Santa Baby

Even though I wasn't in a high-risk group for stroke--I was healthy, walked a lot, normal blood pressure, comparatively young--I'm very aware now of risks of stroke in other people. Whenever I see someone very overweight, I worry for them. I want to tell them, "don't kid around! You don't want to go through what I've been through."

I'm probably overreacting. A few nights ago we were watching TV. Whenever I saw another rotund Santa in an ad, I thought: there's a stroke waiting to happen.

Broca's neighborhood

Many years ago, I lived in Paris. My friends and I would often congregate at another ex-pat friend's apartment, which was centrally located.

The apartment was on a street named rue Broca.

After the stroke, people explained to me that I had aphasia. But it wasn't until when my brother-in-law--who is a doctor, and a very kind one--showed me his Ipod with an app that had a diagram of the brain, where I saw a label:  Broca's region.

When I saw Broca's name, it was as if I saw an old friend again. Of course, in a different context.

Testing, testing

Today Neal and I went to a psychologist for testing as part of the process to apply for disability.

The woman at Social Security and the psychologist kept using the word "deficits." Usually I think of "deficits" in the context of budgets; I don't like the word when it's applied to me.

The doctor didn't have to search far for deficits: I couldn't say the year, although I explained that I could write it, and I did. The testing was very tiring, but it was interesting. It was the most thorough test of my memory since the stroke.

Although my pride was wounded, I think I'm a shoe-in for disability. 

Babes in the woods

These days L's favorite friends are two Beanie Babies called Chips and Nut. No, I meant to say, Chip and Nuts. Or are they Nut and Chips?

Several times a day I'm corrected by a testy five-year-old who is very particular about singular vs. plural. I'm certain that a malevolent person at the Beanie Babies company made up the names especially to torture a parent with apraxia.

Chip and Nuts: friend or foe?

Happy... Happy... Happy...

Today is my dad's birthday. Although we see each other at least two times a week, I want to phone him today to wish him birthday greetings.

Me: Hi Dad.
Dad: Hi Grace.
Me: Happy...  happy.. happy...

The word is sticking in my mouth, like a huge sneeze that can't quite come out. I know that "Thanksgiving" is the wrong greeting, but the word is blotting out any other words in my mind.

Dad: I know what you are trying to say.
Me: Happy Birthday!

Happy birthday to a giving, patient, loving dad.

Frustration is the mother of progress

Sometimes I'm too patient. But even I have my limits, like this week when I was face-to-face with a bowl of left-over Halloween candy. Alone.

I'm sure that my OT will be pleased that I can cut--especially candy wrappers--with scissors now with my right hand.

My Happy Stroke - Not

One of my doctors at MGH said right after the stroke, "in nine months, it will be a bad dream."

So it's been about nine months.

Even without the insomnia, the iron problems, the seizure, and other littler problems, I think the doctor was overly optimistic. I still have a good prognosis (I hope), but the time scale was way off.

It's like climbing a mountain, with a lot of false peaks. The more I feel like my old self, the more I realize how far I have to go.

Moving on

I hate good byes.

We're finally moving my therapy from Spaulding Boston to Spaulding Medford, which is closer for us.

On Thursday I had my last therapy at Boston. I cried. (My speech teachers have reassured me that one of the after-effects of a stroke often is some heightened emotional volatility; in turn I've reassured them that I was like this even before the stroke).

To Varsha, Rick, and Jenna, thank you. You are all so skilled, involved, and most of all, kind. I could go on about the ways you have helped me, but then I would start crying again.

Sequencing, part 2

Here's a scenario:

You have a runny nose. You locate a tissue. Then you blow your nose.

What do you think happens if you have some sequencing issues?

This time I won't include a photo.

Pep talk

Yesterday my father took me to the acupuncturist, Mr. Cheng.

Although my sister and father warned me that this person would be all business, he seemed very kind. Both times he ushered us to the office, motioned me to the exam table, and then said, "here's a chair for Daddy."

He examined my arm, and then he basically said, your recovery is up to you. Then he put a lot of needles in to me. Afterwards I confessed to my dad that some of the needles seemed a little too close to my spine. Fortunately, I didn't see most of them.

