National Aphasia Awareness Month – Moss Rehabilitation Research Institute (MRRI)

Aphasia and the Arts: Painting and Poetry

Happy National Aphasia Awareness Month to you all! In honor of National Aphasia Awareness Month, and in recognition of the upcoming, All About MossRehab Through the Arts, we are highlighting people with aphasia who are making a contribution to their communities through the arts.

We are honored to feature the work of mother, painter, poet, and survivor, Jenn. She tells her story best, we’re so grateful to share her words and images with you.

The day I suffered from stroke I had an ischemic and hemorrhage stroke on the left side of my brain I had a craniotomy to remove the entire left side of my skull. I was young, my son was only 14 months old, and I now had global aphasia, I could not read, write, speak, and couldn’t understand. I was in a lot of pain, and had a lot of sadness, but so grateful to be alive.

With Aphasia Awareness, I would like to share you with a short story:

Pain & Hope

I couldn’t sing my baby a lullaby, read him a bedtime story and I could not say “I love you”. I couldn’t spell my name and couldn’t understand my alphabet A-Z or even count 1 to 10. It changed my life and it was extremely difficult. That was the only way to express myself… to paint.

After looking at all these painting of Red (angry) and Blue (Sad) I decided there would be a last piece of Red & Blue “Unraveling”. My life was so tangled in a knot and it was so tight. But now is much clearer and unraveling. I am so grateful and blessed for my life.

After these pictures I hadn’t painted for a long time, because I wanted to stay focused with my family. But recently, I wrote a poem and read it in one of my aphasia support groups as a challenge to work on my words and prove to myself I can also be expressive through writing. In particular, I will share my poem “The Only Light.” This poem was written by about my first painting “Isolated” as I was sitting on the floor in the dark when I made it. My son was sleeping and I didn’t want to bother him while I was painting to convey the pain I was feeling at the time. Since then, I continue adapt and realized I can still communicate my thoughts and emotions by creative expressions like painting as well as words. No matter what you’ve gone through, don’t give up finding ways to show others how you feel. Keep trying in the darkness, because the light will soon follow.

Aphasia and the Arts: Poetry

We’re thrilled for our first feature to highlight, Mark Harder, poet, innovator, and creator of Poems in Speech! Thank you, Mark, for sharing your words with us.

Were you always interested in poetry?
No – I used to write instructions, lessons, and grants for plastering apprentices, journey workers, and apprentice teachers.
What inspired you to write your first poem?
Early on my stroke, I was not able to express my frustration, sadness, pain, and loss. I couldn’t tell my wife, children, friends, coworkers, and the doctors what was the symptoms. Then I could finally describe the pain on my right side, (like sunburn) and it was figuratively but so liberating too. My first poem was titled, “To Me, This Is Aphasia”.
What is important to you about poetry?
I feel that my circumstances have given me a lot of thought (materials). I use poetry as therapy in my soul. I am practicing on my speech, writing, reading, vocabulary, tempo, and creativity.
What prompted you to start your virtual poetry group?
Before the pandemic, I would go to the MossRehab Aphasia Conversation Group, aphasia support groups, and research – then everything stopped. Slowly, the support groups resumed virtually. But in August, there was another break in sessions. I purchased a Zoom account and invited the Aphasia Conversation Group to continue by ourselves. I think is helped. Then I thought about sharing my passion of recovery through poetry.
What’s your favorite thing about the virtual poetry group?
I enjoy the camaraderie of struggles and succeed – and just being together.
How can people find out more about your virtual poetry group?
I post information on Facebook, https://www.facebook.com/profile.php?id=100016348414229, and Instagram, @poems_in_speech. I created a website named poemsinspeech.com and you can email me for information, mark@poemsinspeech.com.
What advice would you give people with aphasia who want to start writing (or reading) poetry?
It took months to just say the alphabet and the numbers. But I try to write the things that I was saying too, like – “I want to get better.”, “I’m done.”, and “I locked the door.” I couldn’t rhyme. Try to express yourself in words, emotions, and logic.

Trust (by Mark Harder)

I don’t trust my lips.

I don’t trust my tongue.

I don’t trust my breathe.

I don’t trust my whole mouth.

I don’t trust the words I see.

I don’t trust the voices I hear.

I don’t trust my finger to point.

I don’t trust my head to nod.

I do trust the sun will rise.

I do trust the flowers will bloom.

I do trust the tide will ebb and flow.

I do trust the moon will wobble.

