Telling Someone Else’s Aphasia Story

Where does one person’s story begin and another person’s story end? The people around you may be affected by your aphasia, and it becomes part of their story. Or the same thing can happen in reverse, the people around you become part of your aphasia story. Characters overlap and may see the same situation from two very different points of view.

This is a situation Lauren Marks encounters in her new book, A Stitch of Time.

Updating Family

While Lauren is in the hospital, her father starts sending out mass emails to friends and family updating them on Lauren’s condition. Everyone is concerned about Lauren and wants to know how she is doing after an aneurysm removes her ability to read, write, and speak. Her father supplies the words in order to save time and inform loved ones.

Lauren only discovers the emails once she gets out of the hospital and a woman references them. Lauren understands the need for these messages while she is in crisis, but she thought they stopped once stability has been established. Her mother hints that her father may still be sending out emails on her behalf.

Doing Things For Her

Lauren points out the problem on page 69: “Speaking for me felt very different from doing things for me.” For instance, filling out a form because Lauren can’t write feels helpful. Making assumptions and then telling people what Lauren thinks feels unhelpful. When Lauren finally reads some of the emails, she can’t believe how wrong her father got her inner thoughts.

On page 71, she writes,

My father’s portrait of me didn’t match with the world I inhabited and didn’t hint at the newfound Quiet, which had been at the very center of it for me.

He didn’t ask her whether she wanted these emails sent. Because she never got to explain what was happening in her head, not only did her father not understand her, but he was spreading that misunderstanding to other people as well.

Telling Someone Else’s Story

Lauren and her father are out running an errand when he admits that he has been thinking about writing a book about their experience. Lauren explodes at her father on page 72: “You cannot write about this. None of this. No more EMAILS. NO BOOK. NOT EVER.”

Lauren admits that upon reflection she “had been curt to a man who had only ever been my advocate.” But her point is that her aphasia is her story to tell. And she does tell it in the form of her memoir.

While speaking for another person may stem from good intentions, few people want someone else telling their story. And yet her father has his own experience with his daughter’s aphasia, his own side of the story to tell, too.

Where do you think one person’s story ends and another person’s story begins?

Image: Clem Onojeghuo via Unsplash