When words fail – Life after stroke

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My mother was sitting on a chair when I walked into the house. With the television turned on, she stared blankly into the empty wall. The house looked messier than I remembered. There were strips of pills, test reports that laid scattered on every table. Clothes, thrown haphazardly out of the closets as if everyone was living out of their suitcases. She invited me in like I wasn’t visiting but had been there all along. She didn’t say much after that. Those days she never did. I was just glad she knew it was me.

The tiles of the kitchen walls had turned a dark brown from not being wiped clean probably in months. The maid who helped with the cleaning had refused to come after the one time she had to wash my mother’s soiled nightgown that got mixed up with the rest of the clothes. My stepfather and younger sister juggled between caring for my mother and doing daily chores.

I noticed the catheter tube underneath her nightgown that was attached to a drainage bag. She had no bladder control since her discharge and had lost more weight than I had ever seen. She had gone from being a neat freak to someone who couldn’t care less about taking a shower. Something changed in those two weeks I spent with her. Like a part of my body vanished into thin air.

You don’t notice people as they age. Certainly not your parents. And then one day, all of a sudden, they do. You see the grey hair, the deepening wrinkles, the crepey forearms, and wonder, why didn’t I see this coming?

It was in July of 2018 when I found out that my mother had a stroke. She had just turned fifty-three.

When blood flow to part of the brain is interrupted, and oxygen can’t reach it, a stroke happens. An ischemic stroke, the kind my mother had, occurs due to an obstruction or blood clots within a blood vessel supplying blood to the brain. Stroke survivors may also have right-sided paralysis or weakness.

While massive strokes usually result in long-term paralysis, coma, or even death, my mother had several mini-strokes. She escaped the severe consequences but now lives with prolonged expressive (Broca’s) aphasia – a condition that robs you of the ability to communicate. It is a disorder that results from damage to portions of the brain responsible for language and affects your ability to speak, write, and comprehend. It can also come on gradually from a slow-growing brain tumor or a disease that causes progressive, permanent damage.

In Aphasia, the connection between ideas and words is severed. No one quite knows how. Expressive aphasia, caused by damage to Broca’s area, located in the dominant frontal lobe of the brain, prevents a person from forming intelligible words or sentences. But has little or no effect on one’s ability to understand others when they speak.

People with receptive (Wernicke’s) aphasia can’t understand others or even themselves when they speak.

The speech of people with Wernicke’s aphasia is incomprehensible, as stroke survivors create sentences with words arranged randomly. For example, you might hear a person with Wernicke’s aphasia say: “My door sat through the lamp in the sky.”

Nonetheless, people with Wernicke’s aphasia, feel they should be understood, which is caused by the lack of awareness of their profound language impairment.

Global Aphasia is another type of aphasia caused when damage to the brain is extensive enough to involve both the Broca’s and Wernicke’s language areas. Survivors with global aphasia are unable to understand spoken language or to speak at all.

My mother repeatedly asks if I have eaten even if she knows I have when she really means to ask something else. We give her options to choose from, listing out things closest to what she might want to say depending on the context. She says yes when we’re right.

People with Broca’s aphasia may understand what other people say better than they can speak. They struggle to get words out, may speak in short sentences, and skip words altogether. A person might say, “Want food” or “Walk park today” or may repeat the same phrases to convey a different meaning every time.

As a listener, you can usually understand the meaning. People with this pattern of aphasia are often aware of their difficulty communicating and get frustrated. When my mother can’t find the right words, she admits it and surrenders. Her brain betrays her, gushing out syllables she doesn’t intend to say. Like when a song or a movie is at the tip of your tongue, you remember the tune or the plot but struggle to fetch the name from your brain’s memory bank. Now picture that happening every time you try to say something, anything. Or imagine saying “pigeon” when you intended to say “spoon”.

Naturally, as most diseases do, this came without warning. Looking back, I think it may have been a gradual process. Something I failed to notice during my biennial visits to my parents. My mother had several mild strokes before this one but, the only thing that seemed unusual to me was how she couldn’t carry on a conversation for too long. She seemed lost and kept quiet most of the time. I assumed that it was age and menopause or perhaps a combination of both.

When something is considered minor, you naturally tend to undermine the severity of its effects without any further investigation. Like if someone had a minor accident, or if someone was going through minor surgery, you wouldn’t worry about it too much because ‘minor’ meant that everything was under control. When my stepfather said it was a minor stroke, and the only problem she was suffering from was mispronouncing certain words, I believed him. I didn’t speak to her for nearly a week while she was in the hospital.