These days I've been having a really hard time, especially with sleep issues. But a gentle reminder, delivered with sympathy, helps me: my recovery is up to me. And of course, with a lot of support from family, friends, and therapists.

Methodist Episcopal, part 2

On last Monday, I  had an appointment at the neurologist. She seemed satisfied with my progress, although it's disheartening for me. My strength took a backward step since the seizure.

I had to do the usual neurological tests. In one of the tests, I'm supposed to close my eyes, put my right hand straight out, and then try to put my right hand on my nose.

When I opened my eyes, my right hand was about to crash with my left shoulder.

I hate this test. It's one thing to lose your keys. But it's another thing altogether to lose your hand--even for a few minutes. It's profoundly embarrassing.

At least, I did better on an another test, an apraxia test: I could say "Methodist Episcopal," even if it wasn't flawless. Maybe I'll switch denominations.

The walk

I did it.

I walked A home from school. I'm totally exhausted.

I was worried that A would be embarrassed by my cane, but he had his sweet smile when he saw me. So sweet.

Cranio-what?

One of the specialists we saw last week was looking over the notes about my stroke and said, "I see you had a craniotomy."

Craniotomy?

I know that I had brain surgery, but I didn't realize that it's called a craniotomy. The image that comes to mind for me is a slightly unbalanced Victorian surgeon, indulging his curiosity by drilling holes willy-nilly in his patient's skull (apologies to the fabulous Dr. Tierney).

I'm sure this procedure has come a long way since the Victorian times, especially at MGH. Still, I'm glad that I wasn't awake during the operation.

Seizure

Two weeks ago I had a seizure.

When I came to, I first thought that the nightmare happened again: another stroke. Fortunately, it was only a blip. But the anti-seizure meds have been slowing me down, and I'm still not back to normal.

Now our plans are up in the air. We thought that I could handle caring for the kids, but we're not so sure now. We think A could handle calling 911 if I had another seizure, but it's a lot to ask a 8-year-old.

Goodbye, Urvashi

Torturer. Slave-driver. These are some of names I call my physical therapist, Urvashi. But actually, she's been great. She works me hard but always makes me laugh.

So I'm a little sad that Thursday I finished with PT.  I'm also worried: I still have a lop-sided gait; a ten-minute walk exhausts me; and my knee is very, very wobbly. But Urvashi says that I'm much stronger, and I can do most of the exercises by myself. She also said that my gait will improve as my sensation returns, and maybe I will need more PT down the road.

I will miss her.

R-R-R-Rip

I like Spaulding, and I have great therapists. But the highlight of my trip is going to the bathroom.

Specifically, using the paper towel dispenser.

Until about three weeks ago, I didn't have enough strength or coordination in my right hand to rip off the paper towels. Now I can finally do it. It's so satisfying.

R-R-R-Rip!

Stroke reunion

At Spaulding I went to a  "Stroke Reunion" on Sunday with my mom. I met some young-ish stroke survivors, including a woman who had kids about the same age as my kids. It was strange to listen to other aphasic people.

One of the speakers--he was a stroke survivor--called us "our Tribe."  I like that. Calling us  "our Tribe" has a  mystique,  like a secret handshake. It's not far from the truth, if we can shake a hand at all. (Neal also suggested the term "stroke-empowered woman.")

In the news, there was an obit for the actress and stroke survivor Patricia Neal on Sunday in the NYTimes. There was a great quote:

"When Ms. Neal could not understand a Beatrix Potter book she was reading to her son, her husband told her not to mind because The Tale of Pigling Bland was 'Potter’s toughest book.'" 

Indeed.

Still not quite ready for prime time

It's been six months since my stroke.

Last week I added two accomplishments: tying my shoe laces, and hugging Neal--with both my arms.

But I wish that my progress could be faster.

This evening, for example,  I had some sequencing problems. Here's a piece of  pie that I served myself with ice cream:

Note to self: microwave the pie then serve the ice cream. 

(Thanks to Brain Injury X-Posed: The Survivor's View for inspiration) .

Methodist Episcopal

Last Sunday I went to church. I've been to church about 3 times since the stroke. Last time I realized that they're still praying for me every Sunday, so I asked them to remove me from the list. But another parishioner suggested that we should do a prayer of thanksgiving for my recovery, so we did that on Sunday.

