 minutes. But, by the end of that summer I could read. In fact, when I received academic testing in grade four, the school staff were startled by the results which pegged my reading level a full two grade levels above expectations.
After that, I never looked back. I loved reading. I devoured books. I loved days with inclement weather when we were allowed to stay inside during lunch hour, where I could read, instead of having to go outside. Libraries were (and still are) one of my favourite places to be. When the after-lunch silent reading period came to an end in class I would often try to continue reading, hiding behind the bulk of the video magnifier. Sometimes it worked, and I managed to sneak in an extra five or ten minutes before the teacher realized I was missing. In high school, I had to give my parents books I bought for safe-keeping, telling them not to let me have them until I was done my homework. As they fell asleep in an adjacent room, my parents could often hear the squeak of my video magnifier tray long after my bedtime. On weekends, they sometimes had to ban me from reading just so that I would get out of my bedroom.
And that, my bedroom, highlighted the only downside to reading for me. I couldn't do it, at least not for long or with comfort, without a video magnifier. Nowadays there are portable units (although they are still not the best for extended reading), but back in the 1990s it meant that I was limited to one single location at home where I could read. At school, too, I was limited to the two video magnifiers stationed in various locations in the school. I envied people who could read on the bus. I especially envied my brothers during road and camping trips. I always brought a large print book with me, but even the print in those required me to wear my glasses and read, squinting, with my nose skimming the page and my head tilted at odd angles so as not to block the light. I often persisted despite the headache and muscle cramps that set in with time.
Near the end of high school I attended a summer camp for teenagers with visual impairments, which kindled my interest in braille. That year, I dug out my old Perkins brailler. which had sat in my closet untouched for nearly ten years, and re-learned the braille alphabet. In grade 12, I wrote a children's story about a blind girl attending regular school, and as part of that creative writing project (and, yes, partly to impress my teacher), I produced a braille copy of the story.
Around the same time, I asked the public librarian if they had any children's books in braille. I was shocked when she went to the back, shuffled items around, and returned a few minutes later with about four titles. I felt it was wrong, somehow, to have the braille books shut away like that. But I took Corduroy home and read it. I sat in an armchair in the living room as I puzzled through the long-forgotten symbols. It took me an hour to get through that short children's book, but as I read it I realized that I could read this anywhere. It didn't depend on light or technology or how much visual energy I had used up earlier that day with reading or drawing or playing video games. That day was the beginning of my love of braille.
I spent the rest of my grade 12 year re-teaching myself braille reading and writing. I studied it daily, in any spare moment I could find. It got to the point that my mom told me to quit with the braille and focus on my school grades. I was shy about it at first; I thought people would think it was a bit weird. For some reason, I was scared to mention my interest to my itinerant vision teacher, and therefore never brought it up with her. By the end of that school year, when I graduated in June of 2000, I was reading multi-volume braille titles from the CNIB Library. I still wasn't fast, but I quickly discovered reading in bed, and did so daily. During my second year of college I took the plunge and asked to use braille as my preferred reading medium for textbooks and course materials. I also got a Braille Lite on loan, which I credit with catapulting me into actually being a fluent braille reader. Braille was not easy. It took daily practice and, even with that, it was years before I considered myself fast. Before I began my student teaching program in 2006, I was panicked by the fact that I couldn't read aloud fluently without halting and stumbling. For several months, I practiced reading aloud daily, sometimes into thin air and sometimes into a tape recorder, which I forced myself to listen to. That's when I went from being a fluent silent reader to being able to read aloud with fluency and expression. I had a sense that braille would allow me to excel in the future, if I could become as proficient at it as possible.
I was right. Braille has allowed me to become certified to teach in several specializations which each involved practicums that I suspect would have been much, much harder (if not impossible) without using braille. It has allowed me to serve on boards, chair meetings, and make public presentations. It has allowed me to participate in extracurricular activities such as Toastmasters (and get compliments about my "eye contact" with the audience during my speeches). In some aspects of teaching, using braille is an advantage over using print.
The other day I played a game of concept-review Jeopardy with a group of kids. I had the categories and questions on my BrailleNote, formatted so that I could jump from category to category or question to question using the thumb keys on the device. I was able to navigate and read just as quickly as someone using print, and I was able to be much more highly engaged with the students than would have been possible hiding behind a laptop or piece of paper—something that has often been mentioned when other professionals have done formal observations for practicums or evaluations. Some tasks I have done, such as formal academic assessments that are highly scripted and timed, I think would be impossible to do while relying on audio or struggling to read magnified print.
It took a lot of effort and investment of time, but learning braille and putting in the effort to become proficient has definitely paid off. I'm still early in my career, and I'm sure it will continue to be an invaluable skill. These days I don't always use braille on a daily basis for my work, since my job does not involve classroom teaching, but I do make an effort to read before bed or while riding public transit when I can, so that I can remain fluent when the need arises. I am at the point where my braille reading speed has matched or surpassed my print reading speed.