During that first phone call, she didn’t seem to understand anything I said. All I heard were words that sounded more or less like slurred gibberish. I remember walking for hours that night and booking the earliest flight home in the morning.

Over the next couple of months, she slowly started to get better. At first, she regained her mobility. She can now walk. Doesn’t need help going to the bathroom. And, also manages to cook sometimes. She hasn’t been able to read yet. But if you give her a pen and paper, she repeatedly writes her name. I also noticed her scribble unrelated words on several pages of a notebook that are not quite legible. Maybe in a failed attempt to write down what she intended to.

It is remarkable how her memory is still whole even if she has no control over her emotions. Everything that happened before the stroke is intact. She recognizes family members from old photographs with every tiny detail about them. Or things that happened in the past. It is the present and the future she has trouble contemplating.

The words in her vocabulary have expanded, but the repetition remains. When she can’t vocalize her thoughts, she says the same thing over and over again, louder, as if it would somehow amplify its effect. She complains about not having enough people to talk to but doesn’t want to see anyone. She has successfully alienated friends and family apart from my stepfather, my sister, and me. And that’s because it’s inevitable. She is now, more or less, a living paradox.

She came to live with me for a couple of months. Everyone thought some change from her daily routine would do her good. They were right. To some extent. She didn’t bat an eyelid on her first flight. Prancing her way through the airport as if she had never been sick. She was thrilled to go for walks every morning or the places I took her to every weekend. My mother loves the theater and did some play-writing when she was young, so that’s where we went. She showed enthusiasm when I bathed her, began to wear nicer clothes, and asked me to fix her make-up rather than sitting in her nightgown all day. She watched horror movies for hours while I was at work and even managed to do some chores. What she needed was more than medicines and therapy. She needed change.

After the first couple of weeks, though, things slowly started to deteriorate. Personality changes, depression, and mood swings are some of the after-effects that come with a stroke. The ones we don’t sign up for. Depression has a way of creeping into our family, passing down teeny-weeny symptoms through generations. Irritability, loss of interest, excessive crying, and the like. In my mother’s case, it was paranoia. She doubted everyone, nagged about everything. Nothing I did could please her. She complained about the food. About the lack of people. About my relationship. Raised her voice and started arguments when I denied her something. Whether it was the lack of sugar in her morning coffee or taking her phone away at bedtime. It didn’t matter. She was convinced we were all conspiring against her. Death was impending. And drowned in self-pity.

There is nothing that prepares you to for the courage it takes to witness your parents go through an illness. But when a disease takes complete control over a person, that’s uncharted territory. You are stuck caring for someone you don’t even recognize.

It doesn’t matter how or the many times you try to convince yourself that it’s the disease and not the person. I never thought I was capable of the aversion I felt towards her. Not admitting the kind of thoughts that flashed through my mind. The constant yelling, the crying, the tantrums are unbearable. Several times, while she was with me, I wished she had never come. I thought about how easy it was for her to slip into a coma. Then one day, she laughed about something silly. I think it was about her mispronouncing a word. Unable to contain her excitement. And it was clear that my mother is still there. Somewhere.

Usually, mild stroke survivors make a quick recovery and regain almost all their abilities in a few weeks to six months. But that hasn’t been the case with my mother. Her failed attempts at complaining about her husband are the only conversations we have had in two years. Nowadays, I tire easily. I snap and am irritable. I avoid taking her calls and limit talking to her once a day. Thinking, the further I am from the chaos, the more immune I am to feel. My patience is wearing thin. I’m not proud of it. I have to constantly remind myself that it’s not up to her. I have thought about keeping her in an elder’s home several times. But get dissuaded by the idea of abandoning her – a heady concoction of guilt, shame and apprehension.

Not a lot has changed in the two years after she left. She can’t be left alone because she can’t find her way back when she goes for a walk in the neighborhood. She listens more than she talks and substitutes one word for another. She cries incessantly over the phone while I try to make sense of her repetitive words. And, sends me texts that look like jumbled Scrabble tiles when we don’t.

A couple of days back, I found an old video clip – the trigger to finally writing this post. My sister, probably about eight or nine back then, practicing being a vlogger on the phone I got for her. My mother, getting ready to go out for dinner. She is pushing my sister out of the way as she looked for what clothes to wear. It feels surreal, almost like a dream. I see the smile on her face and wonder why she doesn’t look like that anymore. Perhaps a part of her body left her too. And I realize the part that remains, that’s what I have to hold on to.

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