I'm celebrating my two week anniversary today, and a lot of you are asking how I'm doing. So it seems like a good time to give an update on my progress.
The good:
Let's start with the positive. I am feeling so much better than I thought I would at this point in the game, and every day comes with new progress.
- I can be left alone.
- I can walk unassisted as long as I'm going straight and am in an uncrowded place. I have walked all over this neighborhood and through the park with no problem at all.
- I can open my jaw all the way now and no longer have pain chewing. Over and over again I have proven there is almost nothing I can't eat.
- I can sleep through a whole night without getting up for meds.
- Talking on the phone has gotten easier as long as there is no other background noise and my headache isn't too bad.
- I can have visitors.
- I don't sleep all day anymore.
- I can read.
- I have gone up and down the stairs in my apartment (slowly, but without incident). This totally freaked my mother out.
- The incision area on my stomach doesn't hurt at all anymore - it's totally fine.
- My headaches are less intense and less constant.
- I am completely out of the Cerebro-Spinal Fluid leak danger zone.
The bad:Not everything is great yet. In fact, the idea that I can feel so much better, but still have such a long way to go is extremely frustrating. The remaining issues are the ones that will simply take time, and this is where my patience is being challenged.
- The balance thing is the biggest problem I have right now. This is a hard one to describe. The best word I've come up with to describe how my head feels is "swimmy," although I know this is not very illuminating. If you've ever seen one of those dome-shaped marine compasses that floats in liquid, that's kind of how my head feels. I don't instantly have my bearing when I move my head. It takes a minute for it to settle in before I know "where I am". This has resulted in a Frankenstein-like gate as I have to keep my head very still and straight while I walk. It freaks people out. Also, if I do move my head too quickly as I'm walking (or even sometimes while I'm standing still), then I lose my balance. I haven't actually fallen yet, but I've had a few stumbles.
- Because the balance thing is an issue, I have trouble in public places. You don't realize how much you are constantly readjusting your position in response to unforseen stimulus. If I'm walking on the sidewalk and someone turns the corner into my path, I am in trouble. If someone walks too close to me, I have a real tough time getting out of their way or even adjusting to maintain the normal "personal space" bubble as one constantly does without even realizing it. This will just take time.
- Although it's getting much better, I still hear noises inside my head. (So what do I want - a medal? Now I am now just like every other New Yorker!)
- The sensory issues are very bizarre. I have a lot of trouble with multiple noise inputs. Having the dishwasher and the TV on at the same time is just not doable. I can't have a conversation if there is background noise. And something I didn't expect - even the other four senses can give me overload trouble. Sunlight, traffic noise and wind against my face all at the same time can be enough to make my head throb :(
- Anyone who has had surgery of any kind will relate to this one: the nerve endings all around the surgical site are damaged. They will regenerate over the next 12 weeks, but in the meantime, one half of my head feels "dead". It's an uncomfortable and unsettling sensation to say the least.
- Unfortunately, it's not completely dead, because I also still have some swelling, pain and sensitivity on that side. (I mean, what do I expect? They sawed through my skull.)
- Believe it or not, my right arm is still purple and bruised from some of my IVs, so I don't have full mobility of my right hand yet. The left one is fine.
- The deafness sucks. I don't know what else to say about this one. In the grand scheme of things that can go wrong, this is such a small problem. I know that. And I will get used to it over time. But right now it makes me feel handicapped and I'm bummed about it. I have friends battling much more serious maladies, so it feels like a trivial thing to complain about. My friend's mother said the smartest thing to me about this when I was talking about this possibility before my surgery. I said the same thing - oh, this is such a small thing. People deal with much worse. And she basically said, "Oh, blah, blah, blah. When it's your hang nail, it really hurts." That's perfect.
The ugly:My hair has truly never looked worse. On one-side it is an out of control mullet ala Patrick Swayze in "Next of Kin". On the other side, it is like a cat with a bad skin disease. I have started blow-drying it recently, and I'm really not sure what my point is here. Like rearranging the deck chairs on the Titanic. Oh, and I got a pressure wound from the head dressing right smack on my forehead, so that looks really good too. (My bandages were too tight for the first 24 hours. So tight that I got wounds on my head that had to be treated like burns. Nothing like wrapping your head in a vice grip after brain surgery to soothe that headache away.)
I really am trying to be patient. I have to remind myself that only a little more than a week ago, it was so hard to move from a bed to a chair six inches away that I cried (not from pain, but just because I was scared at how hard it was). Now, if you saw me sitting here, you'd never even know I had brain surgery unless I told you (which I instantly would because I wouldn't want anyone to think this hair style was deliberate.)
So in sum, I'm doing GREAT. Much better than I have any right to at only two weeks out. I'm just not going to be instantly back to normal, and the rest will take time. From the nature of this blog, you can plainly see I have plenty of time.
Jonathan Rhys Meyers, star of Showtime's The Tudors, has entered a rehab facility.
