Recovering from a Stroke

By Michael Mangis

As told to Cliff Williams


Edited by Cliff Williams from a recorded and transcribed conversation with Michael on March 22, 2024. He was in his early sixties when we talked.


On the Driveway

Michael was forty-six when the stroke occurred. “I was probably the healthiest I had ever been. I had been teaching college for the previous nineteen years, and was training every day for a half marathon. In fact, about a week before the stroke, a  heart scan showed that my heart and arteries looked good.

“But, also, a week before the stroke, I had been working out in the backyard, tearing down an old shed that had become rotten and was starting to fall down. I was pulling on a chain that hooked to a piece of the shed that had come loose, and I fell backwards against a wheelbarrow. It didn’t hurt, though I had twisted my neck. I got up and was just fine. No pain. Nothing indicating that there was a problem.

“Exactly a week later, I was doing the same work again out on the driveway, hauling some of the shed debris over to a dumpster I had rented. I was standing there—I didn’t feel anything, didn’t have a headache even—when suddenly I was lying on the ground and didn’t know why. I had not felt my legs give way or felt myself fall. I was abruptly on the ground.

“I felt good. I didn’t have any pain or any sense that something was wrong. In fact, I had a really strong sense of well-being. I was certain that everything was okay. 

“I thought, ‘Maybe I’m a little tired and dehydrated. I need to rest for a while.’ So I lay there, calmly, feeling absolutely certain that I was okay and that all I needed was for someone to help me get up.

“I had tried to get up, but all I could do was roll over in one direction. I didn’t realize my left side was paralyzed and useless. There was a little weedy tree that had started to grow in the driveway that I was able to reach with my right arm. I tried to pull myself up with it, but one arm was not enough.

“Much later, I realized I had had something called anosognosia, which is the inability to be aware of your limitations or disabilities. It comes with some kinds of psychological and physical trauma, but especially with strokes in the right side of the brain, which is what I had.*

“I was half paralyzed and did not know it. I couldn’t even look at my left side and say, ‘My left arm and hand aren’t doing anything to help me get up.’ 

“There was no one around. The neighbors had been outside earlier, but they weren’t then. My wife, Patti, was at work. My phone was in my shirt pocket, and I was able to reach it with my right arm. I tried to call Patti. But I couldn’t figure out how to do it. The phone’s screen looked funny.

“I did manage finally to call her by pushing buttons where I knew they were. I left a voicemail message that I thought was asking her to call our neighbors to ask them to come over and help me get up. But she said that when she got the message, it was garbled and she couldn’t understand what I was saying. 

“I think I spent about an hour on the driveway. I was certain I would be okay if only I could get up. Patti came home. She was going to call the ambulance, but I said, ‘No. no. Just help me up. That’s all I need. You don’t need to call anyone first.’

“She tried but couldn’t lift me, because I’m too big for her to pick up. And I couldn’t help her. I kept flopping back down.

“After a bit, she glanced at the left side of my face and instantly became shocked and terrified. I knew then that I had had a stroke, because she had seen that the left side of my face was drooping. 

“I went from an absolute certain, ‘I’m fine. I only need to get up,’ to, ‘Oh, no. I’ve had a stroke.’ And I suddenly realized my life was in danger and that it had been ever since I had fallen down. I needed to have an ambulance.”


In the Ambulance

It came quickly. “When the EMTs came over to put me onto a stretcher, they said, ‘Yeah. It looks like you’ve had a small stroke.’ That began to sink in. I thought, ‘I may die today.’ 

“I asked, ‘Do you have that magic stroke drug—tPA?’**

“One of the EMT’s replied, ‘We’re not allowed to carry it in the ambulance. But I’m sure they’re getting it ready for you at the hospital.’ 

“After it occurred to me that I might die, I thought, ‘I guess I’ll find out whether my Christian faith is true, which says that I will be meeting Jesus after I die.’ I didn’t feel absolutely sure that I would, though I felt confident about it. So I wasn’t afraid of dying. And I was glad when I realized that that was my reaction to the real prospect of death.

“I had developed a discipline that whenever I was in a situation in which things became different from what I was hoping or expecting, I thought, ‘I wonder what God has in mind for this.’ So all the way to the hospital, I kept going over and over that. I expected that whatever happened, it would be something God would use for my good.”


