Happy anniversary to my corneal disease!

On March 5, 2004, my life changed forever. It was also a Friday, the Friday of March Break, I had an eye appointment – a thing I didn’t really enjoy because I always needed new glasses but surely that would end eventually because I was only 12 and not done growing yet. This was the second eye appointment I’d have in 2004: after a routine exam, my optometrist was concerned about something he saw, but suggested I was tired and that I should come back after resting, perhaps on March Break. My mother agreed and booked the appointment accordingly.

In hindsight, I know what he saw in my exam that night was confirmed on March 5. I know that he suggested an appointment at a later time to make sure he was right when he turned on the light at the end of my exam, and quietly, gravely told my mother and I there was something wrong. I know that when he sent me for a second opinion the following year, he was making absolutely certain he was right, that he wasn’t signing me up for a life of carefully scheduled appointments and monitoring and surgery and very expensive custom contact lenses without being positive. I know that the signs something was not quite right were actually evident when I was 7 or 8, but I also know that you can only know that after diagnosis. I appreciate my optometrist’s diligence in my case, in the many comped appointments, in the many free samples (contact solution for hard lenses ain’t cheap), his pursuit of referring me to the corneal specialist with the most resources at hand in the Maritimes, explaining carefully to his staff so I didn’t have to, for always making room for me in his schedule. Of all the experiences I’ve had as a patient, this is the one I’ve felt has centred me, the patient, the most. And for that, I am grateful.

On March 5, 2004, I was 12 years old. I had just gotten my ears pierced (the first time). I was my full adult height but still gangly and gawky. I was old enough to understand the conversation we had in the exam room, but not old enough to grasp how long life could be, when talking about a lifelong disease. Old enough to take care of my own contacts, but not old enough to know how having my whole world rely on a pair of plastic half-spheres would be a pain.

On March 5, 2004, I wore a sweater my nana got me from Northern Reflections: white and periwinkle, with some sparkly fibres woven in. I thought I was hot shit (I was not). I wore that sweater and my feet were sweating in my heavy winter boots as my optometrist explained to my mother and I that he thought I had something called keratoconus.

Keratoconus is a degenerative corneal disease in which your cornea begins to thin and bulge into a cone shape. It presents as astigmatism, and only presents itself clearly once the cornea deteriorates enough. It causes refractive errors, including blurring and distorting, ghost images, and halos around light sources. It can be difficult to correct with glasses, and many patients end up using a variety of special contacts, typically some form of rigid contacts. If the cornea degenerates enough, it can lead to the need for a corneal transplant. The treatment and management plan involves contacts and a procedure called corneal collagen crosslinking, which uses riboflavin and UV light to strengthen the corneal cells and halt the progression of the disease. At present, there is no real cure, and it is unknown how people get keratoconus, though genetic and environmental factors are suspected.

Sounds fun, right? A super great conversation to have when you’re still trying to figure out periods. I didn’t really have room in my brain or life to figure out most of what this meant right away. Seventeen years later, I wake up every morning in a world I struggle to see, because I didn’t just get keratoconus, a very boring rare disease (you know, as far as they go). No, I had to make a really big deal out of it by rapid decline, high myopia and presbyopia complicating the vision correction I needed, corneal scarring, and prompting my optometrist to suggest crosslinking in 2010, since I “might like the use of my eyes for the rest of [my] life.”

I try to be very open about the fact that I have keratoconus, it’s a big fucking deal in my life, and it severely impacts my quality of life, which is something that took me many years to admit. As a teenager, like all teenagers, I so desperately wanted to be normal and well that I absolutely downplayed it. In university, I had a bit of a reckoning when I almost lost a cornea due to scarring and got my crosslinking done (shoutout to third year university Alison – girl, how you got through a school year with that many follow-ups and also like healing eyes, still not sure but thank you). As a working professional adult, the fraught years of constant follow-up and held breath about stability are behind me. I go for yearly-ish (thanks COVID-19) appointments, make sure everything’s fine, have my lenses tweaked ever so slightly, carry on with my life. I finally got my driver’s license at 25 due to this wonderful stability, though there is a sheet of paper in a file somewhere at Service New Brunswick which states that I have keratoconus. I know I’m always one step away from having to give that license back, since I just squeaked over the vision line to get it.

