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!