Seeing the world through different eyes
Looking back, it's been almost two years since my most recent diagnosis and almost a year and a half since my stem-cell transplant, and I have been very fortunate to have suffered relatively few negative effects from my treatment or as a result of my transplant. Sure, I have had the odd bump here and there: a case of shingles; a little RSV; some short-lived, non-specific respiratory issues; a little graft-vs-host in my mouth; and probably a few other things I've forgotten. Overall though, considering all the chemo and radiation, and the arrival of foreign stem cells, I think I've done pretty well.
One thing that has changed, and that has impacted my life, is the loss of some of my vision. As a result of the severe intracranial pressure associated with my relapse, I have been left with a reduced visual field, mostly affecting the lower half of my vision but also to some degree, my peripheral vision to either side. I am blessed that this hasn't prevented me from being able to read or, for the most part, engaging with my kids, but it has certainly changed the way I go about my day and how I interact with the world.
One of the first things that I noticed causing me frustration was it was a lot more difficult to find the various odds and ends a person needs to find throughout the day. Or perhaps it's better to say it was much easier to lose them. Don't get me wrong, I was perfectly able to lose keys, wallets, phones papers, pens and such before, it's just now I'm so much "better" at it.
More dramatically, I sometimes have a hard time keeping track of my kids (or, I suppose, any short person). I can't count the number of times I have been in the yard or at the playground and gone into panic mode, thinking I had lost a kid, only to discover he was standing 5 feet in front of me. I also have trouble keeping track of toys as they move about the house throughout the day, and I find myself constantly stepping on a metal car or tripping over toy drums. I'm learning to compensate. Gradually.
Of course it is possible that some of these sorts of things would have happened to me anyway; I was never the least clumsy person in the room. It is handy, though, to have a medical "excuse."
I don't know if you've ever had the experience of walking into a fast food restaurant, looking up at the menu, and being overwhelmed by the absurd number of choices and combinations presented. No? Well, I was never fond of the experience myself, but now it's even worse. I'm not sure if it is my random little blind spots, or the fact that I have a harder time with low light and low contrast situations, but fast food menu boards are hard for me to take in. And of course, it being "fast food," I am terribly self-conscious as I stand there trying to make sense of it all while other hungry customers pile up behind me.
But it isn't just fast food menus that give me a hard time. Even walking in to a well-lit department store is a different experience. Perhaps it's because, with my restricted peripheral vision, I have a harder time taking in my surroundings, but I find it more difficult to find my way around stores to find what I'm looking for. It doesn't help that most large stores have given up on the concept of "customer service" (finding a human to help is often an insurmountable challenge). Add to this confusing signage and often crowds of people and the whole experience of shopping has become even less fun than it was before.
There is one request I will make of (especially large) retailers: For the love of all that is good and holy, get all that crap out of your aisles! (I always liked @Dr_Ayad's philosophy of merchandising - keep those aisles clear!)
Reading (kids') stuff
I am blessed and very thankful that my vision loss has not impacted my ability to read (most things); that would have been very hard for me to deal with. What it has impacted, however, is my sensitivity to light and contrast. This, it turns out, makes it ridiculously difficult to read a lot of kids' books. I'm not sure what it is about children's book publishers, but so many of them seem to think it is sensible to feature pages with black text on dark red or (worse) blue backgrounds. Reading these is very difficult and very frustrating. Often, I need to bring the book right to my face to make out the text on those pages and, on occasion, admit defeat and either get another book or pass it to my wife to read.
That being said, this really increases my appreciation for books that stick to black text on white (or light) backgrounds. I think I might have to start an award for such books and their publishers. The prizes, of course, will have to be very modest.
My children are both still quite young, so this hasn't become too big an issue yet, but you can imagine the challenge involved in catching or kicking a ball as it disappears from your vision. I haven't attempted to play hockey yet, but the idea of trying to keep track of a puck without looking at it (because you can't stare at the puck lest you get clocked by someone else, accidentally or otherwise). I also, aside from one brief ride down my street, haven't ridden my bike since my diagnosis. To be honest, I'm a bit afraid of getting hit by a car or running in to someone else.