It was this room in my life that allowed me to start thinking about what my keratoconus really meant. It doesn’t have to be a challenging disease – and I know this because one of my brothers also has it. His story is much less twisty than mine: he wears reading glasses; because of his family history (read: me), our optometrist was able to identify and refer early; he was 20 when the alarm bells rang; crosslinking is more accessible and affordable now (even covered by Medicare! A luxury I did not have); and he was able to ask me. This is not to diminish my brother’s story, but it highlights the different experiences we had and continue to have.

But my story is a tough one. I don’t remember Before very well, though I know there was a period in my life where no one was especially worried, that my parents didn’t bother asking me how my eyes were because there was no need to do so. I know there was a time when I was able to read the letters on the chart. And I know there was a time when I was that normal I craved when I was a teenager. Putting that away, learning to stop fighting myself, to acknowledge I need accommodations, that if it’s “inconvenient” for someone to make things accessible to me, they probably aren’t people I want to interact with anyway; that accepting I am disabled doesn’t change who I am. It allows me to live my life more fully. It allows me to participate in life more fully.

This is a weird anniversary to mark, I know. But it’s a significant one, and I honour myself by marking it.

So long and thanks for all the fish, 2020

(I don’t like fish and refuse to eat it, so a fitting quote for this year.)

2020 was devastating on so many levels, but also an unbelievable slog. I wrote this about Canadian Library Workers’ Day, but I wasn’t thinking of everyone when I wrote it, though I suppose everyone has had a very trying year. (I confess that if your trying year is about how your hospital library is still closed and you’re working from home still…I’m not interested in hearing about it quite yet, just like you probably don’t want to hear anything else about how great the Atlantic bubble was, if you didn’t live in it. I get it.) I wrote it about my battered team in my own library system.

This year has been hard, putting aside COVID-19 for a hot minute. I was reflecting on how excited I was for 2020 this time last year – I typically use my holiday coverage period to ponder what I want to work on for the next year, project- and service-wise. I was full of ideas. On December 31, 2019, my then-manager and I “toasted” the completion of a library policy draft with caramels. We were extremely pleased with ourselves, and rather looking forward to a year of exciting projects and partnerships and just things! Things we were ready to do. And for a little while there, it seemed promising. The days before the world shut down and we started walking into our hospitals with a little more trepidation were full of plans and relationship-building, promotion and teaching, and overall really fun. All this despite the fact that a long-serving library technician had announced some months before that she planned to retire at the end of March, and at this time last year, my manager told me she planned to retire at the end of June. Surely, that’s not so bad? We had plenty of time.

Oh sweet summer child.

COVID-19 came, another library technician announced they were also planning on retiring in June, and time started slipping away with no focus but the pandemic. People were redeployed (including me, and I will tell you right now I found it extremely, intensely frustrating, since I was redeployed but stayed in my office and somehow expected to do an already-taxing job which remained at the same pace during the early days of the pandemic, while also being asked to do another full-time job. The hero rhetoric that was pervasive at this time was unhelpful, and glorified the impossible which was being asked of many, many, many healthcare and other essential workers who were grappling with the same fear and anxiety as the rest of the world). Fortunately, things have not been so bad in New Brunswick, and we reverted to a slightly altered form of normal, which has mostly lasted till now.

Being the token millennial in a lot of my professional life so far, I’ve been anxious about succession planning. As in, no one seems to do it and don’t see a problem with a workforce which is led by people who are all roughly the same age? Am I the only screaming about how terrible it is on all levels? Am I the only one openly worried about it because I’m the only one who has decades of professional life left?

According to my pension statement, my earliest retirement date is December 1, 2046.