Sometimes it truly amazes me how many blind individuals do not know braille, or how many have learned the alphabet but never develop any useful fluency. It is not an uncommon situation that I will find myself to be the most proficient (or only) braille reader in a room despite the fact that I have the most residual vision of the group. I have seen board meetings chaired by someone pausing to listen to a computer's speech synthesizer in their ear before talking. I have seen reports given via a digital player reading a pre-recorded DAISY file. I have had individuals on the phone take notes by repeating what I tell them into a voice recorder. And, while all of these strategies work, none of them are elegant or transparent. Recently an article circulated among the online blindness community about how to use a portable DAISY player as an audio teleprompter. While I appreciate the ingenuity—I love finding new, useful ways of using technology—and while I haven't yet listened to the presentation (although I intend to), I can't imagine how much effort it must take to listen and speak simultaneously. I myself take advantage of synthesized speech and recorded content on a regular basis; there are times when this is faster, or more convenient, or when I just feel like listening instead of reading. But I can't imagine having no real choice. I think back to the days where I was tethered to my desk to read, and I can't imagine going back to that.
There are nights like tonight, when I come home exhausted after a crazy-busy workweek, and just feel like doing something quiet. No computer, no incessant nattering of a voice in my ear. Momentarily, I will get my BrailleNote, sprawl out on the couch with a cup of tea, and find something good to read. And on those nights, and during those moments when doing something would be inefficient or impossible without it, I can't imagine my life without braille.
Monday, August 5, 2013
I sprang out of bed and bolted to my apartment door. The hallway was lit, reverberating even more loudly with the clang of the alarm, but deserted. For an instant, I wondered if this was a drill. Why wasn't everyone evacuating? But in the next moments I was grabbing a coat, fumbling to unplug my cell phone, reaching for my keys and cane, slipping on some sandals, and was out the door.
The hallway was still deserted. The stairwells were lit, and everything seemed normal. But as I descended the first flight I heard the banging of doors and echoes of footsteps, and I was soon joined by a stream of other residents evacuating the building. Trailing down the stairs in our pyjamas and robes, we emerged into the warm summer darkness to find a few dozen residents milling around the building entrance. In another few seconds the murmur of the gathered crowd was overtaken by the wail of sirens as several emergency vehicles pulled up.
Definitely not a drill.
The crowd parted to let the firefighters through. People craned their necks to look up at the high-rise, searching for any hint of flames. Some speculated that they thought they smelled smoke. Other comments were impossible to hear, vying with the alarms still wailing from within. I stood quietly to one side, taking everything in and thinking.
In the light spilling from the building entrance and the intermittent flash of siren lights washing over the mingled crowd, I noticed that some people were carrying backpacks or what looked like coolers. I thought of my earthquake kit up in my apartment, and allowed myself to consider the possibility that some sort of emergency had actually occurred. What if we weren't allowed back in the building tonight? All I had on my person was my cell phone, keys, cane, and the hundred or so units of insulin in my pump. No meter, no glucose tablets, no money or wallet. I was woefully unprepared to get through even one night on my own.
I live in a major earthquake zone, part of the so-called Ring of Fire. Periodically, we get articles in the paper about lack of emergency preparedness by the denizens of this metropolis. Yet I, and probably a majority of young adults who grew up in the area, have never lived through any kind of natural disaster. For us, transit shutdowns or local power outages are the extent of our experience, and they hardly quality as anything more than an inconvenience.
I have an earthquake kit which has remained untouched for several years, the supplies in it likely long expired. Ironically, I've always been a fan of post-apocalyptic stories and have always had an interest in earthquakes (I wanted to be a seismologist when I was in high school, until I changed my mind and went into teaching). Just this past weekend I watched Under the Dome online, and I'm currently halfway through reading One Second After. Incidentally, both stories involve characters with Type 1 diabetes. I've also recently begun co-chairing the Health and Safety committee at work. Perhaps due to this combination of stories and events on my mind, as I stood there huddled in the night with the others I wondered if I would be prepared to up and leave my building right then and there with only the items I carried. Not necessarily to survive the zombie apocalypse, but to survive a real-life emergency.
I've known friends whose lives have been turned upside down in an instant by house fire. I see natural disasters affecting metropolitan areas in the news on a regular basis. What if I'd been woken to my building swaying and the city shaken by a major earthquake? Was I prepared to survive for even a few nights on my own without warning?
The short answer to that question is no. I'm not prepared, at all.
In the end, it turned out that the fire alarm had been, while not quite a false alarm, triggered by a minor issue involving some piece of equipment in the building's innards. Those who thought they smelled smoke were not imagining things. But a half hour after we congregated on the sidewalk beside the building's entrance, a firefighter gave the all-clear for everyone to return to their apartments. I returned to my suite, had a glass of water, and climbed back into bed. I read for a long time before finally drifting off to sleep.
