If you ask a person with Aphasia how they feel about their communication abilities and overall recovery, you may get vastly different responses based on their aphasia severity...
CLIENT A: "I'm having a hard time enjoying family gatherings, I can't always come up with the right words when I'm engaging in conversation with my clients on the phone, and I've been noticing several spelling errors in my 5 page memos that I'm writing for work."
In my work with individuals who have Aphasia, I have found more often than not, those with fewer and less severe communication impairments, and those that are often classified as having a "mild aphasia" based on formal and informal assessments, tend to report more significant emotional impact and burden. A combination of subjective observations and patient reports, as well as low scores on quality of life measures for individuals with Aphasia, have quite consistently confirmed this belief. Individuals with a milder Aphasia often report having trouble resuming the activities they once loved or pursuing new interests, they experience low confidence and self-esteem with work or school related tasks, and no longer want to socialize amongst friends and family. However, although they may have mild word finding difficulties and occasionally have trouble formulating complete thoughts, they are able to participate in an array of conversational topics with a variety of people. They may have occasional trouble reading and understanding complex materials, and might have a few spelling challenges with more complex vocabulary words; however, they can continue to enjoy their reading pastime and are able to participate in their family email chains, and are able to continue working with their clients and colleagues through emails and phone conversations.
CLIENT B: "It's good. Great! Happy. My wife (gestures a thumbs up). Thank God! I'm better all the time!"
Then you have the individual diagnosed with a more moderate, and possibly even severe Aphasia. They often speak in 1-2 word phrases, and are unable to formulate a complete sentence. Word finding challenges are quite significant, and they may not even be able to say their own name or the names of their family members. They might have trouble writing single letters, and may be able to read a few simple words, but are unable to read sentences or paragraph level material. However, these individuals often are in good spirits, remain hopeful for a good recovery, pursue new interests and hobbies or adapt their old ones to fit their current needs, and look forward to hanging out with friends and family.
What they might say about each other....
Client B might look at what Client A is able to accomplish and think "How can they be so depressed? How can they not appreciate how well they communicate? I can't even write a single letter but they can write pages, and still aren't satisfied. I only wish I could still read the mystery and romance novels I used to enjoy."
Client A might look at Client B and think "What is wrong with this guy. How is he so happy all the time? What is wrong with me? Why can't I just appreciate how well I'm doing? This poor guy can't even say his own name and he walks in the room like he's got the world on his shoulders."
What is it that makes the emotional impact of Aphasia seem so much more significant for individuals with a milder Aphasia?
We know that it is not uncommon to have both emotional and behavioral changes following a stroke. This is not just a result of the traumatic event that has turned their lives upside down, but also due to actual chemical changes in the brain and the area of the brain that may have been impacted by the brain injury.
What makes the emotional response different and is there any connection between one's severity of Aphasia?
AWARENESS: When someone has a milder Aphasia, it is likely that their overall awareness and insight into their communicative challenges is better than someone with a more significant Aphasia, making it more difficult for them to accept these changes in their lives. It's interesting to think about this because as Speech pathologists, it is not uncommon for us to specifically address someone's awareness in therapy, trying to improve one's insight into their speech and language impairments to help us address them. However, is it possible to make someone "worse," at least from an emotional standpoint, by doing so? Would we be better off letting our patients believe their impairments are minimal, letting them keep that positive attitude, enjoy the life they're living, and believe they are communicating effectively? I believe there is a fine line we walk with this one...
PERCEPTION: Or is it that the person with the more significant Aphasia in fact had a more severe stroke or brain injury, almost leaving them without a life to live at all? Maybe they are simply happy to exist in this world and are thankful to be alive. Sure they may be in a wheelchair, unable to move the right side of their body, and yes they have trouble saying their own name or even responding to yes and no questions, but they can see their daughter get married and their grandchildren be born. They can continue to eat their favorite meal at dinner time and watch movies with their loved ones. And to them that is enough...
AN "INVISIBLE" DISABILITY: It is more likely that someone with a milder Aphasia will have less physical involvement on their right side. I have often questioned if the lack of a physical impairment makes it harder on the person with Aphasia, as there is no "physical" evidence that there should be anything wrong with them. Then they go to communicate with the bank teller and stumble over their words and identify the incorrect numbers, and fear they're being viewed as dumb or stupid, as that cashier has no clue he/she just had a stroke a few months back. I think there is no doubt that as a society, we tend to view someone's ability to communicate...the sentences they formulate, the vocabulary they use, the ease with which their sentences flow, as a form of intelligence. Our individuals with Aphasia have not lost their intellect in any way shape or form....however, their communicative abilities sometimes fail to back them up on this.
THE "NEW NORMAL": Finally, I propose that it may simply be that the individual with a milder Aphasia is SO CLOSE to their normal, SO CLOSE to who they were before, and just want that 100% "normal" back, but can't seem to get it. It is harder for them to accept this "new" normal because they are so darn close to their "old" normal, whereas for someone with a more significant Aphasia might be more willing to accept this "new" normal because it is quite a distance away from what they once were. Individuals with a milder Aphasia likely are continuously told by others around them "You're doing amazing!" and "I wouldn't even know you had a stroke," but this only adds to their frustration and sadness. No one knows what goes on in their heads but them, and the struggle they experience to find those exact words they're looking for, or that they have to take that extra time to plan out their thoughts before they formulate that sentence. However, the communication partner on the other end only "hears" that well constructed sentence, not the mental turmoil and struggle that took place seconds before.
There is no doubt that one's recovery from Aphasia, including communicative, social, emotional, and physical aspects, varies greatly and is influenced by many things. How far one recovers and over what period of time is extremely variable, and the positive and negative impacts on one's recovery are certainly multifactorial. However, I just wanted to share some of these observations and open up the opportunity for further research and discussion on this intriguing topic.