June 2013 Archives

Here's the thing about having a stroke. Or at least, here's the thing for me about having this particular stroke.

Me pre-stroke is not me post-stroke.

Me immediately post-stroke is not me now.

I don't know how much of that is medication. I am on some intense medications and they definitely affect mood and temperament, and that's got to be doing something.

But also, I knew as soon as the stroke happened exactly what was happening and, knowing people who have been through stroke recovery and having spent a fair amount of time researching neuroscience and neuroplasticity for my architecture thesis, I knew just how bad it could get.

So when it didn't get that bad, things changed for me. Imagine having a really bad couple of months: your beloved dog has cancer that has come back, you have a job you love but it is in a field that is currently notoriously unstable, etc. I won't bore you with my drama. Then a piece of amazingly good luck lands on you, you are saved from incapacity and death and the ruination of several dreams. The very worst thing doesn't happen; the very best thing does.

Things change.

In addition, I don't know why, but in the hospital I had what can only be described as the most amazing lucid dreams. They went on for HOURS, which has got to mean I wasn't getting very good sleep or something, but for me, the experience was awesome. I got to do whatever I wanted in a dreamscape where everything went the way I thought it should (because these were lucid dreams, not regular dreams). I designed and sewed amazing quilts, I did lifecasting without anybody's hair getting stuck anywhere (this is, by the way, impossible, so don't think talent or practise will help; it will just make your subjects balder). I made some amazing furniture without screwing up the cutting or nailing at all.

I've been thinking about those dreams this last week. In a way I think they were about me telling myself stories -- the events in the dream were entirely in my control as opposed to normal dreams where you're stuck with whatever filing your unconscious mind needs to get done. But in a way they were about outrageous luck, and what I would do if I had it.

So I'm thankful for how lucky I was, to be in the right place at the right time, to have a truly talented neurologist, a smart husband.

Recovery is not easy. My days at work are simply exhausting. Physical therapy is actual work, and I sometimes spend half a day just going from one doctor's office to another. The stroke has raised problems with how other medical issues are being dealt with (I can't take any more drugs that have increased risk of stroke, or at least I should not), so I'm seeing specialists about those as well.

But through it all I keep thinking about walking shakily through the Critical Care ward at Alameda Hospital, with beds full of people who may never walk again, who are relearning how to swallow so they can stop being tube fed. I think of people I know who are permanently disabled from strokes, who can never again do some of the things that made them the happiest.

I did lose things in the stroke. But I got something, too.

I know, I know, these are getting long. So is the recovery, in which I discover things that I lost.

Vision

The most obvious thing to me right now is that my vision has gone all blurry.

I've always had better than 20/20 vision. When I was a teenager we discovered that the reason I was having trouble reading was that I have double vision. Since then several ophthalmologists have told me I have basically a synchro problem so instead of my brain turning the two images from my eyes into one 3D image, I just get two overlapping images. It happens to a lot of people, and is generally not a problem. There's a surgery to treat it but I have an intense phobia about knives near eyes.

And as it turns out, I usually only look through one eye (mostly my left, if you care). When I get tired I switch eyes and let the other eye do some work. When I get really tired, like that night I stayed up all night in college and read War and Peace because I needed to read it in pretty much one sitting to keep all the characters straight, that stops working and I see two images overlapping and it's very hard to read or do detail work.

Well.

That was me pre-stroke. Now I'm taking a drug, gabapentin, that makes your vision blurry. And since everything is blurry my eyes are tired ALL THE TIME. So hello blurry double vision.

I tried wearing Noel's "reading" glasses -- they're 5x magnifying glasses that he uses for doing detailed electronics and music work -- but they just made everything LARGE, doubled, and blurry.

