I’m a Stroke Survivor…Listen to Me!

In this space previously, I wrote about the importance of medical/treatment teams taking the time to talk to stroke survivors. Taking the time to listen to us is just as important.

I was 22 years old when I had a major stroke after brain surgery to treat a congenital vascular problem called arteriovenous malformation. The stroke happened a couple of days after the surgery, leaving me barely able to lift my left leg off the bed and almost totally unable to use my left arm and hand. My neurosurgeon had warned me that this sort of damage was possible, and that having the surgery was still safer than not having it. However, my life path had suddenly and drastically changed and my emotions went on a wild ride.

Listen to Me…When I Try to Tell You How I’m Feeling

Chemical changes in the brain after a stroke sometimes cause strange emotional displays in stroke survivors:

  • Drastic mood swings
  • Inappropriate laughing or crying
  • Laughing or crying that goes on too long for the situation
  • An emotional reaction that doesn’t match the person’s mood

I can remember experiencing a couple of incidents of this sort and others have told me about incidents that I don’t remember.  If you’ve worked with a stroke survivor, you likely know that these sorts of incidents are called pseusobulbar affect or emotional lability.

The best way for me to deal with emotional lability, especially when it involved crying that I couldn’t control, was to try to get going at an activity and get my mind engaged on something else. I learned this from my medical/treatment team. However, I believe that there were times that people on my medical/treatment team “wrote off” a highly emotional reaction (like crying hard) as an emotionally labile moment , when I was really genuinely very upset and really wanting to talk. Having my emotions dismissed increased the upset, brought on more tears, decreased my ability to speak coherently about what was upsetting me, and made the staff member even more likely to dismiss what was happening as emotional lability.

See, when my life is fairly stable in most areas and my brain isn’t struggling to adapt itself to a bunch of new medications, a recent surgery, and a major stroke, I can generally pull it together after a bit of crying and explain what’s going on: “I’m crying because I’m scared that my arm and leg will never work again/I’m angry that this happened to me/I’m anxious about what happens to me when I leave here /I’m often quite sad/sometimes I’m completely overwhelmed and I don’t know what to do with it/all of the above. ” Everyone on my medical/treatment team could recognize that an emotional reaction due to these any one of those feelings is natural and expected for a stroke survivor in rehabilitation. And when I could get out right away what was bothering us, my team members responded gently and compassionately.

But there were a few times that I just couldn’t get the words out right away and couldn’t stop crying.  I was told that I was just in the middle of a mood swing, and I needed to just get on with things:  “Go eat your lunch. You’ll feel much better if you just start doing something.”

The display of these natural feelings could potentially be complicated by lability issues, of course. But that doesn’t mean that there wasn’t a genuine issue that I needed to discuss. I heard, “Suck it up and get on with your day,” when I really needed to hear, “If you want to talk, we can.”

I persevered during these few times and tried to talk things out (probably annoyingly so) because I know from my personal history that things don’t go well for me when I bottle up what’s bothering me. But many stroke survivors don’t have the self-confidence, or sometimes even the ability, to make themselves heard during those times when people really need to hear them.

So, service providers, you need to listen. Start your listening process by constantly reminding yourselves to “Ask, don’t assume.”

Ask, Don’t Assume

This is good advice for anyone, but it’s particularly important for anyone in the helping professions. When you’re working with stroke survivors:

  • Don’t assume emotional lability. Ask what’s going on. “Are you okay? Is there something you need to talk about? How can I best help you right now?”  It may become clear fairly quickly that it’s a problem of brain chemistry and that the best course may be to suggest that the person try to get going with whatever they had planned. But maybe this is the first time he’s found himself unable to stop crying (or laughing!) and it’s scaring him.  Or maybe she really just does need to talk about some fears or anxieties that she’s having.  At the very least, you can direct the person to the appropriate team member to talk to (if it’s not you).
  • Give the person time to speak.  Some survivors have a great deal of difficulty speaking.  Some may need time to put the thoughts together in my head before they speak. Some may have trouble finding words (I still “lose” words when I’m very tired), and some may speak very slowly. They may need reassurance that this is okay. Ask the person to let you know if they need help with a word and then trust them to do that. Don’t finish sentences for them. If you’re unsure about whether the person needs help, ask, but respect their decision. If you don’t understand something that the person says, don’t just pretend that you did. Respectfully ask them to repeat what they said.
  • If you don’t have time for the discussion, let the person know. It’s better to have the discussion at another time than to start it and have to stop it. Try to schedule an alternate time to talk right there, if you can. If the person is really upset, try to help them think of some people that they could talk to at that moment (family, friend, another team member, crisis line).

Know that we do appreciate it when you take the time to really listen to what we’re saying, even if we don’t always say so.  It’s not easy suddenly being dependant on other people for everything, having the course of your life diverted, and to have to put all your effort toward a recovery goal with no guarantee of how far that effort will get you. We know that you’re busy, but some days just knowing that you’re willing to listen to our fears and anxieties makes all the difference.  It’s that important.