Sick kid

Ellie isn't feeling well today. It seems like an ear infection may have been coming on for the last couple of days. I stayed home with her. She seems better now, but when her ibuprofen wears off, she'll probably feel worse again. At the moment she is quietly watching movies.

Taking stock

Lately it seems that Linda and I have been measuring our progress, noting how much easier some things are now than they had been. For several days I had been intending to summarize some of the progress she has made since coming home.

Just as a reminder, the criterion that I set for coming home was that we could go through the day without me needing to lift Linda to do transfers. I'd been hurt several times when we were at Rusk, even when I was careful to do all of her transfers carefully. I didn't want to get hurt at home where I didn't have help. Looking back, I realize we were just barely ready to come home. I suppose you could say that the therapists did their job right--they got us home exactly when we could cope with it.

It was very important that Linda could do the transfers she needed. She could get from the wheelchair to bed or a chair. She could walk enough to get in and out of the bathroom with her walker (where the wheelchair could not go). And she could go up and down two steps to get in and out of the house. For several of these, she needed me to spot her for falls, but she could do them on her own.

When we went places, that meant that she brought her wheelchair to the back door (where we kept her walker). She used the walker down the steps and I brought the wheelchair down to her. She transferred to the car and I stowed the chair the trunk. We parked where there were ramps so we didn't have to bump the wheelchair over curbs more than necessary.

My day started with her in the morning, because I helped her with her bath. It ended at night when I would stretch her legs and put splints on her hands and feet (to maintain her flexibility). It was exhausting for me because I had to get up before her and go to bed after her every day.

Over time, the wheelchair was inconvenient and her walking improved so that she could use the walker around the house. Then as we were packing to move, there wasn't even room for the walker in places and Linda started to use just two canes more and more. Now, I don't know how she managed that without falling (more than she did). She wasn't really ready to walk with so little assistance. She just did it because there just wasn't room for her equipment.

That really showed when we moved to the new house. She had many falls right after we moved, and I persuaded her to use her walker more.

At the new house, she started picking up more of the chores around the house, although even now these require her wheelchair. She now often puts dishes away after the dishwasher has run, or does some laundry (including folding). I still put away a lot of the clothes because it means reaching up to shelves or going into Ellie's room which is hard to navigate.

When we first came home, Linda could not be alone. After a while, I could go for short errands, and we would arrange things before I left so she would not be required to walk (and risk a fall) or even do too many transfers (she often fell then too). Now she can be self-sufficient for hours at a time. She has returned to using her two canes for much of her walking around the house, although some tasks require the stability of her walker or wheelchair still for safety.

We almost never need the wheelchair out, although some of that is avoidance of the hardest tasks. Linda does not often go to the grocery store, for example. She would still need her wheelchair to go that kind of distance. And a few times we really should have had it with us when we didn't (like when we went to the homecoming parade). But that is becoming less and less.

I still stretch her legs at night, but the only splint that she wears now is a small one on her left finger. In a fit of anger she threw it on the floor a few days ago, but last night she asked me to retrieve it because her finger was getting tight at night, so she still needs it. She almost always gets up to shower before me in the morning on her own, and is generally able to shower standing. For convenience, I usually lay her clothes out for her in the bathroom. Walking barefoot is still a challenge, so she likes to get dressed and have her shoes on right away.

She gets her own lunch when I am at work.

People actually understand her speech pretty well now. It is substantially better than when we came home, and even much better than when fall semester started, for all that the insurance company told us months before that Linda was "cured" or more precisely that her therapy was no longer necessary.

Lucky is a matter of perspective

Linda has come a long way. There's no question about that. She's been lucky and unlucky. She could have died. She could have remained locked in, wishing she died. But there could have been any number of ways it could have been better. There's nothing particularly lucky about having a stroke, even one where the recovery has been very good.

Just consider the speech thing. Her friends talk to her and think nothing of her speech impediment. It doesn't matter to them, it's just part of the stroke. But it has to make a bad impression on strangers. If you didn't know about Linda personally, wouldn't you first expect she was retarded or something? I think so, even if you soon realized your error.

So there are luck and unlucky parts of the whole thing.