My name is Mari Joyce.
I had a massive stroke 3 days before our wedding in 2006.
I have Aphasia and PBA*. I can read and write sometimes with help with my husband.
My stroke took away things I loved: I was confident, strong-willed, independent, intelligent and passionate.
I am still Mari and I have faith. I know in my heart that God has a plan for me. I may never know what that is, but whatever it is, I will run with what I have.
*PBA is “uncontrollable outbursts of crying or laughing in people with certain neuro conditions or brain injuries.
I am still Mari.
Mari and I signed our prints out – about 30+ images made up the run. Another story to share in the Aphasia project – Mari’s story, her image and her dog Caesar. I appreciate how patient and supportive she and Wes have been in helping this print come into being.
“Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain-most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections.”
Dealing with Aphasia as a diagnosis, as a lifestyle, or as a defining point is not for the faint of heart. Our family has lived in Stroke World and on Aphasia Island for 14 years. Besides the professionals – the fantastic speech pathologists and retired speech paths and friends who pitched in when insurance ran out (and who are still there,) there is a strong and hearty group of people who join us at our kitchen table to break bread and enjoy some wine, who have been part of this journey. And being surrounded by educators and being one myself, I thought that I could tell in a visual way, something about Aphasia and some of the folks on Aphasia Island.
I thought that I might do this by portraiture – oil paintings of the person who drew the short straw and has Aphasia. I thought I’d ask our friends Mari and her husband Wes to participate – or the little 3 year old busy boy and his folks but I just couldn’t (at least yet.)Then I thought about the whole support group – then I thought better – I’m not geared to do portrait painting that are remotely photographic or closely representational. So – instead nothing happened. It all seemed great in my head but not on paper. The visual images are elusive. The explanation of Aphasia is scientific but the Aphasia experience is deeply personal.
So, gripped by a feeling which is how most of my work starts, I started to draw. Draw big. Draw from blurry memories and old photos of Bob and Erin. Draw from significant memories of walking the portable Chartres labyrinth in my stocking feet – and thinking how it is sort of like a brain with all of the folds. Remembering how we fell apart and came together and kept on going. Remembering how Bob’s dad and I planted 300 daffodil bulbs that fall because we knew something had to spring from all this tumult.
This is just the beginning of the story – I think I have to start with the story I know best and then maybe help others make their own story. It isn’t about the skill, or the technical wizardry of art; it is the making that matters.