8 listening skills... to help battle aphasia
I know a thing or two about being surrounded by a world that bewilders you, makes you think that you’ve either lost your mind or is gently nudging you to the point of mental exasperation
When I woke up from surgery following my stroke, the only word I could speak was ‘one’. You could have asked me my husband’s name and I would promptly answer ‘one’. Or my lunch order. ‘One’.
You see, I thought I was saying ‘Johan’ or ‘a chef’s salad, please’ but actually all that was coming out of my mouth was either gobbledygook or ‘one’.
I suffer from nonfluent aphasia and agraphia as a result from the damage inflicted on my brain when I suffered a stroke.
To learn to communicate properly again, I had to go from the bottom up. Although I didn’t realise before my stroke, as I was not thinking consciously about it, the ability to precisely exchange your thoughts with another person relies heavily on speaking, understanding speech, reading, writing, gesturing and using numbers.
All of the skills which I lost when I suffered a stroke.
Those were the hardest, darkest days I have ever experienced in my life. To say the simplest of words cost me an extraordinary amount of effort.
To think of the concept, to recall the words, to remember them, to wrap my tongue around them and all before the moment was lost or my partner became disengaged was absolutely unrealistic.
If someone that you care about suffers the same, starting with a keen sense of listening could be crucial to their recovery.
Here I’ve listed 8 tools I found enhanced my recovery, expedited it and made it more pleasurable.
Voice memos from friends & family
I couldn’t read. In fact, the sheer thought of that, in the early days, was unimaginable, from another world.
However, to listen to a note whether it was a heartfelt memo, where the person was truly trying to communicate on a deeper level or simply adding a funny anecdote to liven up my day, made me feel in touch with the person in a way that is inexplicable.
In order for these memos to work, they have to be one-sided. They can’t require any reply, any actions on the survivor’s part.
I found it simply burdensome to receive a message from anyone with expectations and impossible to match them.
It should be a selfless act, not a conversation starter.
Your favorite playlist
I had my children search for and download my favourite music to my phone. Music to dance to. To sing out loud with. Songs for motivation and songs for serenity.
It amazed me the first time that I could remember the chorus of a song that I had sung at the top of my voice, before my stroke. It was like something inside me woke from a deep, dark slumber. I had spent 6 months listening to that one song and just like that, it came back to me.
Guided meditation
This is extremely beneficial on so many levels, including decreased stress levels, helping the survivor deal with their emotional regulation issues by centering him or her and fostering self-awareness.
By regularly practicing meditation, the physiology undergoes a positive change, filling every cell with more energy. On a physical and mental level, it can change the recovery.
As a beginner, I find that meditation helps me to ground myself. It is a moment just for me, when I can shut the door on everything. My recovery, my worries, my stressors and, even, my dreams.
Audio books
I can remember those 6 weeks spent lying in the hospital. My husband, who was at a loss, bought 4 books on Amazon about people who had survived strokes. As he proudly delivered them to my hospital bedside, I remember thinking to myself ‘this is exactly what I need!’.
Until I opened the first one. It could have been written in Japanese. I couldn’t read.
Audio books have changed that for me. Listening to them at my leisure, making them play faster or slower and rewinding them as many times as I need has brought back the simple pleasure of reading.
Podcasts
I only wish that I had found this little gem of advice before my stroke.
Listening to your favourite podcast is something that passes the time, makes you feel good and, depending on which podcast you tune in to, can be educational, add humour or simply lighten your daily mood.
Read aloud
I found that, in the beginning, a sentence was too hard for me to get thru. Indeed Seth, my speech therapist, would have me read one sentence. For an hour. And then, I was exhausted and fed up.
Then someone suggested having my children read aloud to me. At first I was dismissive. The thought of ‘that is the epitome of role reversal’ kept rolling around in my mind. Until I tried it!
It’s nothing short of romantic to have someone read out loud to you. For me, having my seven year old read about fairies and princesses or my mother reading an excerpt of another stroke survivor’s memoir, was dreamy.
A short mantra
I’ll admit it, I thought that mantras were kooky before. When a friend suggested it 2 weeks after my stroke as a way to snap myself back to the here and now, breaking the laser-sharp focus that was causing me to spiral down the drains of despair, the idea didn’t seem so nutty anymore.
Begin with a one word or a short phrase mantra, record it and set an hourly timer to hear it on a regular basis. Whether it’s ‘believe in yourself’ or ‘patience’ for example, there will be benefits on 2 levels, communication and a deeper sense of calmness.
Like any new rhythm or routine, it takes time to do it systematically. The benefits of setting a timer and listening to a mantra outweigh all of the peculiar looks.
Conversation with family and friends
I know it’s hard.
The crushing pain, the frustration of not being able to make yourself understood, simply does my head in.
But, please don’t let your survivor give up. To build new neural pathways takes time and practice.
Have patience with them.
Have two code signals with them. One signal should be used when they want your help to fill in the blanks, when it’s clear that they are getting frustrated. The other signal is for those times when your survivor is exasperated. Have a conversation with them about what would help them in these times. Do they want a hug? A joke? A change of subject? Something else?
One of the most frustrating aspects of my lack of communication was that I just wanted my husband or my best friend to get inside my head and pull the information out.
What would have helped is if I could have signalled them that I couldn’t find the words, that their suggestions were causing me annoyance and that I just wanted them to take me in their arms in a hug.
Recovery is a long and twisted path. Have patience with yourself and your survivor.
Caring for someone throughout their recovery is not something that one plans for. There’s no rule book. No traffic lights. Chances are that you fell upon it, just like my husband.
It makes life harder, for sure. The thankless tasks, the complexities, the unimaginable frustrations all pile on to your shoulders. If there is an upside, it is that we, as survivors and carers, are fighting for the same results.