At the Hospital

In the emergency room, Michael’s head was in a great deal of pain. “The people there kept asking me to cough up phlegm, because even my muscles for swallowing had become partly paralyzed, which happens with a left-side paralysis. You have to get up the fluid before you choke or develop pneumonia.

“I gradually got stable enough to go to the intensive care unit, and I thought things were looking better. But in the morning, I started vomiting uncontrollably. They said that that’s a sign my brain was swelling. So they called Patti and told her to come, because it was a turn for the worse. They didn’t know whether I was going to make it.

“That’s when the surgeon said, ‘We need to do a craniotomy.’ In that, you cut out part of the skull to allow some of the pressure to be released, because the brain swells after a stroke and there’s no room for it to do that. It starts to crush itself. That’s what kills people after a stroke or a concussion.

“My wife and I agreed to the craniotomy. I went under anesthesia, and they took out a two-by-three inch piece of my skull about three inches above my right ear, nearest to the place where the swelling was worse. They put it into a Ziploc bag and then into a freezer. 

“The huge swelling on that side of my head looked very strange. But they said it was only fluid: ‘It’s not your brain sticking out.’ I also had to be fitted for a helmet to put over the swelling, because if I ever bumped it, the shock would go straight to the brain.”


Coping with Vulnerability and Dependence

Immediately after Michael had the craniotomy, he felt an acute sense of vulnerability. “I felt weak and small, like a young child.

“The hospital people explained to me that everyone who has a craniotomy feels that way until the piece of the skull is put back: ‘At an unconscious level, your body knows you are vulnerable. If something hits your brain, you could die. When your skull is complete again, you will feel back to normal.’

“At some point after the surgery, I needed to go to the bathroom for a bowel movement. It took four or five nurses and two orderlies to pick me up and put me onto the commode near my bed. The nurses went out of the room, and the two orderlies, young men, were still standing there. One said, ‘Are you okay?’ I said, ‘Yes.’ He handed me a roll of toilet paper, after which the two walked out. I turned and tried to wipe myself when I was done. But I tipped over, and the commode and I fell to the floor. 

“I had caught myself with my right arm, so I didn’t hit the floor hard. I was able to reach the call button, and the nurses came in, cleaned me up, and got me back into bed.

“Falling off the commode was extremely humiliating. I definitely did not want to admit that I couldn’t take care of myself. I was a forty-six year old man, and I knew how to wipe my own butt. But I had to recognize that I was not a competent, independent adult anymore. I was like a little child in some ways. 

“That was hard to admit, not only because of the anosognosia, which made me feel okay, but also because of cultural expectations. Part of growing up as a male in our culture is that you have to learn how to be independent. You have to push yourself not to need anybody. You have to go above and beyond.

“So in the regular hospital and the rehabilitation hospital, there were times when I wanted to push myself. I fiercely wanted to do things my body could not do and which were dangerous to me.

“Another time I was in my room in a wheelchair with a belt around my waist in case I fell asleep or something. I decided to go to the bathroom by myself. I thought, ‘I’m a man. I can do this.’ I unbuckled myself and stood up, took a step, and fell with a crash. I made enough noise that the nurses heard me and came to get me. My physical therapist was very upset with me about that.

 “After several weeks, they said it was time to put back the piece of my skull that had been removed. Before I went under, they showed me the cold piece of bone in the Ziploc bag. When I came out of the surgery, I felt dramatically different. I felt whole again. I felt that I was going to make it and that everything would be okay.”


On Dying Well

Michael learned several things from his stroke. “I have become more aware that I am going to die. I’m not afraid of it as much as I used to be. At some level, I am afraid, because I’m human. But what I want is to be more afraid of an unlived life. I don’t want to get to the end and realize I could have lived better. I do not want to have to admit that I could have been more present and more aware.

“I know people who have regrets and become angry and controlling as they get closer to death. But the ones who die well are the ones who have been humbled by life. They no longer think they are in charge and can make everything the way they want it to be. They no longer fight against being disabled.

“One of the nurses in the hospital who helped me was someone who lived near my house. She asked, ‘Is it okay for me to help you?’ I said, ‘Yes. This is a community. You can be part of it. You can be one of the ones who helps me sit on a commode.’