The “grey wave” arrived at my workplace, and it was not fun. It still isn’t that fun. I mean, planning retirement parties and passing cards sneakily to one another to sign and pulling off surprises, that’s all fun. Realizing you once again have to “do more with less,” the even less you have now when you were already past less…I can safely speak for everyone when I say we are so, so, so tired.

For many reasons, I was not as jubilant in planning for 2021. I was restrained today when discussing ideas with my coworkers, my joy tempered by a rough year. We still have vacancies and no idea when they’ll be filled. A fourth person will be retiring at the end of February. We’re only at a resting place, not coming back down from the mountain. COVID-19 wasn’t the thing that crushed me this year, though it laid bare a lot of the things that did. It’s hard to be excited about all the things you could do when the cloud cover is so heavy. I’m not totally devoid of hope – 2020 was something of uncharted water, and we’re going into 2021 with more experience in realm of how to keep afloat when going through a major transition.

But tomorrow is my last day of work in 2020, and I’ll be wearing sequins and ready to toast to the future, after this daunting year. May it bring its complex mess to us and may we be a little wiser this time.

What are you even doing?

This is a question I ask myself a lot, but today it’s one that grants the opportunity to write something more thoughtful that a harsh Post-It on my desk. I’ve blogged off and on for many years, on various topics, and so creating a new blog isn’t too surprising of a move. However, creating a blog in my professional sphere is something I wasn’t really planning on doing, despite many jokes to the contrary. (The jokes were largely about snacking while working, hence this blog’s title, and I’m sure I’ll make some posts about food on here, but originally I wasn’t serious.) Creating a professional blog is soundly against my plan to live a balanced life, whatever that means – I’m still a little hazy, but it definitely doesn’t mean spending my free time on even more professional activities. However, my barely-popular Twitter account which is often about my life as a solo hospital librarian isn’t always roomy enough for some of the things I have to say.

I don’t want to try and work on something about my experiences into something serious and scholarly, at least, right now. I want a casual space where I’m free from the confines of 280 characters to talk about lessons learned, frustrations, joy, and where I fit in the world of libraries. Often, I don’t feel like like there’s a truly comfortable home: special library but a weird branch of government, academic but not, definitely not public. There’s freedom in this, but it also leaves you in a tough space to find the guiding materials and professional development you actually need. I’m geographically isolated – from not just the library world at large, but my own coworkers. This isolation became even more apparent during COVID-19, while almost every other library in Canada closed and staff worked from home, my employer kept us open and on-site. There was something very lonely in realizing that.

So I’m going to talk about that here. I’m going to talk about the happy things too, like getting name-checked in guideline sets and senior leaders calling your little early career self specifically. I’m going to talk about the weirdness of opening CBC and reading about a case that you worked on and you only figured it out from that news article. I’m going to talk about how absolutely frustrating it is to be a lone millennial in an almost-exclusively boomer workforce (hello I am your token youth). I’m probably going to dedicate at least one post to red lipstick and surgical masks, because I’ve got eight months of extensive knowledge on this now.

This is not where I’m going to share teaching materials or marketing ideas or programs or subject guides. There are plenty of places to find that, and I’m not into reinventing the wheel. Nor is that what I think I can contribute best, or what I want to share (I mean, I’ll send you my teaching outlines for different groups if you want but keep in mind a lot of my teaching is done on the fly with zero prep).

This year in particular, just like everyone else’s year, really solidified a lot of things for me personally and professionally. And like everyone else’s year, it’s been a rough one: that whole pandemic thing, but also three people in my library system retired, a fourth person announced their upcoming retirement, we hired a new person, I’ve taken on a higher workload and more responsibility temporarily, and I have the delightful neighbour of a temporary storage closet for ICU supplies set up next to my office. I have more opinions about face masks and hand sanitizer than I thought I was capable of having. And I am so very tired. But I’m also ready to speak frankly about a number of issues, and I look forward to sharing them with you.