I had a stoke at age 22.

It wasn’t totally unexpected. I had just come out open-brain surgery to treat a rare congenital condition called arteriovenous formation. The doctors had warned me that a stroke was possible, but it was more dangerous not to have the surgery than to have it.

The stroke weakened my left side to the point of near-paralysis. I knew nothing about strokes that large or how people recovered from one.  I’d never heard of things like the Chedoke-MacMaster Assessment Scale and emotional lability. It was the beginning of June, and I figured that I’d be able to return to work in July as I’d planned before I had the surgery.

Considering my level of knowledge about what I was facing, my treatment teams (first at the hospital where I had at my surgery done, then in two in-patient rehabilitation centres) might as well been composed of gods.  All I wanted was to get back to my life as I’d known it as quickly as possible, and the professionals working with me held the road map.  I trusted them, and was let down only a very few times. When I was, it was because I felt like communication between the me and the team had broken down.

If I could do it all again, knowing what I’d know now, I’d tell my treatment teams a couple of things over and over, including: “I’m a stroke survivor. Please, talk to me!”

Tell Me…What the Stroke Has Done to My Body

In the hospital, I was very aware that I had little movement in my left hand, arm and leg. I knew intellectually that I couldn’t get out of bed. That didn’t stop my from trying to trying to do so one night, though, sure that I’d be able to go for a walk even though I couldn’t feel my left leg.

This wasn’t the first time that I’d try to do something that my body obviously couldn’t do. Many stroke survivors have a brain-body “disconnect” when it comes to what they can safely do post-stroke. No one had told me this before that night when I tried to get the rails down on my hospital bed that night. All I was thinking was that my head was pounding (as a person’s head often does right after brain surgery.) I’d been told I couldn’t have any more pain medication, and I wanted to talk a walk to clear my head.

No one told me about the brain-body disconnect that night, either. The nurse who caught me trying to get the rails down on my bed decided that I was a danger to myself and needed to be restrained by my wrists to the bed. To this day, I believe that it wouldn’t have been necessary to restrain me had she taken two minutes to sit down, explain that a walk wasn’t an option (even though my brain was telling me it was), and promise to try to get a doctor to order me some more pain medication. Even if she’d had no intention of doing so, I probably would have just cried myself to sleep eventually.

Tell me about what I can expect from being a stroke survivor. It may help me to make better (and safer) decisions.

Tell Me About…What I Need to Do

I declined to have the Nursing Department represented at my discharge conference from inpatient rehabilitation. The nurse that was to speak on behalf of my nursing team, Jeanette, had crossed me before. She’d been present in at a meeting where the staff was evaluating me to see if I’d become depressed during the rehabilitation process, and I felt that she’d lied about me.

The Meeting Where I Was Tossed Under the Bus (I Felt, Anyway)

“Sarah doesn’t make her bed, she misses therapy sessions, and she doesn’t shower in the morning.” Jeanette said. “And her dresser-top is always messy.”

My mouth dropped open. Such a lot of generalizations based on isolated incidents! I confronted Jeanette after the meeting, but she refused to listen to my concerns. She said that rehabilitated people did not act the way I acted.

I said, “I wasn’t told that in order to participate in this program my bed needed to be made every day and my dresser-top needed to be clean and I needed to go to therapy even when I felt a seizure coming on and shower at the same time every day without fail.” (Another nurse later confirmed that of course these things weren’t required in order to participate, but that’s not my point.)

My Point

I need to know what your expectations of me are for the rehabilitation process.  Tell me about what you want me to do…when and how often I should be doing it… what should I do if your expectations of me conflict with someone else’s…

Also, tell me when you can about how what you expect me to do is going to help me in my recovery. I really couldn’t see how making sure that my dresser-top was clear was going to get me back to my old life any faster. However, because I’m a pain-in-the-ass, and because I wanted to be sure that no one could accuse me of not keeping a clean dresser-top, since it was so important, my dresser-top remained clear until I left.

If Jeanette had told me that keeping my dresser-top clean would get my arm moving faster again, and included some random big words in her explanation about why, I likely  would have done it much more willingly and probably not even questioned her. By the way…

Tell Me…So That I Understand

I don’t have understanding of stroke or the medical terminology that you do.  Please make you explanations as clear as you can. I want to do everything I can to get my life back, and I need information that I understand so that I can make good decisions…from whether I was to be part of an experimental treatment to whether I *really* want to skip my exercises that day.

On any given day during my rehabilitation, I was feeling a mix of angry and sad and overwhelmed and (especially during inpatient stroke rehabilitation) alone. Please talk to me. You’re a touchstone in a very new and confusing world.

By the way…

Please don’t take the fact that I used two negative anecdotes about nurses to mean that I have anything against nurses. I had exactly 3 negative experiences with nurses in over seven months of hospitalization. I saw many, many nurses, the vast majority of whom were compassionate, chronically overworked and putting up with far more than anyone should, and still going far beyond the call of duty, smiling as they did so.  I’ve got nothing but admiration for nurses – even the ones who were unfortunate enough to get in the way of my emotionally labile stroke-brain.

Next time: “I’m a Stroke Survivor…Please Listen to Me.”


Bio:  Sarah Levis was diagnosed with a brain arteriovenous malformation after having a stroke at age 22 during a job interview. Twelve years later, after brain surgery and another major stroke, she owns her company (Running Steps), does freelance writing and disability advocacy, has created her own web directory for disability-related websites, and is the voice of the award-winning “Girl With The Cane” blog. Publishing credits include The Globe and Mail, Abilities Magazine, and  Disability Horizons website. She is also a blogger-at-large for the Accessible Clean Taxi coalition in the United States. Sarah is thrilled to be blogging for Physio in Motion.