I do a lot of reading. On a normal day I will spent a couple hours reading at a minimum: I read on the bus (or knit, but lately read), I read at lunch, I read on the bus on the way home. I read for a couple hours every night. On intense days I read all day as part of my work, reviewing specifications or product submittals. I take a break from thinking about hard problems by reading a short thing or two to change my focus for a minute. Reading is incredibly important to me. I find it difficult to be in a place where I have nothing to read. I will read tea packets or warranty information cards if nothing else is available.

So not a lot of reading has been happening, because it is exhausting. (On the other hand, I switched back to knitting on the bus, more on that in a second.)

The good news is that when you get off the gabapentin, you get your vision back (or so I have been told).

Balance

I feel a little dizzy when I walk.

Oh, that's not too bad, but there are times when it is unbearable. When I first wake up, my blood pressure is very low and the room whirls around me. Sitting up is difficult, and walking means putting a hand on the wall.

Taking the bus is a skill. I've gotten good at it, but I try to be awake and have eaten before doing it, because the higher I can get my blood pressure, the easier it is.

There is a weird feeling to knowing that most people who have a stroke spend their time trying to get their blood pressure lower, while I spend mine trying to get it higher.

Handwriting

This last week I was doing more hand writing at work -- I needed to make notes on some weather data I was analyzing -- and I noticed I'd lost some of my handwriting ability.

Now, I have excellent handwriting. I think my generation was the last to have handwriting lessons in school (until the fifth grade). I also went to architecture school and learned lettering, while everybody told me I would never use it.

In fact, I use it all the time. We do a lot of hand lettering on hand drawings in my office, because we are usually not the designer of record. And last week I noticed that lettering neatly took more time and mental effort, so I added it to the list of things I practise regularly.

Most frustrating is that when I go to jot down a quick note, my handwriting is untidy. And I'm keeping a handwritten list of medications I took and when (mostly for Noel's benefit, if he needs to tell anybody), so I see this all the time. It's getting better, and it's still better than the handwriting of most people I know, but it's surprising.

Typing

You're probably thinking, Shut up, look at all this typing you have done.

But in fact my typing speed and accuracy has dropped significantly, from 125 words per minute to probably 50. I don't take dictation, and I don't do transcriptions, so this is not a huge problem. I'm relying on spellcheck and autocorrect more than I used to. This is compounded by the blurry vision, of course.

Basically, my stroke has made some of my texts HI-larious.

It's a little frustrating. You get used to being able to just do something, to nail it every time, and suddenly it's gone. When it's something super obvious like walking, well, OK, that's what happens. But suddenly not being able to properly type out a text is shocking and surprising, somehow.

It's all about practise, and I work on that. I try to do a lot of typing every day, in small batches at least when I'm not at work, because doing more does help. I haven't tested my speed yet -- I'll wait until I can see again -- but I feel like it's improving.

As with walking without dizziness, I have real doubts that I will ever be at 100 percent again.

Speech

Officially, I have no speech deficits. And really, you probably wouldn't notice them at all. But I find it harder to say some things, my tongue has trouble with the words. It feels heavy and awkward.

Again, it's the being able to just do something you learned long ago. I should sit down with my language tapes and try out every language I've ever learned; it'd be interesting to see if I can say certain sounds as easily any more. I'm not sure I'd know which I'd lost through time and which through stroke, though.

OK

You must understand, I still feel incredibly lucky. These losses are not as huge and incapacitating and what most people who have a stroke go through. I have tools to help me, and most of the changes are totally unnoticeable to others.

I've had some big triumphs in the last week. Yesterday I drove for the first time since the stroke, and did great. I felt uncomfortable, but I also feel like it's OK for me to drive and that really makes me feel more free. You have to drive to a lot of things here, and I was feeling bad about making Noel drive me everywhere.

I've started working more on the treadmill, which is great. I've only been walking but the physical therapist said I could try slow running as long as I didn't have balance problems.

This week I also change from in-home therapies to outpatient physical therapy. I'm hoping they can help me work more on my balance than we could at home. I also want to get some way to exercise my upper body when I'm not allowed to lift more than 10 pounds for six months.

Fun times.