Speedy Gonzales

Today Jeff got a speeding ticket. He has been stopped at least four previous times for speeding, but each time did not get a ticket, and said he would stop speeding if he ever did get one. He has now vowed to stop speeding, not because he thinks it is dangerous but because he does not want to pay for another ticket. I have always maintained that speeding is dangerous, and the facts back me up, but I will be happy to see him slow down regardless of the reason. If you happen to be riding in a car with him, feel free to remind him of his new resolution :)

So I survived my week alone at home, and my solo trip to Portland. It was indeed a bit more tiring having to attend to things like cleaning litter boxes, watering the garden, and being in charge of making all my own meals, while still trying to go to work full-time. However, I managed, and it gave me a bit of a confidence boost to know that I can be that independent. My trip to Portland was also extremely smooth, thanks in large part to little bits of help from several friends. I had a wonderful time visiting friends that I hadn't seen in years – I saw some people that I hadn't seen for 10 years, including the groom – and catching up with others I had seen more recently but still don't get to see as often as I would like. I realized after I got home that I had neglected to take even a single picture, so I will have to instead take special care to commit these episodes to memory.

Next Saturday Jeff and I leave for a 10 day trip to Eugene for my sister's wedding. Besides wedding-related events, my plans mostly center around making sure I get a good dose of Prince Puckler's ice cream and some good Thai food. I think I probably will not be disappointed.

With all the busyness of summer trips and the like, certain aspects of my rehab have not been as prominent in my day to day. In some ways I am constantly working on my rehab, and in other ways certain things have plateaued. One thing I recently realized is that I have started to settle into habits with certain things, like how I get in and out of a chair. While what I'm doing is functional, it isn't exactly normal, and it is making me think of something one of my physical therapists said more than six months ago: once something gets easy enough (not easy, just easy enough), it's time to move on to the next level. It has been nice that certain things are getting easier, but if I truly want to improve, I'll have to make those things harder again.

It doesn't work to do hard things all the time, but to build in some more challenging activities where I can handle them is a good idea– like trying to be a little bit faster sometimes with how I get in and out of a chair. I keep being reminded of the developmental psychology concept of the "zone of proximal development." This refers to the fact that there are certain things at certain ages/stages that kids are more ready to learn than others; that if you try to teach a one- or two-year-old to read it will simply do no good (and depending on your approach, may actually do harm), but if you provide opportunities for learning to read to a four- or five-year-old, the child will readily learn. Even a few months ago if I had tried to alter my patterns for activities like sitting down and standing up, it probably would have been not only counterproductive but also dangerous. But I think that I've entered a new "zone," and now while Jeff is practicing slowing down, it's time for me to practice speeding up!

Five things

Things have been busy! A few of the most notable things that have happened recently, are happening now, or are about to happen:

1. My mom came to visit. It was fun to show her where we live now – the house, the city, and the province. We did lots of things including making pancakes with farmers market haskaps, touring a local orchard, swimming in a local lake (I waded in about halfway up my calves), and going for a bike ride.

2. I got a new bike. A woman was looking for a good home for a recumbent bike, and gave it to me. I had been using my bike with the stabilizer wheels attached, but it was really challenging and a little bit more like therapy than leisure. At first I felt guilty about taking the recumbent bike, since I already had a bike to ride, but then Jeff reminded me that not everything has to be therapy, and riding the recumbent bike is really fun. I can go much faster and can go for longer without getting tired because it is not challenging my balance. Also, the stabilizer wheels may not have been attached 100% correctly – my mom tried riding my bike with the stabilizer wheels, and deemed it unrideable. Jeff had previously noted that it was extremely difficult to ride with the stabilizer wheels. We believe the problem may be that the wheels were not perfectly parallel to the back wheel, making it veer to the right all the time. We have removed the stabilizer wheels, and will try reattaching them again, and I may find that my balance wasn't so bad as I thought it was, and that it wasn't me it was the bike. For now, I'm having a great time on the recumbent.

3. I went swimming at the pool. I was pretty scared to get in the water, but it turned out that being in the water was actually really easy. I can keep myself afloat, and can do all kinds of things in the water that I can't do on land, like jump up and down. Unfortunately we went when the pool was exclusively filled with lap swimmers (even though it was an open swim time) so I felt a little silly trying to see whether I could jump on 1 foot (I can).

4. Today Jeff left to go visit friends and family in Ontario, and I am home alone for several days for the first time in over a year. So far so good! But this means that I have to do for myself all the things that Jeff usually does for me, so I am likely to be a bit tired and doing things the minimalist way for the next week.

