The First Decision That Changed My Life After Stroke

New life, new choices

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UPDATED TO ADD AUDIO

All circumstances taken together, I was lucky when I had the post-surgery stroke at 22 that weakened my left arm and leg to the point of almost total incapacitation. I’d been volunteering with my local Association for Community Living on and off for seven years by that point, and I was familiar with the disability world because of the work I’d done with intellectually disabled people.

Still, I wasn’t prepared for the way my life would change.

I had already been hired for the summer by my local Association for Community Living. I told them I would need three weeks to recover from the craniotomy required to treat my arteriovenous malformation. I told them after the stroke that I was sticking to that date, even though everyone around me (including the staff that hired me) knew that there was no way I was going to be recovered enough to return to work in three weeks. They were good enough to sound surprised when I called them the day before my originally anticipated start date to tell them, though.

At that point, I hadn’t even started inpatient stroke rehab yet; I was still in the hospital, unable to be transferred to a rehab facility because my seizures weren’t yet medically controlled.

I know why I didn’t want to admit that I wasn’t going back to work that summer. I was already tired of being thrust into the role of “patient”, a role I hadn’t wanted. I was starting to realize that my role as a summer employee wasn’t the only one I would have to give up in the coming months (years, as it turned out).

Before I’d had the stroke, I’d been:

• A student

• An employee

• A volunteer

• A traveler

• A licensed driver

• A person who could live and function on their own

• A dancer (not a great one, but I do enjoy dancing)

• A person who could go for a walk by myself if I wanted

When I entered stroke rehab, I couldn’t walk, and I could barely eat, write, or groom myself; since the stroke had affected my dominant hand, my left hand, I’d have to relearn to do all those things with my right hand, and they hadn’t started that work with me in the hospital.

I don’t remember this, but on my first night in stroke rehab, I apparently cried and yelled at the nurse helping me to get ready for bed to leave me alone, because I knew I was never going to walk or use my left hand again anyway.

I woke up the next morning hating my life, hating that I had to be in stroke rehab, and not wanting to participate at all.

But then it occurred to me that I had a choice.

“You could refuse to do the rehab,” I told myself, meaning that I’d have to continue life as I had been living it in the hospital: in bed all the time, dependent on people for everything from toileting and bathing to dressing, to meals and getting meds, to getting into a wheelchair so I could look outside the window.

“Or you could give this a try and see how far it gets you.”

I decided to give it a try.

Not because I believed everything would magically improve, but because trying was the only way forward.

It wasn’t the last time I had to make that choice. In fact, I’ve made it many times since — not just in rehabilitation, but in life.

And almost every time, choosing to try has opened a door I didn’t know was still there.

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