Bruce Willis and Aphasia
Willis has retired due to a diagnosis of aphasia. You can look that up in twelve thousand different places; the official site is here. After I read it, I found that I knew less than before I read it. So, I’ll give you a first-hand glimpse.
Communication typically involves words. With aphasia, the patient has trouble with expressing or receiving thoughts, or both, as a result of being unable to access words. I have expressive aphasia, and it is one of the most difficult things to deal with. I am frustrated beyond imagination, trying to find the term, or at least a way to describe it, somewhere in my brain. There are long pauses in conversations or texts, as I stumble from term to term, definition to definition, until the other person simply gives up.
This affects every relationship I have. My friends and acquaintances cannot rely on me talking or writing to them; several have told me they are sure it will improve with time. It doesn’t, it only gets worse. I’ve had it since a stroke at the age of 30 in 1978. I recall sitting across from my cardiologist trying to come up with the term “cardiac arrest.” I sat there for three full minutes trying to get the words out. It was beyond frustrating to me. Fortunately, my cardiologist is quite laid back.
My wife usually walks away while I’m struggling. That is frustrating to me, but cannot be as frustrating as it is to her to stand in one spot waiting on a word that may never come. My oldest daughter assumes I’m not engaged and hangs up on me. My younger daughter, fortunately, is a natural empath, and can often infer from micro-behaviors the general nature of what I’m trying to convey.
One coping mechanism is to pack a lot of meaning into a very few words. I was asked by a physician about how something happened; my response was (eventually) “idiopathic,” meaning of unknown origin. I went to a drug store to pick up something one time, and my wife texted me with a question about my progress in getting the item. I replied “2,” which eventually was decoded as “I found one and am bringing it with me; we already have one at home, so now we will have two.”
I am wheelchair-bound, but am able to get around the house with the use of a walker. It is often a major undertaking to put down the leg rest of my recliner, push myself into a standing position, grab the walker and go to the refrigerator only a few feet away. If my wife or younger daughter is already in the kitchen, I will often ask them to bring me what I wish. Sometimes I’m unable to find the words for “Please bring me a can of pepsi,” so I simply hold the can up in the air until someone notices it.
As she got closer to the end, my mother would often be unable to express what she wanted to say, nor to understand a response. She had global aphasia, an inability to find words to express herself, or to understand the meaning of the words she was hearing. This latter inability is often called receptive aphasia.
A second stroke in 2014 worsened the aphasia, and my late-onset hydrocephalus has caused everything to get worse. A simple document such as this one can take me hours to type. I can appreciate Mr. Willis’s problem. Memorizing lines is of no help if you can’t get the memorized words out. Many expect that I don’t speak, but surely can write out my answers. I can’t do that. If I cannot locate the word to speak it, that means that I can’t locate the word to write it, either.
My husband, a disabled Vietnam veteran, had many difficulties--some like yours. This coincided with my working from home so I was present all the time. He was a big person and I am a small person. He made me promise no matter what if he fell I would call 911 and not try to help him. He said, "I would break you if you try to help me and I need you not to break." I was fortunate he could express things as his illness progressed because it helped me not be frustrated. You may have difficulty but you do on this substack clearly articulate so you have that advantage. Your acuity is essential. It takes a lot of restraint by those with you not to try to help with everything. So you knowing when and them understanding I remember that so well. My husband had AO related illnesses and did die of one of them, but understanding the progression of the various symptoms was central to some balance in daily life.
Good heavens, Bill, you certainly have your hands full. Prayers are being said.