I do trust that the pain will pass.

I do trust that things will change.

I do trust the me inside.

I do trust that God is next to me.

Music and Aphasia

As we wind down our activities for National Aphasia Awareness Month, we’re so pleased to feature this guest post from our own, Roberta Brooks, CCC-SLP!

Back in January, when we could still gather together, a group of members of our Aphasia Center met weekly for Musical Mondays. Musical Mondays was designed to be a 10-week trial program to explore the question: “What can music do for you?”. We completed 9 weeks of our program before COVID-19 changed the way in which we interact with each other, for now. Those 9-weeks were filled with laughter, music, sharing, and support. We learned a lot from each other and experienced the power of music. Although the program is over, for now, there are many ways to incorporate music into your life!

What can music do for you?

Have you noticed all the music in the air during Aphasia Awareness Month? It makes sense. Music is a “universal language”. Hans Christian Anderson, a famous storyteller said: “Where words fail, music speaks.” Researchers continue to discover the full power of music and its role in healing (see music and healing: https://allarts.org/programs/open-studio-with-jared-bowen/boston-hope-amanda-gorman-and-more-szwvrv/).

Aphasia therapy has long used singing as a tool for regaining speech. Let’s start with singing and then look at other ways music can help with communication skills and shared experiences.

Sing, Sing, Sing

Melody, rhythm, and familiarity with favorite and/or emotionally charged songs may allow a person with aphasia to sing words he/she may not be able to speak. Start by singing a favorite song or a song that connects you to a happy memory in your life.

If the song has repeated words in the chorus, is slow paced, and uses short words, all the better. But, start with a song you love. Sing along with someone. There are lots of ways to do this. Sing with a family member or find a song on you-tube, Pandora, or other sources of music you may want to explore. We found YouTube to be particularly helpful because we could often find the song we wanted to sing with the words in view on the computer screen.

If you are singing at home, sing along with the song each day, for 10 to 15 minutes. Over time, gradually make the sound softer on your computer and sing a bit louder. When you feel ready, try singing the song on your own.

Here are a couple of favorite “sing-along” songs from our group.

Queen, We are the Champions

The Beatles, Let It Be

Clap your hands

Rhythm and rate (tempo in music) are important parts of music and speech. Copying a rhythm pattern and/or creating a rhythm pattern by clapping your hands, beating on a drum or tabletop, or tapping your foot is good for you. Start with short rhythmic patterns and gradually try to copy longer patterns. Listen carefully to the pattern you are repeating. Do they sound the same? This activity exercises listening skills, auditory memory, and fine motor coordination. Use this listening skill when you are speaking to help yourself take your time when talking.

Notice the different rhythms in these two pieces of music:

ABBA, Dancing Queen

Jean Luc Ponty, Cosmic Messenger

Music and Mood

A 2013 study in the Journal of British Psychology found that people who listen to upbeat music could improve their mood and boost happiness in just two weeks. Music can also be energizing or relaxing and a source of comfort. See how different types of music affect your mood

Mary J. Blige, Be Happy

Gene Kelly, Singin’ in the Rain

Elton John, Candle in the Wind

Beethoven, Moonlight Sonata

Elvis Presley, Hound Dog

Music can do a lot for us. We can enjoy it when we are alone and we can enjoy it together. In this computer age, even when we are apart, music can be a shared experience, https://video.whyy.org/video/you-oughta-know-episode-19-lokfz3/.

Until we can be together again, let’s keep the music going!

For more information about joining the MossRehab Aphasia Center, please contact: Ms. Nikki Benson-Watlington at bensonwn@einstein.edu or 215-663-6344

June is National Aphasia Awareness Month!

At the MossRehab Aphasia Center, every month is Aphasia Awareness Month, but we always plan special events for June. Please join us and help spread the word about aphasia!

We are hosting several Facebook Live Events!

A virtual education program entitled, Aphasia and the brain 101: Why what’s difficult… is difficult
Two sessions during the Aphasia Access 24-hour Teach-In: Featuring Sharon Antonucci at 5:15pm and Roberta Brooks at 6:45pm on Wednesday June 24th
A ‘Watch Party’ of the WHYY You Oughta Know segment about our Musical Mondays

We are also launching a new weekly activity, Wednesday’s Virtual Variety Hour!

We hope to see you there!

For more information about joining the MossRehab Aphasia Center, please contact: Ms. Nikki Benson-Watlington at bensonwn@einstein.edu or 215-663-6344