Ten Things NOT to Say or Do to a Stroke Patient

This post is different. It comes directly from my book, "The Tales of a Stroke Patient." One of these situations just happened--again. I think it needs a re-print in my blog.
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People are funny, and I don’t mean in a ha-ha sort of way. They could be neurotic, bipolar, obsessive-compulsive, anxious, or agoraphobic, just to name a few types. Some of the ones who came to visit me had their own type: dysfunctional-when-meeting-a-stroke-patient.

Even though they had good intentions, in all fairness to me, some of them said and did things that were downright insulting, if I took the comments and body language personally. But I didn’t, for those people who took the time and came to visit me.

In all fairness to them, how could they know the right responses from the wrong. What it really comes down to is this: How do you speak to a stroke patient who’s had her life turned around in a 180-degree spin?

I made a list of the top ten things you should never say or do to a stroke patient, and I, too, have been guilty of most of them before having my stroke when I visited stroke patients. 
So having set the record straight, here goes.

1. Saying ‘good girl’, ‘good boy’, ‘good job’

Those are phrases you should say to your pets when they are being rewarded with a “Pup-Peroni” or Doritos’ chips. If you say them to me, I am not really being a good “anything.” I’m just sayin’. IT’S SORT OF CONDESCENDING.

 

2. Talking loudly

People have a habit of speaking loudly to foreigners and the sick. Just because they are from somewhere else, speaking loudly to a foreigner will not help get your point across. There is no hearing problem involved. The same thing applies to me. HOW DOES SHOUTING HELP?

 

3. Talking slowly

Talking slowly to a foreigner might be an asset. But talking slowly to me makes me feel mentally disabled. How would YOU like it if someone said, “How — are — you — feeling — today?” If I could, (and I wasn’t able to then), I would have talked quickly in response, possibly making them change their way of speaking. I REPEAT–HOW WOULD YOU LIKE IT?

 

4. Making faces at me

Stroke patients are difficult to understand at times, but please don’t squint, or turn your mouth to one side, or wrinkle your nose at me. Just ask me to repeat my statement, and if you still can’t understand, ask the question in a different way. After all, you’re the one with a full brain! SO USE IT!

 

5. Talking over me

I mostly listen, but when I get up the courage to speak, let me do it. Don’t interrupt me in the middle. In other words, LET ME FINISH!

 

6. Completing my sentence

Some people find the right word choice instantly, but it takes me a few seconds more. So please stop trying to fill in the blanks. WAIT! I’LL GET IT!

 

7. Giving me lists of things to do

If you give me a list of five or more things to do, I’ll may miss one. My brain is going, but the parts that are dead…well, simple died and there’s no hope of getting them back. Did you ever hear that heavy drinkers lose brain cells and the cells won’t be replaced? Same thing. YOU HEAR THAT, HEAVY DRINKERS?

 

8. Ignoring me as if I’m invisible

Once in awhile, at Rehab Y, I would see doctors on the outside. If I’m waiting at a new doctor’s office, for example, staring right at some person who’s in charge, the person invariably stares at my friend to find out what my friend wants, forcing me to shout and look like an idiot–which I am not. I shouted several times in person but even more on the phone. Some of the people just don’t listen and say their “shpiel” regardless if I object. “FOR CHRIST SAKE, I HAD A F***ING STROKE. GIMME A BREAK!” 

 

9. Saying I’m not moving fast enough
Once in awhile, people will say something to the effect, “Could I get by you?” and start moving before they even hear the answer. Their rhetorical question, because that’s what it really is, a few times cost me my balance. WHY ARE VISITORS IN SUCH A HURRY IN THE NURSING HOME?

 

10. Hanging up on me

A lot of operators hang up on me. They are nameless and they take advantage of that fact. But it doesn’t help me. WHY WON’T THEY WAIT?