I'm relieved I'm off the list so that I won't hog all the prayers. And yet,
I think I'm only about half-way recovered. Is there a prayer continuum for someone like myself? Sort of a prayer backup plan?

Let me out, let me out!

I really miss reading aloud to my kids. A lot.

I do try to read for L, since she's not too picky. But her older brother is too impatient to listen to my halting diction.

But sometimes, even L starts to be impatient with my aphasia. Last week she wanted me to read The Three Little Pigs, but it's hard to be convincing when the evil wolf sounds like this:

me:"Little Pig, Little Pig, let me out!"
L:"...you mean, Let me in."
me:"Or I will puff and I will puff and and I will puff!"
L: "...you mean, Or I will huff and I will puff or I will blow your house down!"
me:"And then I will eat you!"
L:"...you mean, I will eat you up!"

Of course, L has her own speech issues, but that's another story...

Summer reading

I've been reading a good book. It's a slightly trashy read, but very suspenseful. But the only problem is, I can't say it. I mean, I really can't say it.

I can write it: The Da Vinci Code.

The first two words are apparently too close phonetically, because I can say 'the,' or 'Da,'but not 'The Da'. When I try, it sounds like 'The (--a pause--) Vinci Code' (then a expletive when I've failed to say it, again.)

Self knowledge

This morning I was combing my hair, and I realized: I've been combing it on the wrong side for five months.

Of course, for a while I didn't have hair on the left side, just a big scar with peach fuzz. Still, I can't believe that I took so long to figure it out.

Five months

I went to the basement and put the laundry in to the dryer for the first time in five months. I don't know if I should rejoice--or not.

My sisters

My sisters are very good to me.

My sister Deborah was visiting over the weekend, and cooked me (and the crew) a delicious steak. This last semester she cooked several meals for me, actually, in between jetting to Haiti, Jamaica, etc for research and her home base in NC. And she always remembers to make hollandaise sauce for me.

My sister Cindy has been fantastic, too, in the whole ordeal. Some of the things she has helped me during the last five months: arranging a haircut (several, actually); flossing my teeth in the hospital (I tried to not bite!); hiring great helpers; playing "20 questions" when I couldn't find the words; the list goes on...

One shoe off, one shoe on

Yesterday when I was waking up from a nap, I could feel my left foot was bare, but I was sure that I forgot to take my right sock off. When I sat up, my right foot was in fact bare. I had a nagging sense of disappointment all day that I can't still feel my right leg (and foot).

I will eat my kids

One of the weird problems about aphasia is I'm always saying things that I didn't mean to. For instance:

"I will eat my kids."
"I command you" (Said to Neal. Of course, he could say that I said this even before aphasia.)
"How are your kids?" (Said to Mark, my dear cousin who has no kids.)

And of course, "This is my mom," when I'm introducing my dad. He's used to it.

The Oracle Speaks

My parents invited us to their block party yesterday. My parents' neighbors hadn't seen me since the stroke. Someone put a chair in the road for me, and a crowd begin to form in front me, as if the oracle was waiting to speak. But this oracle has aphasia! I did managed to say, "I am hungry."

Five Little Monkeys Jumping on the Bed...

I did it! I sang with L at bedtime. I mangled the lyrics, but L cut me some slack.

The song book that finally got L and I singing was her preschool song book, from two years ago. The lyrics were very (very!)familiar, and sometimes I could fudge it, if I need to.

Lindsay Wagner, eat your heart out

Yesterday Cindy and I went to the hospital to wire me up with a Holter moniter, in just in case there's something funny with my heart. Neal said I look like the Bionic Woman.

Two aphasiacs walked in to a bar...

Today dad and I went to an aphasia support group and picnic. As my therapist said, a group of aphasics can be really loud!

I go to speech therapy  for my aphasia 4x a week with my great teachers at Spaulding. For example, this post took me about an hour (even more) to complete.

Aphasia (pronounced /əˈfeɪʒə/ or pronounced /əˈfeɪziə/) is an acquired language disorder in which there is an impairment of any language modality. This may include difficulty in producing or comprehending spoken or written language. (From Wikipedia.)

Boston University has an Aphasia Resource Center that's been running for 20 years.