Monday, August 26, 2013

Threatened

Several months ago I had a salad, some fruit, and cheese for lunch. That morning I had been too busy to pack my usual lunch, so picked up some food on the way to work. I had been running high all morning and set an increased basal rate on my pump. Despite this, I remained high. At lunch, as I sat talking with colleagues, I bolused for the food. I didn't even think that I was eating something different than usual. I plugged in my lunch of 40 grams of carbohydrates and continued eating and chatting.

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.

8:58 AM.

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.

2.0 mmol/L.

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

Relish the Silence: An Homage to Braille

I lie back, closing my eyes. It feels awkward at first, but I soon get used to the rhythmic movement of my hands. The words come slowly—I have not been doing this long—but they come silently, each building upon the other until the images forming in my head, a movie reel of the story unfolding before me, becomes so real it feels almost like a dream. Around me, there is silence. No voice chattering in my ear or whirr of a cassette tape player. Not even the rhythmic squeak of my video magnifier's tray.

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.

A braille display and a page of braille dotsI 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

A Moment's Notice

The shrill clangs pulled me out of a deep sleep. What the ...? My mind spluttered. I grabbed my cell phone and peered blearily at the numbers on the lock screen: 4:02 AM. In the next instant it dawned on me that the fire alarm was wailing. Not the tiny smoke detector in my apartment, but the full-fledged clanging of the building's alarm.

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.