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Currently, all these situations are still going on with me. Yes, I tell it all from my point of view, hoping that healthcare professionals will take advantage of my thoughts, learning why stroke patients are still frustrated. I am tenacious in my mission to educate the world about stroke survivors. Why do I use "patients" and "survivors" interchangeably? Because sometimes, people make me feel like a patient, even now, 6 years later.

Psychotherapy: It's Been My Life Changer

When one thinks about therapy for stroke survivors,
physical, occupational, and speech therapies are the obvious choices. All the rehabs provide the same, old thing. But what's the missing piece? Psychotherapy, of course! None offer that as routine.

My partner suggested mental therapy almost six years ago. But I didn't do it, not because I didn't think that I needed it after the stroke that caused maximum heartache to both of us and almost ultimate death to one of us; I didn't do it because I wasn't ready. That's the way it was then, and nobody, not even my partner, could change it.

Even if you think you're perfectly all right (which actually no one is) and especially if you think you're not, everyone should experience mental therapy sessions at least once in a lifetime. Most, if not all, insurance plans cover it. You can choose a licensed social worker, a psychologist, a psychiatrist, the latter being able to write prescriptions. But all of them give support with something, maybe a chain of somethings, you just can't figure out.


I've gone to a licensed social worker who is also a psychotherapist for about a year now, twice a week (after the year, once a week), 50 minutes per session, for disappointments and depression from failed relationships among family and friends, some having to do with the stroke, some not. The therapist will read this post and know that I am talking about her. To afford her anonymity, I will call her Sue.

Sue and I talk about a variety of things, like self-esteem, self-worth, and dignity, about life choices, responsibility, and values, about betrayal, rejection, and revenge. I am not nearly done, but looking back, I have made progress. When I first came to her, I was an open, walking wound, but she taught me how to give myself more value, to be a good person. But it turns out, according to Sue and me in collaboration, I was questioning my behavior before the stroke, like choosing the wrong men--angry like my father, narcissistic like my mother, bullying like my brother, or feeling revengeful thoughts against people I once cared about.

Though her office is upstairs, she meets me downstairs to accommodate me. The downstairs space has no comfy couch, no budding plants, no inspiring pictures. Just talk. It's enough for me. With a notebook on her lap, she writes occasionally and listens intently, speaking at random intervals.

Sue is my rudder for making most of my nonsensical thoughts sensical. But she's not a magician. Some of my thoughts get short shrift, dismissed, like the rubbish they are. "Seriously?" she often inquires. And every situation prompts more thoughts. She challenges me and I embrace the challenges. We are a good team--the tough psychotherapist who doesn't let me get away with bullshit comments and the willing patient, eventually choosing what I will become. But not tomorrow. I am a patient patient. I am willing to wait.

The Geek Squad and a Stroke Survivor: It's Like Apples Communicating with an Orange

I was desperate. The whole building had a wi-fi outage, meaning that FIOS knocked out my triple play: the television, the Internet, and the phone. And when it came back on, the television, the Internet, and the phone all worked, but the printer was off the network, aka offline. I knew because the blue light was blinking. I had a speech to give in 3 days at a local hospital and I had to key-in my notes and, consequently, print them. So I, in the current vernacular, was fucked.

I texted my son in Boston who works for Google as a network admin.

"How do I get printer back online," I whined.

"Um, who is this?" my son inquired. I thought he was joking. He was not.

"It's your mother, damn it. How could I get my printer to work? It went offline in the wi-fi outage." Frustration comes to me so easily, now that I'm a stroke survivor. 

"Nothing I can do. Call your Internet provider. Or Google it." Google it. He always ends the conversation that way.

So I texted my other son who works for IBM, here in my city, as a programmer with the same question.

"Everybody thinks [and by everybody he meant me] that I'm supposed to know everything about computers," he lamented.

"I just thought--." I couldn't even finish the sentence.

"I'll take a look when I come over on Sunday," he said because he knew that I really, really needed that printout for my speech.