Today I dug my long-neglected earthquake kit out of my front closet. I realized immediately that it wasn't in a pack that I would ever grab in an instant as I headed out the door as I had last night. I unpacked it and found expired pump cartridges, written settings for a model of insulin pump I no longer used, batteries that looked like they were decaying, and glucose tablets that had expired years ago. I found a spare cane, a flashlight that still worked, bottles of water, and some cash. A few years ago my mom, after seeing earthquakes on the news, bought some supplies for my brothers and I, and so I also found a poncho, matches and a lighter, prepaid long distance phone card, and a whistle. Other things which I think would be useful or essential, such as a magnifier, spare meter, insulin (and allergy and asthma medication such as Reactine, Benadryl, an inhaler and an EpiPen), and any sort of food, were completely absent.
Definitely a good foundation for a kit, if it was replenished and updated and stored in a more suitable pack. Definitely not a bad thing to be reminded of every once in a while, either. I think my late-summer project will be updating the kit and making it into something I really can grab on a moment's notice.
Saturday, July 27, 2013
Part of living with diabetes and low vision is all the "gear" that needs to be carried around on a daily basis. I mean, most people can leave the house with their keys, wallet, and cell phone at a minimum and get through the day relatively fine. With diabetes, throw in a glucose meter kit, emergency carbohydrates, insulin pens or a pump, backup supplies (for pumps), and other miscellaneous gear such as a means of record-keeping. With low vision, throw in a monocular, magnifier, sunglasses, and a cane. With allergies, throw in Benadryl and other antihistamines, tissues, an inhaler, and an EpiPen.
And then throw in any of the other necessary extra stuff, such as an iPad or e-book reader—if you have room. Not to mention lunch!
This afternoon I went shopping for a DSLR bag, in hopes that I will bring my camera more places, and it has involved a fair amount of watching YouTube, reading reviews, and making comparisons. I settled on a bag that is larger than what I need for my camera gear, but has the room I need for all that "extra" stuff (and room to grow should I purchase another lens or two). Tonight, I began thinking about revamping my enormous swim bag into something more manageable, and did a quick Amazon search for some ideas. I am always after the most compact means of carrying my stuff, and with all this thinking about bags I also began thinking about how I could easily transfer my essentials from my everyday bag to my camera or swimming bag.
An EpiPen takes up a small amount of space. But when you repeat this for a dozen different pieces of "essential" gear, that space can add up quickly.
I went through a period where I had whittled my "essentials" down so much that the only backup pump supplies I carried on a daily basis was a filled insulin pen and a few needles. Everyone with diabetes knows that low blood sugar can come out of nowhere, and glucose tablets (and backup glucose tablets) are one thing I am never without. But, like an EpiPen, backup pump supplies aren't needed on anywhere near a daily basis, and can take up a lot of space. This worked for a while—until I actually found myself at work one day with a failed infusion site and rapidly climbing blood sugar. At the time I covered with injections, but after repeating that routine several times at work and other locations I've begun to carry a spare infusion set and cartridge with me at all times.
In terms of my low vision gear, I typically pack a monocular, a Compact Mini (a small video magnifier), sunglasses, and of course my cane, although that's mostly in my hand and not in my bag. Still, this is delicate equipment, and my bags in the past have been stuffed so full that LCD screens have been cracked (thankfully on a point-and-shoot camera, not my video magnifier) and sunglasses have been crushed. I've tried leaving some items, such as the monocular, at home ... but without fail, Murphy's Law means that on those occasions I invariably end up on and unfamiliar street corner with sparse pedestrian or vehicular traffic, a situation where a monocular is invaluable for me. And so, I end up counting all these items as essential.
I do make some compromises on what I carry. I only carry one EpiPen with me, even though most sources recommend carrying two. I don't carry a glucagon kit around on a daily basis, even though there is a chance I may someday need it. I don't carry some things, like my reading glasses, on a daily basis even though I occasionally find myself wishing I had them. I carry about as much medical gear to survive for roughly two days—assuming nothing in the bag is lost or damaged—and just hope I never encounter a disaster that calls on me to survive for longer. I live in an earthquake zone, and on occasion I'll see articles or PSAs about how everyone should have a kit that would enable them to survive for 72 hours unassisted in their homes and cars. That's a tall order for someone who uses public transit, but after seeing numerous natural disasters occur in populated areas over the past few years, I've decided that it's not so far-fetched that I could get stranded across the city for a night or two.
Often, especially on days when I have to bring a lunch or something like my iPad or BrailleNote with me, I end up carrying two bags. Sometimes, I feel like a pack mule, especially if I also stop at the grocery store on the way home and end up with a few bags of produce in addition to my original load. I have tried backpacks, but don't favour them because they can get awkward on crowded public transit, and I invariably end up whacking someone in the face when attempting to sit, stand, or turn. My current project is to find a way of packing lunch that makes it small enough to fit inside my bag, so that I have that one less thing to carry on my daily commute.
Evidently, I do a fairly good job of packing large amounts of gear into relatively small bags. Every time someone picks up my bag they go, "Wow, what do you have in here?!" I'm sure they don't really want to know--that would involve going into my entire medical history--but I assure them that, no, I really can't go without anything in the bag. Now, to solve the issue of quickly transferring essentials from one pack to another without forgetting something ...