Aphasia Awareness - A Father-Daughter Story

June 20, 2020 4 min read

Kristine with her father and his artwork

This Sunday, June 21, 2020, we celebrate Father’s Day and I wanted to share my father’s story with you.

June is Aphasia Awareness month and ourJody Stripe is dedicated to starting the conversation around this challenging communication disorder.

What is Aphasia?

Aphasia is an acquired speech and language disorder caused by stroke, traumatic brain injury, tumor or neurological disorders like dementia. There are varying degrees of aphasia; from the “tip of your tongue/can’t find the word” level, to a severity of not being able to speak any words or sentences. People with aphasia can also have difficulty understanding and computing information they hear or read, but the bottom line is that a person with aphasia has 100% of their intelligence. 

How has aphasia impacted my life?

This past May was the 23rd anniversary of my dad’s stroke, which he survived by way of a miracle. I was 11, in 6th grade and at that time didn’t fully grasp the magnitude of how my family’s life would change. My mom was young and because of my dad’s stroke, became the primary caregiver to my father and three daughters, all under the age of 18. My two older sisters and I also became his caregivers and I’d just like to honor our collective resilience and strength for the last 23 years. 

The stroke caused many disabilities for my dad. He is paralyzed on his right side, unable to move his right arm and with limited mobility of his right leg. He walks with a cane and can take care of many of his needs like eating, using the bathroom and dressing himself. The biggest impact he endures is his aphasia. He has the most severe level of global aphasia and the symptoms are irreversible. He cannot speak with words or sentences. He uses repetitive sounds and random words to make his voice heard but they usually don’t mean what they sound like. So for the last 23 years, my dad has not been able to communicate in the same way most of us can. When he has a need or concern, we try to understand through a process of elimination- asking if he is talking about certain people, topics, events or needs. We write things down to help him see the conversation as we speak. It can get really frustrating for him and for us as a family but the most amazing thing about my dad is his ability to honor where he is and accept when he cannot get his point across. 

Why am I sharing all of this?

My hope is that others who have been affected by aphasia can heal in knowing they are not alone. From the people with aphasia to the loved ones who are a part of their lives, we are a resilient and beautiful family. Through my journey, I have learned to speak up for others who don’t have a voice and offer my platform to bring awareness to raising the empathy and understanding for conditions and situations that are often misunderstood, overlooked or judged. That’s why the Signature Stripes were born. If you are new to K-DEER, our Signature Stripes are all named after amazing women in my life to raise awareness for a cause close to that person’s heart, while donating proceeds to charities of those causes. It’s through these stripes that we raise the vibration for healing and understanding of aphasia, pediatric cancer, albinism, animal welfare, foster care, veterans, LGBTQ+ youth, the environment, mental health, eating disorders, human trafficking and domestic violence. 

Want to know more about my dad?

For the last 20+ years, my dad has been drawing as a form of self expression and communication. He was a professional photographer for 30+ years before his stroke and as a creative soul, he needed to express his art since photography was no longer easily accessible for his body’s limitations. He draws 2-4 drawings a day and over the course of 20+ years, has amassed over 15,000 drawings. He had to teach himself to use his left hand (he was a former righty) and then control the pen to output what he sees in his heart and mind. He is not able to write what he is thinking with words but will often use numbers, time and sketches of places or things to communicate. If you want to learn more and see his work, you can visit his website atwww.jeandeer.com or his Instagram @jean.deer.

For more resources and information about aphasia, please visitwww.adleraphasiacenter.org, the center that my dad has been attending for 10 years, a community for people with aphasia, and it has been the most amazing space for my dad to feel loved, accepted and not alone in his condition. Donations are always welcome.

What can we do collectively to care more deeply about each other?

Educate, listen and be patient with ourselves and others. Love, empathy and compassion are our greatest gifts to give and we must understand that they are abundant. This river runs deep within us and when we believe in the abundance that is ours, we become limitless. Loving yourself more deeply will teach you how to love others with the same magnitude that you require to feel whole and true. 

If you want to get in touch with me or my dad, please feel free to email us athello@k-deer.com. I look forward to connecting with you. 

 

xo,

Kristine


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