One son in Google. One son at IBM. All 3 of us in IT, and nobody knew how to fix the wireless printer. Huh.

So Sunday rolled around and he took a look at the printer,  sitting himself down on the rocking chair placed strategically, for my benefit, in front of the printer that was 30 feet away from the laptop. He got the password from the router, yet no luck. He left and I called the Geek Squad.

The Geek Squad, originally independently-owned, was bought by Best Buy in 2008, and fixes your technical what-have-you--computers, printers, home theaters, for example--starting at $250 if you're interested in a one-time home repair and in a bind, emergently speaking, less if you could wait longer. They also have phone support which you could pay an initial fee of pennies short of $100 and $10.95 a month. You could cancel the monthly service fee at any time, but the $100 is theirs. They call themselves agents, like the CIA or FBI.

So I elected for the phone support. I mean, how hard would it be to get the printer online, you know? I called, and just so I wouldn't get anyone in trouble who's probably making close to minimum wage, the names I'm using have no connection to reality. Having said that, Richard was my agent.

"Hello. My name is Agent Richard. I know that problems with technology can be frustrating. [C'mon. He was reading off the script]. What kind of problems are you having?" the agent said in a monotonous tone, as if one problem a day was all that he could handle. I told him the story.

He didn't have to tell me that he was a member of the Geek Squad. I could just picture him. You know the kind, where if his house is on fire and flames are shooting through the roof, he might ask you to wait a minute because he has to finish the algorithm. And that ho-hum, flat voice slayed me.

"I'll have to charge you a fee first." [Of course].

After he accepted my card and the initial subscription fee, he took over my computer, after I approved, by his moving the cursor around. I carefully watched, but these guys were good. After he opened ten windows quickly, including 2 with code, I was lost. 

"You need to get a secret code," he said, adding a little intrigue to the mix, "and I'll type it in for you." A bunch more windows opened, and by now, we were thirty minutes in. "I'll transfer you to an engineer who knows about printers."

"Wait  a minute! I thought you were going to fix my printer," I implored, ready to explode from the passive voice. 

"You'll have to wait for the engineer," he said. So besides agents, they now had engineers, too. "You really shouldn't wait more than 40 minutes."

"Forty minutes," I screamed and I was exploding. "Do I have to be on the phone or can he call me back? Do I sit at the printer or the computer?" I was running out of power, on my cell phone, I mean. Two bars. But he had already gone and left me asking the questions to myself and listening to promos for the Geek Squad, over and over, that were playing in the background.

Richard returned 15 minutes later. "It should take a little longer."

"How much is a little?" I asked.

"Well, you don't need to be on the phone. He'll call you back."

I gritted my teeth and hung up. Three hours passed and I needed to get my mail in the lobby. So I stood up, left, and in the distance as I was halfway down the hall, my phone rang in my apartment. When I returned, I got the message the engineer left.

"Hello. This is Myron. I heard you wanted your printer fixed. I won't be here any longer today, but I'll pass the message on." I never got a return call. So the next day, I decided to write to the Geek Squad about the blue, blinking light. Here is the response I got from Phil:

"Sorry to hear that.  The blinking light indicates that the printer is no longer connected to the network – this can be due to a change in the network (a new router or Wi-Fi password), or increased network traffic causing a conflict with the printer’s IP.   Generally, the easiest way of getting a printer back on the network is through a temporary USB connection.  If you don’t have a USB cable, there should be other options for getting the printer online if the printer has a screen with menu options.  If you are available, please let me know so we can create a new session to get your printer back on the network and working with your computer."

I understood the message, but I just couldn't do a new session. Now, I was out of power, but I agreed to the session anyway because I am tenacious. My speech is tomorrow, but I haven't heard from Phil yet. I sent the text of the speech to my son and he's going to print it for me. 

The Geek Squad didn't come through, but geeks are like everybody else. It doesn't take much to just fuck up. And my printer? Don't ask.