June is National Aphasia Awareness Month. I am somewhat encouraged that the word “Aphasia” has been heard more this year in the news, and awareness is slowly improving. Unfortunately, it seems to take a person of fame (i.e. Bruce Willis), political stature (i.e. Gabby Giffords, John Fetterman), and some potential gossip to simply get “the word out”, and the corresponding message may not always be accurate or clear, but I am thankful we’re getting SOMEWHERE….I’ll take it.
In other ways, I feel that we have merely skimmed the surface, educating others that Aphasia is a language disorder, typically occurring after a stroke or brain injury. We may even go so far as to say that it impacts one’s ability to talk, understand, read, and write, and does NOT affect intelligence. Again, this definition is a wonderful start. At least people are starting to understand that Aphasia is not a flower or a medication, and may even be more tolerable and understanding of the next person they come across in the community who has challenges communicating.
I am writing this blog today to encourage us to start to dig a bit deeper, and let people know that Aphasia is SO MUCH MORE than a language disorder or problem. It is time for the world to know the many other impacts (often devastating) of this disorder, and hopefully will allow for exploration of additional resources and for more support to be made available to people with Aphasia and their families.
How exactly we do this, I am not yet sure, but I’d like to shed a little light on the depth of what I’m referring to.
APHASIA CAN BE AN INVISIBLE DISORDER
Aphasia can not always be seen by the naked eye. Sometimes individuals with Aphasia will have right-sided hemiparesis or paralysis, and have a visible, physical “handicap,” but many will not. So it is not until a communication attempt is made does someone realize something is off. But what? They “look” completely normal. Why can’t this person formulate their sentence? Why are they looking at me like they don’t understand what I’m saying? Did this person seriously just say “football game” when they are clearly sitting at a baseball game? This individual has to be mentally ill. Maybe they are on drugs….they surely can’t be very smart….
And here begins the assumptions, the judgments, that 9 times out of 10 are inaccurate and beyond hurtful. These judgments can sometimes make someone with Aphasia no longer have a desire to leave their home, causing isolation and depression…they may no longer wish to go out into the community to even buy groceries in case they would need to ask for something or someone starts to talk to them.
THE LESSON: People with Aphasia may APPEAR normal and have ZERO physical
impairments associated with their deficits. It does not mean they do not have their challenges. Struggles can be INTERNAL just as much as EXTERNAL.
THE MESSAGE: Be patient and understanding, and please do not make assumptions. These individuals are intelligent and likely have quite the vocabulary, they just have trouble ACCESSING it.
APHASIA IS A FAMILY AND FRIEND PROBLEM
Aphasia DOES NOT just affect the person WITH Aphasia. Everyone within that individual’s circle, friends or family, is impacted in some way.
Family roles change and shift. Wives become caretakers, plumbers, and landscapers. Daughters become the appointment maker, housekeeper, and financial guardian while trying to also care for their own family. Husbands become that only connection to their wives friends, having to constantly explain that she is in fact still the same person inside, even if she isn’t able to communicate in the same way. Fathers are unable to read to their children or help them with their homework, and now have their own daily “homework” and practice as they try to work on recovering their language abilities. Friends feel uncomfortable with the silence that now exists while talking about the basketball game or during Poker Fridays, and the frequency of phone calls and visits slowly die off.
THE LESSON: Aphasia is devastating for people living with it and facing it, whether you are
the person with Aphasia or not.
THE MESSAGE: Everyone surrounding the person with Aphasia needs to be provided with education, support, and resources, or these relationships and friendships will slowly die off.
APHASIA IS A YOUNG AND OLD PERSON PROBLEM
Aphasia affects people of all AGES, young and old, healthy and unhealthy. We commonly associate strokes with the “elderly,” but this association is inaccurate. You can have a stroke at any age. You can experience an aneurysm or a brain injury at any age. Aphasia affects ALL AGES.
THE LESSON: You can have APHASIA at ANY AGE.
THE MESSAGE: There needs to be more support and resources need to be available that can assist individuals with Aphasia across the lifespan, helping them at whatever stage of life they may be in (parenthood, student, retirement, etc.).
APHASIA IS A CAREER PROBLEM
Given that Aphasia affects people of all ages, it can disrupt educational plans, career paths, and often leads to unemployment, as it is nearly impossible to find jobs where some form of communication is not required or necessary.
THE LESSON: Aphasia can make it very difficult to get a job and/or keep a job.
THE MESSAGE: People with Aphasia should be connected with vocational rehabilitation specialists and employers should be more open to adapting their work environments and educating staff so PWA can be hired and included in the workplace.
APHASIA IS A RETIREMENT PROBLEM
Aphasia affects retirement plans. The focus up until retirement has been working hard and saving money, so that those travels plans can turn into a reality during retirement, or that beach house that we’ve been dreaming about can be purchased. Then you have a stroke and you have Aphasia. Medical bills are expensive. You still have to put 2 kids through college. Travel plans are disrupted because financial needs change. The focus now shifts to recovery. Time needs to be spent on physical therapy and speech therapy. Travel funds are now being use to pay for a full time caregiver. Although you were looking forward to spending your retirement years with your wife, communication is so challenging it’s
become difficult for you to enjoy each other’s company in the same way you used to.
THE LESSON: Start living life to the fullest NOW. Don’t wait because tomorrow and
your future plans are not promised and are not a given. Aphasia can really disrupt retirement plans and the lifelong dreams that you’ve had for your family.
THE MESSAGE: There should be specific financial support and resources for people who need to support their children’s education under such circumstances. There should be targeted emotional support for individuals in the retirement phase of their life and are now
left searching for a purpose for the remainder of their living years.
APHASIA IS AN EMOTIONAL AND ISOLATION PROBLEM
Aphasia has a HUGE impact on one’s emotional health, and there is quite a LACK OF SUPPORT from mental health professions due to a lack of understanding and lack of specialty in the area of Aphasia. How can one participate in “talk therapy,” when they have significant challenges talking? There are ways around this, but AGAIN, it requires effort, education, professional collaborations, resources and support.
The emotional trauma and isolation Aphasia may cause should be obvious by everything mentioned above. When your career, your family and friend relationships, and your future dreams are forced to drastically change in the blink of an eye, AND you have difficulties discussing your emotions and frustrations, there is no wonder that emotional health is impacted.
THE LESSSON: Aphasia has a huge impact on emotional wellness. We need mental health support for people with Aphasia NOW. In fact, we needed it YESTERDAY.
THE MESSAGE: As an SLP, I find myself providing a large amount of the counseling
because I know how to best communicate with my patients, but have found that my patients need much more than what I am able to provide. They need a mental health professional who understands Aphasia, has been trained to provide supported communication through writing, gestures, pictorial support, etc. and can use their expertise to truly help the individual with Aphasia work through some of the emotional challenges they are experiencing. Mental health professionals should be trained and educated by SLPs or even people with Aphasia, so they can provide effective emotional support and interventions to those struggling with Aphasia.
I know I’ve covered A LOT here. And a lot of it might be a bit raw and a bit brutal. Make no mistake, there are a lot of people out there who living quite successfully with Aphasia. However, Aphasia can be very devastating, and there is so much more we need to do as an individual, as a professional, as an organization, as a government, as a nation, to improve the lives of those living with this disorder. Let people know Aphasia is not JUST a language problem….it is an invisible, family and friend, young and old, career, retirement, and emotional problem. So let’s get going on fixing the problems…one step at a time! WE GOT THIS!