5. On Friday I will get on a plane to head to a friend's wedding all by myself – my first time traveling alone in quite some time. I have help planned for getting to the airport, will be helped by airline staff when I make my connection, and will be picked up by a friend when I arrive at my destination. Everything is all planned out, but I can't help feeling like I will need a bit of good luck to make this trip go smoothly.

Also, since I will be away next weekend there will probably not be another blog post for two weeks. So if you don't hear anything from me, it is not because I had some horrible accident while being home alone, or because things went horribly awry on my solo trip. I'm just busy having a fun and busy summer!

Camping and Canada Day

Today is Canada Day, which means that I am not at work, and will instead be barbecuing this evening. It is also one of the biggest camping weekends of the summer. A couple of weeks ago Jeff and I decided that we would like to go camping, and made plans to go last weekend, but decided to stay home after there were thunderstorms predicted all weekend. We tried to get a campsite for this weekend instead, but there were literally none available through the province's campsite reservation system, so we went midweek last week instead. Flexibility like that is one of the perks of academia, especially in the summer when campus is fairly dead.

We headed to Lake Diefenbaker which is about a two-hour drive northwest of Regina, though it took us a bit longer because we took a wrong turn (or rather, failed to take a left turn).

Views of the Qu'Appelle Valley, which we would have missed if we had stayed on the correct road

We eventually made it to our campsite,which was nestled in natural stands of aspen and birch trees. 

We had to buy a new tent, because the one we already had is a tiny two-person backpacking tent, which is too hard for me to get in and out of. This one seemed massive by comparison, but getting in and out of it wound up being harder than I thought it would be, and so was a source of some serious exercise throughout our trip.

The Franklin's Ground Squirrel was our constant companion at our campsite, with as many as three at a time chasing each other around camp at meal times

Despite already being tired, I decided to attempt a new feat on this trip, so after our first night in the tent, we went for a short hike. It was a 1.5 mile loop, fairly flat (though there were some small hills, and the terrain was definitely rougher than the floors and paved sidewalks I'm used to), and would be considered a very "easy" hike. I have been taking walks with Jeff where I use him as my support – no crutches or canes – and we decided to try the trail using this strategy. Although I was literally falling over by the end, I was able to finish. We took a couple of rest breaks, and all in all it took about an hour and a half – an average speed of about one mile per hour, so quite slow even by slow hiking standards, but definite progress from where I was even a month ago.

Early on along the trail

 We are learning about the different ecosystems within Saskatchewan. The particular area where we were is actually formed of sand dunes, and cacti grow there. I had no idea – I thought it was all just grassland here, but apparently there are many very diverse areas within the province.

Jeff with a prickly pear cactus

Running down a sand dune

Later that afternoon we went to the lake, where Jeff swam and I sat in a camp chair on the sandy beach.

The water was not very deep – about 40 feet out, and still barely waist deep – but the sky is enormous here

Sunset over the lake on our last night

 Overall, camping and hiking were difficult, and I was limited in what I could do, but this was definitely a successful experiment!

Downhill both ways

I have been working on improving my ability to ride my bike. Yesterday I went for a ride of about 3 miles, with an average speed of around 6 mi./h, and this means that now I can ride my bike approximately the same speed that Jeff runs when he is running slow. It is still tiring but is getting easier.

On one of my first longer rides (about 2 1/2 miles) I had the sense that on the way out to my turnaround point I was going slightly downhill most of the way. Then I turned around, and to my surprise, I still had the sense that I was going slightly downhill. That is how flat it is here–I am so used to being in places where even apparently "flat" areas slope ever so slightly uphill or downhill, that when confronted with true flatness my brain doesn't know quite how to categorize it. It's like I'm having to experientially learn a new concept, even though cognitively I've always known that such places exist.

On the flip side to that, in physical therapy I am trying to work on recovering abilities that my brain has an experiential program for, but which cognitively seem impossible right now. I mentioned in my last post that I am hoping I may be able eventually to run again. Running is an ability that from an early age I felt like I was built for. I remember in second grade being given a stopwatch by my parents, and using it to time myself and my friends racing across the playground. I remember soccer practices in junior high where the coach would say "we're going to run until Bridget gets tired," and the groans from my teammates who knew that we would be running for a long time. That program is deep. But right now, pre-requisite abilities to run the program are corrupted – mainly balance and coordination.

