The Lack of Control with Aphasia

Aphasia brings with it a lack of control. There are steps you can take to treat aphasia, whether it occurs due to a stroke or brain injury or comes as part of a primary progressive aphasia diagnosis. But your brain’s response to the hard work of speech therapy is somewhat out of your hands.

That lack of control is something both Beau Biden and Joe Biden grapple with in Joe Biden’s book, Promise Me, Dad, which is the latest installment of our online book club. We are focusing solely on the parts of the book that cover aphasia and caregiving.

Putting a Name to It

While Beau is cognizant that everything is not fine, he carries himself as if everything is in his control. This is apparent even in his response to his diagnosis. Rather than focus on the lack of control, he feels empowered to have something to do.

On page 24, Biden records his son’s response to his brain tumour:

When Beau first saw the scans that showed a lesion on his brain, in the summer of 2013, part of his reaction was relief: he finally had an explanation for what had been happening to him.

His sense of relief comes from having a clear understanding of what is causing his aphasia. If he can name it, he can treat it.

Handling Other Things

Beau and Joe both respond by throwing them into their work, something they can control in the chaotic space of navigating a brain tumour and its accompanying problems, including aphasia. Both attempt to handle other difficult things because they can’t make a dent in what they really want to control: Beau’s health and well-being.

On page 82, Biden writes,

[Beau] had no real control over what the disease or the treatment was doing to his body; no real control over his blood work; no real control over what his scans looked like every two months; no real control over when and how aggressively his tumor might begin to grow again. What he could control, he did. He kept doing his job as attorney general of Delaware, and doing it well.

Even a job such as attorney general feels small and doable when facing something as vast and uncontrollable as a health crisis.

Keeping Busy

Joe, as the caregiver, also feels frustration and throws himself into work. He uses his schedule to prove to the universe that everything is fine. On page 84, he admits that he uses work as an escape.

Steve had also come to believe that part of my insistence on keeping up with the demands of my job was a desire to prove to Beau and Hunt and Ashley that I was fine. That I was still capable of handling anything and everything that was asked of me.

Having power over one aspect of life — such as work — can be empowering when power is removed from other facets. Though Biden would much prefer to have control over his son’s health.

Do you ever struggle with the lack of control inherent in treating aphasia?

Image: Greg Rakozy via Unsplash