Sweeties

Right after the stroke, I had to practice saying (and spelling) my children's names. At this point, I still confuse the two names, but probably not more than other parents who don't have aphasia. But just to simplify, when one of my kids has helped me, I usually just say,

"Thanks, Sweetie."

The problem is, my brain can't switch tracks easily, even now. So when I want to thank someone--anyone--I often can't stop from tacking on a "sweetie" after the end. The cashier at the pharmacy, my neighbor who is twenty years older than I, the UPS driver--they're all my sweeties, now.

What's in a Name

Many people are puzzled why I called blog "My Happy Stroke." Even I forget why I chose the name sometimes.

So I wrote About My Blog's Name, partly to remind myself of what I was feeling in the early days of my recovery.

You can click on the link above, or on the right-side column on the homepage, after My Stroke Story.

Mysteries of Stroke

I still have so many questions about the way my body works, post-stroke. Some are general, like why does cold make spasticity worse? Other are more specific to me, like what's the deal with my toes?

A lot of survivors have problems with toes curling under, making walking painful and making it easy to trip (see posts from Home After a Stroke, Up Stroke, Dean's Stroke Musings). In contrast, when I walk, my toes on my affected (right) side barely make contact with the floor (other than the big toe). My toes go up, as if I am trying avoid getting a splinter. 

Yet I do have a lot of spasticity everywhere, including in my feet. In some positions--often when I'm sitting up and putting on my socks, for instance--my toes often get all scrunched up, as you see in the photo on the right. (My unaffected side looks, well, normal and flat.)

I'm thankful that the position of my toes is not painful. It's also not causing me to trip. But I'm almost certain that it's affecting my gait for the worse.

When I ask different doctors some of these questions, I often get a shrug, literally or figuratively. Physical therapists are much better at answering these questions, but even PTs have been stumped about the toe issue.

But I still need answers to get better. Who will answer these questions?

Free At Last--Sort Of

I've started to tell people my good news: I passed my driving test in September.

"That's fantastic!" people say. "You must feel so free now!"

I'm very proud. It's a big milestone. But it's not as liberating as I wish.

It's partly that I'm still getting my confidence back as a driver. To feel comfortable, I have to plan the route ahead of time, mentally going through busy intersections, rotaries, and tricky parking lots. It's partly that the most simple errands are a lot more physical work now--from getting my coat zipped up to wrangling a shopping cart with my uneven strength. And it's also partly that I tire very easily, so I only drive around my town or the next one, for now.

But the biggest reason is that it's the first time that I've felt the weight of total responsibility since the stroke. Although I have responsibility for my kids when I'm alone with them, they are old enough that I don't have to watch them like a hawk. Driving is different. I've spent a lot of time in a rehab hospital over these years. I've seen the results of serious car accidents, and the wreckage of people's lives.

Childhood, Revisited

The last time I walked to school with the kids with any regularity, my first-grader son would trudge along, and he often wanted to hold hands--even though I was pushing a stroller with my daughter in it, even though I was constantly urging him to pick up the pace.

I've started to walk the kids to school in the morning again, about once a week. My son, now 10 years old, dashes out the door as soon as he sees the neighborhood pack of boys walking up the street. I don't see him until after school. My daughter hesitates as I come down our front steps, then she hurries up the road to walk with her friend. She does want me to wait in line at school with her, so right before she gets to the school, she stops and waits, until she sees me and my cane.

I remember walking to school many years ago with my two sisters. I was the youngest. Every four or five steps, I would have to run to catch up. Sometimes I can hear my own childish voice:

"Wait, wait!" I say with panic in my voice, "I can't keep up!"

Those Uncomfortable Feelings

A friend's mother had a stroke about nine months ago, and I've been getting updates about her for a while. I saw my friend a few weeks ago, and she mentioned that her mother has recently having gastrointestinal problems. My friend didn't go into details.

It brought back uncomfortable memories. After the stroke it could have been so much worse, but still: I have felt sick to my stomach so many days since.

I had one real GI crisis about four or five months after the stroke, when I was directed to take iron supplements, and Neal and I both misunderstood the directions. It took me about a week to figure out why I felt so awful: I was taking about 3 or 4 times the correct dosage. I had alternating bouts of diarrhea and constipation, and constant nausea for about 6 weeks. I lost more weight, which wasn't a good thing.

The whole stroke recovery has reminded me sometimes of being pregnant: a few periods of crisis, then this off-and-on stuff.  The threat of nausea is always there, even though I almost never get truly sick. My appetite has been very unpredictable. I've often felt like I have a low-grade stomach bug for more than two years.

In general, I'm feeling so much better these days. On bad days, though, I remind myself: I can deal with this feeling--the feeling that my body is a bit of a stranger to me. I'm getting to know this new version of myself. It's like a very, very long gestation. 

Three Blogs

I've never been a prolific writer, but in the summer and early fall--when my kids' routines are changing constantly-- my output slows to a crawl.

But I have been reading other people's blogs (and tweets).  Here are three blogs/websites that I've been enjoying for a slightly different angle on stroke recovery:

Finding Strength To Stand Again : Prosopagnosia (face blindness)

Blogger Tara Fall started to have seizures in her teens. At age 27, she had brain surgery to try to stop the seizures, but suffered a stroke in surgery. When she woke up, she couldn’t recognize any faces at all, including her own. Tara’s blog is an insightful look at an invisible disorder, prosopagnosia. She also talks about her life as a stroke survivor and a person with epilepsy.


Girl With The Cane : Disability Advocacy

Sometimes I’m so involved with my own recovery that I forget how many people are affected by other disabilities. Sarah Levis is a stroke survivor, but she addresses a broad range of disabilities in her writing. Her lively and informative blog is a great way to keep up with the disability community in general.

 Stroke XYZ : Young(-ish) Stroke Survivors

This new website/blog/e-community is geared towards younger (loosely defined) stroke survivors and their caregivers, families, and friends. Isolation--physical and emotional--is a huge problem for stroke survivors and caregivers of any age, so I'm always grateful for any new voices/communities. I'm also grateful for new voices talking about aphasia: Kelsae, the blog author and caregiver to her husband Mike, has blogged about aphasia and the ways that aphasia affects relationships.

 Happy reading!