Aphasia, My Foe
Aphasia sucks. It sucks the energy right out of me and I don’t even have it, my wife does. I cannot begin to imagine the hell she is going through. Perhaps you have had a dream in which you cannot speak; how very frustrating. Isabel’s major stroke three years ago at age 44 left her unable to speak, read, or write. She has made tremendous improvements in all three areas. She continues to improve. Considering that she started at zero, what abilities she has now is fantastic. She was a very high functioning linguist, fluent in Russian, Spanish, and English. She has regained maybe five or ten percent of the language skills she had; or is it more like two percent?
If she has just two percent of what God gave her I say halleluiah! Gimme that! I’ll take it. Sold. I want that. It’s wonderful. What an improvement. She can speak in short phrases, often using just one word to express herself.
“Idiot!”, that was the refreshing new word of the day yesterday. Being able to express herself verbally helps us both. It’s a huge time saver, even if I am an idiot. So what? I’m an idiot, music to my ears.
We tend to take so many things for granted, communication skills among them. I remember well one night at Scripps Memorial Hospital in Encinitas. Isabel had been released from the Intensive Care Unit and transferred to the Stroke and Brain Injury Rehabilitation Unit. It was Post Stroke Day 11, late night. A long day was coming to a close, but there was a problem, a simple problem really.
Think back to a time when you were cold, you had a chill about you which you just couldn’t shake. Maybe you were drifting off to sleep; you knew you needed another blanket on the bed, but you didn’t want to get up and get it.
What if your wife or husband was right there and you asked her to put another blanket over you. You ask for the blanket but she continues suggesting you might need other things. He or she is doing anything other than getting that damned blanket for you so you can finally gets some sleep. Would that not be frustrating? Wouldn’t it make you want to scream?
That’s exactly what happened to Isabel that first night in the Stroke Rehab Unit. Try as we might, Nurse Anna Lee and I could not figure out what was lacking. Isabel was coming unglued with frustration at our inability to grasp her meaning: she simply wanted another blanket. I can’t remember what sort of sound she was making to indicate “blanket” but it wasn’t anything helpful.
What would you do if you wanted a blanket but couldn’t speak? Easy! You hold up the corner of the blanket you already have. Through body language you could quickly indicate what you need. Right?, but not Isabel. At that point in her recovery, that advanced form of communication was beyond her.
Since she already had three blankets on her bed and it was already quite warm in her hospital room, Anna Lee and I did not clue in to Isabel’s last request before bed. After jumping through many hoops, offering to give and/or do anything for my wife, Anna Lee asked if it was yet another blanket that she wanted.
A wave of relief came to Isabel’s face. In less than a minute Anna Lee was back with another toasty warm blanket fresh from blanket warmer.
In the beginning I was hoping and praying for the day that my incredibly brilliant, tri-lingual, comical, cute, little Cuban born, school teacher of a wife would be returned to normal. That’s the folly of this lowly sole caregiver of a husband I am. Well, an idiot, as my wife made clear yesterday. The folly is to hope for a complete recovery to “normal”.
Three years after the stroke, the stroke that in many ways is a “family stroke”, as they say on the Stroke Network, this life is normal. It is not “back to normal”, it’s just normal. As crazy as it surely is now, this is the norm. This is how it is. I’ll take it. Thank you God for what it is. Much of this new life is, frankly, so tough for both of us that it makes one want to scream and run the other way. Yes, I accept this life the way it is. It’s so much easier to communicate than it was three years ago, three months ago, and even three days ago. She continues to improve. Life improves. New challenges arise. New solutions are found. Much learning is accomplished. Much knowledge is gained. Some knowledge is shared. We move forward.
As the old guy at Scripps told me as I commented on his positive outlook: “What are you going to do? It’s life.” He and two old friends were slowly making their way down the hall in the Stroke Rehab Unit. They were laughing like kids, reliving some fun time the three had shared was my guess. Outwardly, physically, they looked sort of worn out. Yet all three had a warm glow about them. Their faces were radiant with life, laughter, and love for each other.
“What are you going to do? It’s life.” I like that. It’s sort of like gem I found one day as I walk through the rehab unit. I’ll always treasure it.
In closing I would say “The Family Stroke” is more about change and learning and growth and adapting than it is about loss. I remember telling others shortly after Isabel’s stroke, that my chief hope, dream, desire, or prayer would be that a year down the road life will be better. Life will be different but it will be good. And so it is, better, good.