Here it is four o’clock in the afternoon and I’ve worked myself up into a major depressed state of numbness. I should be cleaning house for our company coming on Monday. But I can’t seem to move. Don’s favorite brother and sister-in-law are coming over to show us pictures from their camera safari trip to Africa. Also coming is our niece and her mother, another sister-in-law who is ten older than me. Our sister-in-law is also a caregiver to our niece who has MS. It shouldn’t be that way, should it, an elderly mother having to care for a daughter who was once independent, married and full of life.
Don starts speech class in a few weeks and as I usually do I decided to keep track of all the speech he is able to get out without prompting in a day's time. Doing this today wiped out my previously good mood. Here it is late afternoon and I’ve counted only sixteen words! In the pre-stroke era Don would have said that many and more words in a quarter of a minute.While I was helping Don finish up his shower this morning I did notice a sign of progress (if you want to call it that and I do). He was doing things that he usually counts out---putting on deodorant and baby powder with a puff---and instead of counting to ten he was only counting to five. It’s such a small thing to the outside world, but not really in the brain healing business. So I grabbed on to that straw and I hold it near because the small things are all we’ve got.
When Don is in the shower one of the words that always come up is “handicapped.” I think he says it then because the shower ritual is where he needs the most help during the day. Today I said to him, “You could try to be politically correct and call yourself ‘disabled.’” That suggestion was meant with an emphatic “NO!” Don thinks of himself as handicapped and there won’t be any cleaned-up version in HIS life. Message received loud and clear.After shower time we loaded the dog in the Blazer and took him to the pet store where dogs are welcome to do their own shopping. We can only do that when the budget can afford to blow an extra twenty bucks. They put all the good smelling treats, flavored rawhides and expensive toys down low where the dogs can grab them. Cooper knows the drill. He shops the pet store like he’s in a contest to see who can get the most merchandize in a basket before the buzzer goes off. It’s like he’s got a calculator in his head or he can read the bills in my wallet. When he hits twenty bucks, he has this satisfied look on his face that says, “Man that was fun. Let’s go home now.”
After the pet store, we picked up a few groceries and some take-out food---we had lots of opportunities for Don to get out spontaneous speech. And yet it was only sixteen lousy words. One word was “sh#t” said when a teenager walked by the car. I still don’t know what sin she was guilty of. Maybe just being young, cocky and oblivious to looking in the direction of senior citizens was as enough to get the ‘sh#t’ score out of Don. After playing twenty-one questions I gave up trying to figure it out. This is my life. It’s gone from stimulating conversations to figuring out which of fifty different meanings Don’s aphasic brain hangs on a single word said in different tones, with different inflections.
Some of the other words Don spoke today were: “Pee” for the obvious reasons. “Yes/no” sung over and over again like a song. “Cooper,” “doggie,” “hey!” and as stated up above, the numbers one through five. It’s all so sad! How many hours have we spent doing speech homework over the past five and a half years? Hundreds? More like thousands. Why couldn’t Don’s aphasia have fallen in the category of transient aphasia? The Aphasia Association says that fifty percent of all people with aphasia do have transient (aka temporary) aphasia that will disappear quite quickly after a head injury. There is nothing transient about Don’s aphasia. My head has accepted that Don will never hold meaningful conversations again but my heart still mourns that loss from time to time. My heart still wants to get out of the mommy mobile once in a while and just be me again with a friend by my side instead of a responsibility. I just want to be Don and Jean again and not speech student and queue master.
We get the occasional signs that it could happen, that speech could come back, but every growth spurt is followed by a quiet time when words are as shy as made-up fairies playing on the dewy forest floors of Ireland. The words come. The words go, and after awhile you don’t know what is real and what is just your vivid imagination wanting to believe in a fairy tale where only good things happen.
Jean Riva ©