In a way, it is these things that cause me the most sadness. When I think about my boys growing up and wanting to play catch or soccer or hockey or go mountain biking, that's when I get sad. I picture myself trying to catch (getting a baseball in the face), trying to pass the soccer ball back and forth (and having it go through my legs) or trying to teach them to stick-handle a puck (and constantly skating right by it). I think about Tommy or Bennett wanting to go mountain biking on a trail somewhere. but that I have to stop a couple of kilometers in after I flip over a root or crash into a tree.
When I step back I realize that I should be (and I am) thankful to be alive. But at this point the thought of not being able to fully participate with my sons as they grow up leaves a big hole in my heart.
Just plain gettin' around
While I haven't had my driver's license taken away yet (thanks I'm sure to the miracles of bureaucracy), I have been informed that visual field tests I submitted were, as they say, sub-par. I have been given the opportunity to challenge to maintain my license, the idea being that if I can prove that I can compensate for my vision loss, they'll let me keep my license with necessary restrictions. I hope to be able to keep my license, if for no other reason than to be able to help out on those long drives across the vast Canadian prairie to visit my in-laws.
The reality is that, pending the resolution of all this licensing brouhaha, I haven't been driving at all. Not recently anyway. When I was driving, while I managed fine, it wasn't any fun. Driving used to be fun. Now, frankly, it's a lot of work and a lot more exhausting. To compensate for my reduced visual field I do a lot more shoulder checking and head turning. I'm a bit paranoid that I might miss something or someone. I imagine that, in some ways, this is good. I probably take the task of driving a lot more seriously that many of the hair-doing, makeup-applying, newspaper-reading drivers you see out there. But it's still kind of exhausting.
Not driving in the city it isn't too big of a deal. We live close enough to major bus routes and important things - such as a grocery store, pharmacy, playground, park, ice cream store (yum), coffee shop and city pool and indoor skating - that I can generally get by without too much trouble. It is a bit inconvenient, however, running some errands. Unfortunately, this is partly a function of the City of Winnipeg's (or its Mayor's) confusing love-hate relationship with transit. For the most part, however, I can get where I need to go.
What really worries me about not having a driver's license, though, is the restrictions it would put on me when I find myself in a rural area or small town. People in small towns take for granted that, for some things, they need to hop into the car to go to the next town or the "Big City." But what if you can't drive? Sure, from a lot of towns you can catch a bus to most other major towns, but this is far more expensive than driving, and indescribably less convenient. And with Greyhound's recent expression of ambivalence (or hostility) towards rural bus service in the Prairies, I wouldn't want to count on bus service for my survival. As a result I am hoping to have some ability to drive if for no other reason than to preserve my ability to chose a rural or cottage lifestyle.
Seeing the world
I realize it is a bit melodramatic to make a big deal about partial vision loss. After all, there are plenty of people who deal with much more limiting disabilities and serious health issues. In a way, however, this is what makes this seem significant to me. I haven't suffered a particularly debilitating loss of vision, yet it is striking how much of an impact this has on my life and, when you take into account the potential of not being able to drive, how much it limits my ability to travel outside major cities.
When I had my full vision, I took moving about the world for granted. Now I find I have to be constantly aware of my surroundings lest I step in front of a bike, walk into a short person (which I've done...sorry), or trip on curbs. I fund myself pausing at the top of stairs to judge their spacing before proceeding down (since this is information that I don't get from my peripheral vision anymore). Even little things, like using a debit machine or signing documents, take more concentration than before.
At the end of the day, the reality is that I am very grateful to be alive; after relapsed ALL, this isn't something you take for granted. I also think I have a greater appreciation for what I have and what is important. When I am frustrated, it isn't hard to step back and realize how lucky I am to have my family and my health.
I know I am not completely innocent of complaining about the little things in life, and the things I can't control. But when I hear people on the bus, or on the street lamenting some petty difficulty in their life I want to remind them not to take what they have for granted, because you never know what life will bring tomorrow.