So when my physical therapist suggested that we get a baseline for where I am now, so that we might be able to see progress on this goal, I didn't expect it would go very well– if I'm not even comfortable walking, then running (which essentially involves leaping from one foot to the other very quickly, seriously relying on both balance and coordination) is a long way off .

Last Tuesday I was hooked into a harness (that kept me from falling and held some of my body weight using a contraption mounted to the ceiling), and put on the treadmill. My expectation was that I wouldn't be able to react fast enough, and would end up getting dragged backwards by the treadmill, but I was okay with that, because then anything better than that would be a mark of measurable progress. I tried hard to just let my body do what it could do, and not interfere by thinking about it too much. This was the result:

Not exactly elegant, but way better than either I or my physical therapist thought I would do. So with the harness I was not forced to balance, but the quick motion involved in switching from left to right and back again was still required. The less I thought about it, the better I was able to do it. This means that the old program for running is probably still there. What that means in terms of function is unclear – I still will not be able to run again if I can't deal with those balance issues– but I can say that it was fun and I look forward to trying it more in the future!

One year later

June 13 marked my one year surgery anniversary. This milestone comes with mixed emotions – I have improved SO MUCH from where I was immediately post surgery, but I am still much worse off than I was immediately pre-surgery. I still question whether surgery was the right choice, but there is no way to know that. At this point there is no choice but the choice I made, no outcome but the reality that is.

I marked this anniversary by focusing on how far I've come in the past year, and by doing a list of things that I was desperate to do but could not in the weeks (and in some cases months) following surgery. These are mostly things I do every day anyway, but for the occasion I made sure to pay special attention to the fact that I can do them now.  My list included: use the bathroom and take a shower without any assistance (other than one grab bar in the shower), swallow food (in particular, we went out for ice cream), write with a pen and paper, see the world in 3-D (both eyes, no double vision), sit and even stand without assistance, walk around the house with no assistance, walk around the block holding Jeff's hand (no other walking aids, but Jeff provides more stability than any forearm crutches or canes), and not only ride in a car (without getting sick from vertigo and vision problems), but actually do the driving. I still have a lot of recovering to do, but it is good to recognize how much I have recovered already, and to be hopeful about prospects for future improvement!

Jeff ordered a large ice cream, dipped in chocolate, and he didn't really think much of it when they said they could only dip the first scoop-- until they came back with this monstrosity

It is often a lot more evident to me what my deficits are than it is to other people these days. One year ago, I think the reverse was true – I have very little memory of my time in the ICU, and it wasn't until going back and reading some of Jeff's blog posts from that time that I realized just how bad off I really was. Jeff was very positive in all his posts about how I was doing, but we were dealing with some serious stuff. I knew that they were keeping me in the ICU longer than they said they would, and I knew I was getting a lot of CT scans, but somehow I didn't quite put it together that enlarged ventricles was a potentially serious complication of surgery. I also didn't get it that the reason they were giving me IV saline was related to getting my ventricles to drain back to normal. I was sleeping so much at that time, that there was an awful lot I was missing. In Jeff's post from exactly one year ago, he mentions that they took out my catheter that that meant getting up to pee a LOT. At that time, I really had no idea why I seemed to have to pee (a lot) every hour, I just knew it was extremely exhausting and very annoying, given that I had such limited mobility – I couldn't even sit up, or even roll over or adjust my position in bed. There were a lot of things I didn't question – I put a lot of trust into my medical team, and into decisions that Jeff was making based on their advice.

So, one year ago today I was feeling pretty miserable in some ways, but relatively oblivious to just how much things had not gone the way that everyone expected they would. I was still thinking that I was on track toward a relatively quick recovery, and that instead of a week or so in the hospital, I might be there 10 days. I think it's good that I didn't grasp the full weight of my situation while I was in such a weakened state. I think it would have been very difficult for me to take. I have my good days and my bad days now, but mostly good, and making progress always helps. Here is a video taken at my last PT session, showing some recent progress:

I can only walk with a cane for a short distance before getting very tired – imagine what it might feel like to have the right side of your body injected with Novocain, have the left side of your body responding like a mis-calibrated joystick or mouse so that it only does what you want it to some of the time, then spin really really fast on a merry-go-round – that's basically what it feels like all the time for me, so walking is a bit tiring :-) But I am continuing to improve, and am fairly confident that eventually I will be walking without any walking aids. My goal for the next year is to get comfortable with walking, and to move on to running. There is no way to tell whether this is realistic, but I will never find out if I don't try, so you can bet that I will be trying my hardest!