“I want to be more willing to be helped. I want to recognize that I need to be helped. Being so vulnerable in the hospital and tipping over on a commode showed me that that is how it is going to be for me again, if I live long enough. When that happens, one of the gifts I can give people is graciously to receive their help and be thankful for it. I don’t want to resist or feel ashamed that I need help. I want to become more of the kind of person who can live with limitations and disability without being angry or upset.”


Me and My Body

“I am aware now,” Michael continued, “that there’s no such thing as me and my body. There’s just me. If something happens to any part of my body or brain, it changes who I am. My body is not a separate thing. I am not simply taking care of my body when I do things such as eating right or exercising. I’m taking care of me.

“This dramatically new conception of myself a more holistic conception of what people are. That is what I felt firsthand when I was in the hospital. 

“Adopting this new conception of myself has also changed how I think of heaven. When I was growing up in church, I got the notion that when we go to heaven, we won’t have our bodies anymore. We’ll just be floating spirits, whatever they are.

“But now I believe we will have bodies in heaven. This is what resurrection means in the Bible and the Apostle’s Creed.*** I don’t know whether we will have the same molecules or whether God will put together a new body. The important thing is that we will have real, concrete bodies, not something abstract and mystical.

“The same is true, I believe, of Jesus. Easter, which is coming up soon, is a celebration of Jesus coming back to life with a body. And his having had a body means he understands being weak and vulnerable. That makes a difference to me, because I have been weak and vulnerable.”


Certainty

Michael now is suspicious of the feeling of certainty. “That suspicion started less than a year after the stroke. From time to time, I felt anger well up inside me when I couldn’t do something I used to be able to do. After a while, I realized that the anger was really directed at the certainty I felt at being okay when I was lying on the ground.

“If I had not had that feeling of certainty, I would have been able to see that my left side wasn’t working. I would not have wasted precious time in which I could have been treated. An ambulance could have come much sooner, and I wouldn’t be disabled as much as I am today. 

“A neurologist who has studied the feeling of certainty has shown that it is an emotional brain state.**** When I was certain that nothing was wrong with me as I lay on the driveway, it wasn’t a conclusion I had come to but was a brain state that had been artificially inflicted on me.

“For a time I was angry at God: ‘Why did you let the stroke inflict a lie on me, telling me I was fine when I wasn’t?’ 

“Since then, I have been on a quest to search out and destroy certainties in my life. I have been realizing how many things I have thought were certainly true that I found out later were totally untrue. I no longer trust those certainties.

“I am especially revisiting what I picked up from church when I was growing up, things I was told I had to believe with certainty. I do not want to feel certain about my faith merely because somebody told me I needed to feel certain about it.

“Even though I don’t believe in certainty anymore, I do believe in confidence. It comes from evidence, reasoning, and facts, unlike the sense of certainty. It can also be questioned, whereas the feeling of certainty can’t.

“My stroke has prompted me to look at things honestly and to examine them truthfully so that I can become confident about them, not emotionally certain about them. I do not want emotional brain states to be the basis for making decisions in my life.”


Notes

* “Anosognosia is a neurological condition in which the patient is unaware of their neurological deficit or psychiatric condition. It is associated with mental illness, dementia, and structural brain lesion, as is seen in right hemisphere stroke patients.” “Anosognosia,” National Institute of Health, National Library of Medicine: https://www.ncbi.nlm.nih.gov/books/NBK513361/.


** Tissue plasminogen activator. “When administered quickly after stroke onset (within three hours, as approved by the FDA), tPA helps to restore blood flow to brain regions affected by a stroke, thereby limiting the risk of damage and functional impairment.” “Tissue Plasminogen Activator for Acute Ischemic Stroke,” National Institute of Neurological Disorders and Stoke (NINDS): https://www.ninds.nih.gov/about-ninds/what-we-do/impact/ninds-contributions-approved-therapies/tissue-plasminogen-activator-acute-ischemic-stroke-alteplase-activaser.


*** I Corinthians 15

From the Apostle’s Creed: “I believe in the resurrection of the body and the life everlasting.”


 **** Robert A. Burton, MD, PhD, Abstract of Robert A. Burton, On Being Certain: Believing You Are Right Even When You’re Not (St. Martin’s Griffin, 2009): https://www.rburton.com/_i_on_being_certain_i___believing_you_are_right_even_when_you_re_not_63166.htm#:


© 2024 by Cliff Williams

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